The Official Autism 101 E-Book: Autism Today Experts

Discover the awesome in Autism!

The Official Autism 101

E-Book: Autism Today

DISCOVER THE AW

ESOME IN AUTISM!

The Official Autism 101 Manual ©2006 Autism Today

Autism Today

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Sherwood Park, Alberta

Canada T8A 3X3.

< www.autismtoday.com>

All contributors hold the copyright to the work they have contributed to this e-book and are solely responsible for the views expressed in its content. All trademarks and registered trademarks are the property of their respective owners.

Cover design: Dunn + Associates Design

Interior design & typesetting: Folio Bookworks

ISBN: 0-9724682-8-5

ISBN-13: 978-0-9724682-8-2

Publisher’s Cataloging-in-Publication Data

The official autism 101 manual / [created and compiled by] Karen L.

Simmons. -- Alberta, Canada : Autism Today, c2006.

p. ; cm.

ISBN-13: 978-0-9724682-8-2

ISBN-10: 0-9724682-8-5

Contains contributions from professionals in the autism

community.

Also available in electronic book format.

Includes bibliographical references.

1. Autism. 2. Autism--Diagnosis. 3. Autism--Treatment.

4. Autism--Psychological aspects. I. Simmons, Karen L. II. Autism

101 manual.

RC553.A88 S56 2006

616.85/882--dc22

0604

The Official Autism 101 E-Book Contents

ii

Dedication—To the real stars of autism

iii

Introduction—Why Autism Today is providing this e-book

1

Chapter 1—What exactly are autism spectrum disorders?

3

What is autism? ■ Lori Ernspberger, Ph.D.

6

What is Asperger’s Syndrome? ■ Dr. Tony Attwood

8

Savant syndrome ■ Darold A. Treffert, MD

23

Chapter 2—Early diagnosis and best outcomes

24

Early detection of autism syndrome disorders ■ Rebecca Landa, Ph.D.

29

Early detection of autism syndrome disorders ■ Terrylynn Tyrell

37

Medical testing for autism, Asperger’s Syndrome and PDD ■ William Shaw, Ph.D.

42

Study: Pediatricians do not always recognize ASD symptoms in infants ■ Lawrence P. Kaplan, Ph.D.

43

Chapter 3—Historical perspectives on autism

44

How autism has been understood ■ Lawrence P. Kaplan, Ph.D.

47

Chapter 4—Dealing with autism

49

Addressing behavioral challenges for individuals with ASD ■ Lori Ernspberger, Ph.D.

56

Addressing masturbation ■ Mary Wrobel, SLP

58

Monitor and chart your child’s development ■ Lawrence P. Kaplan, Ph.D.

61

Chapter 5—Exploring the relationship between autism and ADD/ADHD

63

What is the the difference between Asperger’s Syndrome, ADD/ADHD? ■ Sharon A. Mitchell, BA, B.Ed., MA

65

The difference between Autism, Asperger’s Syndrome, ADD and ADHD ■ Diane Burns

67

Chapter 6—Why is autism on the rise?

69

Why is autism on the rise? ■ Stephen M. Edelson, Ph.D.

71

Why is autism on the rise? ■ Daniel Hawthorne

73

The belief in vaccines ■ Sherri Tenpenny, DO

79

Chapter 7—What is all the buzz about mercury?

81

Evidence of harm ■ David Kirby

85

Chapter 8—Where do I begin when autism has been diagnosed?

87

Advice for parents of young autistic children: spring (2004) ■ James B. Adams, Ph.D.

100

When parents first hear the diagnosis of autism ■ Thomas McKean

101

Where do I begin if someone I know has been diagnosed with autism? ■ Daniel Hawthorne

102

The color of autism ■ Toni Flowers

103

Chapter 9—Helping a parent cope emotionally with a child’s

autism diagnosis

105

The difference between heaven and earth ■ Ellen Notbohm

108

Helping a parent cope with a child’s diagnosis of autism ■ Karen Siff Exkorn

113

Chapter 10—Family matters: helping siblings and extended families

114

Helping others understand the one you love ■ Lisa Simmons

118

Siblings of children with autism ■ Sandra L. Harris, Ph.D.

121

Chapter 11—How to deal emotionally with spousal and other

relationships around autism

122

How to deal emotionally with spousal and other relationships around autism ■ Nicholas Martin, MA

123

Dealing emotionally with relationships around autism ■ Daniel Hawthorne

125

Chapter 12—Creating positive parent–physician partnerships

127

A parent–physician team approach ■ Lawrence P. Kaplan, Ph.D.

131

Chapter 13—Helping the child with ASD gain social skills

133

Social skills training for children with Autism Spectrum Disorders ■ Jed Baker, Ph.D.

140

Learning styles and autism ■ Stephen M. Edelson, Ph.D.

142

Idioms and metaphors and things that go bump in their head ■ Ellen Notbohm

145

Chapter 14—Adolescents with autism and Asperger’s Syndrome

146

Preparing for the essential tasks of the real world ■ Teresa Bolick, Ph.D.

163

Chapter 15—Autism coaching: what it is and how it can help you

164

Autism coaching ■ Barry Bettman, PCC Professional Certified Coach

177

Chapter 16—Typical areas of strength, building self-esteem and

positive tools for those on the autism spectrum or with ADHD

178

Genius may be an abnormality: educating students with Asperger’s Syndrome or high functioning autism ■ Temple Grandin, Ph.D.

185

The Strongest Urge of All ■ Karen Simmons Sicoli, CEO

189

I Am . . . for mothers of children with disabilities ■ Michelle M. Guppy

191

Chapter 17—Treatment methodologies and therapies

192

Medication management in Asperger’s Syndrome and high functioning autism: General guidelines ■ Keith McAfee, MD

197

Evaluating the effects of medication ■ Temple Grandin, Ph.D.

199

Navigating the sea of approaches for working with children on the

autism spectrum ■ Stephen Shore, M.Ed

205

The Miller Method®: A cognitive-developmental systems approach for children on the autism spectrum ■ Arnold Miller, Ph.D.

208

The Berard method of auditory integration training (AIT) improves learning, language and social skills ■ Sally Brockett, M.S

211

Pacific Autism Centre: Applied Behavioral Analysis ■ Laura Cook, President, Pacific Autism Center

213

The SCERTS Model™: A comprehensive educational approach ■ Barry M. Prizant, Ph.D., CCC-SLP

219

Diet therapy ■ Lisa Lewis, Ph.D.

223

Autism and nutrition: resources available ■ Laurence A. Becker, Ph.D.

226

Peace and calm for Special Needs ■ Gwen Randall-Young

228

Music therapy and autism ■ Jennifer Buchanan

231

Reaching the child with autism through art ■ Toni Flowers

233

The simple but most overlooked solution to your child’s reading problems ■ Pat Wyman, MA

237

Scotopic sensitivity syndrome and the Irlen lens system ■ Stephen M. Edelson, Ph.D.

239

Chapter 18—Planning for the future

241

Life Map ■ Anne Addison, MBA

244

Planning for the future ■ Sharon A. Mitchell, BA, BEd, MA

247

Chapter 19—By and for people on the autism spectrum

249

My mother nearly died from German Measles ■ Veronica York

252

And then, they’ll see my mother ■ Jessica “Jazz” Summers

255

My story ■ Daniel Hawthorne

257

Light at the end of the tunnel ■

James B. Adams, Ph.D.

Anne Addison,MBA, NHA

Anthony Attwood, Ph.D.

Jed E. Baker, Ph.D.

C

Laurence A. Becker, Ph.D.

Barry Bettman, PCC Professional Certified Coach

O

Teresa Bolick, Ph.D.

Sally Brockett, MS

N

Jennifer Buchanan, BMT, MTA

Diane D. Burns

T

Laura Cook

Stephen M. Edelson, Ph.D.

R

Lori Ernsperger, Ph.D.

Karen Siff Exkorn, BA., MA

I

Toni Flowers

B

Temple Grandin, Ph.D.

Michelle M. Guppy

U

Sandra L. Harris, Ph.D.

T

Daniel Hawthorne

Lawrence P. Kaplan, Ph.D.

I

David Kirby, Journalist

N

Rebecca Landa, Ph.D., CCC-SLP

Lisa S. Lewis, Ph.D.

I

Nicholas Martin, MA

G

Keith McAfee, MD

Thomas A. McKean

Arnold Miller, Ph.D.

A

Sharon Mitchell, BA, BEd, MA

Ellen Notbohm

U

Barry M. Prizant, Ph.D.

Gwen Randall-Young, MEd Cpsych

T

Bernard Rimland, Ph.D.

William Shaw, Ph.D.

H

Stephen Shore, AbD

Lisa Simmons

O

Karen L. Simmons, CEO, Author

Jessica “Jazz” Summers

R

Sherri Tenpenny, DO

Darold A. Treffert, MD

S

Terrylynn M. Tyrell, Med

Mary Wrobel, CCC, SLP

Pat Wyman, MA

Veronica York

i

Dedication

To the real stars of autism

because of your contributions.

I

A great big thank you goes out to all the

dedicate this resource first and foremost to my

children, Kimberly, Matthew, Christina, Jonathan,

Stephen and Alex. They are all my favourites! This

wonderful authors and presenters who have

book sets out to share the wealth of information

contributed to this resource. Your commitment and

and resources I have found and used to help my two

perseverance in discovering help for this special group

special needs children, Jonathan and Alex. Though

of people is what is moving the entire field forward.

there have been many challenges over the years, I

One of my goals is to facilitate the change of views

wouldn’t have my children any other way. They are

and attitudes that people have about autism around

who they are—whole, loving and complete, exactly as

the world. It is important to help people see that

they are. Jonny’s humour and wit make me laugh. His

autism is a unique condition, with many symptoms

ability to focus and concentrate enables him to hone

that can be overcome through intervention, rather

in on what he enjoys most while offering him hope

than as a negative affliction, as it was viewed in days

for the future. Alex’s persistence will carry him far in

past. Regardless of our circumstances, we can choose

life and certainly keeps us all on our toes! So much for

to see peace within it. By doing so, the quality of

growing old quickly!

everyone’s lives will become more positive and loving.

I also dedicate this resource to all of Jonny and

The person with autism is in your life for a reason.

Alex’s peers with Attention Deficit Hyperactivity

Perhaps this person is there to teach you love, patience

Disorder (ADHD) or autism. You are the real shining

and understanding. If you are the person with autism,

stars of autism and you offer a unique perspective that

you also have your lessons to learn. Maybe they are

enriches the fabric of human kind. I like to say we

to accept yourself, explore your strengths and learn

must all “discover the awesome in autism,” and this is

to love and laugh more easily. No matter what we are

what Autism Today is all about. In fact, many leading

all here to experience, I challenge each and every one

individuals may have had high functioning autism,

of you to look into your hearts and ponder what you

including Albert Einstein, Marie Curie and Thomas

are here to learn and then seek to fulfill your true gifts

Jefferson, to mention a few. Our world is much better

and strengths. Thank you for being you!

ii

Introduction

Why Autism Today is providing this e-book

comments. They will help us keep this book a vital,

The purpose of this “first of a kind” publication is

to help people, no matter what their role is in the

easy-to-use reference for those with autism, their

autism field, to find the resources they need. Parents,

families, professionals, educators and anyone else

family members, educators, professionals and people

interested in learning more about autism and some

on the autism spectrum can learn to understand

attention deficit disorders.

this condition and what they can do to reach for the

As a parent of a child with autism, author and

best possible outcome for the person with autism. In

educator of sorts, I have hosted many conferences

this book you will learn about where to start, what

with world-class speakers in North America and have

interventions are available and even glimpse the future

travelled to other conferences gathering a great deal of

by hearing what people on the autism spectrum have

information. I have sold copies of leading publications

to say.

in the autism field, while gaining knowledge along

This book aims to provide current, relevant

the way. At many of the conferences I have hosted, I

information in a way that is easy to understand and

am asked to recommend resources for behavior, social

user friendly. The e-book format gives us an ability

skills, communication and sensory issues.

to update the book’s content. As a “living book,” this

Throughout this book I will be doing just that,

one will always be alive with current information,

from my own personal experience, of course, and

providing or directing you to critical resources

from the recommendation of many Autism Today

describing new discoveries, treatments, scientific

members. I feel my unique perspective can help many

updates and personal accounts—all while helping to

parents, educators and professionals find what, in

raise awareness of this mysterious condition and bring

my viewpoint, are the true gems of knowledge and

its mysteries to light.

understanding that they are seeking. I hope this book

We welcome your feedback, suggestions and

helps each and every one of you tremendously.

— Karen L. Simmons,

Founder of Autism Today

iii

Chapter 1

What exactly are autism

spectrum disorders?

CHAPTER 1

1

What is autism?

Contributing Author Lori Ernspberger, Ph.D., Special Education, Indiana University—An expert in the field of autism and behavioral disorders, Dr. Ernspberger has over 17 years of experience as a public school teacher, administrator and behavioral consultant. She owns and operates Autism and Behavioral Consulting, a firm based in Henderson, Nevada, that works with school district personnel and parents to provide effective educational programs and best practice strategies for students with autism and behavioral disorders. Dr.

Ernspberger’s book, Keys to Success for Teaching Students with Autism, has been very well received since its publication in 2003.

Resources and links— Lori Ernsperger, Ph.D. suggests visiting her Autism Today website to learn about her other products and services: Visit <http://ernsperger.autismtoday.com> today! (*Please note, don’t put in the www) You can contact Dr. Ernsperger by writing <lorierns@netnevada.net>.

Autism refers to neurologic disorders involving

basis is believed by researchers to be highly complex,

serious impairment of abilities to interact and

probably involving several genes acting together.

communicate social y, and repetitive and restricted

Several outdated theories about the cause of autism

interests and activities. Classic autism is at one end of

have been proved false. Autism is not a mental il ness.

the autism spectrum. This is associated with delayed or

Children with autism are not unruly kids who choose

absent spoken language, and sometimes with cognitive

not to behave. Bad parenting does not cause autism.

delay. Asperger’s Syndrome is at the other end of the

Furthermore, no known psychological factors in the

autism spectrum. It is not associated with delayed

development of the child have been shown to cause

language, cognitive development or self-help skil s.

autism.

General y, people on the autism spectrum have

great difficulty making friends and understanding

How is autism diagnosed?

social rules. They typical y have one or a few interests,

activities or physical movements, which they engage

There are no medical tests for diagnosing autism.

in repeatedly. They may or may not have mental

An accurate diagnosis must be based on observation

retardation and/or a marked delay in language,

of the individual’s communication, behavior and

although even those using superficial y “normal”

developmental levels. However, because many of the

language wil have problems using language in a

behaviors associated with autism are shared by other

social y fluent and appropriate way.

disorders, various medical tests may be used to rule

out or identify other possible causes of the symptoms

What is the cause of autism?

being exhibited.

Diagnosis of autism is difficult for a practitioner

Researchers worldwide are devoting considerable time

with limited training or exposure to it. Since the

and energy to find an answer to this critical question.

symptoms of autism vary so much, a child should

Medical researchers are exploring various explanations

ideal y be evaluated by a multidisciplinary team

for the forms of autism. Although a single specific

that may include a neurologist, psychologist,

cause of autism is not known, current research links

developmental pediatrician, speech/language

autism to biological or neurological differences in the

therapist, learning consultant or another professional

brain. In many families there appears to be a pattern

knowledgeable about autism.

of autism or related disabilities. This suggests there is a

A brief observation in a single setting cannot

genetic basis to the disorder, although at this time no

present a true picture of an individual’s abilities and

gene has been directly linked to autism. The genetic

behaviors. Parental (and other caregivers’) input and

3

The Official Autism 101 Manual

developmental history are very important components

Manual of Mental Disorders (DSM-IV) in 1994 as

of an accurate diagnosis. At first glance, some people

a separate disorder from autism. However, many

with autism may appear to have mental retardation, a

professionals stil consider Asperger’s Disorder to be a

behavior disorder, problems with hearing, or even odd

less severe form of autism.

and eccentric behavior. To complicate matters further,

What distinguishes Asperger’s Disorder from

these conditions can co-occur with autism.

autism is the severity of the symptoms and the absence

Sometimes professionals who are not knowledge-

of language delay. Children with Asperger’s Disorder

able about the needs and opportunities for early in-

may be only mildly affected and frequently have

tervention in autism do not offer an autism diagnosis

good language and cognitive skil s. To the untrained

even if it is appropriate. This hesitation may be due

observer, a child with Asperger’s Disorder may just

to a misguided wish to spare the family. Other times,

seem different.

wel -meaning professionals have misdiagnosed autism.

Children with autism are frequently seen as aloof

Difficulties in the recognition and acknowledgment

and uninterested in others. This is not the case with

of autism often lead to inadequate provision of

those with Asperger’s Disorder. Individuals with

the services required to meet the complex needs of

Asperger’s Disorder usual y want to fit in and have

individuals with autism. An accurate diagnosis and

interaction with others; they simply don’t know how

early identification of autism provide the best basis for

to do it. They may be social y awkward, because they

building an appropriate and effective educational and

do not understand conventional social rules, or may

treatment program.

show a lack of empathy. They may engage in limited

eye contact, seem to be unengaged in a conversation

and not understand the use of gestures.

What is Asperger’s Disorder

Interests in a particular subject may border on

(Asperger’s Syndrome)?

the obsessive. Children with Asperger’s Disorder

Asperger’s Disorder—also known as Asperger’s

frequently like to col ect categories of things, such

Syndrome—is one of five Pervasive Development

as rocks or bottle caps. They may be proficient in

Disorders (PDDs) that also include autism, Rett’s

knowing categories of information, such as basebal

Syndrome, Childhood Disintegrative Disorder,

statistics or the Latin names of flowers. While they

and PDD-Not Otherwise Specified (PDD-NOS).

may have good rote memory skil s, they have difficulty

PDDs are a category of neurological y-based

with abstract concepts.

disorders characterized by a range of delays in various

One of the major differences between Asperger’s

developmental stages.

Disorder and autism is that, by definition, there is no

Asperger’s Disorder was first described in the 1940s

speech delay in Asperger’s Disorder. In fact, children

by Viennese pediatrician Hans Asperger, who observed

with Asperger’s Disorder frequently have good

autistic-like behaviors and difficulties with social

language skil s; they simply use language in different

and communication skil s in boys who had normal

ways. Speech patterns may be unusual, lacking

intel igence and language development.

inflection or having a rhythmic nature. Speech may be

Many professionals felt Asperger’s Disorder was

formal and too loud or high pitched. Children with

simply a milder form of autism and used the term

Asperger’s Disorder may not understand the subtleties

“high functioning autism” to refer to it. Professor Uta

of language, such as irony and humor, or may not

Frith, with the Institute of Cognitive Neuroscience,

understand the natural give and take of a conversation.

of University Col ege London, and author of Autism

Another distinction between Asperger’s Disorder

and Asperger Syndrome, describes individuals with

and autism concerns cognitive ability. While some

Asperger’s Disorder as “having a dash of autism.”

individuals with autism experience mental retardation,

Asperger’s Disorder was added to the American

by definition a person with Asperger’s Disorder cannot

Psychiatric Association’s Diagnostic and Statistical

possess a “clinical y significant” cognitive delay. This

4

What is autism? — Lori Ernspberger, Ph.D.

does not imply that al individuals with autism have

mental retardation. Some do and some do not, but a

person with Asperger’s Disorder possesses average to

above-average intel igence.

While motor difficulties are not a specific criteria

for Asperger’s Disorder, children affected by it

frequently have motor skil delays and may appear

clumsy or awkward.

How is Asperger’s Disorder diagnosed?

Diagnosis of Asperger’s Disorder is on the increase,

although it is unclear whether it is more prevalent or

whether more professionals are detecting it.

The symptoms for Asperger’s Disorder are the same

at those listed for autism in the DSM-IV. However,

children with Asperger’s Disorder do not have delays in

the area of communication and language. In fact, to be

diagnosed with Asperger’s Disorder a child must have

had normal language development as wel as normal

intel igence. The DSM-IV criteria for Asperger’s

Disorder specifies that the individual must have “severe

and sustained impairment in social interaction, and

the development of restricted, repetitive patterns of

behavior, interests and activities,” that must “cause

clinical y significant impairment in social occupational

or other important areas of functioning.”

The first step to diagnosis is an assessment,

including a developmental history and observation.

This should be done by medical professionals

experienced with autism and PDDs. If Asperger’s

Disorder or high functioning autism is suspected, the

diagnosis of autism wil general y be ruled out first.

Early diagnosis is important. Children with Asperger’s

Disorder who are diagnosed and treated early in life

have a better chance of being successful in school and

eventual y living independently.

5

The Official Autism 101 Manual

What is Asperger’s Syndrome?

Contributing Author Dr. Tony Attwood is a Clinical Psychologist who has specialized in autism for over 20 years. As a practicing clinician with special interest in early diagnosis, severe challenging behavior and Asperger’s Syndrome, his experience covers the full range of the spectrum, from the profoundly disabled to the most highly functioning.

Resources and links—Tony Attwood, Ph.D. suggests visiting his Autism Today website to learn about his other products and services: Visit <http://attwood.autismtoday.com> today! (*Please note, don’t put in the www) The disorder can also include motor clumsiness

Dr. Hans Asperger, an Austrian paediatrician,

originally described Asperger’s Syndrome in 1944.

and problems with handwriting and being

The syndrome has more recently been classified as an

hypersensitive to specific auditory and tactile

autistic spectrum disorder. Children and adults with

experiences. There can also be problems with

Asperger’s Syndrome have an intellectual capacity

organisational and time management skills and

within the normal range, but have a distinct profile of

explaining thoughts and ideas using speech. The

abilities that has been apparent since early childhood.

exact prevalence rates have yet to be determined, but

The profile of abilities includes the following

research suggests that it may be as common as one

characteristics:

in 250. The aetiology is probably due to factors that

affect brain development and not due to emotional

A qualitative impairment in social interaction:

deprivation or other psychogenic factors.

• Failure to develop friendships that are

The characteristics of Asperger’s Syndrome

appropriate to the child’s developmental level.

described above are based on the diagnostic criteria

• Impaired use of non-verbal behaviour such as

and current research and have also been modified as

eye gaze, facial expression and body language to

a result of my extensive clinical experience. I would

regulate a social interaction.

like to provide a personalised description of Asperger’s

• Lack of social and emotional reciprocity and

Syndrome that also incorporates the person’s qualities

empathy.

as well as their difficulties.

• Impaired ability to identify social cues and

From my clinical experience I consider that

conventions.

children and adults with Asperger’s Syndrome have a

different, not defective, way of thinking. The person

A qualitative impairment in subtle communication

usually has a strong desire to seek knowledge, truth

skills:

and perfection with a different set of priorities than

• Fluent speech but difficulties with conversation

would be expected with other people. There is also

skills and a tendency to be pedantic, have

a different perception of situations and sensory

an unusual prosody and to make a literal

experiences. The overriding priority may be to solve

interpretation.

a problem rather than satisfy the social or emotional

needs of others. The person values being creative

Restrictive Interests:

rather than co-operative. The person with Asperger’s

• The development of special interests that is

syndrome may perceive errors that are not apparent

unusual in their intensity and focus.

to others, giving considerable attention to detail,

• Preference for routine and consistency.

rather than noticing the ‘big picture’. The person

is usually renowned for being direct, speaking their

mind and being honest and determined and having

6

What is Asberger’s Syndrome? — Dr. Tony Attwood

a strong sense of social justice. The person may

actively seek and enjoy solitude, be a loyal friend

and have a distinct sense of humour. However, the

person with Asperger’s Syndrome can have difficulty

with the management and expression of emotions.

Children and adults with Asperger’s syndrome may

have levels of anxiety, sadness or anger that indicate a

secondary mood disorder. There may also be problems

expressing the degree of love and affection expected

by others. Fortunately, we now have successful

psychological treatment programs to help manage and

express emotions.

7

The Official Autism 101 Manual

Savant syndrome

Contributing Author Darold A. Treffert, MD—Dr. Treffert is a clinical professor at the University of Wisconsin Medical School, in Madison, WI, and a member of the Behavioral Health Department at St. Agnes Hospital, in Fond du Lac, WI.

Resources and links — Darold A. Treffert, MD suggests visiting his Autism Today website to learn about his other products and services: Visit <http://treffert.autismtoday.com> today! (*Please note, don’t put in the www) You can contact Dr. Treffert by visiting <www.daroldtreffert.com> or calling (920) 921-9381. For more information, visit < www.savantsyndrome.com>.

Introduction

George can tel you, almost instantly, which years in bers and remembers myriads of them only glimpsed at the next 50 that Easter fal s on March 25. He can

years earlier. His memory is so good that he can study

tel you the day of the week of any date over a 40,000-

a 36-number grid for less than two minutes and tel

year span backward or forward. He and his identical

you what was in the grid, without making a mistake,

twin brother trade 20-digit prime numbers for amuse-

in 43 seconds. He uses his memory in his work as a

ment, notes Oliver Sacks.1 Yet George cannot multiply

librarian. Joseph was one of the people Dustin Hoff-

the simplest of numbers. George also remembers the

man spent many hours with learning about autism and

weather for every day of his adult life. Unable to explain

savant skil s for his portrayal of an autistic savant, Ray-

his incredible talents, George is content to say “It’s fan-

mond Babbitt, in the movie Rain Man.

tastic I can do that!” And it truly is.

El en is a musical virtuoso. A lover of opera, she

Richard’s swiss-oil crayon drawings are col ected

memorized Evita within a week of hearing it. She also

international y. He has had no formal art training and is

has a superior spatial sense and can keep time precisely

classified as legal y blind. He began drawing at age three.

without referring to a clock or other time piece. Since

At age 12 an art critic was “thunderstruck” by Richard’s

she is blind, she has never seen a clock. Her superior

drawings, which he described as an “incredible phenom-

spatial sense is demonstrated by her ability to walk in

enon rendered with the precision of a mechanic and

any unfamiliar setting without running into objects,

the vision of a poet.” Some of Richard’s drawings are in

as if using some type of personal radar. She also has an

the col ections of Margaret Thatcher and The Vatican.

extremely accurate memory and a preoccupation with

One, presented to Pope John Paul II, depicts thousands

rhythm that has been present since childhood.

of pilgrims in Vatican Square. You can almost single out

These five remarkable individuals are persons with

each of the persons on the drawing.

savant syndrome. They typify the musical, artistic,

Tony is blind and autistic. He is also an incredible

calendar calculating, lightning calculating, and spatial

musician. He won a jazz contest as a teenager and was

and mechanical skil s that are so characteristical y seen

admitted to the prestigious Berklee Col ege of Music

in savant syndrome, superimposed on autistic disorder,

in Boston from which he then graduated Magna

and always coupled with extraordinary memory. These

Cum Laude. He now plays 20 instruments and has

special skil s, linked with massive memory in persons

produced four CDs that include many of his own

with developmental disorders, including autistic

compositions.

disorder, is savant syndrome. And, just as these five

Joseph is a lightning calculator. He can multiply

individuals demonstrate the typical range of savant

341 by 927 in his head and quickly give you the an-

skil s, they also demonstrate the 5:1 male–female ratio

swer: 316,107. He is fascinated with license plate num-

seen in savant syndrome.

8

Savant Syndrome — Darold A. Treffert, MD

More information about these special persons,

Where we have been

and their equal y special families, can be found in

Extraordinary People: Understanding Savant Syndrome,

Savant syndrome, with its “islands of genius,” has

a book first published 1988 and then re-issued in an

a long history. Benjamin Rush provided one of

updated version in 2000.2 There is more about these

the earliest reports in 1789 when he described the

special persons as wel on the savant web site at

lightning calculating ability of Thomas Ful er, “who

<www.savantsyndrome.com> .

could comprehend scarcely anything, either theoretical

Each story documents the emergence of special

or practical, more complex than counting.”3 However,

skil s in a child, often at about age three or four,

when Ful er was asked how many seconds a man

superimposed on symptoms and behaviors of autistic

had lived who was 70 years, 17 days and 12 hours

disorder. The special skil s of these individuals are

old, he gave the correct answer of 2,210,500,800

often in the areas of art, music, calendar calculating,

in 90 seconds, even correcting for the 17 leap years

mathematics, or mechanical and spatial skil s. Al are

included. Actual y, however, the first description of

combined with prodigious memory. But the savant

savant syndrome in a scientific paper appeared in the

skil s, rather than being frivolous, are in fact the

German psychology journal, Gnothi Sauton, in 1783.

child’s way of communicating from their otherwise

It described the case of Jedediah Buxton, a lightning

relative isolation, and the savant abilities become, by

calculator with extraordinary memory.4

“training the talent,” a conduit toward better language

The now regrettable term idiot savant was coined

development, increased social and daily living skil s,

by Down in 1887 when he presented 10 cases in

and overal independence.

colorful detail from his 30-year experience at the

What fol ows is a summary of where we are in

Earlswood Asylum.5 These cases demonstrated the

understanding savant syndrome, today, where we’ve

typical musical, artistic, mathematical and mechanical

been in the past, the research directions in which we

skil s, coupled with phenomenal memory, that have

are proceeding and, most important, how the special

so unfailingly reoccurred in savant syndrome to the

talents in the twice exceptional child can be worked

present day. Down meant no harm by that term.

with and channeled toward ful y actualizing a-bilities

At that time “idiot” was an accepted classification

while at the same time lessening dis-abilities. Beyond

for persons with an IQ below 25, and “savant,” or

that, a closer look at savant syndrome triggers a closer

“knowledgeable person” was derived from the French

look at human potential overal ; however, especial y

word savoir meaning “to know.” While descriptive,

as the so-cal ed “acquired savants” more recently

the term was actual y a misnomer since almost al

described provide some hints at the hidden potential

cases occur in persons with an IQ higher than 40. In

that may lie within us al .

the interest of accuracy and dignity, savant syndrome

Until we can understand and explain savant

has been substituted and is now widely used. Savant

syndrome, we cannot ful y understand and explain

syndrome is preferable to “autistic savant” since only

ourselves. And no model of brain function wil be

about 50% of persons with savant syndrome have

complete until it can ful y incorporate and account for

autistic spectrum disorder and the other 50% have

this remarkable juxtaposition of ability and disability

some other form of CNS injury or disease.

in these extraordinary people. Beyond synapses and

The first definitive work on savant syndrome was

neurons, though, these stories also tel of the incredible

a chapter by Tredgold in his 1914 textbook, Mental

power of the belief, determination, persistence,

Deficiency. 6 In 1978 Hil provided a review of the

optimism and love of family members for these special

literature between 1890 and 1978 that included 60

people and how this propels their potential. The stories

reports involving over 100 savants.7 That year Rimland

provide uplifting examples of how it is not enough to

provided a summary of his data on “special abilities” in

care for the savant, and his or her mind. We must care

531 cases from a survey population of 5,400 children

about them, and their world, as wel .

with autism.8 Treffert provided an updated review in

1988, which contained more detail on al of those

9

The Official Autism 101 Manual

earlier cases.2 Since that time there have been six books

brain as a result of impaired development or actual

on the topic and several review articles with extensive

injury to the left brain.

bibliographies.9

This finding may account as wel for the high

male–female ratio in other disorders, including

What we do know

autism itself since left hemisphere dysfunction is

often seen in autism as wil be explained below. Other

The condition is rare but one in 10 autistic

conditions, such as dyslexia, delayed speech and

persons show some savant skills

stuttering, also with male predominance in incidence,

In Rimland’s 1978 survey of 5,400 children with

may be manifestations of this same left hemisphere

autism 531 were reported by parents to have special

interference in the prenatal period.

abilities and a 10% incidence of savant syndrome

has become the general y accepted figure in autistic

Savant skills typically occur in an intriguingly

disorder.(8) Hermelin, however, estimates that figure

narrow range of special abilities

to be as low as “one or two in 200.”10 The presence

Considering al the abilities in the human repertoire, it

of savant syndrome is not limited to autism however.

is interesting that savant skil s general y narrow to five

In a survey of an institutionalized population with

general categories: music, usual y performance, most

a diagnosis of mental retardation, the incidence of

often piano, with perfect pitch, although composing

savant skil s was 1:2,000 (0.06%)11 A more recent

in the absence of performing has been reported as

study surveyed 583 facilities, and found a prevalence

has been playing multiple instruments (as many

rate of 1.4 per 1,000, or approximately double the Hil

as 20); art, usual y drawing, painting or sculpting;

estimate.12

calendar calculating (curiously an obscure skil in most

Whatever the exact figures, mental retardation

persons); mathematics, including lightning calculating

and other forms of developmental disability are more

or the ability to compute prime numbers for example,

common than autistic disorder. So it turns out that

in the absence of other simple arithmetic abilities;

about 50% of persons with savant syndrome have

mechanical or spatial skil s, including the capacity

autistic disorder and the other 50% have other forms

to measure distances precisely without benefit of

of developmental disability, mental retardation or

instruments, the ability to construct complex models

other CNS injury or disease. Thus not al autistic

or structures with painstaking accuracy or the mastery

persons have savant syndrome, and not al persons

of map making and direction finding.

with savant syndrome have autistic disorder.

Other skil s have been reported less often,

including: prodigious language (polyglot) facility;

Males outnumber females in autism and savant

unusual sensory discrimination in smel , touch or

syndrome

vision, including synesthesia; perfect appreciation

In explaining this finding, Geschwind and Galaburda,

of passing time without benefit of a clock; and

in their work on cerebral lateralization, point out

outstanding knowledge in specific fields such as

that the left hemisphere normal y completes its

neurophysiology, statistics or navigation.14 In

development later than the right hemisphere and is

Rimland’s sample of 543 children with special skil s,

thus subjected to prenatal influences, some of which

musical ability was the most frequently reported skil

can be detrimental, for a longer period of time.13 In

fol owed by memory, art, pseudo-verbal abilities,

the male fetus particularly, circulating testosterone,

mathematics, maps and directions, coordination and

which can reach very high levels, can slow growth

calendar calculating.8

and impair neuronal function in the more vulnerably

General y a single special skil exists, but in some

exposed left hemisphere, with actual enlargement and

instances several skil s exist simultaneously. Rimland

shift of dominance favoring skil s associated with the

and Fein noted that the incidence of multiple skil s

right hemisphere. A “pathology of superiority” was

appeared to be higher in savants with autism than

postulated, with compensatory growth in the right

in savants with other developmental disabilities.15

10

Savant Syndrome — Darold A. Treffert, MD

Whatever the special skil , it is always associated with

system.18 They proposed two different neural circuits

prodigious memory. Some observers list memory as a

for these two different types of memory: a higher

separate special skil , however prodigious memory is an

level cortico-limbic circuit for semantic memory

ability al savants possess, cutting across al of the skil

and a lower level, cortico-striatal circuit for the more

areas as a shared, integral part of the syndrome itself.

primitive habit memory which is sometimes referred

to as procedural or implicit memory. Savant memory

There is a spectrum of savant skills

is characteristical y very deep, but exceedingly narrow,

The most common are splinter skil s, which include

within the confines of the accompanying special skil .

obsessive preoccupation with, and memorization of,

music and sports trivia, license plate numbers, maps,

Savant syndrome can be congenital or it can be

historical facts or obscure items such as vacuum

acquired following brain injury or disease later

cleaner motor sounds, for example. Talented savants

in infancy, childhood or adult life

are those cognitively impaired persons in whom the

Recent reports of savant-type abilities emerging

musical, artistic or other special abilities are more

in previously healthy elderly persons with fronto-

prominent and finely honed, usual y within an area

temporal dementia are particularly intriguing.(19,20)

of single expertise, and are very conspicuous when

viewed in contrast to overal disability. Prodigious

Savant skills characteristically continue, rather

savant is a term reserved for those extraordinarily rare

than disappear, and with continued use the

individuals for whom the special skil is so outstanding

special abilities either persist at the same level or

that it would be spectacular even if it were to occur in

actually increase

a non-impaired person. There are probably fewer than

In almost al cases, unlike the case of Nadia, there is

50 prodigious savants known to be living worldwide

no trade-off of special skil s with exposure to more

at the present time who would meet that very high

traditional schooling.21 Instead, the special skil s often

threshold of savant ability.

serve as a conduit toward normalization with an actual

improvement in language acquisition, socialization

The skills tend to be right hemisphere in type

and daily living skil s.

These (right hemisphere) skil s can be characterized as

non-symbolic, artistic, concrete and directly perceived,

No single theory has emerged thus far that can

in contrast with left hemisphere skil s, which are more

explain all savants

sequential, logical and symbolic, and include language

An important basic question surrounding savant

specialization.

syndrome is how do they do it? Numerous theories

have been put forth, but no single over-arching

The special skills are always accompanied by

theory can explain al savants. The theories have

prodigious memory

included: eidetic imagery or the related but separate

Whatever the special abilities, a remarkable memory

phenomenon general y cal ed photographic memory;

of a unique and uniform type welds the condition

inherited skil s; sensory deprivation and sensory

together. Terms such as automatic, mechanical,

isolation; highly developed rote memory; and

concrete and habit-like have been applied to this

compensation and reinforcement to offset lack of more

extraordinary memory. Down used the term “verbal

general capacity or intel igence.2

adhesion”;5 Critchley used the terms “exultation of

There are problems with each of these theories.

memory” or “memory without reckoning”;16 Tredgold

For example, formal testing for eidetic imagery shows

used the term “automatic”;(6) and Barr characterized

that phenomenon to be present in some but certainly

his patient with prodigious memory as “an exaggerated

not in al savants and when present it may be more

form of habit.”17 Such unconscious memory suggests

a marker of brain damage than an agent of savant

what Mishkin and Petri referred to as non-conscious

abilities.22, 23 Two studies, one with 25 savants and

“habit” formation rather than a “semantic” memory

another with 51 subjects showed relatives with special

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The Official Autism 101 Manual

skil s in some but certainly not al cases; another study

demonstrated in a number of studies. As early as

of 23 relatives of careful y studied savants found only

1975, pneumoencephalograms demonstrated left

one family member with special skil s.24–26 Several

hemisphere abnormalities, particularly in the temporal

investigators have shown that memory alone cannot

lobe areas in 15 of 17 patients with autism, four of

ful y account for savant abilities, particularly calendar

whom had savant skil s. Investigators in this study

calculating and musical skil s. 10, 27

concluded that motor and language functions were

In recent years several neuropsychological theories

“taken over” by the right hemisphere because of

have also directly addressed the abundant reports of

deficits in the left hemisphere.34 A 1999 PET study

splinter and savant skil s in the autistic population.

showed low serotonin synthesis in the left hemisphere

“Weak central coherence” theory (WCC) cites a

of persons with autistic disorder, and other studies

particular cognitive and perception style—focusing

have confirmed such left hemisphere deficits as wel .35

on details rather than the whole—as being present in

Boddaert and co-workers demonstrated that five

persons with autism and postulates that such a style

children with autism when at rest and when listening

of information processing could be an important

to speech-like sounds displayed a volume of activation

part of those persons with savant abilities. Not being

that was greater on the right side and diminished

distracted by more global patterns, the savant can

on the left. The reverse was found among the eight

focus on a single item or skil and perfect it.28 Simon

children in the control group.36 Escalante and

Baron-Cohen has advanced the “extreme male brain”

col eagues demonstrated an atypical pattern of cerebral

theory of autism. This proposes that attributes of the

dominance and a history of early language disorder

male brain, systematizing and spatial skil s, produce a

among individuals with autism when compared to

special predilection for autism in males.29–30 He finds

both healthy participants and persons with normal

such special systematizing skil s and lack of social

acquisition of early language skil s.37

abilities and empathizing in persons with Asperger’s

With respect to savant syndrome, in 1980 Brink

Disorder particularly.31

presented a case of a typical y developing nine-year-old

However, the newer neuro-psychiatric theories

boy who was left mute, deaf and paralyzed by a gun-

seem more to describe the autistic person than to

shot wound to the left hemisphere.38 Fol owing that

explain him or her, and they do not account for the

injury an unusual savant mechanical skil emerged,

fact that of those with savant syndrome only 50% are

presumably from the undamaged right hemisphere.

autistic while the remainder have other developmental

Subsequent reports have likewise implicated left hemi-

disabilities, CNS disorders or disease.

sphere injury, such as those in a musical savant, and

a mathematical savant with left hemisphere damage

New findings

documented in both on neuropsychological tests and

neuro-imaging studies.39, 40 Likewise CT scans and

Left brain injury and right brain compensation

neuropsychological test results for a prodigious musical

One theory that does provide an increasingly plausible

savant described by Treffert showed left brain damage.2

explanation for savant abilities in many cases is

Munoz-Yunta and co-workers report similar findings

left brain injury with right brain compensation.

of left hemisphere damage and dysfunction in savant

As pointed out above, the skil s most often seen in

syndrome based on PET and magnetoencephalography

savant syndrome are those associated with the right

techniques.41

hemisphere, as described by Tanguay.32 Rimland

commented that in the autistic savant simultaneous,

A significant new discovery:

high-fidelity imagery and processing—right

the “acquired” savant

hemisphere functions—tend to be more prominent

However, the most powerful confirmation of the left

than the verbal, logical and sequential processing more

brain dysfunction/right brain compensation theory

typical y associated with the left hemisphere.8, 33

in savant syndrome comes from a 1998 report by

In autism, left brain dysfunction has been

Mil er and co-workers. They described five previously

12

Savant Syndrome — Darold A. Treffert, MD

non-disabled patients with fronto-temporal dementia

wound to the left hemisphere.38 An international y

(FTD) who acquired new artistic skil s with the onset

known, now adult, savant sculptor had his remarkable

and progression of FTD.19 Several of these individuals

talent emerge fol owing a childhood fal .2 Lythgoe and

had no previous history of particular artistic ability.

co-workers describe a 51-year-old male whose prolific

Yet prodigious art skil s emerged as the dementia

drawing and sculpting skil s unexpectedly emerged

proceeded. Consistent with characteristics and traits of

fol owing a subarachnoid hemorrhage that affected

savants, the modality of skil expression in these five,

principal y frontal areas.43

older adults was visual, not verbal; the images were

meticulous copies that lacked abstract or symbolic

SPECT Imaging in a nine-year-old artistic savant

qualities; episodic memory was preserved but semantic

with autism

memory was devastated; and there was intense,

After finding left hemisphere dysfunction, particularly

obsessive preoccupation with the artwork. Neuro-

left anterior temporal dysfunction in the 12 patients

imaging studies showed dominant (left) hemisphere

with fronto-temporal dementia, Mil er and co-workers

injury and dysfunction.

performed neuropsychological and neuro-imaging

The authors hypothesized that selective

studies on a newly diagnosed nine-year-old artistic

degeneration of the (particularly left) anterior temporal

savant with autism.44 This childhood artistic, autistic

and orbitofrontal cortices decreased inhibition of

savant showed “striking paral els” to other artistic

visual systems involved with perception, thereby

savants, particularly Nadia, with an obsession for one

enhancing artistic interest and abilities. Kapur cal ed

art medium (felt-tipped pen) and one type of subject

this process “paradoxical functional facilitation” and

(cartoon figures), and with extraordinary drawing skil s

speculated that this process accounts for unexpected

and exceptional visual memory. MRI scan was normal.

behavioral improvement in discrete domains fol owing

SPECT showed bilateral increased frontal perfusion

brain injury.42

with bilateral anterior temporal lobe hypo-perfusion,

In an expansion of that work, Mil er described

which was worse on the left than on the right. This is

seven additional FTD patients who acquired new

the same site of dysfunction noted in the 12 elderly

visual or musical talents despite the progression of

FTD patients with savant-type skil s. These researchers

their dementia.20 The 12 FTD patients with these

conclude: “The anatomic substrate for the savant

newly emerged savant-type talents were compared

syndrome may involve loss of function in the left

on SPECT imaging and neuropsychological testing

temporal lobe with enhanced function of the posterior

to FTD patients without such talent. Nine of the 12

cortex.”

showed asymmetric left-sided SPECT deficits; one

demonstrated bilateral abnormalities (left on MRI,

A gene for savant syndrome?

right on SPECT), while two had asymmetric right-

In the search for subgroups within the aggregate

sided dysfunction (one of whom was left-handed).

autism spectrum disorders, Nurmi and col eagues

The talented group performed better on tasks assessing

identified (among 94 multiplex families) 21 families as

right frontal lobe functions, but worse on verbal

“savant skil s positive” and 73 families as “savant skil

abilities. The authors conclude: “Loss of function

negative.”45 The subset study of savant-skil s positive

in the left anterior temporal lobe may lead to the

families yielded significantly increased evidence for

‘paradoxical functional facilitation’ of artistic and

linkage to 15q11-q13 compared to savant-skil s

musical skil s. Patients with the left-sided temporal

negative families. Interestingly, the presence of savant

lobe variant of FTD offer an unexpected window

skil s was the only factor that isolated a subgroup

into the neurological mediation of visual and musical

from the larger autistic spectrum disorders group. The

talent.”

authors note that Prader-Wil i syndrome is due to a

These FTD cases are interesting additions to the

deletion on this same region of chromosome 15 (i.e.

earlier cases of newly “acquired” savant abilities such

15q11-13) and that some features (including puzzle

as Brink’s case, already noted, fol owing a gunshot

skil s for example) of PWS and autism overlap. The

13

The Official Autism 101 Manual

researchers conclude that it is possible that a gene, or

control group relied on the more limited span working

genes, in the chromosome 15q11-13 region, “when

memory system. Therefore unique brain mechanisms

perturbed contributes to predisposition to a particular

are utilized by the expert when demonstrating this

cognitive style or pattern on intel ectual impairments

special skil . And, when doing these special skil s,

and relative strengths. Precisely how those skil s are

the prodigy is perhaps relying on some right brain

manifested in a given individual may be influenced

capacities and some special memory recruitment as

by a variety of environmental, and possibly, genetic

may be the case for the savant.

factors.”

An article by Kalbfleisch further explores the

functional neural anatomy of exceptional talent and

Prodigies and savant syndrome

interfaces between talent, intel igence and creativity in

There is emerging evidence that prodigies and savants

prodigies and savants.48

may share certain underlying mental processes

when carrying out their specialized, expert tasks.

Repetitive Transcranial Magnetic Stimulation

Event-related potentials (ERPs) can measure very

(rTMS)

early components of brain activity reflecting initial,

Several investigators are exploring the use of rTMS to

“preconscious” stages of mental processing. This fast,

temporarily immobilize portions of left hemisphere

low-level “preconscious” mental activity contrasts

function to see if, given Mil er’s work and some of the

sharply with that seen when higher level, “executive”

other left-sided findings summarized above, savant-

functions are accessed during typical information

type abilities emerge in healthy volunteers.

processing. Birbaumer compared ERPs of a “human

Snyder and Mitchel argue that savant brain

calculator”—a non-autistic arithmetic whiz—to same

processes occur in each of us but are overwhelmed

age, IQ matched, healthy controls.46 Compared to

by more sophisticated conceptual cognition.49 They

controls, early on in the calculating process, the expert

conclude that autistic savants “have privileged access

calculator showed evidence of “enhanced automatic

to lower levels of information not normal y available

low-level processing.” Studies are now underway with

through introspection.” Snyder and co-workers tested

autistic savant calculators to see whether this particular

that hypothesis in 11 male volunteers using rTMS

type of early, lower level processing (“without

applied to the left fronto-temporal region while

reckoning”) is the same as that used by the non-

carrying out two drawing tests and two proofreading

autistic “expert” calculator.

tests.50 rTMS did not lead to any systematic

In a similar effort using PET, Pesenti and his team

improvement in naturalistic drawing ability but it did

examined differences between a calculating prodigy

lead to “a major change in the schema or convention

and normal control subjects in the neural basis of

of the drawings of four of the eleven participants.”

mental calculations.47 When completing less complex

Two of the participants noted improvement in their

calculations in a typical manner, both the expert and

ability to proofread and recognize duplicated words.

non-expert persons showed activation in the brain

In a similar study Young and col eagues, using a

bilateral y but with a clear left-sided predominance for

wide variety of standard psychological tests and tasks

select regions. However when the “expert” completed

specifical y designed to test savant skil s and abilities,

complex calculations much more accurately and

showed that savant-type skil s improved in five out

swiftly than controls, he “recruited” a system of brain

of 17 participants during rTMS stimulation.51 They

areas implicated in episodic memory including right

conclude that savant-type skil expressions may be

medial frontal and parahippocampal areas. Moreover,

possible for some, not al , individuals just as it appears

the expert utilized a unique method of exploiting

to be the case in the disabled population. This group

the seemingly unlimited storage capacity of long-

intends to carry out further studies using more

term memory in order to maintain the sequence of

efficacious and targeted stimulation.

steps and intermediate results needed for the more

These new studies suggest that savant syndrome

complex calculations. On the contrary, the normal

may be due, at least in part, to “paradoxical functional

14

Savant Syndrome — Darold A. Treffert, MD

facilitation” of the right hemisphere, al owing for new

who was unable to use a clock or tel time in any

skil s as a compensatory process. Increasingly, however,

conventional manner, yet had perfect appreciation of

an alternative theory is advanced wherein these right

past or passing time.

brain skil s are not necessarily newly developed but

While not identified as such, in reading Down’s

instead represent latent but dormant skil s that are

careful and colorful accounts of his cases of “special

released from the “tyranny of the left hemisphere,” or

faculties,” it is clear that among the children were some

what is, more simply, left cerebral dominance in most

with what would now be identified as autistic disorder,

persons.

in which savant syndrome occurs with a distinctive

frequency as noted above. Among his cases one finds

Savants: past and present

the typical artistic, musical, mathematical and other

enhanced abilities noted so often in the literature in

Dr. Down’s original 10 cases of savant syndrome

the 118 years since Down’s original observations.

In his 1887 Lettsomian Lectures before the Medical

Society of London, Down presented 10 cases encoun-

Later cases, including those of Dr. Leo Kanner

tered in his 30 years in practice that had particularly

Tredgold presented 20 additional cases 27 years

caught his attention.5 Each of these were individuals

later.6 His cases are a catalogue of the categories and

who, while mental y retarded, exhibited remarkable

skil s—musical, artistic, mechanical, calendar and

“special faculties.” Down did not identify any of these

mechanical/spatial—that are repeated so strikingly in

special persons as autistic; that designation did not oc-

al the subsequent cases to date.

cur until Kanner’s paper over 50 years later.52 But in

The several hundred cases in the literature

closely reviewing Down’s entire lecture series, he did,

since Tredgold are summarized in a 1988 review

interestingly, specifical y mention a group of individu-

article.53 The 2000 edition of Extraordinary People:

als who differed in many ways from those with more

Understanding Savant Syndrome added additional

typical mental retardation, a group he identified as

cases.2 And the web site <www.savantsyndrome.com>

“developmental” in origin. That is a term—develop-

has added many new cases worldwide as wel .

mental disability—now applied to autistic persons

Six of Kanner’s original cases of Early Infantile

a century after Down’s observations. Down’s astute

Autism had specific musical abilities, and Kanner was

observations regarding this group of “developmental”

struck by the overal heightened memory capacity

cases is described in detail on the savant syndrome

of al 10 of these individuals.52 The identical twin

web site at <http://www.savantsyndrome.com> in the calendar calculators first described by Horwitz have

articles section under the title of Dr. J. Langdon Down

been extensively studied since that time.54 The brothers

and Developmental’ Disorders.

have a calendar calculating range of 40,000 years and

Down’s description of his 10 cases of “special

they also remember the weather for each day of their

faculties” in those 1887 lectures reads like descriptions

adult life. Their ability to compute 20-digit prime

of many savants over a century later. Each of his cases

numbers, inability to do simple arithmetic and special

of developmental disability demonstrated some special

abilities were described by Sacks and incorporated into

skil s combined with prodigious memory. That is

some scenes in Rain Man.1

savant syndrome. One of his patients, for example, had

memorized verbatim The Rise and Fal of the Roman

Some well-known savants

Empire. Other children drew with remarkable skil

Without doubt the best-known autistic savant is a

“but had a comparative blank in al the other higher

fictional one—Raymond Babbitt—as portrayed by

faculties of mind.” Stil other children remembered

Dustin Hoffman in the Academy Award-winning

dates and past events. Arithmetical genius was evident

movie Rain Man. The original inspiration for the

in some children, including lightning calculating.

savant portrayed in Rain Man is a 53-year-old

Music and musical memory was also described among

male who has memorized over 8,600 books and

the special abilities. And there was yet another boy

has encyclopedic knowledge of geography, music,

15

The Official Autism 101 Manual

literature, history, sports and nine other areas of

ability, demonstrated very precise spatial location abili-

expertise.55, 56 He can name al the U.S. area codes

ties and precise time-keeping skil s without access to a

and major city zip codes. He has also memorized the

clock face or other time instruments.2

maps in the front of telephone books and can tel you

Most reports continue to be anecdotal, single cases.

precisely how to get from one U.S. city to another and

However, Young traveled to a number of countries and

then how to get around in that city street by street. He

met with 59 savants and their families, completing the

also has calendar calculating abilities and more recently

largest study done on savants to date using uniform

rather advanced musical talent has surfaced. Of

history taking and standardized psychological testing.25

unique interest is his ability to read extremely rapidly,

Forty-one savants carried a diagnosis of autism and the

simultaneously scanning one page with the left eye, the

remainder some other type of intel ectual disability.

other page with the right. An MRI shows absence of

Twenty were rated as prodigious savants; 20 were

the corpus cal osum along with substantial other CNS

rated as talented; the remaining 19 had splinter skil s.

damage. His history and savant abilities are described

The savants in this series of cases had the fol owing

in detail on the savant web site.

elements in common: neurological impairment

The phenomenal drawing ability of a British

with idiosyncratic and divergent intel ectual ability;

savant with autism has resulted in several popular

language and intel ectual impairments consistent

art books published by him.57, 58 His extraordinary

with autism; intense interest and preoccupation with

memory is il ustrated in a documentary film clip:

particular areas of ability; rule-based, rigid and highly

after a 12-minute helicopter ride over London, he

structured skil s lacking critical aspects of creativity

completes, in three hours, an impeccably accurate

and cognitive flexibility; preserved neurological

sketch that encompasses four square miles, 12 major

capacity to process information relating to the

landmarks and 200 other buildings, al drawn to scale

particular skil s; a wel -developed declarative memory;

and perspective. A rather marked musical ability has

a familial predisposition toward high achievement;

surprisingly surfaced in this artist as wel .59 Recently

and a climate of support, encouragement and

an 11-year-old’s artwork from the U.S. has gained

reinforcement from families, case workers, teachers,

international attention.60

caretakers and others.

The triad of blindness, autism and musical genius

In a recent summary of work with savants,

continues to be conspicuously over-represented and

Nettlebeck and Young conclude that rote memory

prominent throughout the history of savant syndrome,

does not provide sufficient basis for savant skil s;

including Blind Tom at the time of the Civil War,

instead such savant skil s are based on extensive, rule-

Tredgold’s case at the Salpetriere and several wel

based knowledge confined to narrowly defined abilities

known present day musical savants.2, 61 A Japanese

that are imitative and inflexible.27 They conclude

musical savant’s ability as a composer demonstrates

that savant skil s do not represent separate forms of

decisively that savants can be creative; his 40 original

intel igence (outside the concept of overal intel igence)

pieces on two international y popular CDs forceful y

and that these skil s depend on modular processing

document that ability.62 Smith describes in detail a

and memory structures that have been spared damage

remarkable language (polyglot) savant in The Mind of

affecting other areas of the brain.

the Savant. 63

However female savants continue to be few. Self

Rain Man the movie/Rain Man real life

described the case of Nadia which has triggered con-

Raymond Babbitt, the main character in the movie

siderable debate about the possible “trade-off” of spe-

Rain Man, has become the world’s best known savant

cial skil s for language and social skil s acquisition.21

due to Dustin Hoffman’s remarkably accurate and

Viscott documented in detail, including psychody-

sensitive portrayal of savant syndrome in that film.

namic formulations, a female musical savant whom he

That 1988 movie, in its first 101 days, accomplished

fol owed for many years.64 Treffert described a blind,

more toward bringing savant syndrome to public

autistic musical savant who, along with her musical

attention than al the efforts in the 101 years fol owing

16

Savant Syndrome — Darold A. Treffert, MD

Dr. Down’s 1887 description of the disorder. A

Clark developed a Savant Skil Curriculum using

detailed description of the background and chronology

a combination of successful strategies currently

of the movie, including the people Dustin Hoffman

employed in the education of gifted children

studied with as he prepared for his role, is described

(enrichment, acceleration and mentorship) and autism

elsewhere.2 But several things warrant mention here.

education (visual supports and social stories), in an

First, the movie is not a documentary. Yet its

attempt to channel and apply in useful ways the often

accuracy added to its value as an informative and

non-functional obsessive savant and splinter skil s

entertaining film. One indicator of that accuracy is

of a group of students with autism.66 This special

that there was no six-day, cross-country “cure” of

curriculum proved highly successful in the functional

autism. The real change of character occurred in the

application of savant skil s and an overal reduction

brother, Charlie. This conveys the important message

in the level of autistic behaviors in many subjects.

that in dealing with persons with disabilities it is often

Improvements in behavior, social skil s and academic

we who need to accommodate their needs and special

self-efficacy were reported, along with gain in the

qualities—and not they who need to make al the

communication skil s of some subjects.

changes required for them to live with us, side-by-side,

Donnel y and Altman note that increasing

in our communities. Third, as a gentle caveat, the

numbers of “gifted students with autism” are now

audience needs to realize that Raymond Babbitt is a

being included in gifted and talented classrooms

high functioning autistic person, and not al autistic

with non-disabled, gifted peers.67 Discussing this,

persons function at that high level; it is a spectrum

they outline some of the special approaches that are

disorder. Fourth, as a second caveat, the audience

effective with gifted student with autism, including

needs to realize that not al autistic persons are savants,

the use of an adult mentor in the field of their talent,

and not al savants have autistic disorder.

individual counseling and smal group social skil s

The major message in the movie concerning the

training.

special qualities of the autistic savant is a welcome

Some specialized schools are emerging as wel .

and positive one. The message raised public interest

For example, Soundscape Centre in London recently

in both autism and savant syndrome. Few disabilities

began operating as the only specialized educational

wil receive the public focus and heightened visibility

facility in the world uniquely dedicated to the needs

as autism and savant syndrome received as a result of

and potential of persons with sight loss and special

Rain Man.

musical abilities, including musical savants.68 Orion

Academy < www.orionacademy.org> in Moraga, Training the Talent:

California, specializes in providing a positive

successful education approaches

educational experience for high school students with

Etiologic considerations aside, what is the best ap-

Asperger’s Syndrome. Hope University < www.hopeu.

proach to the savant and his or her special skil s? Phil-

com> in Anaheim, California, is a fine arts facility for lips framed the controversy in 1930 when he wrote:

adults with developmental disabilities. Its mission is to

“The problem of treatment comes next. . . . Is it better

“train the talents and diminish the disability” through

to eliminate the defects or train the talent?”65 Experi-

the use of fine arts therapy, including visual arts,

ence has given the answer—train the talent and some

music, dance, drama and storytel ing.

of the “defect” disappears. The special talent, in fact,

The Savant Academy < www.savantacademy.org>

becomes a conduit toward normalization: the unique

in Los Angeles, California, was established in 2003 to

savant skil s promote better socialization, language

support the education of people with savant syndrome,

acquisition and independence. The special skil s can be

including linguistic, mathematical, musical and artistic

used to engage the attention of the savant. They can be

savants. David Mehnert, the musician and teacher who

used to help the savant express him- or herself. They

established the Savant Academy, suggests specialized

can be used as channels for the expression of more use-

techniques to unlock hidden savant abilities, using

ful abilities.

music particularly as a pathway to special abilities. On

17

The Official Autism 101 Manual

the web site, Mr. Mehnert provides more information

potential in some, or perhaps, al of us.

about those techniques and provides, as wel , some

Advanced technologies wil help in those

useful information about “myths” surrounding savant

investigations. Images of brain structure are now

syndrome and about perfect pitch, an extremely

integrated with studies of brain function using

important consideration when dealing with musical

PET, SPECT and fMRI. Diffusion Tensor Imaging

savants. More information about perfect pitch and

(DTI) and direct Fiber Tracking now permit non-

teaching musical savants is also contained in a booklet

invasive tracking of white matter pathways within

by Susan Rancer, a Registered Music Therapist.69

and between brain regions, better delineating the

Dr. Temple Grandin is wel known as an

under-connectivity and over-connectivity problems

international authority in her field of animal science.

perhaps causal in autism and savant syndrome itself.73

She is also wel known for her books including

Findings from al these newer techniques can then be

Thinking in Pictures and Animals in Translation. 70,

correlated with detailed neuropsychological testing in

71 She is also autistic. Her recent book, with Kate

larger samples of savants, comparing and contrasting

Duffy, Developing Talents: Careers for Individuals with

those findings with data from both impaired and

Asperger Syndrome and High-Functioning Autism,

non-impaired control groups, including prodigies.

is an excel ent practical resource for discovering,

The interface between genius, prodigies and savants

nurturing and “training the talent,” so that many

is especial y intriguing, and these studies can shed

persons on the autistic spectrum can experience the

light on the debate regarding general intel igence

important experience of work and “the satisfaction of

versus separate intel igences. Some researchers suggest

contributing to their families and their communities,

that savants provide a unique window into the

of being independent and economical y self-

creative process itself. From studies already completed

sufficient.”72 This book outlines methods of helping

important information has emerged regarding brain

children “develop their natural talents” using “drawing,

function, brain plasticity, CNS compensation,

writing, building models, programming computers”

recruitment and repair.

and similar skil s to help build a “portfolio” of skil s

But there is more to savant syndrome than genes,

they can apply in their search for a meaningful work

circuitry and the brain’s marvel ous intricacy. Scientific

experience. The book helps people on the autistic

interest aside, those with savant syndrome and their

spectrum and their family members, teachers,

families, caregivers, teachers and therapists have a

counsel ors and others better understand and develop

great deal to teach us. Human potential consists of

the career planning process for these special persons

more than neurons and synapses. It also includes,

with special skil s.

and is propel ed by, the vital forces of encouragement

and reinforcement that flow from the unconditional

Future directions

love, belief, support and determination of families

and friends who not only care for the savant, but care

No model of brain function, including memory,

about him or her as wel .

wil be complete until it can account for, and ful y

Savant syndrome remains a “chal enge to our ca-

incorporate, the rare but spectacular condition

pabilities,” as one person described it in an American

of savant syndrome. While in the past decade,

Psychiatric Association paper in 1964, concluding that

particularly, much progress has been made toward

the real significance of savant syndrome lies in our in-

explaining this jarring juxtaposition of ability and

ability to explain it.54 But savant syndrome is less now a

disability, many unanswered questions remain.

“landmark to our ignorance” than at that APA meeting

However, interest in this fascinating condition is

41 years ago. More progress has been made in the past

accelerating, especial y since the discovery of savant-

15 years in better understanding and explaining savant

type skil s in previously unimpaired older persons

syndrome than in the previous 100. And that impor-

with FTD and other “acquired” savant instances. This

tant inquiry continues, with the prospect of us advanc-

finding has far-reaching implications regarding buried

ing further than ever before as we unravel the mysteries

18

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abilities and, in the process, learn more about ourselves,

our hidden potential and our possibilities.

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Chapter 2—Early diagnosis and best

outcomes

Early diagnosis and

best outcomes

CHAPTER 2

23

Early detection of autism spectrum disorders

(This article is reprinted with permission from the January–February 2004 issue of the Autism Asperger’s Digest, a 52-page bimonthly magazine on autism spectrum disorders. For more information, write < www.autismdigest.com> or cal 1-800-489-0727. The publisher, Future Horizons Inc., is a world leader in autism/Asperger’s/PDD publications.) Contributing Author Rebecca Landa, Ph.D., University of Washington, CCC-SLP—A speech-language pathologist, Dr. Landa directs the Center for Autism and Related Disorders at Kennedy Krieger Institute, at The Johns Hopkins School of Medicine, Baltimore, MD, and is the principal investigator on several NIH- and CDC-funded studies of autism. She authored the Pragmatic Rating Scale, which is used internationally in autism research.

Resources and links— Rebecca Landa, Ph.D., CCC-SLP suggests visiting her Autism Today website to learn about her other products and services: Visit < http://landa.autismtoday.com> today! (*Please note, don’t put in the www) You can write to Dr. Landa at <landa@kennedykrieger.org>.

Children with autism are typicaly diagnosed after flags” might signal that development is not coming three years of age. Yet parents typical y expressed

along in a typical fashion? Our research has focused on

their first concern to their pediatrician when their

these questions, and more. We address these questions

child was 18 to 20 months of age (Stone et al., 1999).

through the longitudinal assessment of infant siblings

Many times, parents indicate that they had some

of children with autism (6–36 months of age),

concern about their child with autism even before

children who are late talkers but have no family history

tel ing their pediatrician.

of autism (18–36 months of age), and children who

These concerns were often “soft” signs of a

have no family history of autism and appear to be

problem. For example, some parents remember that

developing typical y (6–36 months of age).

their baby became very upset when riding in a car

or when their feet touched grass, that their baby

infrequently looked into their eyes, or that their baby

Why is early detection

was unusual y content or quiet. What is a parent to

of an ASD important?

make of these characteristics? The picture becomes

Fundamental y, early detection is important because

a bit more complicated as the baby ages and new

earlier intervention appears to drive better outcomes

developmental features are supposed to appear.

than later onset intervention (Harris & Handleman,

Skil s may emerge, but may be qualitatively different

2000). Why would this be? The answer is that brain

from that seen in most children. For example, first

development occurs through interplay between

words may emerge but sound like they were taken

external stimulation and neurobiological processes.

from a Disney video, or they are produced once

Consider the fol owing neurodevelopmental

and then rarely heard again. Parents watch their

phenomena and their implications for early

infants’ development careful y, but most parents

intervention.

rely on experts to guide them about whether the

developmental process is coming along as expected.

(a) In normal development, infants have more neurons

This article addresses: (a) Why is early detection

than they need, and these extra neurons must be

of an autism spectrum disorder (ASD) important?

selectively “pruned” or eliminated. If they are not,

(b) If early diagnosis is so important, why are so few

there could be an excess of excitation in the brain that

children with an ASD identified early? (c) What “red

could negatively impact learning and development.

24

Early detection — Rebecca Landa, Ph.D.

Treatment implication: Intervene early while

begin to hear these as one speech sound. This helps

this pruning process is underway. Guided input of

them because they don’t get confused if one speaker

stimulation may assist with this pruning process.

of the language pronounces a speech sound slightly

For example, babies who are not prone to looking

differently than another speaker of the language. This

at faces can be “tricked” into or enticed to look at

process occurs just as babies begin to comprehend

faces. For babies who are prone to exploring objects

language. Babies do not have to be taught to do this, it

only through mouthing them, guided experience

just happens through exposure of speech input at the

coordinating information across sensory domains can

right time in development.

be provided by helping the babies look at a nubby bal ,

Treatment implication: Intervene early, as close to

touch it, squeeze it and so forth.

the timing of the sensitive period as possible. Give

enriched input, in formats that attract the infant’s

(b) Pathways (forming a “communication system”)

attention.

must develop in the brain whereby signals carrying

information can travel from one area of the brain to

(d) The brain is able to “compensate” for problems

another. For example, a structure deep in the brain

that it has, such that a skil can be learned by an

may help babies look at faces, but it is not until

“alternate” region if the region typical y responsible

connections are made between that structure and the

for learning that skil is disabled in some way. This

cortex of the brain that babies are capable of a more

is cal ed neuroplasticity. Neuroplasticity timeframes

sophisticated analysis of facial information. There is

differ from brain region to brain region but it is most

evidence that this connection process occurs through

powerful in the young brain.

extensive experience with looking at faces and the

Treatment implication: Intervene early, during

brain’s neurobiological program to make neural

periods of maximal neuroplasticity. Development of

connections.

each skil or part of a skil wil facilitate development

Treatment implication: Intervene early when these

of associated skil s (e.g., as visual spatial skil s develop,

pathways are scheduled to make their connections.

object knowledge develops, which enhances language

(Scientists have defined the timeframe for the

development, which enhances social development).

formation of some of these connections) The same

examples given above apply here. If babies are not

(e) An untreated disruption in one brain region could

prone to explore or pay attention to certain types of

have “downstream” effects on brain regions that would

input, they may require more exaggerated input (such

have otherwise been normal or minimal y impaired.

as exaggerated smiles paired with vocalization, bal s

Treatment implication: Intervene early and treat ar-

that light up when handled).

eas of deficit that most affect social and communication

development. Social development, for example, has

(c) There are sensitive periods in brain development

many component or sub-skil s. Helping babies develop

wherein “learning” occurs quickly, without the baby

each of those sub-skil s can help prevent or reduce the

having to real y “focus” attention on the incoming

effect of social impairment. An infant with low social

information. For example, early in development,

responsiveness wil elicit less input from those around

babies are able to “hear” al the differences in the

him, and this is just the type of infant who cannot af-

speech sounds they hear, even sounds that are not

ford to have reduced social learning opportunities.

in their native language. Japanese babies can “hear”

the difference between “r” and “l”, even though these

sounds are not distinguished in their language. At

If early diagnosis is so important,

about 6 months of age, babies begin to categorize

why are so few children with an ASD

speech sounds into the different phonetic classes

identified early?

that characterize their native language. At this time,

Japanese babies stop discriminating “r” and “l”, and

One of the reasons that ASD is not identified early

25

The Official Autism 101 Manual

is that the signs of ASD in infants and toddlers have

This gives the infant time to coordinate a

not been clearly defined. In addition, we know very

response.)

little about whether the presence of certain “red flags”

• Infrequent looking at the face of the interactive

actual y signals a true developmental disorder. Some

partner.

professionals feel that discussing concerns with parents

• Infrequent matching of the facial expression

may cause them to be upset, and so they elect to wait

of the caregiver; infants should smile when

until development is more clearly disrupted or delayed

their caregiver smiles at them (not every

before they make a referral for further assessment.

single time, but consistently enough to be

The first concern that parents general y raise is that

noticeable); parents should expect their infant

their child is not talking as expected. Many “late talk-

to be synchronized with them, in emotional

ers” go on to have typical development. Prospective,

expression, vocalization patterns and so on.

longitudinal research (such as that being conducted in

• Odd or unusual movement patterns (e.g.,

our lab) is needed to identify early signs of risk for au-

method of grasping an object, rolling over and,

tism and how reliably those signs actual y predict the

in older infants, crawling; odd transitions in

onset of a disorder. Since the developmental disruption

movement from one position to another).

in autism is probably present before the expected on-

set of first words, we need to develop an eye for these

9–12 months of age

non-linguistic signs of ASD in infants and toddlers.

• Reduced or absent non-verbal intentional

We wil be looking at things far more subtle than a

communication (waving bye-bye, pointing).

spoken word. Late onset of language is too general a

• Reduced or absent social communication

“red flag” to serve us wel in identifying children who

(showing, pointing things out, sharing, giving

are likely to manifest an ASD. Guidelines and charac-

you a bite of their snack, “calling” you from the

terized developmental patterns across time are needed

crib).

to help professionals identify infants and toddlers at

• Reduced complexity of babbling or reduced

risk for an ASD.

variety in the types of sounds produced by the

infant during babbling.

• Reduced use of vocalizations in interactions or

What “red flags” might signal that

during intentional communicative attempts

development is not coming along in a

(trying to get you to give him a Cheerio, or

typical fashion?

trying to get you to pick her up).

The “red flags” wil change as new skil s are expected.

• Reduced comprehension of your nonverbal

Based on our longitudinal research with infant siblings

gestures (your hand out as you ask for him to

of children with autism, we propose the fol owing “red

“give it to me”).

flags” as signs that a screening should be conducted by

• Reduced response to his/her name being called.

an expert in infant and toddler development as wel as

• Being overly “fixated” on objects or movement

in autism.

patterns.

• Reduced imitation of simple movement

6 months of age

patterns that the child can already perform on

• Infrequent babbling.

his or her own.

• Infrequent vocalization in response to caregiver

• Reduced attempts to make you laugh.

vocalization (Remember that typically

(Typically developing infants enjoy attention

developing infants require a little time to

and do things to seek it out. If they see that

coordinate their responses. So caregivers should

they have made you laugh, they are likely to

provide some silent moments between the

perform the behavior again to get you to laugh

vocalizations that they direct to their infant.

again or to keep your attention.)

26

Early detection — Rebecca Landa, Ph.D.

14–16 months of age

eral of these “red flags,” someone has concerns about

(We chose 14 months instead of 12 months because first

the infant’s development, or there is a family history

words and the ability to walk are expected by this age.)

of an autism spectrum disorder, the infant should be

• Reduced looking to the caregiver when the

seen by a developmental expert (psychologist or speech

caregiver is talking but not necessarily to the

language pathologist).

child.

• Lack of the onset of first words.

References

• The primary way that you can consistently

get and keep the child’s attention is when you

Harris, S., & Handleman, J. (2000). Age and IQ at

perform a favorite routine (peek-a-boo, sing a

intake as predictors of placement for young children with

certain song, etc.).

autism: A four to six year fol ow-up. Journal of Autism

• Fixated on videotapes.

and Developmental Disorders. 30, 137–142.

• Echoing what others say without social and

Stone, W., Lee, E., Ashford, L., Brissie, J., Hepburn,

communicative intention.

S., Coorod, E., & Weiss, B. (1999). Can autism be

• Lack of teasing. (Toddlers of this age have ways

diagnosed accurately in children under three years of

of signalling when they are initiating a social

age? Journal of Child Psychology and Psychiatry, 40,

game. They will give a coy look, offer you a toy

219–226.

and then retract it as they smile, and so forth.

The absence of this teasing behavior is a “red

flag.”)

• Infrequent coordination of looking at

you, smiling and producing some form of

communication (a word or vocalization or

gesture).

• Imitation that is reduced in frequency, atypical

in form or unpaired with social connection

(e.g., eye contact and/or a smile).

• Reduced frequency or length of turn-taking

exchanges (with or without objects).

• Repetitive behaviors or sensory seeking (e.g.,

pressing head against caregiver, peering at the

edge of a table).

• Reduced number of play sequences (put spoon

in cup and stir; put spoon in bowl then to

teddy bear’s mouth) or range of behaviors that

are exhibited in play. (A child who engages only

with cause-effect toys or stacking blocks, to the

exclusion of functional play with objects and

emerging pretend play (e.g., putting a phone to

her ear) should be watched to see whether there

are other “red flags” present.).

Early diagnosis and intervention provides a child with

optimum opportunities for enhanced growth and de-

velopment. If an infant or toddler’s actions mimic sev-

27

The Official Autism 101 Manual

Are you wondering whether a child you know may have

autism or Asperger’s Syndrome?

If you are wondering if a child may have autism or Asperger’s Syndrome, take the following quiz, answering “yes” or “no” to the questions.

1. Do they spin objects around and around?

2. Is their speech repetitive, like an echo?

3. Are they attracted to shows like Wheel of Fortune or Jeopardy?

4. Do they like to watch the same movie over and over again?

5. Are they fascinated with numbers and letters?

6. Do they seem unafraid of things that they should be afraid of?

7. Is it hard for them to make eye contact?

8. Do they shy away from being touched?

9. Do they like to line objects in a row?

10. Do they lack the ability to play “with” other children?

If you answer “yes” to three or more of the questions, consider the following steps, not necessarily in the order provided:

1. Call your local autism support group for a doctor referral, and to learn about local available services and parent support group.

2. Research available behavioural, educational, and sensory interventions for autism.

3. Research your child’s biomedical needs, including those of nutrition.

4. Check your insurance policy, to find out if it covers autism.

5. Find out about early intervention services for autism in your community and begin to take advantage of them as soon as possible after diagnosis.

28

Early detection of autism spectrum disorders

Contributing Author Terrylynn Tyrell is completing a doctoral degree in severe disabilities at the Johns Hopkins University. Her dissertation topic involves training pediatric practitioners to utilize autism screening tools. In 2004 she co-authored a legislative bill entitled, “Pilot Program to Study and Improve Screening Practices for Autism Spectrum Disorders”. This bill was passed in the state of Maryland in April 2005.

Ms. Tyrell received her undergraduate degree with honors in psychology from the University of East London and her master’s degree in educational psychology and counseling from McGill University. Terrylynn started working as an educational therapist for the Bermuda Department of Education in 1998. During this time she developed an intervention database for children with behavior and emotional disorders. She also served as a trainer for active parenting sessions.

While pursuing her doctoral degree, Ms. Tyrell worked at the Kennedy Krieger Research Institute as a research coordinator on a center grant: Studies to Advance Autism Research and Training (STAART). During this time she was an active participant of the Johns Hopkins University Autism Network and the Early Detection and Intervention Network at the Kennedy Krieger Research Institute. She has also served as a program consultant and evaluator for the United States District court in review of instructional and inclusion services in the Baltimore city public school system.

Ms. Tyrell is an associate of the Johns Hopkins University teaching faculty for students in the Department of Special Education. Ms. Tyrell is also a member of the American Educational Research Association, the American Public Health Association, and the Council for Exceptional Children.

Ms. Tyrell is the recipient of a Bermuda Government Further Education Award, a McGill University Graduate Studies and Recipient Award and the Johns Hopkins University Buchaner Scholarship and Schiffman Scholarship.

Ms. Tyrell has worked with families and children with disabilities for 15 years.

Resources and links—Terrylynn M. Tyrell, M.Ed. suggests visiting her Autism Today website to learn about her other products and services: Visit <http://tyrell.autismtoday.com> today! (*Please note, don’t put in the www) Introduction

Autism is at the forefront of local, national, and

1,000 children in general practice should anticipate

international educational and political agendas.

that 3-7 of his/ her patients wil exhibit signs of autism

Autism is currently receiving major attention because

spectrum disorder. Some researchers indicate that the

over the past decade there has been an explosion

prevalence of autism spectrum disorders is comparable

in worldwide prevalence rates (Fombonne, 2000).

to Alzheimer’s disease and, as a result, represents a

Epidemiological research indicates a vast increase in

clear medical need (Gerlai & Gerlai, 2003). Pediatric

the incidence of autism (Bryson, Clark, & Smith,

practitioners need to be prepared to meet the needs of

1988; Fombonne, 1999). In addition, there has been

their patients with autism spectrum disorders.

a considerable rise in the number of people receiving

Although autism is a life-long disability, treatment

services for autism spectrum disorders (Newchaffer &

can make a significant difference. The DSM-IV-TR

Curran, 2003; Rice, Schendel, Cunniff, & Doernberg,

(2000) states that the age of onset of symptoms occurs

2004). These factors have resulted in an amplified

prior to age 3, therefore people with autism and their

awareness about this disability.

families live with this disability for the majority of

Autism is considered a major health issue

their life. Retrospective studies show that infants

(Newschaffer & Curran, 2003; Tebruegge, Nandini,

with early onset of autism spectrum disorders can be

& Ritchie, 2004). According to Johnson (2004), a

identified at 8 – 10 months of age (Werner, Dawson,

member of the American Academy of Pediatrics (AAP)

Osterling, & Dinno, 2000). Current research indicates

Autism Panel, a primary care physician that cares for

that a reliable diagnosis can be made as early as 24

29

The Official Autism 101 Manual

months of age and this diagnosis remains stable over

may not interact with others. This extensive range

time (Moore & Goodson, 2003). Autism should be

represents many autism conditions that are known as

detected prior to the age of 3 as research demonstrates

Autism Spectrum Disorders (ASD). The Diagnostic

that there are early signs that can help with early

and Statistical manual of Mental Disorders, IV, Text

identification.

Revision (DSM-IV-TR, 2000) notes that autistic

The major benefit of early detection is timely

disorder is one of five disorders that fal in the category

access to early intervention services (King & Glascoe,

of pervasive developmental disorder.

2003). Many studies demonstrate that early detection

and early intervention leads to improved outcomes

Cause of Autism

(Committee on Children with Disabilities, 2001;

Howlin & Moore, 1997; Woods & Wetherby,

At this time there is no single known cause of

2003). Early intervention can assist with educational

autism. Past theories about the cause of autism have

preparation, family supports, counseling, and medical

proven incorrect. Original y, deviant parenting was

treatment (Filipek et al, 2000). In addition, Prater

considered to be a cause of autism (Bettelheim, 1967).

and Zylstra (2002) estimate that one third of people

Recently genetics was considered a significant factor

with autism live independently. It is evident that early

in autism and other pervasive developmental disorders

detection of autism is desirable and imperative (Baird

(Bespalova & Buxbaum, 2003; Constantino & Todd,

et al., 2001).

2003; Rutter, Bailey, Simonoff, & Pickles, 1997;

The purpose of this is to demonstrate the

Shastry, 2003). Studies show that siblings of a child

importance of early detection in children with autism

with autism have a higher risk of autism than siblings

spectrum disorder. First, the nature and possible

of children without autism (Bespalova & Buxbaum,

cause of autism are reviewed. Recent epidemiological

2003; Bolton et al., 1994). Research has also indicated

findings about autism and the response to this

that vaccines and thimerosal are not associated with

public health concern are addressed. Final y, current

the rise in autism prevalence (Johnson, 2004 ; Hvi d,

pediatric practices regarding developmental screening

Stel feld, Wohlfahrt, & Melbye; Madsen et al., 2003).

are described. This review wil also highlight the

Investigators are stil searching for a definitive cause of

importance (need) of developmental screening in

autism. At this time there is no biological marker for

early childhood. It wil also provide recommendations

autism (First Signs, 2003).

(solutions) for increasing earlier identification

through early developmental screening. This proposal

Epidemiological Research Studies on

concludes with future considerations for the early

Autism Spectrum Disorders

identification of autism spectrum disorders.

Epidemiological research has demonstrated a vast

What is Autism?

increase in the rate of autism. Epidemiology is the

study that relates to patterns of disease incidence in

Autism is a life-long pervasive developmental disorder

human populations and the causes that affect them

that affects normal development of the brain in areas

(Fombonne, 1999). In Atlanta, Georgia the rate

that impact communication and social interaction

of autism spectrum disorder increased from 4 to 5

combined with restricted patterns of behaviors

per 10,000 in the 1980’s to 34 per 10,000 in 1996

(Baird, et al, 2001; Nash & Coury, 2003; Tidmarsh

(Yeargin-Al sopp et al., 2003). Recent epidemiological

& Volkmar, 2003). Impairments in these areas

surveys have been conducted in several countries and

range from mild to profound. A high-functioning

numerous researchers have discovered an increase in

individual with autism can have a high IQ, can be

the prevalence of autism (Fombonne, 2003).

verbal and may social y interact with others while a

International studies. There have been several

low-functioning individual with autism may have

international studies on the prevalence rate of autism

mental retardation, be completely non-verbal and

spectrum disorders. Autism was reported 10 per

30

Early detection — Terrylynn Tyrell

10,000 in a Canadian study of the epidemiology of

of 2000 passed by Congress, legislated many activi-

autism (Bryson, Clark, & Smith, 1988). Population

ties related to autism research (PL 106-310). The Act

studies of children in Goteborg, Sweden revealed

specifical y recommended earlier screening of autism.

an increase in autism from 4 per 10,000 in 1980

At the request of Congress the National Institutes of

to, 7.5 per 10,000 in 1984, and 11.6 per 10,000 in

Health (NIH) formed a Federal Interagency Autism

1988 (Gil berg, Steffenburg, & Schaumann, 1991).

Coordinating Committee (IACC), to organize and

In Cambridgeshire, United Kingdom (U.K.), the

sustain autism research and services (NIH, 2004). This

prevalence rate of autism spectrum condition in 5 to

committee includes representatives from five NIH

11 year olds was 57 in 10,000 (Scott, Baron-Cohen,

institutes, the Center for Disease Control (CDC) and

Bolton, & Brayne, 2002). Lower rates were reported

Prevention the Food and Drug Administration (FDA),

in Kent, U.K. as 23.7 per 10,000 and in a North East

and the US Department of Education, which hope-

population in London, U.K. as 14.9 per 10,000 in

ful y enables and encourages dialogue between these

children age 5-14 years (Lingam et al., 2003). These

organizations.

studies indicate an inconsistency in the rate of autism.

The IACC responded to the request from

US studies. A study in the Brick township of New

Congress by developing two major research studies

Jersey reported the prevalence of autism spectrum

related to autism spectrum disorders that are funded

disorders as 67 per 10,000 children (Betrand et

by the NIH. In 1997, a five-year, $42 mil ion, ten

al., 2001). An assessment of prevalence of autism

international networks (Britain, Canada, France,

spectrum disorder in California revealed a rate of

Germany, and the U.S.) of Col aborative Programs

12.3 per 10,000, a much lower rate than New Jersey

of Excel ence in Autism (CPEA) was created to study

(Croen, Grether, & Selvin, 2003). An Atlanta, Georgia

possible genetic, environmental, and immune causes

study of autism prevalence revealed a rate of 3.4 per

of autism. Another activity that resulted from the

1,000 (34 per 10,000), which is half the rate of the

Children’s Health Act of 2000 was the creation of

Brick township study (Yeargin-Al sopp, et al., 2003).

Studies to Advance Autism Research and Treatment

A Minnesota evaluation of prevalence trends of autism

(STAART), a new NIH program, to examine the

over time discovered an increase in prevalence from 3

effects of treatment on children with autism. There

per 10,000 in 1991-1992 to 52 per 10,000 in 2001-

are eight STAART centers across the country and the

2003 (Gurney et al., 2003). Although the prevalence

NIH provides mil ions of dol ars in funding for these

rate of autism seems to be inconsistent within the U.S.

studies. In 2002, the total support for autism research

and the U.K. it is apparent that the rate of autism

was 74 mil ion dol ars.

is increasing and as a result communities need to be

The CDC is another federal agency that supports

prepared to address this rise.

research in autism spectrum disorders in several states.

There are several projects that the CDC is currently

Public Health Response

funding. The Autism and Developmental Disabilities

Monitoring network (ADDM) is creating and advanc-

Response from the federal government

ing programs to monitor the number of children with

The United States federal government publicly rec-

autism and related disorders in ten states. The Centers

ognizes autism as a public health problem. Persons

of Excel ence for Autism and Developmental Dis-

with developmental disabilities may need life-long

abilities Research and Epidemiology (CADDRE) work

services and the financial costs can be astronomical

with the ADDM to monitor the number of children

(Rice, Schendel, Cunnif, & Doernberg, 2004). The

with ASD. CADDRE also aims to increase awareness

societal cost for a person with autism is estimated

about ASD, to expand access to services for children

to be four mil ion dol ars (Newschaffer & Curran,

with ASD, and to direct epidemiologic research associ-

2003). In 1995, the US Congress mandated research

ated with ASD, and other developmental disabilities.

programs that would detect the gaps in the knowl-

The CDC currently funds five CADDRE networks.

edge-base regarding autism. The Children’s Health Act

Other federal activities include annual reports to con-

31

The Official Autism 101 Manual

gress to review the provision of the Children’s Health

Current Pediatric Practice

Act of 2000 and a two-day Autism Summit Confer-

ence. It is evident that the federal government has

Based on the recent epidemiological studies of autism

responded positively to the increased prevalence of

we can expect a large number of children to be

autism.

identified with autism. A pediatrician should expect

to provide a medical service for at least one child with

Response from the scientific community

autism (Committee on Children with Disabilities,

The AAP has responded with a multitude of

2001). There may be more than 500,000 people with

autism resources for professionals, parents, and the

autism in the USA with an average lifespan of 76

community. The AAP has also developed a policy

years representing 44 mil ion patient years (Gerlai

regarding the pediatrician’s role in the diagnosis

& Gerlai, 2003). Parents typical y indicate concerns

and management of autistic spectrum disorder

as early as 18 months (Committee on Children

(Committee on Children with Disabilities, 2001).

with Disabilities, 2000; Filipek et al., 2000; Gray &

The CDC has launched a campaign, “Learn the

Tonge, 2001). Unfortunately children with autism are

Signs. Act Early, to improve childhood developmental

typical y diagnosed between the ages of 4 and 6, years

screening (CDC, 2004). Free resources have been

after parents first ask for professional help regarding

distributed to pediatric practices throughout the

their children (Howlin & Moore, 1997; Siegel, Pliner,

United States. Moreover, researchers in the autism

Eschler, & El iott, 1998). The delay between a parent’s

field are currently working on a Baby Sibs Project that

preliminary concern and the ultimate diagnosis can

is searching for signs of early indicators of autism in

defer early intervention and diminish the impact that

infants as young as 6 months (Johnson, 2004).

early intervention has on early brain neuroplasticity.

This is an issue that needs to be addressed.

US Department of Education

In 1990, Autism became a federal category for

Screening for Autism

special education. According to the Maryland State

Department of Education (2004) 260 children with

Screening is the process of identifying an unrecognized

autism ages 3 to 21 were served in federal y supported

disorder by using specific tests or examinations (Baird

programs in 1993. This figure increased to 4,804 in

et al., 2001). Although autism is more common than

the year 2003. There is a 25% increase per year in the

once thought it is often recognized and diagnosed

number of children classified with autism across the

at a very late stage (Filipek et al., 2000; King &

country (Newschaffer & Curran, 2003). In response

Glascoe, 2003). Less than 30% of pediatricians

to this escalation, educators and researchers have

perform standardized screening tests at wel -child visits

promoted early intervention services for children with

according to the Quality Standards Subcommittee of

autism. Early intervention is offered to infants and

the American Academy of Neurology and the Child

toddlers with disabilities, at no cost, through Part C of

Neurology Society (2000). A recent survey discovered

the Individuals with Disabilities Act of 1997 (U.S.C.

that 7 out of 10 pediatricians detect children with

§1400). Several research studies have demonstrated

developmental problems using clinical judgment,

the benefits of early intervention. Early intervention

without the use of a screening instrument or checklist

can enhance language, develop social and academic

(King & Glascoe, 2003). Unfortunately research shows

skil s in children with ASD (Butter, Wynn, & Mulick,

that pediatricians identify few children with disabilities

2003; Jensen & Sinclair; 2002; Ozonoff & Cathcart,

when they rely solely on clinical judgment (Glascoe

1998; Volkmar, Lord, Bailey, Schultz, & Klin, 2004).

& VanDervoort, 1985; Regaldo & Halfon, 2001;

Silverstein, Grossman, Koepsel , & Rivaram, 2003).

The CDC (2004) recently highlighted several

barriers to early screening by pediatricians, including

(a) a focus of physical development as opposed to

32

Early detection — Terrylynn Tyrell

cognitive and social development; (b) a lack of training

Screening Methodology

to conduct screening, and (c) an inclination to support

a “wait and see” approach. It is apparent that early and

Screening methods specific to the identification of au-

accurate screening for autism is an existing problem in

tism have recently been developed (Baird et al., 2001).

pediatric practice that needs to be addressed.

Several tools are used to screen for autism including

the (a) Autism Behavior Checklist (Krug, Arick, & Al-

mond, 1980), (b) the Autism Diagnostic Interview-Re-

Parental Role in Early Screening

vised (Lord, Rutter, & LeCouteur, 1994), (c) the Au-

for Autism

tism Diagnostic Observation Schedule-Generic (Lord,

Parents first recognize problems in their children

Rutter, & DiLavore, 1997), (d) the Behavior Rating

between 12 and 20 months of age (De Giacomo &

Instrument for Autistic and Atypical Children (Rutten-

Fombonne, 1998). Research suggests that parental

berg, Dratman, Faknoi, & Wener, 1966), (e) the Be-

concerns about their child’s attention span, hearing,

haviour Observation Scale for Autism (Freeman, Ritvo,

and language are sound predictors of developmental

Guthrie, Schroth, & Bal , 1978), (f) the Childhood

concerns (California Department of Developmental

Autism Rating Scale (Schopler, Riechler, DeVel is, &

Services, 2002; Glascoe, 2003). Unfortunately there

Daly, 1980), and (g) the Screening Test for Autism

is an indication that pediatricians do not routinely

in Two-Year-Olds (Stone & Ousley, 1997). There are

inquire about parental concerns and when parents

benefits to each of these tools but in terms of pediatric

do raise concerns they are often discounted by

practice these screening tools are extremely long, are for

professionals. Moreover parents believe that health

older children, require the administrator to be special-

professionals need more knowledge about autism in

ized in autism, and do not consider parental input.

relation to their child (Kerrel , 2001).

Autism screening methods that can be easily used

Recommendations for Changing Pediatric Practice

in pediatric practice include the (a) the Checklist for

The AAP recommends that the primary

Autism in Toddlers (CHAT), and (b) the Modified

pediatrician familiarize himself or herself with “at

Checklist for Autism in Toddlers (M-CHAT). These

least one autism screening tool and perform it on al

tools are quick to administer, do not require special

children” (Committee on Children with Disabilities,

training, and consider parental input. The CHAT

2001 page 6; Johnson, 2004). Moreover, studies

(Baron-Cohen, Al en, & Gil berg, 1992) was the

indicate that screening combined with parental

first attempt to create a general population screen.

observations increases the effectiveness of screening

It was developed to prospectively identify autism

tools (Baird, et al, 2001). Screening for autism should

at 18 months. This screening tool has 9 statements

occur for al children who do not meet specific

about infants that are related to joint attention,

milestones such as “babbling by 12 months, . . . single

social orienting, language, symbolic play, and social

words by 16 months, and . . . two-word spontaneous

interaction. The physician asks the parent the first 9

phrases by 24 months” (Filipek et al., 2000 p 471).

test items. There are also 5 separate items that a home

The American Academy of Child and Adolescent

health visitor observes the child in the home setting.

Psychiatry, the American Academy of Neurology,

The CHAT was used to screen 16,000 children and 12

and the Child Neurology Society have issued

children were considered at risk for autism. Although

practice parameters regarding regular developmental

the CHAT has a high predictive value it has poor

surveil ance and screening. These professional entities

sensitivity towards children with mild symptoms of

absolutely recommend the use of developmental

autism (Baird et al., 2000; Filipek et al., 2000). This

screening with particular screening for autism

lack of sensitivity failed to identify 4 of 5 children

during al wel child visits (California Department

that were later recognized as having signs of autism

of Developmental Services, 2002; Committee on

(Baird et al., 2001). To date, there have been limited

Children with Disabilities, 2001; Filipek et al., 2000;

published studies on the effectiveness and reliability of

First Signs; 2003).

other autism screens.

33

The Official Autism 101 Manual

The MCHAT is an extended version of the CHAT.

author 1) to educate pediatric practitioners about the

It using the first nine items from the CHAT and has

importance of early detection and screening for autism

the same layout. The M-Chat (Robins, Fein, Barton,

and 2) to train how to recognize the early indicators of

& Green, 2001), a 23- item checklist, is an autism

autism.

screen that is used at ages of 18 months and 24

months. The M-CHAT includes more developmental

areas than the CHAT such as motor abnormalities,

How and where is autism

social referencing, imitation, and orientation. This

currently detected?

checklist is a modified version of the Checklist for

Parental Detection

Autism in Toddlers. Additional items were developed

Autism spectrum disorders are often detected by

based on research regarding early symptoms of ASD

parents. The diagnosis is usual y acknowledged or

that are present in infants and toddlers. The checklist

confirmed by an expert clinician or developmental

is completed by parents and scored by clinicians.

pediatrician (not a family practitioner or normal

pediatrician). The diagnosis usual y requires a special-

Guidelines for Developing

ized medical visit which may or may not be covered

Screening Methodology

by insurance. Experts usual y use several assessments

The autism field is appealing for the development of

to determine whether or not there is a diagnosis ASD

appropriate screening tools with acceptable sensitivity

– Autism Diagnostic Interview, Autism Diagnostic

and specificity in young children and the tool should

Observation Schedule, and the Mul en. These tests can

be accessible to use by a variety of practitioners

take 2 days to complete.

(Filipek et al., 2000). Early detection of autism

requires screening tools that are quick to use, sensitive,

Detection at Well-Child Visits

specific, reliable, and relevant to the population for

The wel -child visit is the optimal opportunity to de-

which they are used. An autism screen should address

tect or screen for ASD. Often, the pediatrician has the

language, joint attention, play, repetitive behavior, and

chance to obtain a developmental picture of an infant

regression (Stewart, Chal man, & Myers, 2004).

or a toddler. A 10–20 minute period of screening for

ASD can be conducted if practitioners know 1) how

Current Pediatric Practice

to use and screen, and 2) know what signs to look for.

It has been noted that “wel -child care is a core service

Presently, pediatric practice is not prepared to

of pediatrics, but it receives little emphasis in pediatric

screen and identify children that exhibit the signs

training, reluctant consideration by insurers and rare

of autism. There is a need for pediatric practitioners

attention by researchers” (Schor, E.L. 2004).

to develop clinical expertise to recognize the signs

Pediatricians conduct surveil ance in their practice

of developmental disorders, particularly ASD.

to glean a developmental picture. This picture needs

Practitioners need to be trained in the screening of

to embrace the possibility of ASD. Many practitioners

children with social and developmental disorders.

can be trained to use an autism screening tool includ-

Moreover, the feasibility of early systematic

ing, pediatricians, family practitioners, physician assis-

surveil ance in al aspects of development must be

tants, pediatric nurse practitioners, public health clin-

demonstrated as important. In addition, pediatric

ics, and parents. Other essential and often overlooked

practitioners need a resource that they can be easily

professionals that can learn how to screen are early

used as an early screen for ASD.

interventions, day-care providers, and psychologists.

Ongoing Research Study

A training proposal entitled Early Developmental

Screening is currently being implemented by the

34

Early detection — Terrylynn Tyrell

Autism Screening

There are certain signs to look for when conducting a screen for spectrum disorders. Based on the DSM IV TR and expert research the indicators of autism include impaired communication, impaired social interaction, and restricted repetitive and stereotyped patterns of behavior. These global concepts can be separated into specific signs of ASD in infants and toddlers: Lack of Typical Behaviors

• Showing

• Appropriate gaze

• Warm, joyful expression

• Sharing interest / enjoyment

• Response to name

• Coordination of nonverbal communication

• Exhibition of Atypical Behaviors

• Repetitive movements with objects

• Repetitive movements or posturing of body

(Wetherby, Woods, Allen, Cleary, Dickinson, & Lord, 2004)

Clues: Early Identification of ASD

• Limited gaze shifts

• Lack of shared affect

• Lack of conventional and symbolic gestures

• Limited use of speech

• Lack of pretend play and limited conventional use of objects

• Unconventional means of communication (using a person’s hand as a tool; SIB; echolalia)

(Stone, Ousley, Yoder, Hogan, & Hepburn, 1997; Wetherby, Prizant, & Hutchinson, 1998)

Absolute Indicators of Referral

• No babbling by 12 months;

• No gesturing by 12 months;

• No single words by 16 months;

• No 2 spontaneous word phrases by 24 months;

• ANY loss of ANY language or social skills at ANY age.

(American Academy of Neurology)

<http://www.neurology.org/cgi/reprint/55/4/468.pdf> 35

The Official Autism 101 Manual

Autism Screening Clinical Guidelines

Level 1

• General Surveil ance in relation to the above diagnostic criteria and / or early indicators.

Level 2

• Assessment and Diagnosis of Autism

Referral

Once children are identified as being at risk for ASD or any developmental disability, the child should be referred to the local Infants and Toddlers Program. The local Infants and Toddlers program is legal y required to provide intervention services to children and their families. The main purpose of early identification of ASD is to increase the chance of the best prognosis and to enable better access to services, treatment, and intervention.

Future Consideration to Enhance Early Identification

• Continue to educate professionals and the general public about the importance of early identification.

• Encourage al pediatric practitioners to continue with general surveil ance with the addition of an autism screen.

• Target al professionals who interact with infants and toddlers, including nurse practitioners, early intervention workers, and psychologists.

• Provide free training sessions that are comprehensive yet brief.

• Include “support staff” in planning.

• Provide incentives for professionals to participate in training sessions such as reimbursement for time or credit towards their continuing medical education.

• Advocate for reimbursement by insurance providers for conducting autism screening in medical practice.

• Advocate col aboration between experts in the field of early detection and professionals that work with infants and toddlers.

<http://www.neurology.org/cgi/reprint/55/4/468.pdf > (page 3) Autism

Page 3

Level One: Routine Developmental Surveil ance

by al providers at every wel -child visit e.g., PEDS, ASQ, CDIs, or BRIGANCE

Absolute Indications for Immediate Evaluation:

No babbling, or pointing or other gesture by 12 months

No single words by 16 months

No 2-word spontaneous (not echolalic) phrases by 24 months

ANY loss of ANY language or social skil s at ANY age

Rescreen at next visit

Fail

Pass

Laboratory investigation:

Formal audiological assessment, Lead screen if pica present

Specifically Screen for Autism:

CHAT, Autism Screening Questionnaire

(Australian Scale for Asperger’s Syndrome, PDDST-II-Stage 1)

Refer to Level Two as indicated

Fail

Pass

Refer to Early Intervention

or Local School District

Level Two: Diagnosis and Evaluation of Autism

Proceed to Level Two

Formal Diagnostic Procedures by experienced clinician

History & Neurological Evaluation

Specific Evaluations to Determine Developmental Profile

Expanded Laboratory Evaluation only if indicated

Figure. Practice parameter algorithm.

36

of investigation, specific clinical questions were defined (see Appendix 2), clinical evidence was summarized, and diagnostic recommendations were developed.

Evidence and recommendations are presented in three sections. The first two sections, Level One: Routine Developmental Surveillance and Screening Specifically for Autism, and Level Two: Diagnosis and Evaluation of Autism, first present the empiric data for each question and are followed by recommendations linked to the specific evidence.

Each is followed by a section on Recommendations for Research. The third section, Consensus-Based General Principles of Management, presents additional recommendations based on broad consensus. Additional information about autism, including behavioral aspects associated with the core defining deficits, methodology, and clinical evidence are described in the background paper.1 Specific information about the recommended developmental screening and diagnostic tools can be found at http://www.aan.com under AAN Resources: Practice Statements: Official AAN Practice Statements: Autism, Screening and diagnosis of.

Description of the process. Experts in the surveillance/screening and diagnosis of autism were selected by 11

professional organizations (see Appendix 1) and convened in June 1998 and January 1999. They reviewed and evaluated the quality of the evidence from the published literature, developed a consensus of evidence-based management recommendations, and published a comprehensive background paper on the surveillance, screening, and diagnosis of autism.1 Evidence reviewed for this parameter was identified through literature searches using MEDLINE and PsychINFO. Relevant articles were included from all languages using the following search terms: autistic; OR autism; OR pervasive, and NOT treatment. This search produced over 4,000 citations, from which 2,750 studies met the following inclusion criteria: clinical papers published since 1990; review papers and meta-analyses developed for DSM-IV; and the overview of the National Institutes of Health State of the Science Conference on Autism in 1995. Relevant book chapters and books were also included, as identified by the expert panel.

The strength of the evidence for each relevant article and book chapter was ranked using the defined criteria shown in Appendix 3. Recommendations were thereby derived based on the strength of the evidence and stratified (Standard, Guideline, or Practice Option) as defined in Appendix 3.

Level one: routine developmental surveillance and screening specifically for autism. Analysis of the evidence. When and how often should developmental surveillance/screening be performed? Approximately 25% of children in any primary care practice show developmental issues. However, fewer than 30% of primary care providers conduct standardized screening tests at well-child appointments.8–10 The American Academy of Pediatrics (AAP) stresses the importance of a flexible, continual developmental surveillance process at each well-child visit, and recommends eliciting and valuing parental concerns, probing regarding age-appropriate skills in each developmental domain, and observing

Medical testing for autism, Asperger’s Syndrome and PDD

(This article is reprinted with permission from the July–August 2004 issue of the Autism Asperger’s Digest, a 52-page bimonthly magazine on autism spectrum disorders. For more information, write < www.autismdigest.com> or cal 1-800-489-0727. The publisher, Future Horizons Inc., is a world leader in autism/Asperger’s/PDD publications.) Contributing Author William Shaw, Ph.D., Biochemistry, Genetics and Human Physiology, Medical University of South Carolina—Dr. Shaw is the Director of The Great Plains Laboratory, Inc., which specializes in metabolic and nutritional testing, especially in autism. He is board certified in the fields of Clinical Chemistry and Toxicology by the American Board of Clinical Chemistry. He has supervised large endocrinology, nutritional biochemistry, toxicology and immunology departments in positions at the Center for Disease Control and Smith Kline Clinical Laboratories in Atlanta, Georgia. He was Director of Clinical Chemistry, Endocrinology and Toxicology at Children’s Mercy Hospital, the teaching hospital of the University of Missouri at the Kansas City School of Medicine.

Resources and links— William Shaw, Ph.D. suggests visiting his Autism Today website to learn about his other products and services: Visit: http://shaw.autismtoday.com today! (*Please note, don’t put in the www) For more information, contact Dr. Shaw by calling (913) 341-8949, writing to him at < GPL4U@aol.com> or visiting < www.greatplainslaboratory.com>.

It is generally accepted within the autism community

Food allergy testing

by parents and professionals alike that autism is a

behaviorally-based disorder. That is, diagnosis is based

The single most useful test for people on the autism

on observation of behavior and treatment focuses

spectrum is the comprehensive IgG food allergy test.

on alleviating challenging behaviors. However, a

The most common foods prompting an abnormal

growing number of individuals within this expanding

reaction in children and adults on the spectrum are

community also acknowledge that there exists an

cow’s milk, cheese, yogurt, wheat, barley, rye, spelt

equally relevant biomedical component to the

and soy. We have documented these allergies at The

disorder that should not be overlooked in planning

Great Plains Laboratory by testing thousands of blood

treatment programs for individuals with autism

samples from people on the spectrum throughout the

spectrum disorders. While recognizing the need

world. Multiple articles in the medical journals report

for biomedical testing, both parents and medical

similar abnormalities.

professionals can be at a loss in understanding the

The incidence of high IgG antibodies to wheat and

array of tests available and how to determine which

milk is approximately 90% in people on the autistic

test(s) are most appropriate for a child or adult with

spectrum. Most individuals with IgG allergy or

an ASD.

sensitivity to cow’s milk are also allergic to goat’s milk.

The recommendations for testing that follow are

Other common allergies include peanuts, eggs, citrus

based on my 10 years experience as a Laboratory

fruit, corn, sugar and baking yeast. There are various

Director of The Great Plains Laboratory, a medical

allergy tests available. So it is very important to check

laboratory that has performed more testing for people

which type of allergy test is being offered. Although

on the autism spectrum than any other place in the

helpful in some cases, I have not seen IgE food allergy

world. My recommendations are now also based on

testing to be as valuable for individuals with ASD.

experience with my own 14-year-old stepdaughter,

Unfortunately, this is the only kind of food allergy test

Paulina, who has severe autism.

that most laboratories offer.

Determining whether or not IgG food allergies are

present is important. These allergies or sensitivities

37

The Official Autism 101 Manual

are associated with the reaction of foods with certain

teacher’s clothes and trigger allergic reactions in the

white blood cells that release powerful cytokines,

child. The child was transferred to another teacher

protein substances like gamma-interferon that

and the severe behavioral reactions ceased.

can cause profound behavioral changes and even

psychosis. IgG allergies are found in children and

Testing for yeast

adults on the entire autistic spectrum, including

autism, PDD and Asperger’s Syndrome. These

Another very common abnormality in autism is a

abnormalities are also very common in attention

gastrointestinal overgrowth of Candida. Candida

deficit disorder.

is a member of the yeast family—a type of fungus.

Wheat and milk restriction has been one of

Drugs that kill yeast or fungus are called antifungal

the most successful treatments for individuals on

drugs. The greatest bulk of Candida is present in the

the spectrum. Prior to initiation of the gluten and

intestinal tract, although it may occasionally enter

casein free diet, Paulina spent most of the day

the bloodstream and has been detected in the blood

screaming, crying, throwing tantrums and pulling

of children with autism by a highly sensitive test

things off the shelves. She could not go to dinner at

called PCR that measures the Candida DNA. There

a restaurant because she was so hyperactive that she

are about a dozen species of Candida but three of

would squirm out of her seat and wander around the

the most common are Candida albicans, Candida

restaurant. All of these difficult behaviors ceased after

parapsilosis and Candida krusei.

implementation of the gluten free and casein free diet

There are many reasons for controlling Candida

(as well as an antifungal treatment).

overgrowth. Excessive Candida can inhibit normal

digestion and absorption of nutrients into the

Testing for Celiac disease

bloodstream, as well as prevent the production of

important vitamins needed for optimal health.

Celiac disease is another common disorder of wheat

Candida produces many toxic by-products, including

intolerance with an incidence of about 1:150 among

gliotoxins, which can impair the immune system. In

people of European descent. The incidence of this

addition, large portions of a Candida cell wall protein

disorder does not appear to be higher in those on

(HWP1) have a structure that is virtually identical to

the autism spectrum than in the general population,

the wheat protein gluten. Because of this similarity,

although people on the spectrum occasionally have

Candida binds to the enzyme transglutaminase, which

celiac disease also. Celiac disease can be confirmed

is present in the intestinal lining. This binding to

by the presence of antibodies to the intestinal

transglutaminase anchors long strands of the yeast

enzyme transglutaminase, which is involved in the

cells to the intestine like ivy vines climbing a brick

biochemical processing of gluten.

wall. This anchoring inhibits the yeast from being

mechanically dislodged as digested food passes by.

Inhalant allergy testing

The binding of Candida to transglutaminase also

interferes with the normal function of this enzyme

Allergies to things in the air are termed inhalant

in the digestion of gluten. If pieces of the Candida

allergies. In contrast to food allergies, these allergies

cell wall protein (which is similar to gluten) enter

do need to be tested with IgE tests. Some of the

the bloodstream, they may react with one of the

most common allergies are mold, mildew, pollen,

blood clotting factors that also has transglutaminase

cats, dogs, birds and dust. One child with autism

activity, leading to interference in the blood clotting

had a severe behavioral reaction whenever a certain

mechanism. These modified proteins may not be

special teacher entered the classroom. After testing

recognized by the immune system, which can lead to

for inhalant allergies, we found that the child had

autoimmune diseases. Lastly, the Candida cells can

severe cat allergies. The teacher was a cat lover and

also produce digestive enzymes like proteases and

had several at home. The cat hair would get on the

phospholipase that actually eat away the intestinal

38

Medical testing — William Shaw, Ph.D

lining, allowing undigested food molecules to pass

expects to have a test for this defect available shortly

through into the bloodstream, and as a result, cause

and a possible treatment as well.

more food allergies.

Alongside the GF/CF diet, reducing or eliminating

Candida can be detected by culturing the stool on

yeast overgrowth has been one of the more effective

Petri dishes or by measuring the amount of chemicals

methods of reducing autistic symptoms. Paulina had

produced in the intestinal tract. These by-products

been on antifungal treatment (Nystatin) for several

can be measured in the urine organic acid test (OAT),

years, but her behavior began to deteriorate markedly.

which also checks for inborn errors of metabolism,

Testing showed that her yeast had developed

nutritional deficiencies and other factors. These

resistance to Nystatin. With this change, she had

chemicals or fermentation products are absorbed

become extremely hyperactive and unco-operative.

from the intestinal tract by the blood vessels that are

She spent much of the time crying and whining, had

cal ed the portal veins. These blood vessels carry these

difficulty sleeping and pulled things off the table.

fermentation products to the liver where they are

Within six hours of starting the antifungal drug

distributed throughout the bloodstream. The blood

Diflucan, her normal smiling behavior returned.

containing these fermentation products is filtered

Unfortunately, with prolonged use, Diflucan can

through the kidney, and they are excreted in the urine.

sometimes cause liver damage. So we implemented

It is important to know that stool testing can

a limited carbohydrate diet to help control the yeast

frequently miss the presence of Candida when there

after we discontinued the Diflucan. With successful

are high amounts of antibodies cal ed IgA in the

antifungal treatment, parents have reported reduced

intestine. These IgA antibodies may coat the yeast

aggressive and self-hurtful behaviors, improved

cel s and inhibit their growth enough to prevent them

learning at school, improved focus and concentration,

from growing in the Petri dish even though they may

better sleep and reduced hyperactivity. Many parents

stil be able to grow enough in the intestine to cause

don’t realize that antifungal treatment is a long-term

problems. Such a situation can lead to a false negative

issue in autism; others treat it with antifungal drugs

result.

that are ineffective. It’s important that antifungal

By testing the yeast fermentation products

treatment be done under the supervision of a qualified

in urine, this problem can usually be overcome.

medical professional. A less expensive microbial

However, about 10% of yeast do not produce the

organic acid test can be done regularly to make sure

common fermentation products. We have resolved

that the yeast or harmful bacteria have not returned.

this problem by offering a COMBO test for both

the yeast fermentation products—the urine organic

Testing for Clostridia

acid test (OAT)—as well as the yeast culture from

stool. If the yeast can be cultured, there is the added

Several years ago, I began a collaborative study with

advantage that the sensitivity of the yeast to various

Dr. Walter Gattaz, a Research Psychiatrist at the

drugs or natural agents can be determined. Many

Central Mental Health Institute of Germany, in

yeasts have developed resistance to various antifungal

Mannheim, to evaluate urine samples of patients with

drugs because of the widespread use of these drugs in

schizophrenia. These samples were very valuable since

people with human immunodeficiency virus (HIV)

they were obtained from patients who were drug-

infection. Like people with HIV, many people on the

free. Thus, any biochemical abnormalities would be

autism spectrum have a serious lack of immunity to

due to their disease and not a drug effect. Five of the

Candida. One possible reason that people with autism

12 samples contained a very high concentration of

have this problem is that the measles vaccine virus

a compound identified as a derivative of the amino

can severely impair the ability of the cellular immune

acid tyrosine, which is very similar, but not identical,

system (Vaccine Jan 8, 2001) to control Candida.

to 3,4-dihydroxyphenylpropionic acid. I have since

We have found this same lack of cellular immunity

identified this compound as 3-(3-hydroxyphenyl)-3-

in people with autism. The Great Plains Laboratory

hydroxypropionic acid or HPHPA. This particular

39

The Official Autism 101 Manual

compound has been linked to colonization of the

about 50% mercury, and large fish such as tuna and

intestinal tract with Clostridia bacteria.

swordfish.

How is this important to autism? HPHPA is

Mercury exists in two major forms, inorganic

found to be much higher in the urine of autistic

and organic. Inorganic mercury consists of metallic

children than in normal children. People with autism

mercury and inorganic mercury compounds

who have high values of this compound may have

called salts. Metallic mercury is a liquid at room

extremely abnormal or even psychotic behavior.

temperature. It is the shiny silver material in

One child with high amounts of HPHPA in urine

thermometers and is commonly combined

kicked out the windows of the family car while being

with silver as an alloy for dental fillings. Liquid

transported to school. Clostridia can be treated with

mercury from thermometers can give off vapor if a

the antibiotics Vancomycin or Flagyl. The first patient

thermometer breaks, which could then be absorbed

in a medical study improved after Flagyl treatment

through the lungs. Mercury is also used in alkaline

but then regressed when the drug was discontinued.

batteries. Organic mercury compounds include

The same child was retreated with a six-week course

methylmercury, ethylmercury and phenylmercury.

of Vancomycin. A developmental specialist estimated

Methylmercury is produced from inorganic mercury

that the child had gained six months of development

by microorganisms in the environment and perhaps

after the six weeks of therapy. Again, the child

by the microorganisms in the intestinal tract.

regressed after discontinuation of therapy. The use

Methylmercury is extremely toxic. Exposure to three

of beneficial bacteria, Lactobacillus acidophilus GG,

drops of methylmercury to the gloved hands of a

whose brand name is Culturelle, is very useful in

researcher was fatal. Mercury exposure should be

controlling Clostridia species in most cases and can

avoided at all costs.

be safely used for years if necessary. This product has

It is important to note that the symptoms of

about a millionth of a gram of the milk protein casein

mercury toxicity closely mirror the clinical symptoms

in each capsule but such a small amount is unlikely to

of autism. Parents of a child who had developmental

have a significant effect in most milk-sensitive people.

delays and a muscle disorder contacted me because

Testing for HPHPA is also included on the full

the child’s tests had revealed high levels of mercury

organic acid test or microbial organic acid test of the

in the hair and blood. They reported that their

Great Plains Laboratory. It is important to be aware

child ate salmon or tuna five or six times a week.

that some laboratories incorrectly measure DHPPA

Although fish are an excellent source of essential

as a marker for Clostridia. DHPPA is a byproduct

fatty acids, most large fish have significant amounts

of chlorogenic acid, a common substance found in

of methylmercury. The FDA has recommended that

beverages and in fruits and vegetables such as apples,

pregnant women abstain from certain fish high in

pears, tea, coffee, sunflower seeds, carrots, blueberries,

mercury. Since methylmercury is fat soluble, it might

cherries, potatoes, tomatoes, eggplant, sweet potatoes

also contaminate supplements derived from fish oils.

and peaches. In addition, it is a chemical by-product

In addition, mercury was used as an antifungal agent

of the good bacteria E-coli and Lactobacillus.

in paint prior to 1992. Therefore, anyone in an older

house needs to be aware that peeling paint or sanding

The toxicity of mercury

off existing paint could lead to mercury exposure.

Mercury in the fillings of pregnant women may be a

Mercury is a naturally occurring metal found

significant source of exposure to developing infants in

throughout the environment. Mercury can enter

utero. Ethyl mercury, the most common preservative

the environment from deposits of ore containing

found in vaccines, has been present as a preservative

mercury due to wind or rain or from the actions of

in other products as well: contact lens solutions, nasal

humans. In addition to mercury from the vaccine

sprays, and in ear and eye drops.

preservative Thimerisol, major sources of mercury that

contaminate humans include dental fillings, which are

40

Medical testing — William Shaw, Ph.D

Testing for heavy metals

with this group. Many other tests may be useful

to people with autism of every age. Most tests are

Heavy metals may often have combined effects, so

covered by insurance, but HMOs generally do not

that exposure to multiple heavy metals at low levels

pay unless the physician gets advance approval from a

might be just as toxic as exposure to one metal at

review committee.

a high level. Heavy metals found to be elevated in

As concerned parents and professionals, it is

children and adults with autism and PDD include

vitally important that we be holistic in our approach

uranium, mercury, cadmium, arsenic, lead, aluminum

to treatment and investigate whether or not

and antimony. Hair is the easiest sample to collect in

biomedical/biochemical agents are contributing to

most cases and is generally considered one of the best

autistic symptoms. Only then will we be best able

samples for screening for heavy metals since a heavy

to successfully reduce or eliminate the behavioral

metal like mercury may be present in the hair at a

challenges associated with ASDs.

level 250 times higher than in the blood. However,

the use of hair metal testing is controversial. The

State of New York bans hair testing for heavy metals,

while the Environmental Protection Agency (EPA)

of the U.S. Government promotes hair screening for

mercury as a very useful method. In New York State

tests for heavy metals in blood or urine may have to

be used instead of hair. Chelation treatment with the

chelating agent DMSA is probably the most effective

treatment at this time for those people with abnormal

values.

Multiple tests can be very useful to pinpoint

the most significant biochemical abnormalities

and to focus treatment on the most important

issues. Although each autistic child will experience

varying levels of success with biomedical testing and

treatments, I would like to share one success story

that outlines what can happen in some cases. Three

years ago, a family came to visit from Turkey with

their four-year-old son with severe autism. They

insisted that they wanted every single test offered by

the laboratory. I tried to convince them to reduce

the financial burden by suggesting which tests might

be delayed to a later time. They would not listen

and insisted firmly that they get every test available.

Two years later I received a letter from the parents

who had implemented all the therapies indicated by

the testing. Their son had completely recovered and

was successfully attending a regular school classroom

without an aide.

The tests emphasized in this article have been

useful to people with autism of every degree of

severity. Parents and treating professionals who want

to embark on biomedical testing should first start

41

Study: Pediatricians do not always recognize

ASD symptoms in infants

Contributing Author Lawrence P. Kaplan, Ph.D., Health Administration and Research with an emphasis in autism spectrum disorders, Kennedy-Western University—Dr. Kaplan is the Executive Director of US Autism and Asperger Association, Inc., a national association dedicated to enhancing the quality of life of individuals and their families/caregivers touched by autism spectrum disorders by providing educational and family support through conferences/seminars and published and electronic mediums. Dr. Kaplan is the author of Diagnosis Autism: Now What? 10 Steps to Improve Treatment Outcomes.

Resources and links— Lawrence P. Kaplan, Ph.D. suggests visiting his Autism Today website to learn about his other products and services: Visit <http://kaplan.autismtoday.com> today! (*Please note, don’t put in the www.) You can reach Dr. Kaplan at US Autism and Asperger Association by calling 1-888-9AUTISM or by writing < drlkaplan@usautism.org>.

According to a new study by Special Abilities,

There is compelling evidence in medical literature

Inc., pediatricians do not always recognize the

that intensive behavioral therapy, beginning before

symptoms of ASD in infants, potentially delaying the

age three and targeted toward speech and language

benefits of intervention and therapy.

development is successful both in improving language

Autism is a complex neurological disorder

capacity and later social functioning.

that may be characterized by profound delays in

“It is imperative to recognize the symptoms of

communication and social interaction and that affects

ASD in a timely manner, preferably in the first two

over 1.7 million individuals in the United States.

years of a child’s life,” says Dr. Kaplan. “Providing an

“This is an important issue,” says Lawrence P.

appropriate early diagnosis, whether it be of autism

Kaplan, Ph.D., chief investigator for the study on

or even developmental delay, means that an early

early diagnosis of ASD. “This research shows that

treatment program can be started for the child.”

although pediatricians are given sufficient clinical

As a parent of a child with ASD, and the author

diagnostic protocols to identify developmental delays

of Diagnosis Autism: Now What? 10 Steps to Improve

in infants, there (can be) a significant delay of the

Treatment Outcomes, Dr. Kaplan says that intervention

early diagnosis of ASD.”

before age two is extremely effective. “It’s just trying

In a response from over 500 parents whose

to get the pediatrician to identify some type of

children were diagnosed with ASD, only 2.7% of

developmental delay as soon as possible,” says Dr.

pediatricians diagnosed any degree of autism. The

Kaplan.

diagnosis was made by developmental pediatricians

Dr. Kaplan says that his goal is to get more

in 20.4% of cases, psychiatrists in 35.4% of cases,

pediatricians to reach the diagnosis of autism earlier.

neurologists in 20.4% of cases and others, including

This may help thousands of children take advantage

psychologists and neuropsychologists in 36% of cases.

of the earlier intervention treatment programs that

Nearly 50% of the children were diagnosed after

have proven successful for other children with ASD.

the age of three. About 10% of the children were

The research was funded by Special Abilities,

diagnosed with autism during the 12–24 month

Inc., a 501(c)(3) not-for-profit organization that

age period, while none were diagnosed before age

was founded in 1995 and is dedicated to improving

one. Half of the children were diagnosed after age

outcomes for children with autism spectrum disorders

three. Some 58% of pediatricians did not notice any

by promoting public awareness, and providing

developmental delay in children who were eventually

educational programs for parents and assistance to

diagnosed with ASD.

special education schools.

42

Chapter 3—Historical

perspectives on autism

Historical perspectives

on autism

CHAPTER 3

43

How autism has been understood

Contributing Author Lawrence P. Kaplan, Ph.D., Health Administration and Research with an emphasis in autism spectrum disorders, Kennedy-Western University—Dr. Kaplan is the Executive Director of US Autism and Asperger Association, Inc., a national association dedicated to enhancing the quality of life of individuals and their families/caregivers touched by autism spectrum disorders by providing educational and family support through conferences/seminars and published and electronic mediums. Dr. Kaplan is the author of Diagnosis Autism: Now What? 10 Steps to Improve Treatment Outcomes.

Resources and links— Lawrence P. Kaplan, Ph.D. suggests visiting his Autism Today website to learn about his other products and services: Visit <http://kaplan.autismtoday.com> today! (*Please note, don’t put in the www.) You can reach Dr. Kaplan at US Autism and Asperger Association by calling 1-888-9AUTISM or by writing < drlkaplan@usautism.org>.

Introduction

child with an inadequate form of mentation which

I

manifests itself in the inability to handle symbolic

t would be an understatement to say that a wide

forms and assume an abstract attitude.”

range of hypotheses are used to account for autism-

During the mid-1960s, understanding of autism

related disorders. Historically, the disorders have

continued to shift. In 1964 Bernard Rimland

been understood mainly through psychoanalytical,

published a biogenic theory of autism: “The basis of

neurobiological, genetic and executive function

the autism syndrome is the child’s impaired ability

approaches. There have, however, also been

to relate new stimuli to remembered experience.

combinations of unrelated approaches.

Hence, the child does not use speech to communicate

because he cannot symbolize or abstract from concrete

Historical definition of autism

particulars. And he is unresponsive to his parents

because he does not associate them with previous

Bleuler defined the concept of autism in 1911,

pleasurable experiences.” Rimland thought that the

believing it was not a separate condition but one of

underlying cause of autism was an impairment in the

the secondary effects of schizophrenia.

brain’s reticular formation—the part of the brain felt

Thirty-two years later, in 1943, Leo Kanner

by many to link sensory input and prior content.

described autism as a rare psychiatric disorder with

During the 1960s and into the 1970s researchers

onset before age two-and-a-half years of age. Kanner’s

offered biogenic explanations of autism—theories

definition and his subsequent description of its main

focusing on biochemical and metabolic anomalies in

distinguishing characteristics made autism a medical

people with autism, or on the role in the development

entity (Kozloff, 1998). As a new psychiatric medical

of autism of various problems of the central nervous

entity, the practitioners of the day offered as treatment

system. Autism was beginning to be viewed as a

psychoanalytic forms of therapy.

neurological disorder.

By the late 1950s, current thinking about

This viewpoint is still very much with us. Speaking

autism was changing. In 1959, for example, Bender

at the 1999 National Conference of Autism, James

characterized autism not as an inborn impairment of

Ball referred to autism as a complex developmental

the central nervous system, but as a defensive reaction

disability resulting from a neurological disorder that

to one—a disorder whose basis is an inability to shield

affects the functioning of the brain.

self from unbearable anxiety. A year later, C.E. Benda

That year, clinical practice guidelines on autism

wrote that the autistic child is “not mentally retarded

published by New York State referred to it as a part

in the ordinary sense of the word, but rather is a

of a clinical spectrum of pervasive developmental

44

How autism has been understood — Lawrence P. Kaplan, Ph.D.

disorders. “Autism is a neurobehavioral syndrome

caused by dysfunction in the central nervous system,

which leads to disordered development.”

Beginning in the mid-1960s and carrying forward

through the 1980s to 2000, researchers have turned

to genetics, searching for the genetic error, perhaps

inherited, underlying the development of autism. The

roles of several candidate genes are being studied.

In the 1990s, other approaches to autism were

described, including the executive functions approach,

the hypothesis that autism results from early life

brain damage, the theory that autism is the result of

neuro-immune dysfunction, and that it is the result of

autistic enterocolotitis, which may be linked with the

measles, mumps and rubella vaccination.

45

Chapter 4—Dealing with autism

Dealing with autism

CHAPTER 4

47

Addressing behavioral challenges for

individuals with ASD

Contributing Author Lori Ernspberger, Ph.D., Special Education, Indiana University—An expert in the field of autism and behavioral disorders, Dr. Ernspberger has over 17 years of experience as a public school teacher, administrator and behavioral consultant. She owns and operates Autism and Behavioral Consulting, a firm based in Henderson, Nevada, that works with school district personnel and parents to provide effective educational programs and best practice strategies for students with autism and behavioral disorders. Dr. Ernspberger’s book, Keys to Success for Teaching Students with Autism, has been very well received since its publication in 2003.

Resources and links— Lori Ernsperger, Ph.D. suggests visiting her Autism Today website to learn about her other products and services: Visit <http://ernsperger.autismtoday.com> today! (*Please note, don’t put in the www.) You can contact Dr. Ernsperger by writing <lorierns@netnevada.net>.

Introduction

Principles of proactive programming

Effective teaching strategies for students with autism Highly effective programs for students with autism require development of a systematic program for ad-emphasize proactive strategies for reducing problem

dressing problem behaviors. Students with autism often

behaviors and teaching replacement skills. Proactive

exhibit a wide variety of chal enging behaviors, includ-

programs:

ing physical aggression, self-injury, tantrums and non-

• Assume the problem behavior serves a

compliance. These behaviors are disconcerting to staff

purpose for the student and attempts to

and parents, and should be resolved. Developing effec-

teach alternative and replacement skills that

tive behavior intervention programs is often the most

serve the same function

important step for the classroom or home. The fol ow-

• Modify the antecedents and environmental

ing are important elements of an effective program:

controls

• Begin by determining the function of the

• Reviewing the elements of a functional

maladaptive behavior for the student

assessment

• Seek replacement behaviors for the

• Developing and writing a behavior

maladaptive behavior

intervention plan

• Identifying the principles of active

programming

Principles of reactive programs

• Teaching replacement skills

Systematic reactive programs can effectively decrease

• Reviewing environmental controls

the frequency and duration of problem behaviors.

• Implementing compliance training

Unfortunately, most classrooms for students with

• Planning reactive programming

autism focus entirely on reactive programming.

• Developing a crisis management plan

Reactive programs:

An effective program for managing problem

• Wait for the maladaptive behavior to occur

behaviors focuses on two main strategies: proactive

and then respond with a punishment

programming and reactive programming.

• Focus on the consequences of the behavior

• May ultimately reinforce the maladaptive

behavior

49

The Official Autism 101 Manual

• Do not significantly or permanently change

Step 1: Define target behavior

maladaptive behaviors

First, define an observable and measurable target

behavior. The problem behavior targeted for a

Functional assessment

functional assessment will vary with the student. The

team may choose to target a behavior which can be

A comprehensive intervention program for students

easily corrected before moving to more challenging

with autism will provide a careful balance between

behaviors. Targeting lesser behaviors may build

both a proactive and reactive program. This involves

success for the student and staff and make changing

conducting a thorough functional assessment and

more challenging behaviors easier.

developing an appropriate behavior intervention plan.

If, however, behaviors are harmful to the student

A thorough functional assessment is the first

or others, the team may choose to work on several

step in a proactive program. It begins the process of

behaviors at once. All identified target behaviors

understanding the purpose of the student’s behavior

must be clearly defined and measurable to ensure

and what the student is trying to communicate. The

consistency across settings.

goal of a functional assessment is to identify the

purpose and effect of a target behavior by examining

Step 2: Information gathering

its function for the student.

Collect information from a variety of sources. The

An effective functional assessment is built on

team may interview teachers, parents and related

several assumptions:

service personnel who work with the student.

• That the problem behavior serves a function

Interview data focuses on the antecedents and

for the student. A student exhibiting problem

consequences of the behavior. Interview adults who

behaviors is using a functional approach to

have a significant relationship with the student and

communication to achieve a specific outcome.

who can contribute to defining the target behavior

Therefore, school personnel must conduct a

and function.

functional assessment to thoroughly understand

Information may also be collected through direct

function of the behavior for the student.

observation. Observations focus on the frequency,

• That if a student is repeating a problem

duration and intensity of the target behavior.

behavior, then the consequence of the behavior

Observations should occur in the natural settings

has been reinforced for that student in the past.

where the target behavior is exhibited. Direct

Each of us tends to repeat behaviors that are

observations also include an analysis of environmental

positively reinforced.

factors that may contribute to the maladaptive

• That a student exhibiting problem behaviors

behavior.

often does not know the correct adaptive

Physiological factors are the last area of data

skills or has not been reinforced effectively for

collection which may influence problem behaviors.

displaying appropriate adaptive behaviors.

Students with autism often have potential medical

issues that are causing an increase in maladaptive

Functional assessment made easy

behaviors. Physiological areas to be considered in a

functional assessment include:

Whether mandated through an IEP team or conduct-

• Diet and nutrition

ed as an informal assessment by the classroom staff,

• Sleep patterns and fatigue

a functional assessment can be conducted efficiently

• Medication side effects

and easily with the right tools.

• Sickness

• Stress outside the classroom

50

Addressing behavioral challenges — Lori Ernspberger, Ph.D.

It is important to carefully consider how these

(e) Stress/Frustration

variables influence problem behaviors. If the

• Is the student stressed?

student is hungry or thirsty and has no functional

• Does the student have adequate skills to release

communication system, the outcome will be

stress in an appropriate manner?

irritability and an increase in problem behaviors. The

• Is the classroom environment chaotic?

classroom team can effectively address these issues and

• Does the student seem calm or relaxed after the

reduce further problem behaviors.

problem behavior has stopped?

(f) Self-stimulation or sensory stimulation

Step 3: Developing a hypothesis

• Is the behavior part of the stereotypical pattern

In this step, review the data and identify the function

of behaviors?

of the problem behavior. The function of problem

• Is the environment producing adequate

behaviors varies with each student. The following are

stimulation?

a few common functions and applicable questions to

• Does the student have frequent opportunities

be addressed by the team:

for sensory integration?

(a) Escape/Avoidance

• Does the student repeat the behavior when

• Is the task too difficult?

alone?

• Is the student bored?

• Does the student appear unaware of his

• Does the behavior start when a request or

surroundings?

demand is made?

• Does the activity take too long?

The multidisciplinary team examines the information

• Is the classroom too noisy?

collected and develops a written statement regarding

• Does the behavior stop when the student is

the function of the behavior. A clear hypothesis

removed from the activity?

statement is written in a positive manner, based on

(b) Attention

facts from information gathering. The following are

• Is the student receiving adequate attention for

examples of hypothesis statements:

NOT displaying the problem behavior?

• Morning circle is too long for Jonathan, and he

• Are other students receiving more attention?

bites other students to escape the task.

• Is the student alone for long periods?

• Samantha refuses to complete her morning

• Does the student exhibit the behavior when

math work because she requires additional

they are alone?

adult assistance. When the teacher is helping

• Does the behavior occur to get a reaction?

other students, Samantha attempts to run out

(c) Power/Control

of the room to get immediate attention from

• Is the student given choices in the classroom?

the teacher.

• Are there opportunities for the student to take a

• When Stephen goes to the cafeteria with the

break?

fifth grade class, he pushes other students and

• Does the behavior stop after the student

runs down the hallway to be first in line and to

receives a desired object?

avoid waiting with the other students.

(d) Communication

Each hypothesis statement identifies the target

• Does the student have a functional and reliable

behavior and provides an “informed guess” as to the

communication system?

function of the behavior for the student.

• Is the student provided with the necessary

equipment to communicate wants and needs?

Key concept: functional communication — Students

• Does the behavior seem to be a way for the

with ASDs often have severe deficits in expressive

student to ask for help?

language and communication skills. Therefore, there is

51

The Official Autism 101 Manual

a strong need for alternative communication systems.

Key concept: teaching replacement skills — Teaching

Augmentative and alternative communication devices

the desired replacement skil should result in:

allow the student to communicate and respond to the

• Meeting the same function or purpose for

environment. Problem behaviors will only persist or

the student

increase if the student is unable to communicate basic

• Teaching a skill that can be implemented

needs.

across settings

• An efficient and effective alternative for

Step 4: Developing a behavior

the student

intervention plan

The behavioral intervention plan is a written

Teaching replacement behaviors to students with

document that includes:

autism uses a variety of instructional techniques.

• An operational definition of the target behavior.

While discrete trial instruction and incidental

• Summary of the relevant data.

teaching are highly effective strategies in teaching

• Written hypothesis statement stating the

replacement behaviors, the classroom staff can also

function of the behavior.

implement other techniques including shaping,

• List of modifications to the environment.

differential reinforcement and token economies.

• Teaching replacement or alternative behaviors.

• Criteria or outcome evaluation.

Reinforcement strategies

• Consequence strategies: crisis intervention plan

and reactive programming.

Since all people are motivated by positive

reinforcement, using reinforcement strategies is a

Most school districts have developed appropriate

key element for teaching students with autism. Most

forms to be used for a written behavior intervention

typically developing students are reinforced through

plan. If no form is readily available, the teacher can

task completion and teacher praise, but students with

easily create an individualized plan for use in the

autism are not typically reinforced through these

classroom.

internal methods. They require external motivation

The behavior intervention plan requires two

to maximize their learning and increase adaptive

main components: teaching replacement skills and

behaviors. Therefore school personnel must identify

modifying the environment. Teaching replacement

appropriate reinforcers and use them effectively

skills or alternative behaviors assumes that the

throughout the school day. Types of reinforcers

student’s problem behavior is meeting a need for

include edibles (but use these seldom and only while

the student and that the student may not have the

other reinforcers are being developed), tangibles,

skills required for more adaptive behaviors. The

social praise and activities.

replacement behavior, therefore, must be as effective

and powerful as the maladaptive behavior.

Guidelines for selecting reinforcers

For example, if Zachary receives immediate and

Selecting reinforcers for students with autism is

intense attention from the teacher for biting another

a continuous process which changes throughout

student, the new replacement behavior must also give

the school year. Not all students are motivated by

Zachary the same immediate and intense attention

the same items. Selecting appropriate high-quality

from the teacher. Teaching Zachary to raise his hand

reinforcement involves:

and wait several moments for the teacher’s attention

• Observing the student in the classroom;

will not be an effective alternative skill.

• Completing a reinforcement survey; and/or

• Interviewing the student or other adults.

52

Addressing behavioral challenges — Lori Ernspberger, Ph.D.

The reinforcement interests of some students may

Environment and curriculum

be readily apparent, while reinforcing other students

modifications

requires investigation. Some students may have little

experience playing with certain toys and games and

Although teaching replacement skil s to the student

therefore must be taught to enjoy specific items or

is a daily activity and an integral part of the behavior

activities.

intervention plan, the classroom staff must also ad-

dress environmental modifications. After completing a

Avoid bribery

classroom inventory, the teacher must review the needs

Reinforcement depends on the student’s completion

of each student. Although the overal classroom may

of a task or of his exhibiting a desired behavior.

be arranged appropriately, some students wil have spe-

Therefore reinforcement is NEVER to be used as

cific needs that must be addressed. Additional modi-

bribery. For example, reinforcement would not be

fications, tailored where possible to the specific needs

provided to a student in the middle of a tantrum. Nor

of each student, wil help ensure on-task behavior and

would a student receive a high-quality reinforcer to

increased independence.

entice him into working. Bribery teaches the student

Specific modifications may include:

that he does not have to comply in order to achieve

• Level of support: The student may need

the desired outcome.

more adult assistance to learn a new skill.

• Time: The student may require more or less

Reinforcement schedules

time to complete an assigned task.Some

Reinforcement is provided to the student after the

students may need more breaks in their

student has met the predetermined criteria for a

schedule.

task or has exhibited a desirable behavior. The rate

• Level of difficulty: Be sure to create a

of reinforcement will be based on the task and the

curriculum that is neither too easy nor too

individual skills of the student. A reinforcement

difficult. Unchallenging repetitive tasks

schedule will assist the staff in determining the

create boredom for the student and will

appropriate timing for reinforcement.

likely increase maladaptive behaviors.

When first teaching a new skill or desired

behavior, reinforcement will be immediate and

Reactive programming

continuous. This immediate and continuous

reinforcement will insure repetition of the desired

Although the focus of teaching students with autism

behavior. As the student progresses with a newly

should be proactive programming, it is also essential

acquired skill or behavior, the reinforcement schedule

to develop a reactive program. In a reactive plan, the

will be thinned and become more intermittent. An

team determines the steps that will occur after the

intermittent schedule is like a slot machine: the

maladaptive or problem behavior is exhibited.

student receives the payoff at varying intervals and

There are several strategies available to school

will not know in advance when a payoff will occur.

personnel to address behaviors after they have

Delayed reinforcement is used in a token economy

occurred. The multidisciplinary team should

system where the tokens are earned and can be

consider the least intrusive methods for decreasing

exchanged for the reinforcement at a later time.

the likelihood of problem behaviors. Response

Delayed reinforcement should be systematically

cost, extinction and punishment are a few reactive

scheduled to increase the desired behavior.

techniques which may be used in a school setting.

Inconsistencies with delayed reinforcement increase

Reactive programming can further decrease the

student frustration and trigger problem behaviors.

frequency of problem behaviors and may help the

Again, the goal of reinforcement is to help the student

team regain control in a crisis. In a well-designed

become naturally self-motivating.

behavior program, reactive procedures will be used

minimally and then only with respect for the student.

53

The Official Autism 101 Manual

Response cost

in order to secure the environment for the student and

others. Minimal attention means:

A response cost technique reduces undesirable behavior

by removing a reinforcer. A response cost program is

• A calm and neutral voice

designed to remove a reinforcer when the problem be-

• Little or no eye contact

havior occurs.

• Minimal physical restraint

For example, the student may be highly reinforced

• Reduced demands

by working on the computer. Therefore, the teacher has

laminated the eight letters of the word COMPUTER

Extinction is a planned reactive intervention and

and placed each individual letter on the student’s desk.

should be used only when the function of the

Each time the student exhibits the problem behavior,

behavior is reinforced through attention from others.

one letter is removed from the word COMPUTER.

For every letter that remains at the end of the day, the

Aversions and punishment

student receives five minutes of computer time.

Other response cost programs may include point

I do not recommend using or implementing averse

systems or marbles in a jar. Response cost systems do

procedures in school settings for students with autism.

not teach replacement skil s and they focus only on the

Aversives can be characterized as intrusive procedures

consequence of the problem behavior.

requiring corporal punishment, use of water sprays,

performance of exercise or the deprivation of necessary

food and water. Aversives are not effective over time

Extinction

and may cause the student to fear the adult applying

Another reactive technique for problem behaviors is

the punishment. School personnel must report any

extinction. Extinction is the gradual decrease of the

aversive treatment to the proper authorities.

problem behavior as reinforcement is discontinued.

Even mild forms of punishment such as verbal

Extinction attempts to reduce the problem behavior

reprimands and simple restitution should be used

by eliminating the reinforcement that maintains the

cautiously. Timeout is often referred to as an effective

behavior.

punishment in a reactive program. Discretion must be

Many teachers try to use “planned ignoring” in

used when implementing time out procedures. Time

order to extinguish a problem behavior. Decreasing

out means that the student receives no reinforcement.

disruptive behaviors through planned ignoring wil

In the case of a typical y developing student, being

depend on the function of the behavior and the ability

moved from the classroom to an isolated area may be

of the teacher to completely eliminate reinforcement.

considered time out from reinforcement. Unfortu-

If the function of the behavior is attention, it is

nately, this is not general y the case for students with

imperative to remove al attention from the student.

autism. A student with autism wil most likely perceive

For example, a student who screams and tantrums for

the time out area as reinforcing because:

attention may stil have his needs met if he receives

• There are no demands being placed on him

attention not only from the adults, but also from

• The function of his behavior is escape and

the other students. Therefore, al positive attention

avoidance

must be removed before ignoring wil extinguish the

• He can initiate self-stimulatory behaviors which

problem behavior.

are highly reinforcing

Ignoring or paying little attention to problem

• He may require a break or quiet area time

behaviors can be an effective procedure in a reactive

program. Caution must be taken not to completely

Time out from reinforcement must be carefully

ignore self-injurious behaviors and aggression because

planned and used with caution to avoid reinforcing

of the likelihood the behavior wil escalate. In some

and increasing the problem behavior.

cases, the staff must provide some minimal attention

54

Addressing behavioral challenges — Lori Ernspberger, Ph.D.

Crisis management

these maladaptive behaviors are chronic, it may take

the school team and parents many months to effective-

Despite careful planning and the development of ac-

ly teach a new skil . Therefore, it is important to focus

tive programming, school personnel may occasional y

on the process and celebrate the smal changes.

be faced with a crisis. Phases of a crisis cycle are:

• Phase 1. Calm; optimal; comfortable level;

baseline

• Phase 2. Trigger

• Phase 3. Irritable; frustrated; demanding;

anxious

• Phase 4. Peak

• Phase 5. De-escalation

• Phase 6. Recovery

School personnel must be very aware of the specific

triggers for each student. Once a trigger has occurred

for the student, it is important that appropriate and

meaningful strategies be implemented to redirect

the student to a preferred task. Encourage the use of

previously taught stress management techniques. Also,

be sure to control your own response to the trigger.

Reduce any signs that you are agitated or stressed.

Practice, practice, practice

Crisis intervention is a serious undertaking. It requires

multiple opportunities to practice the correct proce-

dures. Because students are not in crisis every day, it is

important for the staff to practice their crisis interven-

tion skil s. Practice role playing different crisis scenar-

ios. Have each staff member devise a plan and discuss

the steps for intervention.

Conclusion

Again, reactive programming should occupy a small

portion of the overal behavior program for students

with autism. These procedures are only considered

after other strategies have failed. If a crises continues

to occur for a particular student, teachers should re-

evaluate and reassess to determine the function of

the behavior. The behavior intervention program for

students with autism and Asperger’s Syndrome should

focus on teaching replacement skil s and reinforcing

appropriately displayed behaviors. Because many of

55

Addressing masturbation

Contributing Author Mary Wrobel, speech-language pathologist and certified teacher—Ms. Wrobel is an autism consultant, and presents at autism workshops in the U.S. (and soon in Canada). She graduated with a Master’s degree from Western Illinois University in Macomb, IL in 1980. Ms. Wrobel is the author of Taking Care of Myself

Resources and links—Mary Wrobel, CCC, SLP suggests visiting her Autism Today website to learn about her other products and services: Visit <http://wrobel.autismtoday.com> today! (*Please note, don’t put in the www.) You can write to her at <marywrobel@aol.com>.

Masturbation is a natural, biological behavior, which consequences for masturbating, many students with humans of al ages occasional y engage in. It can

special needs stil continue to masturbate.

be a conscious, deliberate act or it can be a behavior

Masturbation can become especial y prevalent

performed without thinking or even understanding

during adolescence. According to recent statistics

its implications. Masturbation is regarded as a very

many teenagers masturbate. Ninety-five percent of al

private, sexual behavior. It’s typical y inappropriate to

teenage boys occasional y masturbate.

talk about it, and it’s never appropriate to perform it in

Seventy-five percent of teenage boys admit to

public. It’s also not a behavior we usual y think about

masturbating on a regular basis. Also, twenty-five to

with regards to others.

forty-five percent of teenage girls masturbate. Most

Early on we learn the social rule that it’s absolutely

parents of teenagers are not aware of these statistics

inappropriate to touch, rub and general y stimulate

because neuro-typical teenagers understand the social

our genital area in the presence of others. It’s not a rule

taboos of masturbation. They not only perform such

that we necessarily need to be taught. Young children

behaviors in private, but keep this information to

may discover the pleasurable sensations that masturba-

themselves and often hide the fact that they do, in fact,

tion can produce, and they may continue to engage

masturbate.

in it because they don’t understand the social rules

We need to realize that masturbation is a behavior

regarding masturbation. Eventual y, most children cor-

which might not go away. As teachers and parents,

rectly identify masturbation as a private matter and

it’s important to approach masturbation with a

learn not to discuss it or perform it in public.

calm, mature attitude. It wil not help the situation

Students with special needs, particularly those

if we get upset and angry about it. We start first by

with autism or mental impairment, are not likely to

learning why a student is masturbating. Surprisingly,

be embarrassed by masturbation or to understand

a child/student might not be masturbating for sexual

the social and moral taboos attached to it. Sometimes

gratification. There are other reasons for masturbation,

negative attention merely exacerbates a situation and a

especially with pre-adolescent children.

student wil continue the inappropriate behavior. The

student might enjoy the shocked reaction of others, or

Dealing With Young Children Who Masturbate

the negative attention when he or she masturbates in

Young children who masturbate often do so as a self-

front of others. Teachers and parents often mistakenly

calming, comfort response. They are often unaware

believe that a child wil eventual y tire of masturbating

they are masturbating, or that they are doing anything

and stop on his or her own. Sometimes that is true.

wrong.

But masturbation is a pleasurable behavior and it’s

If a young child is masturbating occasional y or

unlikely that an individual wil tire of it and give it

predictably, it/s important to first determine why

up completely. Even when punished, or given natural

they are masturbating. For instance, they may have

56

Addressing Masturbation — Mary Wrobel, CCC, SLP

discovered masturbating one time when they were

physical y abused if caught masturbating by other stu-

upset, or in need of sensory regulation, and the act of

dents or even other adults.

masturbating soothed them, calmed them and even

It is absolutely important that a student understand

helped them to sleep. After that initial self-calming,

that masturbating is a very private behavior: no one

they may have come to rely on masturbating to self-

should see it, no one should hear it, and no one should

calm in a variety of situations. A child could also have

know about it.

discovered masturbation when he or she was bored

Masturbating can only occur in very specific locations

and subsequently found something to play with when

and conditions: when an individual is alone in his or her

putting hands into pants. So, for example, when he’s

bedroom or bathroom with the door closed.

bored, a young boy may find it fun and enjoyable to

Parents need to accept the fact that their adolescent

play with his penis. And after playing with his genitals

child is masturbating and al ow him or her to mas-

he finds that it feels good. So perhaps every time he’s

turbate in the privacy of his or her own bedroom and

bored or seeking some enjoyment his hands go down

bathroom. If a teenager is not al owed to masturbate

his pants.

in appropriate, private locations such as bedroom and

When you know why a child is masturbating you

bathroom, then it is likely he or she wil masturbate in

will be able to find appropriate replacement behaviors

very inappropriate places such as a playground, a pub-

for the inappropriate, masturbation behavior. When

lic bathroom, at school, on the bus, etc.

a young child is masturbating, it’s important to

If you know a student or child is masturbating for

redirect him or her in a calm, matter of fact manner.

sexual gratification, you need to address it directly.

Establish highly motivating replacement behaviors

Talk about what happens as a result of masturbation.

for the masturbating, such as a large motor activity, a

Discuss erections and ejaculations, in the case of ado-

squeeze toy, reading a book, hugging a stuffed animal,

lescent boys. Al ow them to ask questions, and then

doing an activity that requires two hands, or sensory

answer them honestly. Talk about it with the adoles-

integration activities such as applying deep pressure.

cent until you know he or she ful y understands what

Once they are able to choose more appropriate

masturbation is and why it must be very private. The

replacement behaviors, reward them for doing a good

adolescent may want to establish his or her own pri-

job keeping hands on the table or other appropriate

vate routine for masturbating. That’s okay. But again

place. Realize that pre-adolescent masturbating feels

remind them that it must be private and no one, not

good and is comforting, but it is still more of an

even mom or dad, want to know about it. The excep-

habitual behavior rather than one for sexual release.

tion would be if there is pain, an unusual discharge,

or something abnormal, like a lump. Pain may be the

Dealing With Adolescents Who Masturbate

sign of an infection, such as a urinary infection; in

When an adolescent is masturbating on a regular

which case the adolescent should tel parents and a

basis, it is often purposeful behavior and unlikely

doctor about the problem. We should not be private

to stop. The adolescent is very likely getting sexual

about something if there is pain and sickness.

gratification from the masturbation.

At some point other sexual topics may come up,

Because of the sexual gratification, it is not likely

such as dating, sexual intercourse, sexual y transmitted

you wil be able to find a highly motivating replace-

diseases, birth control and pregnancy. When you feel

ment behavior for the masturbation. But because the

a student or child is able to understand these topics,

student is a teenager his or her masturbation wil not

then address them simply and directly. Let them know

be tolerated by society, as a young child’s might, and

the facts and always ask and answer questions clearly.

furthermore, the masturbation behavior may risk his

or her personal safety. In other words, a student may

invite molesting and sexual abuse if he or she mas-

turbates in public. In some cases, students have been

57

Monitor and chart your child’s development

(adapted from Step 1 in Diagnosis Autism: Now What? 10 Steps to Improve Treatment Outcomes) Contributing Author Lawrence P. Kaplan, Ph.D., Health Administration and Research with an emphasis in autism spectrum disorders, Kennedy-Western University—Dr. Kaplan is the Executive Director of US Autism and Asperger Association, Inc., a national association dedicated to enhancing the quality of life of individuals and their families/caregivers touched by autism spectrum disorders by providing educational and family support through conferences/seminars and published and electronic mediums. Dr. Kaplan is the author of Diagnosis Autism: Now What? 10 Steps to Improve Treatment Outcomes.

Resources and links— Lawrence P. Kaplan, Ph.D. suggests visiting his Autism Today website to learn about his other products and services: Visit <http://kaplan.autismtoday.com> today! (*Please note, don’t put in the www.) You can reach Dr. Kaplan at US Autism and Asperger Association by calling 1-888-9AUTISM or by writing < drlkaplan@usautism.org>.

Introduction

Professionals frequently use charts to document prog-

T

ress, predict reactions and behaviors, and ensure there

he first step to a productive parent–physician team

is a physical record of a patient’s history.

approach is to provide your physician with a thor-

Start by getting a spiral notebook and listing the

ough record of your child’s development. Accurate,

issues that concern those under the “autism spectrum”

complete records of your observations and concerns

label. The issues may be neurological, gastrointestinal,

are essential for accurate diagnosis and early interven-

communicative, social, behavioral, immunologic, nu-

tion treatment. Here, we wil look at tracking behav-

tritional or metabolic, or they may be related to al er-

iors and traits by:

gies or genetics.

• Maintaining a Daily Log that monitors your

For example, you may note that an autistic child

child’s development.

is sensitive to certain lights, sounds or smel s. If so,

• Reviewing common characteristics of autism

environments where these interact may pose special

spectrum disorders.

difficulties for the child. Places that might over-stimu-

• Developing a school activity chart to record

late a child include swimming pools, supermarkets and

your child’s daily activities.

fast-food restaurants.” Other behaviors and reactions

to chart may include:

Charting, using a Daily Log

• Little or no eye contact,

• crawling,

Monitoring your child’s development, to keep track

• eating habits (list all the foods your child eats

of his or her progress, involves setting up a system for

and drinks),

describing symptoms and behaviors. You may prefer to

• food reactions,

note behaviors on a calendar or complete a computer-

• frequency of urination and bowel movements,

ized diary. After many weeks of charting, you wil be-

• speech patterns,

gin to note relationships and patterns of behaviors.

• tantrums,

Charts can be kept by anyone. The more detail you

• and transitioning.

document and record, the better prepared you wil be

when you meet with health-care practitioners. In addi-

Al these should be charted. Recording them in a

tion to you and your spouse charting your child’s daily

Daily Log preserves them so that you have a record

activities, anyone in close contact with your child,

of them when you meet with your physician. (For

such as doctors, therapists and teachers can keep a log.

58

Monitor and Chart — Lawrence P. Kaplan, Ph.D.

more information on the Daily Log, visit < Diagnosis

Some autistic individuals are remarkably gifted in

Autism: Now What?> )

certain areas such as music or mathematics.”

Common characteristics of autism

Developing a School Activity Chart

spectrum disorders

Ask all of your child’s teachers to start tracking his

The following common characteristics of autism

or her behavior, cognitive skills and language. Some

spectrum disorders, from the <Autism Society of

schools supply a form for teachers to complete daily.

America,> should be noted when charting your child’s This is an excellent communication tool that allows

development for your health-care practitioner:

continuous monitoring of your child’s daily activity.

Based on the input from the school, you can chart

• Insistence on sameness; resistance to change.

the effectiveness of various interventions you have

• Difficulty in expressing needs; uses gestures or

been using over the course of a treatment program.

pointing instead of words.

A sample School Activity Chart is located at the

• Repeating words or phrases in place of normal,

end of Step 1 in <Diagnosis Autism: Now What?>

responsive language.

Information from the School Activity Chart notifies

• Laughing, crying, showing distress for reasons

the parent of the child’s activities throughout the day.

not apparent to others.

Let’s look at an example of how the School

• Prefers to be alone; aloof manner.

Activity Chart works. The parents are starting a new

• Tantrums.

gluten-free casein-free dietary therapy program.

• Difficulty in mixing with others.

They alert the school that the child will be starting

• May not want to cuddle or be cuddled.

the special diet on Monday and ask the teachers to

• Little or no eye contact.

eliminate dairy and gluten products. The parents

• Unresponsive to normal teaching methods.

supply appropriate snacks for the child to the school.

• Sustained odd play.

After one month of having teachers document

• Spins objects.

information on the School Activity Chart, the parents

• Inappropriate attachments to objects.

review the information to see if there are any changes

• Apparent over-sensitivity or insensitivity to pain

or improvements during this period of time. They

• No real fears of danger.

notice that the child has eaten most of his lunch

• Noticeable physical overactivity or extreme

and is very active, and his bowel movements have

underactivity.

improved. The teachers comment that the child has

• Uneven gross/fine motor skills.

shown interest in group activities and his eye contact

• Not responsive to verbal cues; acts as if deaf,

is better. The parents identify similar improvements in

although hearing tests in normal range.

the Daily Log and can now take the well-documented

information to the doctor for an evaluation of the

The <Autism Research Institute> adds: “Most autistic current intervention program.

children are perfectly normal in appearance, but

Remember that every individual with an autism

spend their time engaged in puzzling and disturbing

spectrum diagnosis is unique. No two individuals on

behaviors which are markedly different from those of

the spectrum will have exactly the same behaviors,

normal children. They may stare into space for hours,

strengths, deficits and challenges.

throw uncontrollable tantrums, show no interest in

people (including their parents) and pursue strange,

repetitive activities with no apparent purpose. They

have been described as living in a world of their own.

59

Chapter 5: Exploring the relationship

between autism and ADD/ADHD

Exploring the relationship

between autism & ADD/ADHD CHAPTER 5

61

What is the difference between

Asperger’s Syndrome and ADD/ADHD?

Contributing Author Sharon A. Mitchell, BA, B.Ed., MA, McMaster University, University of Saskatchewan, San Diego State University—Ms. Mitchell has been involved in the field of special education for over twenty-five years as a Resource Room teacher, counselor and consultant. She’s also worked in a hospital setting doing neuropsychological assessments. Her current position is as a Special Ed Consultant and Coordinator in an amalgamated school district. As well, she is seconded by the provincial department of education to present workshops on working students with autism spectrum disorders. Parents, school personnel, social workers, day care staff, occupational therapists, speech/language pathologists, psychologists, and counselors attend these workshops.

Resources and links—Sharon Mitchell, BA, B.Ed., MA suggests visiting her Autism Today website to learn about her other products and services: Visit < http://mitchell.autismtoday.com> today! (*Please note, don’t put in the www.) You can learn about Ms. Mitchell’s work by visiting her website, <http://www.sasklearningvillage.ca> .

Alternatively, you can write to her at <mitchell.sharon@gmail.com> . To aid in your search for ways to help your child, Ms. Mitchell recommends a visit to <http://www.angel-images.com> , a site run by a woman whose son has Asperger’s Syndrome and ADHD. For a free e-book on ASD, visit < http://www.pediatricneurology.com/

autism.htm>. For a free e-book on ADHD, visit < http://www.pediatricneurology.com/adhd.htm>. For a free ebook on learning disabilities, visit < http://www.pediatricneurology.com/learning.htm> .

Often, children with ADHD find themselves

the administrative functions of one’s life. Individuals

in conflict with their peers. They have

with impaired executive function may appear to live

trouble sticking to boring, mundane tasks. Their

moment to moment, failing to monitor their activities

organizational skil s may be weak. They find it hard

or social interactions to make sure plans are carried

to switch their attentional focus. They benefit from

out (or even made). With diminished ability to create

structure, consistent routines and visual approaches.

strategies, to handle more than on task at a time, to be

Sound familiar? These statements could just as

effective, reliable, and productive, the simplest job may

easily describe a child with Asperger’s Syndrome as a

be too chal enging.” (Osborn, 1998)

child with ADHD.

Click on the fol owing link to read more about the

In fact, many children who eventual y receive

components of executive functioning: < http://tbi.unl.

the label of Asperger’s Syndrome were previously

edu/savedTBI/executive/characteristics.html> . When diagnosed as having ADHD. Although they did

you look at the fol owing list, you can see how ADHD

display many of the characteristics of ADHD, that

and autistic tendencies overlap:

diagnosis didn’t quite explain al the symptoms.

• Pragmatic deficits

Did someone misdiagnose the first time around?

• Poor reasoning

Not necessarily. Keep in mind that Asperger’s

• Memory deficits

Syndrome and high functioning autism are stil

• Organizational deficits

relatively new diagnoses. Ten years ago, it was rare to

• Poor self-awareness

even hear the term Asperger’s Syndrome. And ASD

• Processing weaknesses

shares many characteristics with ADHD.

• Impulsivity

Part of the reason for the similarities lies in the

• Inattentiveness

area of executive functioning. The University of

Nebraska Lincoln’s site defines executive functioning

Dr. David Rabiner is renowned for his work in

as “the ability to organize thoughts and work, to

the field of attention deficit disorders. He lists the

create plans and successful y execute them, to manage

fol owing skil s as being at the heart of an ADHD

63

The Official Autism 101 Manual

person’s difficulties: “ . . . organization and planning

Kutsche also explains this difference between ASD

skil s, establishing goals and being able to use these

and ADHD: ADHDers typical y have trouble with

goals to guide one’s behavior, holding information in

“executive functions,” with subsequent difficulties in

memory, selecting strategies to accomplish these goals

their relationship with others. Usual y, though, they

and monitoring the effectiveness of these strategies,

have adequate capacity for empathy—but may have

being able to keep emotions from overpowering one’s

trouble inhibiting their behavior long enough to show

ability to think rational y, and being able to shift

it. Conversely, many children with ASD may appear to

efficiently from one cognitive activity to the next.”

have a short attention span but just aren’t able to stay

Sound much like autism? Read on.

focused on situations they don’t understand.

Rabiner explains that deficiencies in these areas

Learn more about Dr. Kutsche’s views by visiting

may cause: “ . . . poor tolerance for frustration,

< http://www.pediatricneurology.com/autism.htm/>.

inflexibility, and explosive outbursts that are seen in

While ADHD and autism may be separate

“inflexible-explosive” children. For example, if a child

disorders, they share some common traits. In fact,

has difficulty shifting readily from one activity to the

there are many disorders with characteristics similar

next because of an inherent cognitive inflexibility, it

to those shown by people on the autism spectrum,

may explain why he or she becomes so frustrated when

particularly in the areas of executive functioning,

parents request that he/she stop playing and come

social pragmatics, language processing and sensory

in for dinner. Such a child may not be intentional y

sensitivities.

trying to be non-compliant, but their non-compliance

Although sometimes needed for funding purposes,

may instead reflect trouble with shifting flexibly and

does the particular label real y matter? Perhaps the

efficiently from one mind-set to another.”

most important thing is finding strategies that help

You can read more about this and Dr. Rabiner’s

that child be al that she can be, no matter what the

work at < http://www.help4adhd.org>.

diagnosis.

Martin Kutsche, MD, with the Department

for Pediatrics and Neurology at New York Medical

Col ege say it is probably best to consider ADHD as

sometimes sharing the fol owing symptoms with—but

not being part of—Autism Spectrum Disorders:

• Poor reading of social clues (“Johnny, you’re

such a social klutz. Can’t you see that the other

children think that’s weird?”)

• Poor ability to utilize “self-talk” to work

through a problem (“Johnny, what were you

thinking?! Did you even think this through?”)

• Poor sense of self-awareness (Johnny’s true

answer to the above question is probably, “I

don’t have a clue. I guess I wasn’t actually

thinking.”)

• Do better with predictable routine .

• Poor generalization of rules (“Johnny, I told

you to shake hands with your teachers. Why

didn’t you shake hands with the principal?)

64

The Difference Between Autism, Aspergers Syndrome,

ADD and ADHD

Contributing Author Diane Burns, who lives in Dallas, Texas, has written Autism? Aspergers? ADHD?ADD? A Parent’s Roadmap to Understanding and Support! a safe, humorous novel to guide parents to action. With advance warning, she helps readers navigate the emotional roadmap of accepting a different child, while motivating them into action.

Resources and links—Diane D. Burns suggests visiting her Autism Today website to learn about her other products and services: Visit < http://burns.autismtoday.com> today! (*Please note, don’t put in the www.) I’m so sorry you had to ask. Imagine being surround-The most important thing to take with you from

ed every day by family and friends, schoolmates

this chapter is that each one of these developmental

and employers, al glowing with symptoms of autism,

differences are treatable. Whether it’s autism or ADD,

Asperger’s syndrome, attention deficit disorder and

treat the child, not the diagnosis. Listen to your child

attention deficit hyperactive disorder, and one stil has

for they are your best laboratory. Ask for help. And

to make gargantuan efforts to decipher the vocabulary.

remember, always remember, there is hope. I give you

In a perfect world, parents would be able to step in to

a standing ovation for your efforts.

their doctor’s office with a few observations and step

out with an understanding. Instead, it’s like playing a

shel game with a different diagnosis under each cup,

Autism, Asperger’s Syndrome,

thus the “Let’s Pick This One Today” diagnosis. On

ADHD and ADD

behalf of al of us who have gone before . . . .Sorry.

Autism is a developmental disorder and the child is

You’ve come to one of many “right” places for an-

delayed in several areas. Among others, they can be in

swers. In these chapters are parents, doctors and thera-

areas such as language processing, social, fine or gross

pists who understand how you feel and are familiar

motor skil s and verbal skil s. It is diagnosed by observ-

with the behaviors you are seeing. The chal enge is in

ing certain behaviors. For example, a lack of interest in

looking long enough and hard enough to arrive at an

others, perseveration (unable to break away from a cer-

acceptable diagnosis.

tain object like their finger or a spinning wheel), obses-

Stop! Acceptance does not mean Done. It doesn’t

sive-compulsive behaviors, sensory issues like problems

mean you’re necessarily happy with where you are and

with sounds, smel s, tactile things and an aversion to

don’t particularly worry about the future. It definitely

change.

does not mean retirement from trying new things and

The typical autistic child has communication de-

wanting better for your child.

lays. Either he can’t, doesn’t care to, or has some type

Acceptance means no more crying binges and

of speech delay. In general, you can see that when

beating your head against the wal . Acceptance means

compared to similar-aged children, he’s behind. And

getting your life back . . . to be able to laugh again and

he’s not only different, he’s different in ways that are

enjoy your family in spite of the rough spots.

hard to explain.

When people ask if I’m done looking for treat-

Autism can range from very mild to severe. Some

ments for my near twelve-year-old, I simply say, “We’re

autistics are easily identifiable because they are non-

stil tweaking.” I think we’l always be tweaking those

verbal or minimal y verbal, self-destructive, and/or

little areas of the brain that do a hitch-kick instead of

violent. Intervention could not come soon enough for

a round-off. Yet, it’s great to be able to say I love my

these children and if you have a child exhibiting ex-

son’s differences, now more than ever.

treme behaviors, please run, don’t walk to your nearest

65

The Official Autism 101 Manual

DAN (Defeat Autism Now) doctor found through the

Attention Deficit Disorder

Autism Research Institute, bookstore (Children With

(and ADD With Hyperactivity)

Starving Brains by Jacquelyn McCandless, Unraveling

the Mystery of Autism and PDD by Karyn Seroussi)

ADD and ADHD are obviously diagnosed when

and other resources as presented in this book. Autism

attention is a key problem. Behaviors include difficulty

is treatable. Search for a physiological explanation

focusing, finishing a task, paying attention, “getting

which would point to behaviors resulting from pain,

it”, staying on task and being easily distracted. Often,

drug-like effects from certain foods, or the absence of

intentions are good. It is impossible for them to

some essential component of brain nutrition.

perform the task simply because their brain won’t let

As you move away from the extreme behaviors,

them. As with ASD, this developmental difference

things begin to get a little fuzzy. Many autistics have

general y benefits from an increase in protein

families, good jobs and become very successful. Their

(especial y at breakfast), essential fatty acids, certain

differences, again, reside heavily along the need for

drugs, sensory integration therapy, etc. If they are

structure (absence of change), obsessive behaviors,

ADD or ADHD, you wil see an improvement with

ticks or stimming, communication and social lines.

treatment.

Often they are extremely literal and general y have a

ADHD contains the hyperactive behaviors such

hard time fitting in (though many hide it wel ).

as constant movement, fidgeting, pacing, needing

In my opinion, the separation between

to throw things (great for those athletes), highs and

high-functioning autism and Asperger’s lies in

lows. ADHD loves to be doing. Again, many of these

communication. It occurs in both, sometimes easily,

behaviors aren’t wrong, they’re just different and when

but there seems to be a cognitive disconnect for

they interfere with a child’s ability to do their best,

children with autism whereas children with Asperger’s

they need to be addressed.

are much more at ease communicating, though

I hope this provides just enough information to get

frequently inappropriately.

you started. Whether I’ve confirmed or infuriated you,

Stil under the umbrel a of Autism Spectrum

if it motivates you to help your child, then I’ve suc-

Disorder, those with Asperger’s Syndrome often have it

ceeded. Remember, you are your child’s greatest advo-

harder than their autistic brother who’s symptoms are

cate, teacher and friend. God bless you on your way.

more severe.

Their expertise in a particular area often separates

them from their peers. People think they are quirky.

Children and adults can become isolated because

they don’t know how to fit in. They struggle to read

facial expressions and verbal cues. As a result, many

suffer from depression. They want friends, they just

don’t know how to get them. It is critical to provide

educational opportunities (to learn social skil s)

and social support (to provide relationships) to the

individual with Asperger’s Syndrome.

66

Chapter 6: Why is autism on the rise?

Why is autism on the rise? CHAPTER 6

67

Why is autism on the rise?

Contributing Author Stephen M. Edelson, Ph.D., Experimental Psychology—Dr. Edelson has worked in the field of autism for 25 years. He is the Director of the Center for the Study of Autism in Salem, Oregon, which is affiliated with the Autism Research Institute in San Diego, CA. He is also on the Board of Directors of the Oregon chapter of the Autism Society of America and is on the Society’s Professional Advisory Board.

Resources and links—Stephen M. Edelson, Ph.D. suggests visiting his Autism Today website to learn about his other products and services: Visit <http://edelson.autismtoday.com> today! (*Please note, don’t put in the www.) Dr. Edelson’s main autism website is < www.autism.org>.

Autism is clearly an epidemic. According to the

There are many theories on why the prevalence of

Center for Disease Control (CDC), the prevalence

autism has increased over the past 20 years, including

of autism is now 1 in 166 children. Prior to the mid-

a yet-to-be identified virus. One thing is for certain:

1980s, the rate of autism was estimated to be 1 in

there is growing scientific evidence linking vaccines

2,000 children, a 1,200% increase! The big question:

with autism. There are two aspects to the vaccine

What is responsible for the dramatic increase in autism

issue. One is the mercury problem. Mercury is

over the past 20 years?

highly neurotoxic and is used as a preservative, cal ed

Some people argue that the increase in autism

thimerosal, in many vaccines. Second is the Measles-

reflects better ways to diagnose these children and an

Mumps-Rubel a (MMR) vaccine. Here are just a few

increase in awareness of the disorder. Many of them

of the arguments in support of the autism–vaccine

also claim that the underlying cause of autism is purely

connection:

genetic. There are problems with these claims:

• Research has shown that many autistic children

• There can be no epidemic of purely genetic

have very high levels of mercury and other

diseases. The prevalence of genetic diseases is

heavy metals in their bodies. Additionally,

expected to increase only about 1% per century.

according to a survey by the Autism Research

• Prior to the mid-1980s, two-thirds of the

Institute, parents rated chelation, a method to

children diagnosed with autism were affected

detoxify the body from heavy metals, as the

at birth (i.e., early onset), and only one-third

single most effective biomedical intervention

became autistic between their first and second

that they have tried on their children, of the

year of life (i.e., late onset). Today, the opposite

80 biomedical interventions (including 45

is true. One-third have early onset autism and

drugs), they were asked to rate. (See <www.

two-thirds have late onset autism. The notions

AutismResearchInstitute.com>, link Parent

that the increase in autism is due to better

Ratings of Behavioral Effects of Biomedical

diagnosis and/or awareness and/or is genetic

Interventions.)

does not explain the huge increase in late onset

• Some critics argue that since mercury (or

autism.

thimerosal) has been removed or reduced

• If autism has always been highly prevalent,

in vaccines, one should expect a decrease in

where are the 1 in 166 autistic adults? There are

the rate of autism. In 1999, the Food and

still only a relatively small number of autistic

Drug Administration (FDA) asked (not

adults, even though their numbers will increase

demanded) the drug manufacturers to remove

enormously in the coming years.

mercury from the vaccines. We assume drug

manufacturers started to comply with this

request in 1999/2000 and that the mercury-

69

The Official Autism 101 Manual

containing vaccines are still being phased out.

Since the average age of diagnosis of autism is

four years, one would expect to see a decrease

in autism in 2004. The California Department

of Developmental Disabilities Service has been

keeping careful track of the incidence of autism

over the years, and there is some indication

that the rate of autism in 2004 is starting to

decrease.

• Soon after the MMR vaccine was introduced

in the U.S., the rate of autism began to rise.

The MMR vaccine was introduced in the

United Kingdom about 10 years later, and the

incidence of autism, again, soon began to rise.

Note: some people claim that the increase in

autism in the U.K. occurred several years prior

to the introduction of the MMR. However,

these critics do not take into account the

“catch-up” period in which older children were

also given the MMR vaccine.

• A series of studies by Dr. Andrew Wakefield, as

well as several other scientists worldwide, have

found live measles virus in many children who

became autistic after receiving the MMR (i.e.,

late-onset autism).

We must rely on science to determine the true

cause(s) of autism. At this point, scientific studies are

providing some evidence suggesting that vaccines may

be associated with autism.

70

Why is autism on the rise?

Contributing Author Daniel Hawthorne is a diagnosed High Functioning Autistic. He is the author of Child of the Forest and Guidelines to Intervention in Autism, and webmaster and author of the award winning site

<www.autismguidelines.com>. He has degrees in Communication and Business Administration, most recently through the University of Arkansas. He does numerous speaking engagements to autism support groups and to special schools, in addition to managing an online resume posting business.

Resources and links—Daniel Hawthorne suggests visiting his Autism Today website to learn about his other products and services: Visit <http://hawthorne.autismtoday.com> today! (*Please note, don’t put in the www.) He enjoys corresponding with parents, teachers, and others in the autism community, and may be contacted at < daniel@autismguidelines.com> .

To me, the real question is whether autism truly is on aly increasing or does it just seem like it? There are no the rise—or does it just seem so due to improved

shortage of theories, especial y over the Internet. One I

medical diagnosis and a greater awareness of the traits

read recently especial y bothers me. It seems that some

of autism?

anonymous individuals are claiming not only that au-

I have always had my qualms about the diagnosis

tism is on the increase but this is so because of e-mail.

of any disorder or health condition made solely on

They claim, in their words, that the Internet tends to

the observation of someone’s behavior, especial y if

bring eccentric people together, who then pass on their

that observation is brief and done by only one person.

genes to their eccentric children, ones that society then

In my opinion, behavior-based diagnoses tend to be

labels as autistic. I suppose everyone has a right to an

subjective, making whatever specific disorder the indi-

opinion and I have a right to disagree with it.

vidual may have seem vaguely defined and ambiguous,

From my view point, in order to truly discern

and making any intervention for it controversial. Such

whether the rate is increasing or not, one must have

diagnoses typical y depend on the perspectives and

a point of comparison. While much more is known

knowledge of the one making the diagnosis. Too often,

about autism now than was known in 1943, when Leo

it is made with too little actual, one-on-one observa-

Kanner first wrote about it, the basic traits that he de-

tion by the psychologist in the child’s natural setting.

scribed so wel and that today are commonly known as

Personal y, I would like to see the day when diag-

“classic autism,” have changed little. So, I would think

noses of autism are made based on physiological fac-

that is the segment of the autism spectrum that should

tors, through futuristic medical brain scan techniques

be examined. If one accepts the view that autism is on

as wel as intensive observation by skil ed experts.

the rise, then the question then becomes the reason

Also, I have no doubt that the news media has

why. If, on the other hand, it has not risen, then why

helped raise the awareness of the disorder among the

does it just seem like it?

general public. Unfortunately, from my observation,

My belief is that there must be both a genetic pre-

the media tends to use the term “autism” in its broad-

disposition and an environmental trigger for autism to

est possible sense, lumping together everyone within

develop. While little can be done about the genes one

the spectrum into one big batch and without mention

inherits, I think that much can be done about limiting

that these traits vary widely from one individual to the

the factors that can tend to trigger development of a

next. Al too often, reporters use the same kind of sen-

condition such as autism.

sationalism when reporting on autism as they do when

The studies I have seen do seem to indicate certain

describing the play-by-play action of a sporting event.

genetic factors that directly influence the immune

I find this sad, even if it does increase viewership.

system and indirectly cause certain groups to be more

The question remains: Is the rate of autism itself re-

predisposed than others. Some groups are said to be

71

The Official Autism 101 Manual

more predisposed to a number of health conditions,

a much lower incidence among that group than the

such as high blood pressure. But the problem is this:

general population in what can be classified as classic

who’s to say whether genetic factors have changed so

autism. From what I know of the Amish, they have a

radical y in just the past 70 years to have caused this

simple lifestyle involving much physical activity, a diet

sudden increase in diagnosed cases? After al , DNA

low in processed foods and a lower level of emotional

identification is stil a new science.

stress.

My gut feeling is that if anything has changed in

It is not surprising to me that groups having a

the past 70 years, it is not the genes but the environ-

smal er amount of physical activity also tend to have

ment. In my own case, my mother contracted a case of

the highest rates of autism. From what I have read in

Rubel a during her second trimester, causing me to be

medical literature, the human body is in itself truly

born with autism. Clearly, this would have been an en-

amazing. The sweat glands work to cleanse the body

vironmental factor triggering the disorder. I recal my

of toxins, much like the kidneys do. So I would think

Mom tel ing me that the doctor at the time told her it

that groups such as the Amish would have a lowered

was just a mild case and probably would not cause her

rate for that one reason, if for no other.

al that much discomfort.

Their diet may also be a factor. So many processed

Shortly before my third birthday, my family moved

foods state, in their list of ingredients, “made with

to a town with a paper mil and a plywood mil as its

natural and artificial flavorings.” I know the real rea-

main industry. Growing up there, I did not realize

son for stating it this way is to prevent others from

what clean air smel ed like until after I moved away

copying the recipe, but of course, this could encom-

for col ege then came back some months later. It was a

pass just about anything edible. Personally, I tend to

mystery to me. I had difficulty grasping not only why I

be allergic to red food dyes and even when I read the

never noticed the odor before but also how permanent

list of ingredients, I discover only afterwards—via

residents could tolerate it now. As I went around seek-

certain specific allergic reactions I have—that the food

ing answers to this question, people often just laughed

contained red dye.

and said, “It is the smel of money.”

As for how the level of stress is connected to al this,

I have no way of knowing just what toxic chemicals

doctors often tel me that emotional health can definite-

were in the air at the time. I do know a considerable

ly influence the immune system, and indirectly cause

amount of recent medical evidence indicates that

al kinds of health problems. So, to me, it would make

mercury affects how the brain functions, often caus-

sense that urban dwel ers who live a fast paced life,

ing symptoms quite similar to autism. A lot of anec-

may also have higher levels of stress in their life. Since

dotal evidence I’ve seen tends to indicate the children

the Amish way of life is slow paced, I would think this

became autistic only after they come in contact with

could also help explain their apparent lower rate.

toxic chemicals, such as mercury. While certain im-

munizations may wel be one source of mercury, I do

not doubt that there probably are many other sources

as wel . For so many of us, low levels of toxic chemicals

are in our ground water, in the air we breathe and even

the foods we eat. Being raised a Southerner, I used

to love catfish, though I did wonder why I ached so

much and had so much difficulty functioning for days

afterward eating it. Then I learned that catfish can be a

prime source of mercury poisoning.

I think hardly anyone would contend that the en-

vironment today is as clean and as pure as it was, say,

a hundred years ago. An interesting study was made

recently of the Amish. The study seemed to indicate

72

The belief in vaccines

Contributing Author Sherri Tenpenny, DO—Dr. Tenpenny is board-certified in Emergency Medicine and currently specializes in Integrative Medicine. She is an outspoken advocate for healthcare choice, including the right to refuse vaccination. She speaks nationally and internationally on the subject of “Unspoken Risks: The Impact of Vaccines on health.”

Resources and links—Sherri Tenpenny, DO suggests visiting her Autism Today website to learn about her other products and services: Visit <http://tenpenny.autismtoday.com> today! (*Please note, don’t put in the www). You can write to Dr. Tenpenny at < NMASeminars@aol.com> .

When Parents Question Vaccination

R: You can’t prove a negative (ex: how can you know

that a vaccine saved a life? Do al people contract al

(Original y published in Dr. Tenpenny’s “Vaccines: The

infections? How do you know how many infections

Risks, The Benefits, The Choices — A Resource Guide for

have been prevented by vaccines and by other means?)

Parents”)

S: Vaccination is one of the most cost effective

W

health interventions.

hen parents question vaccination, strong opposi-

tion from their pediatrician or family doctor of-

R: We don’t know the actual cost of vaccination

ten confronts them. Below is a list of commonly used

worldwide but a few costs are known:

arguments promoting vaccination and my suggestions

for rebutting them.

• The WHOLESALE price for vaccines used

in the U.S. pediatric schedule is more than

Key: “S” = Statement “R” = Rebuttal

$170 per child. Given that there are more than

77,000 live births per week in the U.S…that

is more than $13M/week to prevent a few

childhood infections.

General

• More than $1.3B has been spent to eradicate

S: Immunization has been repeatedly demonstrated

polio from Third World Countries

to be one of the most effective medical interventions

• The estimated lifetime cost of caring for

we have to prevent disease.

one autistic (possibly vaccine-injured) child

is more than $4.5M. What about other

R: Most of the common childhood diseases were

illnesses possibly induced by vaccination?

declining both in terms or morbidity (complications)

Therefore, WHAT IS THE REAL COST OF

and mortality (death) prior to the introduction

VACCINATION?

of vaccinations. Graphs (included in this manual)

and numbers obtained directly from government

S: Vaccines are safe and do not cause untoward

documents show this evidence.

effects on the immune system.

S: It has been estimated that immunizations

R: Safety studies have been too short, too smal

currently save 3 million lives per year throughout

and too few to consider vaccines safe. The immune

the world.

system of infants has not been studied and is not ful y

understood. The long term consequences of vaccines

73

The Official Autism 101 Manual

on the immune systems of children under 2 years

3. And if you are bold enough, ask doctor if he/

of age cannot be predicted. Worse, it is not being

she would be willing to take the same dose of

fol owed. If a child develops an autoimmune disorder,

the additive that is in the vaccine, adjusted for

the cause is not studied; a therapy/medication is

his adult weight?

developed to treat it. Are vaccine-related immune

system disruptions creating “customers for life” for the

S: Vaccines provide high levels of protection against

pharmaceutical industry?

several diseases, and protection against disability

and death.

S: The additives in vaccines are in small

concentrations and are non-toxic.

R: Vaccines vary in efficacy, and many that have been

vaccinated get the disease. Therefore, vaccines do not

R: Vaccines contain a combination of at least 39

necessarily protect against disability and death from

different additives, preservatives, and cel types

disease. In addition, vaccines have been documented

introduced during the manufacturing process. None

to CAUSE certain disabilities and death.

of these are non-toxic. The cumulative effect of these

toxins, particularly the heavy metals, is being hotly

S: Serious adverse events following immunization

debated. In addition, vaccine contaminants have

are rare.

included bovine (cow), avian (chicken) and monkey

viruses, and bacteria such as streptococcus in the DTP

R: Between mid-1999 & Jan. 4, 2004, (for al vaccines

vaccine [Pediatrics, Vol. 75, No. 2, Feb 1985] and

and al reactions), 128,035 adverse reactions reported

Serratia marcesens in the influenza vaccines [2004

to the Vaccine Adverse Event Reporting System

influenza season].

(VAERS). It is estimated that only 10% of al reactions

For example, DTaP is produced using formalde-

are actual y reported to VAERS. Therefore, this may

hyde, aluminum hydroxide, aluminum phosphate,

actual y represent between 1.28 mil ion (10%) and

polysorbate 80, gelatin and, thimerosal is stil used in

12.8 mil ion (1%) of al vaccine-associated adverse

third world countries. The polio vaccine is produced

reactions.

using 3 types of polio virus, and can contain formal-

In that same period, there were 2,093 deaths

dehyde, phenoxyethanol (antifreeze), sucrose (table

reported in the VAERS. This may actual y represent

sugar), neomycin, streptomycin, polymyxin B, and

between 20,930 (10%) and 209,300 (1%) of the

VERO cel s, a continuous line of monkey kidney cel s.

DEATHS thought to be associated with vaccines.

Ask your doctor this:

Even though this data does not PROVE an

1. Is potential for toxicity from aluminum,

association to vaccine-related injury and death, the

formaldehyde and thimerosal from each of the

magnitude of the numbers certainly takes exception to

vaccines cumulative, since multiple vaccines are

the concept of a “rare” event.

given together?

Of note: more than $1B has been paid to victims

of vaccine-related injuries and death through the

2. At what age is a baby capable of eliminating

Vaccine Injury Compensation Program (VICP).

aluminum from his body?

ANSWER: Aluminum is eliminated from the

S: Vaccines do not cause disease they are designed to

body primarily through the kidneys. Infant

prevent.

kidney function (glomerular filtration rate)

is low at birth and doesn’t reach full capacity

R: This is simply not true.

until 1-2 years of age. [REF: Simmer, K.

From 1987 to 2001, the oral polio vaccine (OPV)

Aluminum in Infancy. In: Zatta PF, Alfrey AC.

was the only cause of polio in the US. OPV was

(Eds) Aluminum Toxicity in Infants’ Health and

removed from the market here, but is stil used in

Disease. 1997, World Scientific Publishing.]

massive immunization campaigns worldwide during

74

The belief in vaccines — Sherri Tenpenny, DO

annual National Immunization Days (NIDs), when

4. Tetanus toxoid, influenza vaccines, polio

more than 430 mil ion children worldwide are

vaccine, rubella vaccines and others, have been

vaccinated with the OPV vaccine. The WHO no

related to phenomena ranging from auto-

longer tracks vaccine-induced paralysis, even though

antibody production to full-blown illness (such

statistical y 2 cases of paralysis are caused for every 2

as rheumatoid arthritis).” [REF: Shoenfeld Y.

mil ion doses of vaccine. (Ref: WHO documents)

Vaccination and autoimmunity-‘vaccinosis’: a

The first generation HiB vaccine (PRP) was

dangerous liaison? J. Autoimmune. 2000 Feb;

associated with a transient increased risk of invasive

14(1): 1-10. PMID: 10648110]

HiB meningitis after vaccination and therefore, is no

longer used. Nearly 3% of those vaccinated with the

S: The vaccine-preventable diseases of childhood

chickenpox vaccine contract the infection. The rubel a

are still with us and continue to cause substantial

virus is known to shed from the MMR vaccine and

distress, disability and even death. No child should

can potential y cause congenial rubel a in a woman

be denied the benefits of vaccination.

exposed during her 1st trimester of pregnancy. The

measles fraction of the MMR has been implicated in

R: Neither should any child be subjected to vaccina-

causing MINE syndrome. (Discussed below). And we

tion until vaccines have been proven to be safe through

al know of people who contracted the flu within days

long-term fol ow up studies. There is a substantial

of receiving the live-virus flu vaccine. It is not possible

body of science in the medical literature that demon-

to contract the stated disease from these vaccines:

strates that immunizations are an assault on the im-

DTaP, Prevnar and Hepatitis B.

mune system. It is important that your doctor honestly

discusses the benefits and risks of vaccination. You

S: There is no evidence that vaccination can lead to

have a right to know and your doctor has a respon-

chronic disease.

sibility to be honest to maintain his credibility. The

choice between the risk of the disease and the risks of

R: There is plenty of evidence to the contrary. Here are

the vaccines should be the Right of the Parent.

a few examples:

1. The following vaccines and vaccine additives

S: The arguments against immunization are

have been associated with an increase of

irrational, based on fear of a particular injection

serum IgE the antibody associated with the

and a resistance to authority. (i.e. they don’t want

development of allergies: Mercury (thimerosal);

the government telling them what to do.)

Aluminum; Gelatin in chickenpox vaccine; DT

vaccine; Rubella vaccine; and Acellular Pertussis

R: Arguments FOR vaccinations are based on fear.

vaccine.

Arguments against vaccination are not weak and are

based on a review of the medical literature that reports

2. There is no doubt that the new recombinant

many complications from vaccination, including

hepatitis B vaccine has the ability to trigger

autoimmune disease, al ergy, and death.

autoimmunity.” [REF: Cohen AD. Vaccine-

NO medical test can ensure the safety of an indi-

induced autoimmunity. J Autoimmune. 1996

vidual child; therefore, each shot to each child is truly

Dec; 9(6): 699-703. PMID: 9115571]

“Russian Roulette”; which child wil react and be the

3. There has been a case report of a 35-day-old

“rare” death or complication is completely unknown.

infant who developed Kawasaki disease (an

It should be the right of every parent to determine

autoimmune disease involving the blood vessels

what is al owed to be injected into their children.

of the heart) one day after receiving his second

Government mandated vaccination is no different

dose of hepatitis B vaccine.

than government mandated use of anti-depressants

or anti-psychotics “for the good of the community.”

Would you al ow that for your child?

75

The Official Autism 101 Manual

S: Vaccine-preventable diseases of childhood can

S: Childhood diseases have a high rate of serious

cause serious problems, even death. If you do not

complication.

vaccinate your child, and your child contracts one

of these illnesses, your child could die.

R: Childhood diseases have a risk of a serious compli-

cation, but not a “high rate” of complications. Most

R: This is partial y true . . . childhood il nesses can

are benign to most children. The question needs to

be serious in some children. However, it must be

be asked: Do these complications occur in primarily

understood that the mortality (death) rate from

healthy children, or immunocompromised children?

pediatric infectious diseases had declined to very low

What were the living conditions of those that died?

levels even before the vaccines for those diseases had

What were the circumstances of those that died at the

been introduced. (see Graphs in this manual.)

time they contracted the disease? Additional y, ask the

Even though complications from childhood

question, “how many serious complications are caused

diseases can occur, serious complications, including

by the vaccines?” Doctors do not have the answers to

death, can also occur from the vaccines.

these questions.

Here is one example from the CDC:

Chickenpox: The number of children with serious

S: Pertussis causes significant morbidity. Pertussis

complications from chickenpox is thought to be

can cause seizures, encephalopathy (brain

approximately 1800 cases/year. (Note: This is a

inflammation) and death. During 1992 and 1993,

hypothetical computer generated number since

23 deaths attributed to pertussis were reported to

Chickenpox is not a disease. Also, keep in mind

the United States Centers for Disease Control and

that there are nearly 4 mil ion live births in the US

Prevention.

each year.)

R: In 15 years (from 1980 to 1995) there were 92

The facts about Chickenpox Vaccine (Varivax)

deaths reported from pertussis. In 1998 alone, there

were 17 reported deaths the day after a pertussis

1. Between March 1995 and July 1998, VAERS

vaccination.

received 67.5 adverse event reports per

The vaccine does not protect from the infection.

100,000 doses of chickenpox vaccine or a total

In fact, most of the investigations into infection

of 6,574 reports. 82% of the adverse event

outbreaks have conclusively shown that the infections

cases occurred in individuals who received

occur in vaccinated children. In November 2003,

chickenpox vaccine only. Approximately 4% of

120 cases of pertussis were reported in Fon du Lac,

cases (about 1 in 33,000 doses) were serious,

Wisconsin. Based on data taken directly from the state

including shock, convulsions, encephalitis,

public health department, the county had a 99.9%

thrombocytopenia and 14 deaths.

vaccination rate. (Note: The CDC states that an 80%

2. Studies have shown the effectiveness of the

vaccination rate is sufficient for protection and “herd

vaccine to protect against chickenpox can be

immunity.”)

as low as 40%. And up to 20% of vaccinated

children contract the disease.

S: Everyone must be vaccinated for everyone to be

3. Studies show that up to 3% of chickenpox

protected.

vaccine recipients contract chickenpox from

the vaccine, and that some cases of chickenpox

R: This argument in support of concept referred to

may be contracted from recently vaccinated

as “herd immunity.” This concept states that if at

children.

least 80% of a population is “immune” to a disease,

then the rest of the “herd” wil be protected from the

infection. The original concept of herd immunity

here. This has been rol ed over to include a vaccinated

76

The belief in vaccines — Sherri Tenpenny, DO

population. However, since it is wel known that not

tion – i.e. in Third World countries. In healthy, wel -

100% of persons vaccinated wil develop antibodies

nourished children, the infection is wel tolerated and

to protect the “herd”, the CDC recommends al to

only rarely are there complications. There were only

be vaccinated for the “good of the whole.” Not al

13 reported cases of wild measles in the US in 2003.

children should be vaccinated and the one-size-fits-al

MMWR, April 2005/Vol.52/No.54 p.12

public health policy that becomes “sacrificing a few for

the good of the whole.”

R (2): The death rate from measles in the US was 1

in 10,000,000 (1:10mil ion) in 1955. The measles

Pertussis

vaccine was not introduced until 1963. Therefore, risk

of death from measles has been negligible for a very

S: The acellular pertussis vaccine (part of DTaP) is

long time.

safe and effective.

S: The more serious and potentially deadly compli-

R: Listed in order of increasing severity, observed

cation of measles infection is SSPE (Subsclerosing

adverse reactions to the pertussis vaccine include

Panencephalitis). If your child contracts measles, he

irritability, persistent, unusual y high pitched crying,

may develop this complication.

somnolence, seizures, a shock-like “hypotensive,

hyporesponsive” state, and encephalopathy.

R: This is true. Subacute Sclerosing PanEncephalitis

In evaluating side-reactions to the vaccine, the

(SSPE) is due to an aborted form of the wild measles

fol owing must be kept in mind:

virus which results from a faulty immune reaction of

1. Vaccines are not standardized between

the human body. The individual is unable to launch

manufacturers;

a ful immune response to clear the virus from the

body, and parts of it remains in the central nervous

2. For a given manufacturer, vaccines are not

system leading to a persistent infection. The aborted

standard from one batch to the next;

virus can remain quiescent for months to years, before

3. Unless the vaccine is properly prepared and

the development of the neurological and ophthalmic

refrigerated, its potency and reactivity varies

symptoms of SSPE.

with shelf life.

In the 1960s, there were approximately 60 cases of

SSPE per year among the >500,000 reported cases (as

R: “In fact, the whole question of vaccine

many cases may not have been reported) of measles per

detoxification has never been systematical y

year. There have been only 80 cases of SSPE reported

investigated.” Workshop on neurologic complications

in the US in the last 15 years.

of pertussis & pertussis vaccinations, by Mekes, JH,

Some aspects about the clinical and pathogenetic

Kinsbourne, M. Neuropediatrics. Nov 1990; 2K4

characteristics of measles infection: SSPE and MIME.

171–176 DMID 1981251

Dykon, Paul. J. Ped. Neurology, 2004; 2(s); 121–124

Measles

S: There is no relationship between MMR and

autism. Therefore, the MMR is completely safe and

S: Measles is one of the most severe and infectious

effective. If your child contracts measles, he may

diseases of childhood. In the 1990s, one of every

develop this complication.

5-10,000 measles cases dies from the acute effects of

the disease, despite the best modern medical care.

R: The relationship between SSPE and persistent

One measles case in 70 requires hospital admission.

measles infection is wel established, but the second

syndrome, now being referred to as MINE Syndrome

R (1): Serious consequences to measles occur in chil-

(Measles Induced Neuroautistic Encephalopathy, a

dren suffering from immunocompromise or malnutri-

childhood neurodegenerative disease), has been shown

77

The Official Autism 101 Manual

to be related to the live measles vaccination (MMR), if

Bottom Line: EVEN IF THE RISK OF SSPE

not proven to be caused by it.

IS REAL, IT IS FRACTIONAL COMPARED TO

There is a constel ation of features which make up

THE RISK OF MMR. THIS SHOULD NOT BE

the MINE syndrome including:

DISMISSED LIGHTLY.

1. All children had a live-attenuated MMR

vaccination between 12 and 21 months of age;

Polio

2. Prior to vaccination, none of the children

S: We must continue to vaccinate for polio until the

showed any features of autism or any signs of

WHO declares the infection eradicated. After all,

enterocolitis (gut problems);

polio is only a plane ride away.

3. All of the symptoms developed many months

after the measles vaccine (i.e. an interval period

R: The US has had no polio cases of wild polio

is characteristic of all slow viral diseases) which

since at least 1991; The WHO declared the Western

for the most part were autistic in nature;

Hemisphere “polio free” in 1994.

4. Prior to vaccination children have had a history

There are only 7 remaining countries in the

of severe, recurrent infection or frank allergy to

World in which polio is stil being reported: Nigeria,

eczema, suggesting that each had a pre-existing

Pakistan, Somalia Afghanistan, Niger, Egypt, and

immunological problem;

India, arguably some of the economical y and

hygienical y poorest countries in the world. As of

5. There is a preponderance of males who

Oct. 15, 2003, only 414 cases of wild polio were

demonstrate MINE syndrome, an interesting

reported in the world. And yet, we continue to give

fact since male predominance also features the

our children 5 polio injections, each containing 3

cousin disease, SSPE;

individual inactivated viruses.

6. In a subset of children whose blood and

As for polio “only being a plane ride away”…in 18

spinal fluid was tested, there was enough

years, there were only 6 cases of imported polio in this

measles antigen present to identify through

country, the last being in NYC in 1993. How valid

sophisticated testing that this was the vaccine-

is that argument, especial y when >98% of al polio

related strain measles and not the wild measles

virus exposures result in symptoms appearing no more

virus gene.

serious than a short bout of diarrhea? How benign

For both syndromes (SSPE and MINE) to develop,

is the vaccine in the long run, especial y when it is

two factors are required: an immature, defective or

coupled with so many other live and attenuated viral

damaged immune system which is unable to eliminate

vaccines? This is the question to be asked.

the measles virus from the body, whether it is the wild

strain in active infection, or the live-attenuated form

from the MMR. Individuals can become immune

to the wild measles virus when the live-attenuated

(MMR) is given them, but a smal portion do not

completely neutralize the live-attenuated virus and the

MINE syndrome can develop. [Ref: Editorial: Some

aspects about the clinical and pathogenetic characteristics

of the presumed persistent measles infections: SSPE and

MINE. by Paul Richard Dyken Institute for Research

in Childhood Neurodegenerative Diseases, Mobile,

Alabama, U.S.A.]

78

Chapter 7

What is all the buzz about mercury?

What is all the buzz

about mercury?

CHAPTER 7

79

Evidence of harm

Contributing Author David Kirby has been a professional journalist for 15 years. He has contributed to The New York Times and several national magazines, writing about many subjects including health, technology and politics. He lives in Brooklyn, New York.

Resources and links—David Kirby, Journalist, suggests visiting his Autism Today website to learn about his other products and services: Visit <http://kirby.autismtoday.com> today! (*Please note, don’t put in the www).

You can order Evidence of Harm (St. Martin’s Press, ISBN: 0-312-32544-0) through <Amazon.com> or the

< National Autism Association> . You can write to Mr. Kirby at <dkirby@nyc.rr.com>.

Does mercury in vaccines cause autism in children? 2004, the Centers for Disease Control and Prevention A definitive answer has so far proven elusive. No

declined to state a preference for mercury-free flu

one can say with certainty that thimerosal, the vaccine

shots in infants.[i i] Mercury is also found in tetanus,

preservative made with 49.6% mercury, helped fuel

diphtheria-tetanus, pertusis and meningitis vaccines,

the explosion in cases of autism, attention deficit

which are sometimes, though not routinely, given to

disorder, speech delay and other disorders over the past

children. It is also stil used in many over-the-counter

decade. But no one can say for certain that it did not.

products, including nasal sprays, ear and eye drops,

On May 18, 2004, the respected Institute of

anabolic steroids and even a hemorrhoid treatment.[iv]

Medicine issued a much heralded report stating that

Meanwhile, the CDC has been unable to defini-

the bulk of evidence “favors rejection of a causal rela-

tively prove or disprove the theory that thimerosal

tionship” between thimerosal and autism.[i] The inde-

causes autism, ADD, speech delays or other disorders.

pendent panel, commissioned by the government to

Several studies funded or conducted by the agency

investigate al eged links between vaccines and autism,

have been published in the past year, al of them sug-

delivered a harsh blow to advocates of the thimero-

gesting that there is no connection between the preser-

sal-autism hypothesis. But despite its authoritative

vative and the disorder. The CDC insists that it looked

certainty, the report failed to close the books on this

into the matter thoroughly and found “no evidence of

simmering medical controversy. Indeed, recently pub-

harm” from thimerosal in vaccines.

lished animal and test tube studies provide compel ing

But “no evidence of harm” is not the same as proof

biological evidence of harm (though certainly not

of safety. No evidence of harm is not a definitive

proof) from thimerosal containing vaccines.

answer; and this is a story that cries out for answers.

Exactly five years ago, the federal government

Why would a trusted health agency al ow a known

disclosed that most American children were being

neurotoxin to be injected into the bloodstream of smal

exposed to levels of mercury in vaccines above federal

babies—in amounts that exceed federal safety exposure

safety limits. Since then, officials moved to phase out

levels for adults by up to 50 times per shot? It’s a dis-

mercury from childhood vaccines and to determine if

turbing question, and there are no satisfying answers.

thimerosal exposure in infants could cause autism and

But a smal group of parents, aided by a handful

other neurological developmental disorders. To date,

of scientists, physicians, politicians and legal activists,

neither goal has been ful y attained.

spent the past five years searching for answers. Despite

Thimerosal has been removed from most routine

heavy resistance from the powerful public health

vaccinations given to American children. But it is stil

lobby, the parents never abandoned their ambition to

found in the majority of flu shots, which the U.S.

prove that mercury in vaccines is what pushed their

government now recommends for pregnant women

children, most of them boys, into a hel ish, lost world

and children between six and 23 months of age.[i ] In

of autism.

81

The Official Autism 101 Manual

Of course, there are two sides to every good

studied to any significant degree in children (with the

story, and this one is no exception. For every shred

exception of the Measles-Mumps-Rubel a vaccine, or

of evidence the parents and other researchers have

MMR). This book looks at evidence presented on both

unearthed linking thimerosal to autism, public health

sides of the thimerosal controversy, but told from the

authorities have produced forceful data to the contrary.

parents’ admittedly subjective point of view. Perhaps

The parents and their al ies accuse public health

this story wil be told one day from the opposing view,

officials and the pharmaceutical industry of negligence

from the doctors, bureaucrats and drug company reps

and incompetence, at best, and malfeasance and

who claim nothing more than the laudable desire to

col usion at worst.

save kids from the ravages of childhood disease.

On the other hand, the mercury-autism propo-

But many of the public health officials who

nents have been greeted with contempt and counterat-

discount the thimerosal theory were unwil ing (or

tack by many in the American health establishment,

prohibited by superiors) to speak on the record for

which understandably has an interest in proving the

this book. Readers are invited to reach their own

unpleasant theory wrong.

conclusions on the evidence.

Each side accuses the other of being irrational,

Did the injection of organic mercury directly into

overzealous, blind to evidence they find inconvenient,

the developing systems of smal children cause irrepa-

and subject to professional, financial or emotional

rable harm? It’s a plausible proposition, and a hugely

conflicts of interest that cloud their judgment. In some

important question. If the answer is affirmative, some-

ways, both sides are right.

one wil have to pay to pick up the pieces.

Some children with autism were never exposed

Why did the CDC and the Food and Drug

to thimerosal, and the vast majority of people who

Administration al ow mercury exposures from

received mercury in vaccines show no evidence of

childhood vaccines to more than double between 1988

harm whatsoever. But if thimerosal is not responsible

and 1992, without bothering to calculate cumulative

for the apparent autism epidemic in the United States,

totals and their potential risks?

then it is incumbent upon public health officials to

Why, for that matter, was there a corresponding

mount a ful -scale quest to identify the actual cause. At

spike in reported cases of autism spectrum disorders?

the very least, the thimerosal debate has compel ed the

Why did autism grow from a relatively rare incidence

scientific community, however reluctantly, to consider

of 1 in every 5,000 births in the 1980s, to 1-in-500

an environmental component to the disorder, rather

in the late 1990s. Why did it continue to increase to

than looking for a purely genetic explanation. Autism,

1-in-250 in 2000, and then 1-in-166 today?[v] Why

by most accounts, is epidemic. And there is no such

are rates of ADD, ADHD, speech delay and other

thing as a genetic epidemic.

childhood disorders also rising, and why does one in

Something in our modern world is apparently

every six American children have a developmental

pushing a certain number of susceptible kids over the

disorder or behavioral problem?[vi] And why does

neurological limit and into a befuddling life of autism

autism affect boys at a 4-to-1 ratio over girls?[vi ]

and other brain disorders. Several potential culprits

Autism traditional y has been a disease of indus-

beside thimerosal have been mentioned, though there

trialized nations, at least until recent years. But not

is no hard evidence to link any of them to autism.

al Western countries have autism epidemics. Autism

Possible environmental “triggers” include: mercury

spectrum disorder in the United States, with 60 per

in fish, pesticides, PCB’s, flame retardants, jet fuel,

10,000 (1-in-166) kids now affected, is much more

live viruses in vaccines or some as-yet unidentified

prevalent than it is in northern European countries

virus, and even rampant cel phone use. It is plausible

such as Denmark, which removed thimerosal from

that any combination of the above, with or without

vaccines in 1992 and now reports just 7.7 per 10,000

thimerosal exposure added into the mix, might cause

children (or 1-in-1,300). The U.K., meanwhile, which

harm to some fetuses and infant children.

just announced that it wil remove mercury from vac-

But so far, only thimerosal exposure has been

cines in September, 2004, reports exactly the same

82

Evidence of harm — David Kirby

prevalence of ASD–1 in 166 children—as the United

Thimerosal was marketed for vaccines the 1930s

States.[vi i]

and remained the preservative of choice in the U.S.

This is not an anti vaccine book. Childhood

throughout the 20th century. Mercury-free solutions

immunization was perhaps one of the greatest public

were developed, but never widely used. The reason is

health achievements of the 20th Century, and vaccines

thought to be economic.

wil continue to play a crucial role in our lives as

Developing alternative preservatives, and having

we enter an uncertain age of emerging diseases and

them tested and approved by the FDA is a costly

potential bioterrorism.

proposition. Switching to single dose vials, another

Some parents, fearing harmful effects, have been

alternative, is viable. But it is also expensive and more

tempted not to vaccinate their children. Most people

cumbersome for transportation and storage. Final y,

would agree that this is foolhardy and dangerous. Few

thimerosal is often used in vaccine manufacturing

of us are old enough to remember the great epidemics

itself, to preserve sterility in the lab. Since it was

of influenza, pertussis, smal pox, polio, diphtheria and

already in vaccines, it didn’t make much sense to seek

measles that once swept entire populations—until the

out an alternative. And at any rate, the FDA and CDC

advent of vaccines reduced those maladies to abstract,

never said that thimerosal might be hazardous.

unthreatening concepts, at least in America. These

Curiously, the first case of autism was not recorded

diseases, al of them preventable, can kil children.

until the early 1940’s, a few years after thimerosal

When vaccination rates fal , disease rates rise.

was introduced in vaccines. It was described by psy-

Nor should this book be regarded as political y par-

chiatrists Leo Kanner and Hans Asperger, who inde-

tisan in nature. Though some people in the book do

pendently coined the terms “autism” and “autistic”

launch harsh criticisms against the Bush Administra-

respectively. The term comes from the Greek word for

tion and Republican leaders in the Senate, two leading

self, autos.

protagonists—from these parents’ point of view—are

In the late 1940s, Austrian-born psychologist

among the most conservative members of Congress.

Bruno Bettelheim proposed that autistic children

Moreover, much of the story here took place under the

came from aloof mothering; they were by-products

Administration of President Bil Clinton.

of women who could not or would not provide the

Parental fear of vaccines has threatened the viability

warmth and emotional support needed for the normal

of the U.S. National Immunization Program. But if

development of a child. He label ed these women

scientists prove that mercury in vaccines was at least

“refrigerator mothers,” a term that stuck until the

partly to blame for much of the autism epidemic—and

1960s.

that the culprit has been largely (or one day entirely)

In 1964, Bernard Rimland, a psychologist and

removed—then confidence in childhood immuniza-

father of an autistic son, wrote a groundbreaking

tion should return to comfortable levels.

book cal ed Infantile Autism: The Syndrome and Its

But most health officials insist that mercury in vac-

Implications for a Neural Theory of Behavior. The book

cines is harmless, even as warnings go off about the tox-

is widely credited with debunking the refrigerator

ic effects on infants and fetuses from mercury in fish.

mother theory, which today seems both laughable and

This mixed message is doing nothing to bolster

insulting to many parents. The book helped convince

faith in the immunization program.

the psychiatric community that autism was not an

Many vaccines come in multi-dose vials, which

emotional problem at al , but rather a biological one.

cannot be sold without a preservative, such as thimero-

In the 1980s, suspicions began to surface among

sal. Because of its mercury content, thimerosal pre-

some parents of autistic children that vaccines were

vents bacterial and fungal contamination in vials that

somehow involved in the disorder. In 1985, Barbara

undergo repeated puncturing of the seal by needles.

Loe Fisher, co-founder of the National Vaccine

Thimerosal is not required for single-dose vials, nor is

Information Center, co-authored a book (with H. L.

it found in live vaccine preparations, including MMR,

Coulter) cal ed A Shot in the Dark. In the course of

which contains live organisms.

her research she found many children who developed

83

The Official Autism 101 Manual

autism after a reaction to the diphtheria-pertussis-

Evaluation and Research (CBER), August 5,

tetanus (DTP) shot.

2003; updated March 30, 2004.

Vaccines continued to remain on autism’s radar

[v] Sources for 1 in 5000 figure: Only two autism

screen and were raised to new notoriety when a

prevalence studies were conducted in the U.S. in

young English doctor named Andrew Wakefield said

the 1980’s: one showed a rate of 1 case per 10,000

that the Measles-Mumps-Rubel a (MMR) live-virus

children, and the other showed a rate of 3.3 per

vaccine (which does not contain thimerosal) might be

10,000, (or 1 in 3,030). This typical y has been

contributing to regressive autism in children.

averaged out to 2 per 10,000, (or 1 in 5000).

Then in July, 1999, came the U.S. government

Source for 1 in 500 figure: Marie Bristol, et al,

announcement about mercury levels in childhood

“State of the Science in Autism: Report to the

vaccines.

National Institutes of Health,” Journal of Autism

Now the stakes could not be higher. Perhaps

and Developmental Disorders, 1996, Vol. 26, No.

bil ions of dol ars in litigation is pending against

2, pp. 121-157. Source for 1 in 250: In 2002,

drug companies involved in vaccine production. . . . .

the CDC conducted a prevalence study in Brick

Meanwhile, the reputation of American public health

Township, NJ, showing a rate of 4 per 10,000

is on the line.

(or 1 in 250), CDC, National Vaccine Program

The jury is stil out on thimerosal, but deliberations

Office, Vaccine Fact Sheet on Autism. Source

are wel under way. One side wil emerge vindicated,

for 1 in 166 figure: “Autism A.L.A.R.M.” – U.S.

and the other wil earn eternal scorn in the medical

Department of Health and Human Services,

history books.

CDC, The Medical Home Initiatives and First

In November, 2003, the father of an autistic boy

Signs.

in North Carolina, an anti-thimerosal activist and a

[vi] “Autism A.L.A.R.M.” – U.S. Department of

believer, approached a wel -known pediatrician after

Health and Human Services, CDC, The Medical

the doctor had delivered a lecture on the safety of

Home Initiatives and First Signs.

vaccines in general, and thimerosal in particular.

[vi ] C. Gil berg C, M. Coleman “The Biology of the

“You know something doctor?” the father said. “If

Autistic Syndromes - 2nd Edition, Mac Keith

it turns out that you are right, then I wil personal y

Press, 1992, Page 90. (SEE: Bernard et al, 2000).

come down to your office and apologize to you with

[vi i] Denmark source: “A Population-Based Study of

every fibre of my being.”

Measles, Mumps, and Rubel a Vaccinations and

“But if it turns out that you are wrong,” he added,

Autism,” Madsen, et al, The New England Journal

“then you are going to hel .”

of Medicine, Vol. 347, No. 9 - November 7, 2002,

pp. 1481. UK source: “MRC Review of Autism

References

Research – Epidemiology and Causes,” Medical

Research Council, U.K., December, 2001.

[i] Immunization Safety Review: Vaccines and

Autism (2004), Executive Summary, Institute of

Medicine, Committee on Immunization Safety,

National Academies Press.

[i ] “Prevention and Control of Influenza:

Recommendations of the Advisory Committee on

Immunization Practices,” Morbidity and Mortality

Weekly Report, Centers for Disease Control and

Prevention, May 28, 2004.

[i i] Ibid.

[iv] “Mercury in Drug and Biologic Products,” U.S.

Food and Drug Administration, Center for

84

Chapter 8: Where do I begin when autism

has been diagnosed?

Where do I begin when

autism has been diagnosed? CHAPTER 8

85

Advice for parents of young autistic children: spring (2004) Contributing Author James B. Adams, Ph.D., (Arizona State University, Tempe, Arizona) is the father of a young girl with autism and has served for several years as the President of the Greater Phoenix Chapter of the Autism Society of America. He is also a Professor of Chemical and Materials Engineering at Arizona State University, where much of his research is focused on finding the biomedical causes of autism and effective treatments for it. His website is < www.eas.asu.edu/~autism> .

James B. Adams, Ph.D. suggests visiting his Autism Today website to learn about his other products and services: Visit <http://adams.autismtoday.com> today! (*Please note, don’t put in the www.) Contributing Author Stephen M. Edelson, Ph.D., Experimental Psychology (Autism Research Institute, San Diego, California), has worked in the field of autism for 25 years. He is the Director of the Center for the Study of Autism in Salem, Oregon, which is affiliated with the Autism Research Institute in San Diego, CA. He is also on the Board of Directors of the Oregon chapter of the Autism Society of America and is on the Society’s Professional Advisory Board. His main autism website is <www.autism.org> .

Stephen M. Edelson, Ph.D. suggests visiting his Autism Today website to learn about his other products and services: Visit < http://edelson.autismtoday.com> today! (*Please note, don’t put in the www.) Temple Grandin, Ph.D., (Colorado State University, Fort Collins, Colorado) is an Associate Professor of Animal Science at Colorado State University and a person with autism. She is the author of Emergence: Labeled Autistic and Thinking in Pictures, and a designer of livestock handling facilities. Half of the cattle in North America are handled in facilities she has designed. She is a popular speaker at colleges and autism conferences. Her website is <www.grandin.com> .

Temple Grandin, Ph.D. suggests visiting her Autism Today website to learn about her other products and services: Visit <http://grandin.autismtoday.com> today! (*Please note, don’t put in the www.) Bernard Rimland, Ph.D., is the director of the Autism Research Institute (ARI) in San Diego, which he founded in 1967, and the founder of the Autism Society of America, which he founded in 1965. He is also the co-founder of the Defeat Autism Now! (DAN!) Project, which is sponsored by ARI. Dr. Rimland is the author of the prize-winning book, Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior, which is credited with debunking the “mother-blaming” theories of autism prevalent in the 20th century. He is also the father of an autistic adult. His website is <www.AutismResearchInstitute.com>.

Bernard Rimland, Ph.D. suggests visiting his Autism Today website to learn about his other products and services: Visit <http://rimland.autismtoday.com> today! (*Please note, don’t put in the www.) Introduction

This paper is geared toward parents of newly diagnosed

Joining parent support groups may help. However,

autistic children and parents of young autistic children

these strong emotions also motivate parents to find

who are not acquainted with many of the basic issues

effective help for their children. The diagnosis is

of autism. Our discussion is based on a large body of

important because it can open the doors to many

scientific research. Because of limited time and space,

services and help parents learn about treatments that

detailed explanations and references are not included.

have benefited similar children.

A

The most important point we want to make is

lthough for some parents a diagnosis of autism

that autistic individuals have the potential to grow

offers the relief of a label for their child’s

and improve. Contrary to what you may hear from

symptoms, the diagnosis can also be devastating. Many

outmoded professionals or read in outmoded books,

parents can be overwhelmed by fear and grief for

autism is treatable. It is important to find effective

the loss of the future they had hoped for their child.

services, treatments and education for autistic children

87

The Official Autism 101 Manual

as soon as possible. The earlier these children receive

matter of considerable controversy at present.

appropriate treatment, the better their prognosis. Their

One recent study, conducted by the first author,

progress though life wil likely be slower than others,

compared 53 autistic children with 48 typical peers.

but they can stil live happy and productive lives.

The parents of the early-onset autism group reported a

significant delay in reaching developmental milestones,

What is autism?

including age of crawling (two-month delay), sitting

up (two-month delay), walking (four to five month

Autism is a developmental disability that typical y

delay) and talking (11 month delay or more). Thus,

involves delays and impairment in social skil s,

there appeared to be a delay in gross motor skil s as

language and behavior. Autism is a spectrum disorder,

wel as of talking. Many children with autism also

meaning that it affects people differently. Some

need physical therapy. In contrast, the late-onset

children may have speech, whereas others may have

autism group reached developmental milestones at the

little or no speech. Less severe cases may be diagnosed

same time as typical children.

with PDD or with Asperger’s Syndrome. These

Prior to 1990, approximately two-thirds of autistic

children typical y have normal speech, but they have

children were autistic from birth and one-third

many “autistic” social and behavioral problems.

regressed sometime after age one year. Starting in the

Left untreated, many autistic children wil not

1980s, the trend has reversed—fewer than one-third

develop effective social skil s and may not learn to talk

are now autistic from birth and two-thirds become

or behave appropriately. Very few individuals recover

autistic in their second year. (See figure below.)

completely from autism without any intervention. The

The fol owing results are based on the responses to

good news is that there are a wide variety of treatment

ARI’s E-2 checklist, which has been completed by

options that can be very helpful. Some treatments may

thousands of autism families. These results suggest

lead to great improvement, whereas other treatments

that something happened, such as increased exposure

may have little or no effect. No treatment helps

to an environmental insult, possibly vaccine damage,

everyone. A variety of effective treatment options wil

between ages one and two years.

be discussed below.

Several brain autopsy studies have indicated that

brain damage occurred sometime during the first

trimester of pregnancy, but many of these studies

Onset of autism:

involved individuals who were born prior to 1990.

early onset versus regression

Thus, these findings may not apply to what appears to

Autism develops sometime during pregnancy and the

be the new population of regressive autism.

first three years of life. Some parents report that their

child seemed different at birth. These children are

referred to as early-onset autism. Other parents report

Cases of Autism

2000

that their child seemed to develop normal y and then

had a major regression resulting in autism, usual y

1500

onset at 18 months

around 12–24 months. These children are referred as

late-onset or regressive autism. Some researchers argue

1000

that the regression is not real or the autism was simply

500

unnoticed by the child’s parents. However, many

onset at birth

parents report that their children were completely

0

normal (e.g., speech, behavior, social) until sometime

Pre-1960 61–70

71–75

76–80

81–85

86–90

91–95

between one and two years of age. The possible

YEAR OF BIRTH

causative role of vaccinations, many of which were

added to the vaccination schedule in the 1980s, is a

88

Advice for parents of young autistic children

Speech development

Genetics of autism

One of the most common questions parents ask is:

Genetics appear to play an important role in causing

“Wil my child develop speech?”

some cases of autism. Several studies have shown that

An analysis of ARI’s data involving 30,145 cases

when one identical twin has autism, the co-twin often

indicated that 9% never develop speech. Of those

has autism. In contrast, when one fraternal twin has

who develop speech, 43% begin to talk by the end of

autism, the co-twin is rarely autistic. Studies trying

their first year, 35% begin to talk sometime between

to identify specific genes associated with autism have

their first and second year, and 22% begin to talk

been inconclusive. Currently, it appears that 20 or

in their third year and after. A smal er, more recent

more genes may be associated with autism. This is in

survey conducted by the first author found that only

contrast to other disorders, such as Fragile X or Rett’s

12% were total y non-verbal by age five. So with

Syndrome, in which single genes have been identified.

appropriate interventions there is reason to hope that

A large number of studies have found that

children with autism can learn to talk, at least to some

autistic individuals often have compromised immune

extent.

systems. In fact, autism is sometimes described

There are several ways to help autistic children

as an autoimmune system disorder. One working

learn to talk, including:

hypothesis of autism is that the child’s immune system

• Teaching speech with sign language: It is easy

is compromised genetical y and/or environmental y

for parents to learn a few simple signs and

(e.g., exposure to chemicals). This may predispose the

use them when talking to their child. This is

child to autism. Then, exposure to an (additional)

referred to as “simultaneous communication”

environmental insult may lead to autism (e.g., the

or “signed speech.” Research suggests that the

MMR vaccine) or mercury-containing vaccine

use of sign language increases the chance of

preservatives (i.e., thimerosal).

children learning spoken language.

If parents have a child with autism, there is an

increased likelihood, estimated at 5% to 8%, that their

• Teaching with the Picture Exchange

future children wil also develop autism. Many studies

Communication System (PECS): This involves

have identified cognitive disabilities, which sometimes

pointing to a set of pictures or symbols on a

go undetected, in siblings of autistic children. Siblings

board. As with sign language, it can also be

should be evaluated for possible developmental delays

effective in teaching speech.

and learning disabilities, such as dyslexia.

• Applied Behavior Analysis: This will be

discussed further in this section.

Possible environmental causes

• Encouraging child to sing with a videotape or

of autism

audiotape.

• Vestibular stimulation, such as swinging on a

Although genetics play an important role in autism,

swing, while teaching speech.

environmental factors are also involved. There is

no general consensus on what those environmental

• Several nutritional/biomedical approaches have

factors are at this point in time. Since the word

been associated with dramatic improvements in

“autism” is only a label for people who have a certain

speech production including dimethylglycine

set of symptoms, there are likely to be a number of

(DMG), vitamin B6 with magnesium, and the

factors that could cause those symptoms. Some of

gluten-/casein-free diet. This will be discussed

the suspected environmental causes for which there is

further in this section.

some scientific evidence include:

• Childhood vaccinations: The increasing

number of vaccines given to young children

89

The Official Autism 101 Manual

might compromise their immune system. Many

it now accounts for 45% of al new developmental dis-

parents report their child was normal until

abilities. Other countries report similar increases.

vaccinations.

We do not know why there has been a dramatic

• MMR Vaccine: Evidence of measles virus has

increase in autism over the past 15 years, but there

been detected in the gut, spinal fluid and blood.

are several reasonable hypotheses. Since there is more

Also, the incidence of autism began rising

than one cause of autism, there may be more than one

significantly when the MMR was introduced

reason for the increase. A smal portion of the increase

in the U.S. (1978) and in the United Kingdom

of autism where speech is delayed may be due to

(1988).

improved diagnosis and awareness, but the report from

California reveals that this only explains a minute part

• Thimerosal (a mercury-based preservative) in

of the increase. However, the increase in the milder

childhood vaccines: The number of vaccines

variant cal ed Asperger’s Syndrome may be due to

given to children has risen over the last two

increases in diagnosis. In Asperger’s Syndrome, there

decades, and most of those vaccines contained

is no significant speech delay, and early childhood

thimerosal, which is 50% mercury. The

behavior is much more normal. The major reason for

symptoms of mercury poisoning in children are

the increase is certainly due to environmental factors,

very similar to the symptoms of autism.

not genetics, since there is no such thing as a “genetic

• Excessive use of oral antibiotics: These can

epidemic.” Some possible environmental factors were

cause gut problems, such as yeast/bacterial

discussed in the previous section, and an increased

overgrowth and prevents mercury excretion.

occurrence of one or several of those factors probably

• Maternal exposure to mercury (e.g.,

accounts for the rapid increase in autism.

consumption of seafood high in mercury,

mercury dental fillings, thimerosal in RhoGam

Common co-occurring conditions

shots).

in autism

• Lack of essential minerals: Zinc, magnesium,

iodine, lithium and potassium may be

Mental retardation

especially important.

Although it has been estimated that up to 75% of

• Pesticides and other environmental toxins may

people with autism have mental retardation, research

play roles.

studies have frequently used inappropriate IQ tests,

such as verbal tests with non-verbal children and,

• Other unknown environmental factors may

in some cases, estimating the child’s intel igence

play roles.

level without any objective evidence. Parents should

request non-verbal intel igence tests that do not

Prevalence of autism

require language skil s, such as the Test for Nonverbal

Intel igence (TONI). Furthermore, regardless of

There has been a rapid increase in the number of chil-

the result, realize that autistic children wil develop

dren diagnosed with autism. The most accurate statis-

more skil s as they grow older and that appropriate

tics on the prevalence of autism come from California,

therapies and education can help them reach their true

which has an accurate and systematic centralized re-

potential.

porting system of al diagnoses of autism. The Califor-

nia data show that autism is rising rapidly, from 1 per

Seizures

2,500 in 1970 to 1 per 285 in 1999. Similar results

It is estimated that 25% of autistic individuals also

have been reported for other states by the U.S. Depart-

develop seizures, some in early childhood and others

ment of Education. Whereas autism once accounted

as they go through puberty. (Changes in hormone

for 3% of al developmental disabilities, in California

levels may trigger seizures.) These seizures can range

90

Advice for parents of young autistic children

from mild (e.g., gazing into space for a few seconds) to

Low muscle tone

severe, grand mal seizures.

A study conducted by the first author found that 30%

Many autistic individuals have subclinical seizures

of autistic children have moderate to severe loss of

that are not easy to notice but can significantly affect

muscle tone, and this can limit their gross and fine

mental function. A one- or two-hour EEG may not

motor skil s. The study found that these children tend

be able to detect any abnormal activity. So a 24-hour

to have low potassium levels. Increased consumption

EEG may be necessary. Although drugs can be used

of fruit may be helpful.

to reduce seizure activity, the child’s health must be

checked regularly because these drugs can be harmful.

Sensory sensitivities

There is substantial evidence that certain

Many autistic children have unusual sensitivities to

nutritional supplements, especial y vitamin B6 and

sounds, sights, touch, taste and smel s. High-pitched

dimethylglycine (DMG), can provide a safer and more

intermittent sounds, such as fire alarms or school

effective alterative to drugs, for many individuals.

bel s, may be painful to autistic children. Scratchy

(Write to the Autism Research Institute for publication

fabrics may also be intolerable, and some children have

P-16 for more information.)

visual sensitivities. They are troubled by the flickering

of fluorescent lights. If the child often has tantrums

Chronic constipation and/or diarrhea

in large supermarkets, it is possible that he/she has

An analysis of the ARI’s autism database of thousands

severe sensory over-sensitivity. Sensory sensitivities

of cases show over 50% of autistic children have

are highly variable in autism, from mild to severe. In

chronic constipation and/or diarrhea. Diarrhea may

some children, the sensitivities are mostly auditory; in

actual y be due to constipation—i.e., only liquid

others, mostly visual. It is likely that many individuals

is able to leak past a constipated stool mass in the

who remain non-verbal have both auditory and

intestine. Manual probing often fails to find an

visual processing problems, and sensory input may be

impaction. An endoscopy may be the only way to

scrambled. Even though a pure tone hearing test may

check for this problem. Consultation with a pediatric

imply normal hearing, the child may have difficulty

gastroenterologist is required.

hearing auditory details and hard consonant sounds.

Some children have very high pain thresholds

Sleep problems

(i.e., be insensitive to pain), whereas others have very

Many autistic individuals have sleep problems. Night

low pain thresholds. Interventions designed to help

waking may be due to reflux of stomach acid into the

normalize their senses, such as sensory integration,

esophagus. Placing bricks under the legs at the head

Auditory Integration Training (AIT) and Irlen lenses,

of the bed may help keep stomach acid from rising

wil be discussed further in this section.

and provide better sleep. Melatonin has been very

useful in helping many autistic individuals fal asleep.

Other popular interventions include using 5-HTP

What is the difference between

and implementing a behavior modification program

Asperger’s Syndrome and Autism?

designed to induce sleep. Vigorous exercise wil help a

Asperger’s Syndrome is usual y considered a subtype

child sleep, and other sleep aids are a weighted blanket

of high functioning autism. Most of those with

or tight fitting mummy-type sleeping bag.

Asperger’s Syndrome are described as “social but

Pica

awkward.” That is, they want to have friends but they

do not have the social skil s to begin and/or maintain a

Thirty percent of children with autism have moderate

friendship. While high functioning autistic individuals

to severe pica. Pica refers to eating non-food items

may also be “social but awkward,” they are typical y

such as paint, sand, dirt, paper, etc. Pica can expose

less interested in having friends. In addition, high

the child to heavy metal poisoning, especial y if there

functioning autistic individuals are often delayed in

is lead in the paint or in the soil.

91

The Official Autism 101 Manual

developing speech/language. Those with Asperger’s

• Treatment of intestinal bacterial/yeast

Syndrome tend not to have speech/language delays,

overgrowth

but their speech is usual y described as peculiar, such

• Detoxification of heavy metals

as being stilted and perseverating on unusual topics.

Psychiatric medications

Medical testing and treatments

The various topics covered in this overview paper for

A smal but growing number of physicians (many

parents of young autistic children represent, for the most

of them parents of autistic children) are involved in

part, a consensus of the views, based on research and

trying safe and innovative methods for treating the

personal experience, of al four authors. However, the

underlying biomedical basis of autism—the Defeat

authors differ in their opinions on the role psychoactive

Autism Now! (DAN!) program. Parents and physicians

drugs should play. We wil present you with the conflicting

can learn about this approach by attending DAN!

opinions, so that you can decide for yourself.

conferences (audio and videotapes are also available),

visiting the Autism Research Institute’s website

In summary, Dr. Grandin has a relatively accepting

<www.AutismResearchInstitute.com> and studying position on the use of psychiatric medications in autistic

the DAN! manual. The manual, entitled Biomedical

children. She feels that it is worthwhile to consider drugs

Assessment Options for Children with Autism and Related

as a viable and useful treatment. Dr. Rimland and Dr.

Problems, provides a comprehensive discussion of

Edelson, on the other hand, are strongly opposed to the

laboratory tests and interventions. A listing of doctors

use of drugs except as a possible last resort. They feel the

who subscribe to the DAN! approach to autism can

risks are great and consistently outweigh the benefits. Dr.

be found on the ARI website. A related description

Adams has an intermediate view.

of medical testing and treatment is also available at

<http://www.eas.asu.edu/~autism>.

Dr. Grandin

Routine medical tests are usual y performed

There are no psychiatric medications for “autism,”

by traditional pediatricians, but they rarely reveal

but there are many psychiatric medications used for

problems in autism that can be treated. Genetic testing

treating specific symptoms often found in autism,

for Fragile X syndrome can help identify one possible

such as aggression, self-injury, anxiety, depression,

cause, and this testing is typical y recommended

obsessive/compulsive disorders and ADHD. These

when there is mental retardation in the family history.

medications general y function by altering the level of

Many physicians do not conduct extensive medical

neurotransmitters (chemical messengers) in the brain.

testing for autism, because they believe, incorrectly,

There is no medical test to determine if a particular

that the only useful medical treatments are psychiatric

medication is cal ed for; the decision is based on the

medications to reduce seizures and behavioral

psychiatrist’s evaluation of the patient’s symptoms.

problems.

This is a “trial and error” approach, as dosages need to

Some of the major interventions suggested by

be adjusted to suit each person, and one medication

DAN! practitioners include:

may be ineffective or have negative effects while others

• Nutritional supplements, including certain

are helpful.

vitamins, minerals, amino acids and essential

For some classes of drugs the doses that successful y

fatty acids

reduce symptoms such as aggression or anxiety

• Special diets totally free of gluten (from wheat,

are much lower for those with autism than for

barley, rye and possibly oats) and free of dairy

normal people. For the SSRI drugs, such as Prozac

(milk, ice-cream, yogurt, etc.)

(Fluoxetine), Zoloft (Sertraline), and other and

other antidepressants, the best dose may be only

• Testing for hidden food allergies and avoidance

one-third of the normal starting dose. Too high a

of allergenic foods

92

Advice for parents of young autistic children

dose may cause agitation or insomnia. If agitation

or to help, with some being worse than others. This is

occurs, the dose must be lowered. The low dose

in contrast to other treatments for which the ARI has

principle also applies to al drugs in the atypical or

col ected data, such as nutritional supplements, special

third-generation antipsychotic drug class, such as

diets and heavy metal detoxification, which were more

Risperdal (Risperidone). The effective dose wil vary

likely to help and very rarely caused problems. The

greatly between individuals. Start low and use the

results of this ongoing col ection of parent survey data

lowest effective dose. Other classes of drug, such as

is available at <www.AutismResearchInstitute.com> .

anticonvulsants, wil usual y require the same doses

that are effective in normal individuals.

Here are the parent ratings of the three of the most

Psychiatric medications are widely used to treat

often used drugs and the three of the most often used

the symptoms of autism, and they can be beneficial

nutrients:

to many older children and adults. However, there

are concerns over their use. There is relatively little

Three most

Got

No

Got

Better: No. of

research on their use for children with autism. There

used drugs

Worse

Effect Better Worse Cases

Ritalin

45%

26%

29%

0.7:1

3650

are almost no studies on the long-term effects of their

Benedryl

24%

51%

25%

1.1:1

2573

use, especial y for the newer medications, and there

Risperidal

19%

28%

53%

2.8:1

401

is a concern that their long-term use in children may

affect their development. They treat the symptoms

Three most

Got

No

Got

Better: No. of

used vitamins

Worse

Effect Better Worse Cases

but not the underlying biomedical causes of autism.

Vit. B6 & Mag. 4%

49%

46%

10:1

5284

One must balance risk and benefit. A drug should

DMG

7%

51%

42%

5.7:1

4725

have an obvious positive effect to make it worth the

Vit. C

2%

58%

39%

16:1

1408

risk. In order to observe the effect of a drug, do not

start a drug at the same time as you start some other

Note: These data pertain only to behavioral effects. The

treatment.

drugs, but not the vitamins, often cause significant

physical problems.

Drs. Rimland and Edelson

The Defeat Autism Now! (DAN!) approach to

We feel that psychoactive drugs should not be

autism described above was developed by a group

used at al on your children and should be used only

of advanced physicians and scientists (including a

as a last resort, not as an initial treatment, on autistic

number of parents of autistic children) because the

teenagers and adults. ARI has col ected information

treatments offered as standard practice by traditional

from parents of autistic children on their evaluation of

pediatricians, child psychiatrists and child neurologists

various treatments, including drugs, since 1967.

is far from satisfactory. For the most part, traditional,

Some adolescents and adults are helped by anti-

non-DAN! doctors rely on psychoactive drugs, such

psychotic drugs, such as Risperdal, or antidepressants,

as Ritalin, Risperdal and Prozac. None of these drugs

such as Tofranil, but the risk of side effects is

are approved by the FDA for autistic children and,

significant. Drugs should be the last resort, not the

like al drugs, may have serious side effects, including

first choice. When psychoactive drugs are used with

death. DAN! doctors rarely use drugs, relying instead

autistic teenagers or adults, it is often found that a

primarily on nutritional supplements—safe substances

very low dose, perhaps one-fourth or one-fifth of the

that the human body routinely depends upon to keep

normal dose, is sufficient.

the brain and body functioning smoothly and safely.

The Autism Research Institute has col ected

Dr. Adams

data from many thousands of parents about their

Psychiatric medications are not wel tested in young

experiences with psychiatric medications and other

children with autism, especial y for long-term use, and

treatments. In general, parents report that the

often have significant side effects. DAN! approaches

medications are about equal y likely to cause problems

(nutritional support, diet changes, detoxification)

93

The Official Autism 101 Manual

are significantly safer and address core problems

from typical children, and these children went on to

rather than symptoms. So, I think DAN! approaches

lead fairly normal lives. Of the other half, most had

should be tried first, especial y in young children.

significant improvements, but a few did not improve

However, there are some children and adults who

much.

have benefited from psychiatric medications. So these

ABA programs are most effective when started

types of medications are reasonable options to consider

early, (before age five years), but they can also be

after DAN! approaches have been tried. In young

helpful to older children. They are especial y effective

children, they should be used only very cautiously, and

in teaching non-verbal children how to talk.

beginning with low doses.

There is general agreement that:

• Behavioral interventions involving one-on-one

Educational/behavioral approaches

interactions are usually beneficial, sometimes

with very positive results.

Educational/behavioral therapies are often effective in

children with autism, with Applied Behavioral Analysis

• The interventions are most beneficial with

(ABA) usual y being the most effective. These methods

the youngest children, but older children can

can and should be used together with biomedical

benefit.

interventions, as together they offer the best chance for

• The interventions should involve a substantial

improvement.

amount of time each week, between 20–40

Parents, siblings and friends may play an important

hours, depending on whether the child is in

role in assisting the development of children with

school.

autism. Typical preschool children learn primarily by

• Prompting should be used as much as necessary

play, and the importance of play in teaching language

to achieve a high level of success, with a gradual

and social skil s cannot be overemphasized. Ideal y,

fading of prompts.

many of the techniques used in Applied Behavior

Analysis, sensory integration and other therapies can

• Proper training of therapists and ongoing

be extended throughout the day by family and friends.

supervision is beneficial.

• Regular team meetings should be held to

Applied Behavior Analysis

maintain consistency between therapists and

Many different behavioral interventions have been

check for problems.

developed for children with autism, and most of them

• Most important, keeping the sessions fun for

fal under the category of Applied Behavioral Analysis

the children is necessary to maintain their

(ABA). This approach general y involves therapists

interest and motivation.

who work intensely, one-on-one with a child for 20

to 40 hours/week. Children are taught skil s in a

Parents are encouraged to obtain training in ABA, so

simple step-by-step manner, such as teaching colors

that they provide it themselves and possibly hire other

one at a time. The sessions usual y begin with formal,

people to assist. Qualified behavior consultants are

structured dril s, such as learning to point to a color

often available, and there are often workshops on how

when its name is given. After some time, there is a

to provide ABA therapy.

shift towards generalizing skil s to other situations and

Sensory integration

environments.

A study published by Dr. Ivar Lovaas at UCLA in

Many autistic individuals have sensory problems,

1987 involved two years of intensive, 40 hour/week

which can range from mild to severe. These problems

behavioral interventions by trained graduate students

involve either hypersensitivity or hyposensitivity to

working with 19 autistic children ranging from 35

stimulation. Sensory integration focuses primarily

to 41 months of age. Almost half of the children

on three senses—vestibular (i.e., motion, balance),

improved so much that they were indistinguishable

tactile (i.e., touch), and proprioception (e.g., joints,

94

Advice for parents of young autistic children

ligaments). Many techniques are used to stimulate

shown to help children who have delays in language

these senses in order to normalize them.

and have difficulty discriminating between speech

sounds. Earobics is much less expensive (less than

Speech therapy

$100) and appears to be less powerful than the Fast

This may be beneficial to many autistic children, but

ForWord program (usual y over $1,000). Some

often only 1–2 hours/week are available. So it probably

families use the Earobics program first and then later

has only modest benefit unless integrated with other

use Fast ForWord.

home and school programs. As mentioned earlier,

sign language and PECS may also be very helpful in

Computer software

developing speech. Speech therapists should work on

There are many educational programs available for

helping the child hear hard consonant sounds such

typical children, and some of those may be of benefit

as the “c” in cup. It is often helpful if the therapist

for autistic children. There is also some computer

stretches out and enunciates the consonant sounds.

software designed specifical y for children with

developmental disabilities. One major provider is

Occupational therapy

Laureate <www.l sys.com>.

This can be beneficial for the sensory needs of these

children, who often have hyposensitivities and/or

Vision training

hypersensitivities to sound, sight, smel , touch and

Many autistic individuals have difficulty attending to

taste. This may include sensory integration.

their visual environment and/or perceiving themselves

in relation to their surroundings. These problems have

Physical therapy

been associated with a short attention span, being

Often children with autism have limited gross and fine

easily distracted, excessive eye movements, difficulty

motor skil s. So physical therapy can be helpful. This

scanning or tracking movements, inability to catch a

may also include sensory integration.

bal , being cautious when walking up or down stairs,

bumping into furniture, and even toe walking. A one-

Auditory interventions

to two-year vision training program involving ambient

There are several types of auditory interventions. One

prism lenses and performing visual-motor exercises

with significant scientific backing is Berard Auditory

can reduce or eliminate many of these problems. Visit

Integration Training (cal ed Berard AIT or AIT),

< www.AutisticVision.com>. More information on which involves listening to processed music for a

vision training can be found on Internet website of

total of 10 hours (two half-hour sessions per day, over

the Col ege of Optometrists in Vision Development

a period of 10–12 days). Many studies support its

<www.pavevision.org>.

effectiveness. Research has shown that AIT improves

auditory processing, decreases or eliminates sound

Irlen lenses

sensitivity, and reduces behavioral problems in some

Another visual/perceptual program involves wearing

autistic children.

Irlen lenses. Irlen lenses are colored (tinted) lenses.

Other auditory interventions include the Tomatis

Individuals who benefit from these lenses are often

approach, the Listening Program and the SAMONAS

hypersensitive to florescent lights, bright sunlight or

method. Some empirical evidence supports their

other types of light, or certain colors or color contrasts,

efficacy. Information about these programs can be

and/or have difficulty reading printed text. Irlen lenses

obtained from the Society for Auditory Intervention

can reduce sensitivity to these lighting and color

Techniques’ website < www.sait.org> .

problems as wel as improve reading skil s and increase

Computer-based auditory interventions have

attention span. See <www.Irlen.com> .

also received some empirical support. They include

Earobics < www.cogconcepts.com> and Fast ForWord Relationship Development Intervention (RDI)

<www.fastforword.com> . These programs have been This is a new method for teaching children how to

95

The Official Autism 101 Manual

develop relationships, first with their parents and later

is much more fun than regular school, and it can

with their peers. It directly addresses a core issue in

help develop lasting friendships. This is probably

autism, namely the development of social skil s and

one of the most important issues to include in a

friendships. Visit <www.connectionscenter.com> .

student’s Individualized Education Program (IEP, or

education plan for the child). Children with autism

Preparing for the future

often develop friendships through shared interests,

such as computers, school clubs, model airplanes, etc.

Temple Grandin

Encourage activities that the autistic individual can

As a person with autism I want to emphasize the

share with others.

importance of developing the child’s talents. Skil s

are often uneven in autism, and a child may be good

State services

at one thing and poor at another. I had talents in

drawing, and these talents later developed into a career

Most states wil provide some services for children

in designing cattle handling systems for major beef

with autism, primarily funded by the federal Medicaid

companies. Too often, there is too much emphasis on

program. Many states have waiting lists for a limited

the deficits and not enough emphasis on the talents.

number of slots. The quality of services varies widely

Abilities in children with autism wil vary greatly, and

state to state. Most states have one set of services for

many individuals wil function at a lower level than

children under three years old (early intervention) and

me. However, developing talents and improving skil s

a second set of services for older children and adults.

wil benefit al . If a child fixates on trains, use the great

motivation of that fixation to motivate learning other

State services for developmental disabilities

skil s. For example, use a book about trains to teach

Typical state services for people with autism include

reading, use calculating the speed of a train to teach

respite, habilitation, speech therapy and occupational

math and encourage an interest in history by studying

therapy. To qualify for services, children or adults must

the history of the railroads.

be diagnosed with autism (not PDD or Asperger’s

Syndrome, which do not qualify) by a licensed

Developing friendships

psychiatrist or psychologist with training in childhood

development. Furthermore, the applicant must meet

Although young children with autism may seem to

three of seven functional limitations:

prefer to be by themselves, one of the most important

• Self-care

issues for older children and adults is the development

• Receptive and expressive language

of friendships with peers. It can take a great deal of

• Learning

time and effort for them to develop the social skil s

• Mobility

needed to be able to interact successful y with other

• Self-direction

children, but it is important to start early. In addition,

• Capacity for independent living

bul ying in middle and high school can be a major

• Economic self-sufficiency

problem for students with autism. The development

of friendships is one of the best ways to prevent this

Contact your local ASA chapter to obtain more

problem.

information about the developmental disabilities

Friendships can be encouraged informal y by

services in your community.

inviting other children to the home to play. In

Once a child is determined to be eligible, he/she

school, recess can be a valuable time for teachers to

may be awarded service hours. Many states have

encourage play with other children. Furthermore,

waiting lists for services, but some states provide

time can be set aside in school for formal “play

services to everyone who qualifies. It is then up to the

time” between children with autism and volunteer

parent to choose a provider agency for each type of

peers—typical children usual y think that play time

96

Advice for parents of young autistic children

service. Speech therapists, occupational therapists and

contact your local social security office by cal ing

physical therapists are in high demand, and the state

1-800-772-1213.

pays only modest rates. Thus, it can be a chal enge

to find them. Similarly, it can be very chal enging to

Special needs trusts

find respite and habilitation providers (for an ABA

program), and an even greater chal enge to train

Children who have assets over approximately $2,000

and retain them. Often parents need to advertise for

are ineligible to receive state and federal services. They

therapists and then bring them to a provider agency

must spend their money first. However, most states

for hiring. Often parents need to hire behavior

al ow “special needs trusts” to be set up for children

consultants to train their habilitation (ABA) workers;

with disabilities. These are irrevocable trusts in which

this is very important and highly recommended if the

a guardian decides how to spend the money on the

parents can afford it.

child. They are the best way for relatives to leave

funds to the child, because these monies do not count

School programs

against the child when determining their eligibility for

government services.

For children younger than three years old, there

For more information, contact a lawyer who

are early intervention programs. For children over

specializes in special needs trusts. In addition to

three years of age, preschool and school programs

working out the financial details, it is very useful to

are available. Parents should contact the local school

write up a description of suggestions of how you want

district for information about local programs. In some

your child cared for and/or supported. MetLife also

cases a separate program for special needs children

has a special program for children with developmental

may be best, but for higher-functioning children

disabilities.

integration into a regular school setting may be more

appropriate, provided that there is enough support

Long-term prognosis

(a part or ful -time aide, or other accommodations

as needed). It is important that parents work with

Today, most adults with autism are either living at

their child’s teacher on an Individual Education

home with their parents or living in a group home.

Plan (IEP), which outlines in great detail the child’s

Some higher-functioning people live in a supported-

educational program. Additional y, meeting with the

living situation, with modest assistance, and a very

child’s classmates and/or their parents can be helpful in

few are able to live independently. Some are able to

encouraging other students to interact positively with

work, either in volunteer work, sheltered workshops

the autistic child.

or private employment, but many do not. Adults with

In some states, home therapy programs (such as

PDD/NOS and Asperger’s Syndrome general y are

ABA and speech therapy) may be funded by the school

more likely to live independently and are more likely

district, rather than through the state. However, it may

to work. Unfortunately, they often have difficulty find-

take considerable effort to convince the school district

ing and then maintaining a job. The major reason for

to provide those services. Check with your local ASA

chronic unemployment is not a lack of job skil s but

chapter and other parents about how services are

rather their limited social skil s. Thus, it is important

usual y provided in your state.

to encourage appropriate social skil s early on, so they

are able to live and work independently as much as

Social Security assistance

possible.

Some of the most successful people on the autism

Families with limited incomes (under about $25,000–

spectrum who have good jobs have developed expertise

$35,000/yr., depending on family size and assets) can

in a specialized skil that often people value. If a per-

apply to the Social Security agency to obtain monies to

son makes himself or herself very good at something,

help children with a disability. For more information,

this can help make up for some difficulties with social

97

The Official Autism 101 Manual

skil s. Good fields for higher functioning people on

Autism Society of America

the spectrum are architectural drafting, computer pro-

Publishes a newsletter, sends monthly e-mails, hosts a

gramming, language translator, special educator, librar-

national meeting and maintains a good website. Most

ian and scientist. It is likely that some bril iant scien-

important, it is the major lobbying body for people

tists and musicians have a mild form of Asperger’s Syn-

with autism, including efforts to increase research on

drome (Ledgin, 2002). The individuals who are most

autism and educational opportunities and to general y

successful often have mentor teachers either in high

improve the lives of people with autism. Parents

school, col ege or at a place of employment. Mentors

should be encouraged to join and support the ASA.

can help channel interests into careers. Untreated sen-

Cal 1-800-3-AUTISM

sory oversensitivity can severely limit a person’s ability

or visit < www.autism-society.org> .

to tolerate a workplace environment. Eliminating fluo-

rescent lights wil often help, but untreated sound sen-

Families for Early Autism Treatment (FEAT)

sitivity has caused some individuals on the spectrum

Provides valuable information regarding Applied

to quit good jobs because ringing telephones hurt their

Behavior Analysis. Visit < www.feat.org>.

ears. Sensory sensitivities can be reduced by auditory

integration training, diets, Irlen lenses, conventional

Internet

psychiatric medications and vitamin supplementation.

There are hundreds of web sites and news sources to

Magnesium often helps hypersensitive hearing.

explore. An excel ent newsletter starting point is the

It should also be pointed out that the educational,

Schafer Autism Report (SAR). Visit <www.sarnet.org>.

therapy, and biomedical options available today are

much better than in past decades, and they should

be much better in the future. However, it is often up

Suggested reading

to parents to find those services, determine which are

Books with an asterisk are available from the

the most appropriate for their child, and ensure that

Autism Research Institute

they are properly implemented. Parents are a child’s

(4182 Adams Ave.

most powerful advocates and teachers. With the right

San Diego, CA 92116

mix of interventions, most children with autism will

fax: 619-563-6840

be able to improve. As we learn more, children with

< www.AutismResearchInstitute.com>) autism will have a better chance to lead happy and

fulfilling lives.

* Facing Autism by Lynn Hamilton. This is one of

the first books parents should read. It tel s how one

National societies

mother helped her child recover from autism and

it gives a good overview of testing, treatments and

Autism Research Institute

resources.

Directed by Bernard Rimland, a parent of an autistic

adult and a leading advocate of research on autism.

* Children with Starving Brains, by Jacquelyn

Publishes a quarterly newsletter summarizing current

McCandless, MD. This is probably the best book on

research on autism and maintains a website ful of rel-

the medical conditions of people with autism and how

evant information about autism. ARI also sponsors the

to treat them. Available from <www.amazon.com>.

Defeat Autism Now! approach to autism. DAN! con-

ferences, held biannual y, are the leading conferences

on biomedical treatments for autism.

Visit < www.AutismResearchInstitute.com> or fax: 619-563-6840.

98

Advice for parents of young autistic children

* Biomedical Assessment Options for Children with

What to do next?

Autism and Related Problems by Jon Pangborn, Ph.D.

Take one or more of the fol owing steps:

and Sidney Baker, MD. Recommended series of tests

and treatments for autistic individuals and those with

1. Attend one or more parent support groups:

related disorders. Available from the

Parents can be a wonderful source of support

Autism Research Institute

and information. There are over 200 chapters

4182 Adams Ave.

of the Autism Society of America, over 70

San Diego, CA 92116

chapters of FEAT, and other informal parent

<www.AutismResearchInstitute.com>

support groups. Consider joining at least one.

fax: (619) 563-6840.

2. Contact your state’s Developmental Disabilities

program and apply for services. Be persistent.

* Biological Basis of Autism by Wil iam Shaw, Ph.D.

3. Contact your local school district and ask about

Available from

school programs. See what they have to offer.

Great Plains Laboratory

(913) 341-8949

4. Find a local physician, preferably one who

<www.greatplainslaboratory.com>.

is familiar with the Defeat Autism Now!

Covers many biological issues and treatments,

Protocol, and plan a series of medical tests and

including yeast/bacterial infections and casein-free/

treatments. Some physicians will be open to

gluten free diets.

medical testing and biomedical treatments, but

others will not—find one who is willing to help

* Let Me Hear Your Voice by Catherine Maurice. A

your child, as opposed to just monitoring the

story of how one mother helped her autistic child with

severity of your child’s problems. Do not take

ABA.

your child to a physician who does not support

* Unraveling the Mystery of Autism & PDD: A

you or respect your viewpoint.

Mother’s Story of Research and Recovery by Karyn

5. Attend local and/or national autism

Seroussi. Discusses one mothers successful search for

conferences.

interventions for her child, with a focus on wheat-free,

6. Make sure you still find some time for your

dairy-free diets.

other children and spouse/significant other.

* Special Diets for Special Kids, by Lisa Lewis. Recipes

Having a child with autism can result in many

for wheat-free, dairy-free foods.

challenges, and you need to be prepared for the

Available from <www.autismndi.com>.

long term.

* Emergence: Labeled Autistic by Temple Grandin and

7. Continue trying to learn all you can.

Margaret M. Scariano (contributor).

Good luck!

* Thinking in Pictures: And Other Reports from My Life

With Autism by Temple Grandin.

Relationship Development Intervention with Children,

Adolescents and Adults by Steven E. Gutstein, Ph.D.

and Rachel e K. Sheely. An excel ent book on

developing social skil s.

Autism, Handle With Care by Gail Gil ingham. This

book deals with the sensory issues often seen in people

with autism.

“Little Rainman” by Karen L. Simmons.

99

When parents first hear the diagnosis of autism . . .

Contributing Author Thomas McKean is an author and advocate currently living in Virginia. He wrote Soon Will Come the Light: A View From Inside the Autism Puzzle

Resources and links—Thomas A. McKean suggests visiting his Autism Today website to learn about his other products and services: Visit <http://mckean.autismtoday.com> today! (*Please note, don’t put in the www.) You can contact Mr. McKean at <Tmckean@aol.com>.

Introduction

Find a local support group

When parents first hear the diagnosis of autism Support Groups are great for parents. They can help for their child, there is often fear and confusion.

parents learn more about autism and can recommend

Fear from wondering what lies ahead, and confusion

good doctors—something you wil need. And they can

from not knowing the next steps to take to protect the

help support you when you need to know you are not

child.

alone.

In the midst of grieving, there are four things you

Attend a few conferences

can do at first to be sure you are doing the right things

later. These first four things wil lead you in the direc-

Yes, they can be expensive—but here is where you wil

tion you need to go to meet your own individual needs:

learn the latest in autism theory and treatment. And

you can network with people who are going through

Go to the library

the same thing you are.

The first thing you need to do is get educated not only

on what autism is, but also what it is NOT. For this,

Conclusion

you wil need to read. And read. And read some more.

But in your reading, be sure you do not make the

This is something that you never wanted, never

mistake a lot of parents make. Be sure you check the

planned on, never knew very much about. But by

copyright date on the books. Reading a book that is

fol owing these first four steps, you wil gain the

older may have information that, if acted on, could

knowledge and the courage you need to move forward

actual y harm you or your child. Some books to start

and give your child the best quality of life possible.

with:

• A Parents Guide to Autism, by Charles Hart

• Thinking in Pictures, by Temple Grandin

• Autism Treatment Guide, by Elizabeth Gerlach

Autism biographies can also provide valuable

information that you won’t find elsewhere.

Sensory integration therapy

Find an occupational therapist trained AND

CERTIFIED in sensory integration technique, and

have your child evaluated and treated. Autism is a

neurological/sensory disorder and early intervention is

crucial to the future of the child.

100

Where do I begin if someone I know

has been diagnosed with autism?

Contributing Author Daniel Hawthorne is a diagnosed High Functioning Autistic. He is the author of Child of the Forest and Guidelines to Intervention in Autism, and webmaster and author of the award winning site

< www.autismguidelines.com> . He has degrees in Communication and Business Administration, most recently through the University of Arkansas. He does numerous speaking engagements to autism support groups and to special schools, in addition to managing an online resume posting business.

Resources and links—Daniel Hawthorne suggests visiting his Autism Today website to learn about his other products and services: Visit: < http://hawthorne.autismtoday.com> today! (*Please note, don’t put in the www.) He enjoys corresponding with parents, teachers, and others in the autism community, and may be contacted at < daniel@autismguidelines.com> .

I would think that you should speak with the doctor In addition, keep in mind that those with autism who made the diagnosis and with people associated

are individuals with their own sets of strengths and

with autism support groups in the area to get their

weaknesses. Such an individual may excel in such

ideas and perspectives. This, I think, would provide a

things as sorting and filing things, proofreading

basis for a good general understanding about autism

documents and caring for animals—but not be as

and specifical y how being autistic can and does affect

good at such things as synthesizing information from

the person who has been diagnosed.

lengthy Sociology reports.

Then, whenever one is around that person, observe

him. Let him show you what his needs and preferences

are. See if these observations make sense in terms

of what one has already learned about the typical

physiological differences of an autistic individual. Also,

keep in mind that every autistic person is different.

Autism affects different people to a different extent

and in different ways.

Whenever a person gets diagnosed, the perception

of that person by others may change, not the person.

If in the days and months fol owing the diagnosis the

autistic individual needs structure in his life and an

absence of crowd noise, one can be sure that he needed

them before being diagnosed.

The main problem with an autistic child is that the

child often has difficulty expressing his or her needs.

As a result, those around him or her may wel have

had no way of knowing that his or her needs were any

different from theirs. The diagnosis does not cause the

child to have special needs; it only reveals needs that

were there al along. So, after the diagnosis is a time for

gaining better understanding.

101

The color of autism

Contributing Author Toni Flowers is an award-winning educator whose work with autistic children won her the Autism Society of America’s coveted Teacher of the Year award in 1989.

Resources and links—Toni Flowers suggests visiting her Autism Today website to learn about her other products and services: Visit: < http://flowers.autismtoday.com> today! (*Please note, don’t put in the www.) You can write to Ms. Flowers at < tflowers@jcs.k12.in.is>.

My book, THE COLOR OF AUTISM, is the result Open THE COLOR OF AUTISM and use what of almost 20 years of teaching individuals with

works. Tweak the suggestions. Refine them. Rework

autism. It incorporates experiences that I learned

them. Learn to continual y look beyond the autism

in the classroom, as wel as knowledge gained from

and see the child’s individual strengths and concerns,

numerous conferences, visits with friends with autism

interests, personalities, hopes and dreams.

and the relationships that I have maintained with

Respect people with autism as individuals and

former students and their families.

chal enge them to do their best. You wil not be

Work in the field of autism is often slippery. Nev-

disappointed.

ertheless, I would like to share a few constants that I

have found over the years:

THE COLOR OF AUTISM has nine chapters. Their

• There is not one way to teach, reach or live

titles are as fol ows:

with a person with autism. It is an individual

• Chapter One—Chal enges and Expectations . . .

journey, and each person with autism needs

The child with autism can learn

individual goals.

• Chapter Two—So Many Words—So Little

Time . . . Change your way of Communicating.

• The educational journey of a person on the

• Chapter Three—I Never Met a Person with

autism spectrum does not follow a printed

Autism I Didn’t Like . . . The Importance of

map. The journey takes detours, and you need

Bonding.

to follow these detours—sometimes following,

• Chapter Four—The Classroom . . . Designing a

sometimes leading, but never giving up.

Place to Learn.

• Your vision of the finish line will not be the

• Chapter Five—Schedules . . . Making Sense of

same vision as the vision of the person with

the School Day.

autism.

• Chapter Six—The Fine Art of Cueing.

• You need to focus on the individual’s ability,

• Chapter Seven—To Self Stim or Not to Self

not the disability.

Stim.

• Chapter Eight—School and Beyond . . .

• Many things I have learned about autism are

Homework.

not universal; they are pertinent to one person’s

• Chapter Nine—Activities . . . The Daily Grind.

autism.

• Nothing is wasted on a person with autism. It is

Each chapter offers true stories of my experiences with

better to try something than to do nothing. You

individuals with autism that capture the essence of that

can step back and adjust later.

chapter.

• I have found that the more I discover about

autism, the more there is to learn. As I fill in

the blanks, the canvas grows larger.

102

•

•

•

Chapter 9: Helping

a parent cope emotionally with a child’s

Helping a parent cope

autism diagnosis

emotionally with a child’s

autism diagnosis

CHAPTER 9

103

The difference between heaven and earth

(Original y published in the column Postcards from the Road Less Traveled, Autism/Asperger’s Digest, www.autismdigest.com , May-June 2005) Contributing Author Ellen Notbohm—Author of Ten Things Every Child with Autism Wishes You Knew, winner of iParenting Media’s Greatest Products of 2005 Award, and co-author with Veronica Zysk of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, winner of Learning Magazine’s 2006

Teacher’s Choice Award. She is a regular columnist for Autism Asperger’s Digest and Children’s Voice, and is a contributor to numerous magazines and websites. She is the mother of sons with autism and ADHD. Your thoughts and comments are welcome at <ellen@thirdvariation.com> .

Resources and links—Ellen Notbohm suggests visiting her Autism Today website to learn about her other products and services: Visit <http://notbohm.autismtoday.com> today! (*Please note, don’t put in the www.)

“The difference between heaven and earth is not so much altitude but attitude.”

Ken Keys Jr, The Power of

precious two-year-old daughter to a heart defect. It was

Unconditional Love

M

a life-shattering event and it was much, much worse

other’s Day and Father’s Day aren’t big events in

than anything autism ever threw at me and my family.

our house. My husband years ago declared himself

Bryce taught me that happiness does not come

al ergic to Hal mark-induced holidays. It’s enough

from getting what you want, but from wanting what

for me to be a mother on Mother’s Day. Although

you already have. It is the greatest gift I have ever been

the chal enges of raising atypical children can seem

given. A friend once asked me: But how do you get

staggering, it has been my privilege to have them as

there? What do you think is the secret of your success?

mine and to love them unconditional y. It has taught

It’s no secret. It is just this: as much as possible,

me profound lessons about how excruciating it can

accept your situation without bitterness. Play the cards

be to keep that kind of love in the crosshairs at al

you drew with grace and optimism. Bitterness can be

times. You too? Rising above and firmly pushing aside

a formidable foe; overcoming it can be a daily exercise.

our own fears, disappointments, expectations and

Some of us make it; some of us don’t.

lost dreams can seem like a mission of overwhelming

I once spent some time with a father whose mantra

enormity. Your child’s limitations become your

was, “Because of autism, I can’t have a relationship

limitations—the places you can’t take him, the social

with my son. How do you think I feel knowing that

settings he can’t handle, the people he can’t relate to,

he’l probably end up in prison?” I talked and reasoned

the food he won’t eat. Yeah, it can be a long list.

and pleaded away the afternoon begging him to

It takes great courage to admit that you are scared,

see that he was setting up a self-fulfil ing prophecy.

feel cheated, heartsick, depleted. Wanting out of that

Couldn’t he take one baby step out, imagining a

matrix and not knowing how to start. Here’s how you

different outcome for his bel igerent but very bright

start: by knowing you can do this. It’s already in you.

child—10 minutes of floor time, coming to school

In the beginning, as I contemplated what Bryce

once a month, finding a restaurant only the two of

and my family’s lives would be like with autism in

them liked? I think he loved his son but to the child it

our midst, I could not deny the fact that it could be

no doubt felt conditional, dependent upon a certain

so much worse. Al around me were people who had

kind of behavior, even if there were organic reasons

confronted just that. Close friends had lost their

why he could not comply. In the end, they both lost

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The Official Autism 101 Manual

out. This dad could not move beyond his bitterness

place to another—like the folks who masterminded

and grief. Grief is real. But getting stuck in that

the pyramids. Your son won’t play the family piano,

grief—that is the true tragedy, not the fact that your

but his fascination with plumbing is going to save you

child has autism.

thousands of dol ars!

Directing the focus of autism’s difficulties away

Loving Bryce unconditional y required making

from yourself and walking with your child in his shoes

peace with our reduced social opportunities, with

wil liberate both of you. For me, understanding sen-

the fact that he didn’t seem to want conventional

sory integration propel ed me out of my own fears.

friendships, play dates and sleepovers, wasn’t interested

I was horrified by the knowledge of what Bryce was

in the usual after school activities like soccer or choir.

living with: his prison of environmental hostility, hav-

Curiously, I can’t say I “missed” these things because

ing no “normal” basis of comparison, never knowing

he plainly was happy. Our psychologist had once told

that life can be something other than a bombardment

me, “Al children, al people, unfold in their own time.

of unpleasant sensations. He was very young, without

This may just not be his time. His time wil come.”

life experience and without means of communicating

And I was determined to let him unfold in his

his misery. I could not turn away from the raw truth,

own time. Those times did come as he grew older and

which was this: if I do not swal ow my own anguish

played Little League, swam on a swim team, became

and be the one to step up for him, who wil ?

a rather accomplished actor in community theater,

For some cosmic, not-to-be-understood reason,

enjoyed Cub Scout activities, read Harry Potter—

I was blessed with the serenity to bypass the denial

several years behind the “typical” timeline, but just as

and the anger and the self-pity that frequently come

successful y.

unbidden and unwelcome when we learn our child

Every day of Bryce’s life I have told him that he

has a disability. But that is not to say that I don’t

is the best kid who ever lived, that I am the luckiest

endure my own bouts with melancholy. I never, ever

mommy who ever lived, that he is great just the way

fail to be deeply hurt by what I cal the “Knife to

he is. In the beginning, I believed it enough to start

the Heart” moments. These are the times when the

saying it, but as time went on a wonderful thing

rest of the world seems intent on letting you know

happened. I came to believe it body and soul. More

that your child is different and apart. Usual y there’s

importantly, he came to believe it. And because he

no conscious malice; it just happens because the

believes it, he has grown into a young man with

“typical” population is steaming about their business

remarkable aplomb, self-confidence, empathy and

in “typical” fashion that doesn’t or can’t include your

work ethic—not necessarily the typical hal marks of

child. The offhand child-cruel remark, the birthday

autism. He has marvel ous self-esteem; he likes himself

party that everyone else is invited to, the snubs on the

and is comfortable with who he is. It was contagious.

bus, the questions he asks you as he begins to figure

I began to actively look for things about him to

out that he is different. I always thought that if I

articulate: I told him I was proud of how readily he

endured enough of these moments, I would develop

shared treats and privileges with others, how I admired

scar tissue or the ability to laugh them off. I haven’t.

his devotion to his school work, how much I enjoyed

But as both my boys move with increasing grace

the clever associations he made as he pul ed minute

toward maturity and independence, these moments

details out of movies and related them to his real life.

become fewer, more time passes between them and

How much I could trust him because he never lied,

they become more fleeting. The power I al owed them

how nicely he took care of himself with healthy food

to have over me has weakened over the years.

choices and good hygiene.

Unconditional love requires that you work hard to

Think of it as affirmative brainwashing—the more

look beyond what seems like limitations in your child

you tel your child he’s the greatest, the more both of

and find the gifts autism has given him. Your daughter

you are going to believe it.

doesn’t share your passion for ski ng, but you can stil

If you can get to a place where you believe, accept

have fun even if it’s just moving the snow from one

and put true unconditional love into practice, you

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The difference between heaven and earth — Ellen Notbohm

wil find yourself infused with an incredible energy

on behalf of your child. It’s that powerful. Without

it, you are going to be running this race with a fairly

nasty pebble in your shoe. It may be a $100 shoe, but

that pebble wil ensure that your focus is on the ever

more painful wound to your extremity rather than

on the span of the road ahead or the beauty of your

surroundings. It’s a pretty simple choice: let the irritant

remain until it cripples you or remove it and head for

the horizon.

I actual y did get a pretty groovy Mother’s Day

gift last year, a DVD of my al -time favorite movie,

The Wizard of Oz. Of course, the lesson of this film

is unmistakable. The Scarecrow, Tin Man and Lion

had the brains, heart and courage they yearned for al

along. So do you. Click your heels together three times

and believe it.

107

Helping a parent cope with a child’s diagnosis of autism (The terms “parent” and “spouse” are used in this chapter for the sake of simplicity.

Their use is not meant to exclude single parents, caretakers, guardians, or significant others and partners.)

Contributing Author Karen Siff Exkorn is a consultant who works with families of newly diagnosed children with autism. She is the author of The Autism Sourcebook: Everything You Need to Know—From a Mother Whose Child Recovered, published by ReganBooks/HarperCollins in October 2005 with a Foreword by Dr.

Fred Volkmar, of the Yale Child Study Center.

Resources and links—Karen Siff Exkorn, BA., MA suggests visiting her Autism Today website to learn about her other products and services: Visit <http://exkorn.autismtoday.com> today! (*Please note, don’t put in the www.)

Every 20 minutes, a parent in the United States hears something wasn’t right with our son. He regularly the words: “Your child has autism.”

reassured me that Jake was fine. “Boys develop later

Over 48 mil ion parents al over the world have

than girls,” he’d say, reminding me that I was a typical

heard these words.

first-time mother who worried too much.

I was one of those parents.

When I final y took Jake to another doctor, I

When your child is first diagnosed, you receive a

thought I’d be relieved to learn that there was a name

lot of expert advice about which treatments to choose

for Jake’s condition. I wasn’t.

and how to exercise your legal rights to obtain those

When the doctor told me that Jake had autism,

treatments—al crucial elements in helping to support

I did what many parents do. I cried for a while and

your child. But what the experts don’t tel you is how

then discovered the door that opened into the world

to support yourself. Because at the time your child is

of denial—a lovely place where I didn’t have to feel the

diagnosed, you’re not even thinking about yourself. If

deep hurt that I’d experienced upon hearing the news

you’re like most parents, al of your focus and energy

of the diagnosis. But my visit was short-lived and after

is going into helping your child and his or her needs,

a week I surfaced, only to find myself plummeting

with little left over for you, your marriage, and your

into worlds of anger and then depression that lasted

friendships.

for months. The emotional rol er coaster also included

The emotional impact of a diagnosis of autism

other strong feelings often connected to the stages of

can be devastating. It can be a shock even for parents

grieving. It was a long road to reach that last stage of

who suspected there was something wrong with

acceptance.

their child in the first place. Our son Jake had some

Al parents experience and express a range of

of the classic signs of autism. He reached al of the

emotions in response to a child’s diagnosis. Because

developmental milestones by age 17 months—he was

individuals process their feelings in their own ways

a happy, healthy, talkative toddler—before we began

and in their own time, one parent may remain in

to notice a decline in his development. Over a period

the denial stage while the other is struggling with

of months, our energetic and vibrant son became a

depression. Both parents may get stuck in the anger

lethargic, disconnected little boy. By age two, Jake

stage. Coping with a spouse’s feelings in addition to

stopped speaking entirely. He stopped responding to

your own is not easy. On top of this, the balance in

his name, pointing to objects and relating even to us,

the relationship may change. If one parent chooses to

his parents. During the months leading up to Jake’s

devote al of his or her time to the child with autism,

second birthday, I argued with our pediatrician that

resentment can build on the part of both spouses.

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Helping a parent cope — Karen Siff Exkorn

Some parents report that they become so involved

Don’t isolate

with their child’s life that they lose sight of themselves

as individuals.

Many parents feel that no one can real y understand

Keeping a marriage healthy during this time can

what they’re going through and, as a result, shut

be a chal enge. In addition to the usual day-to-day

themselves off from family and friends. As much as a

issues that most married couples face, parents of

child’s diagnosis is a deeply personal experience, it’s not

children with autism find themselves dealing with

healthy to try to handle it al by yourself. Share your

situations that most parents of typical y developing

feelings with someone—your spouse, best friend or a

children don’t have to deal with—like deciding which

therapist. Sometimes parents find that it’s easier to self-

treatments are right for a child and determining a

disclose to a group of strangers who are going through

child’s special education plan. In an attempt to make

a similar experience and choose to participate in either

the right decisions, parents often lose sight of the fact

live or on-line autism support groups. Do whatever

that they are partners on the same team.

you feel is best for you, but make sure to share your

If you find yourself stil trying to sort out your

feelings with someone.

feelings about your child’s diagnosis and the impact of

the diagnosis on the rest of your life, you’re not alone.

Respect your spouses’

Don’t lose hope. There are effective techniques to help

emotional response—

keep both your marriage and yourself together. In fact,

mothers and fathers have different

there are ways to create an even stronger bond with

reactions to their child’s

your partner and reach a stronger place within yourself.

diagnosis of autism

Through my own experience and through

consulting with families of newly diagnosed children

Studies show that mothers respond with more

with autism, I’ve learned the fol owing invaluable

depression and guilt to a child’s diagnosis than fathers

lessons on how to cope with a child’s diagnosis of

(Gray 2003). Mothers may become consumed with

autism and issues surrounding the diagnosis.

“shoulds,” such as “I should have eaten a healthier

diet during my pregnancy,” or “I should have noticed

my child’s symptoms earlier.” There is considerable

Allow yourself to have your feelings

evidence that mothers experience the impact of a

The beginning is the hardest part. Processing the

child’s diagnosis far more than fathers (Sharpley,

diagnosis, deciding which treatments to choose and

Bitsika and Efremidis 1997; Seltzer 2001). Mothers

adjusting to your new life can seem overwhelming.

also seem to be more open to venting their feelings,

The worst thing that you can do is to hold in your

while fathers have a tendency to suppress their

feelings. Al ow yourself to grieve. Honor your

emotions. As you can imagine, al of this can create

feelings—don’t judge them. People sometimes have

enormous stress in a marriage. And while it might be

this mistaken idea that crying or expressing sadness is

tempting to yel at your spouse for expressing feelings

a sign of weakness. If you don’t al ow your feelings to

too much or not at al , it is not productive.

come out, they wil remain inside and fester. Anger

To open the lines of communication between

turned inward can lead to depression. Unexpressed

you and your partner, psychologists recommend a

emotions can lead to stress-related physical and

technique known as “active listening.” Active listening

psychological ailments. To avoid this, you need to

involves staying in the moment and listening with no

find a way to get your feelings out in a constructive

agenda. Instead of formulating your own thoughts or

manner. Screaming at your spouse or other children

arguments while the other person is speaking, active

is not constructive; venting your feelings in a therapy

listening involves focusing on what the other person is

session is. Express your feelings in a journal and talk to

saying so that they feel genuinely heard. Don’t attack

a friend and/or a therapist.

your partner or fal into the blame game. Sometimes,

it’s helpful to take the other person’s point of view.

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The Official Autism 101 Manual

For example, think about why your spouse might

Know that you have the power

be feeling a certain way. Is his or her denial a self-

protection mechanism? Is his or her venting a way to

Even if you may not be in touch with your personal

assuage guilt? By taking the other person’s perspective,

power right now, it’s stil inside you. You just need

you can be more understanding and compassionate

to be able to access it. Most parents don’t know a lot

and less resentful. The technique of active listening

about autism when their child is diagnosed, which

requires effort, but the payoff can be tremendous.

can lead to feelings of powerlessness. To regain a sense

It can help you establish a respectful and loving

of power, it’s important to get educated. Remember

partnership with your spouse.

the adage, “knowledge is power.” This is the time to

educate yourself. Learn about the latest research on

autism and different treatments for it. Read books,

Make time for your marriage

access information on the Internet, and talk to autism

Maintaining a strong and solid marriage is not

professionals and parents of children with autism,

always easy, especial y when you have a child with

so that you can gain a better understanding of how

a developmental disorder such as autism. It’s up

to help your child and yourself. Educate friends and

to you to make a conscious effort to work on your

family as wel . Being informed can lead you to feeling

relationship, and that includes setting aside time to be

more confident and powerful.

with your spouse. Hire a babysitter or enlist the help

of a friend or relative to watch your child so that you

Remember that you are an expert

and your spouse can spend an afternoon or evening

together. Go for a walk or out to the movies. It’s

When parents are constantly surrounded by “expert”

important to reconnect with your spouse and enjoy

advice and opinions from doctors and professionals in

time dedicated to just the two of you. Sometimes

the field of autism, they often lose sight of their own

parents experience feelings of guilt about leaving their

expertise. Remember—you know your child better

child. Your child wil be fine without you for a few

than anyone. Make sure you value your own opinions

hours, and those few hours may be crucial to keeping

about your child as highly as those you receive from

your marriage healthy.

the experts.

Ask for what you need and want

Take ten

Often, parents find that they don’t want to burden

You wil probably hear friends and loved ones tel ing

family members and friends with requests for help

you that you should give yourself a break during the

after their child is diagnosed. They try to do everything

day and take some time for yourself. This wil make

themselves, insisting on playing the roles SuperMom

absolutely no sense to you in the beginning, when the

or SuperDad. What they don’t realize is that it’s

autism immersion process first strikes. Most parents

impossible to do it al —and this is the time when they

find themselves so consumed with helping their

need to ask for help. In fact, friends and loved ones

children that the notion of taking time out to go to

want to be cal ed upon to help. They often feel just as

the gym or to dinner with a friend seems preposterous.

helpless as parents do after a child is diagnosed. They

So here’s what I suggest. Take 10 minutes every day to

want to be supportive, but don’t always know the right

do something that is not autism-related. Take a walk

things to say or do. So it’s up to you, the parent, to

or a drive, or just sit down and drink a cup of tea. I

tel them. Ask for help—whether it’s in the form of

work with parents who cannot bear the thought of

childcare, running errands, requesting a shoulder to

taking even 10 minutes a day away from their mission

cry on, or seeking financial help to pay for doctors’

to help their child. So I remind them that this time

appointments and treatments.

wil actual y help their child. Those 10 minutes can

help them clear their heads and refocus. A perpetual y

110

Helping a parent cope — Karen Siff Exkorn

stressed-out parent cannot effectively help a child.

Also, be mindful of your own self-talk. What we

Eventual y, you can extend the 10 minutes to longer,

tel ourselves gets registered in our unconscious and

but in the beginning, at the very least, take ten.

can manifest itself in the way we feel about ourselves.

Self-esteem can be adversely affected by negative self-

Remember the basics

talk. What messages are you sending yourself? Many

parents fal into the trap of tel ing themselves that they

Eat, sleep and take care of yourself. An undernourished

are not doing enough for their children or that what

or sleep-deprived parent is no good to anyone—

they are doing is never good enough. To avoid fal ing

including himself or herself! Many parents become so

into this trap, give yourself positive affirmations.

consumed with helping their child that they neglect

Affirmations are statements that are made in the

their own basic needs. They are vigilant about keeping

present tense. For example, tel yourself: “I am okay,”

their child’s appointments with doctors and specialists,

not “I’m going to be okay,” or “I used to be okay.”

but then miss their own. Mothers cancel mammogram

Remind yourself that you’re doing the best that you

appointments and Fathers cancel physical exams.

can. Give yourself a pat on the back for the work that

Parents miss out on sleep because they’re staying up

you’re doing to help your child. Recognize and reward

too late researching or their stress level prevents them

yourself for your efforts.

from fal ing asleep or staying asleep. They skip meals

because they’re racing to bring their child to a speech

Try to live in the moment

therapy session.

It’s crucial that you, as a parent, maintain your

I purposely use the word “try” in this piece of advice

health—for yourself and your family. Keep healthy

because the notion of living in the moment can often

foods in the house and make time to eat. If your lack

be difficult in this fast-paced, future-focused world in

of sleep is stress related, try relaxation techniques or

which we live. Sometimes, fears about a child’s future

natural remedies such as herbal tea before bedtime.

can prevent parents from appreciating their child in

Don’t do research on autism right before you plan

the present. Parents may get caught up in asking:

on going to sleep. If your mind is racing, you may

“What wil happen to my child when he or she is five

have trouble fal ing asleep. If you find that you are

years old, or 12 or an adult?” or focusing on other

experiencing chronic insomnia, speak with your doctor

unknowns such as when their child wil speak or learn

about medication.

to relate to others. While it’s important to think about

When you can make the time, add in exercise.

and plan for your child’s future, you cannot al ow it

Exercise can help relieve stress. If you don’t have

to cloud your vision of where your child is at present.

the time to go to the gym, then take a walk. Many

Celebrate your child for who he or she is right now.

parents find themselves spending a lot of time indoors,

especial y if they are running their child’s home

You’re not alone

treatment program. Make sure to set aside time to go

outside. A walk in the park can help to lift your spirits.

As you cope with your child’s diagnosis, keep in mind

that you are not alone in your journey. Contact other

Think positive

parents who’ve been through this with their own

children. Reach out to your friends and loved ones.

During this difficult time, it’s especial y important to

Share your feelings in a support group. Find ways to

surround yourself with people with positive attitudes.

take care of yourself. You deserve the same love and

They wil be your best al ies and wil offer you the sup-

attention that you are giving your child.

port and guidance you need. Avoid negative friends

and family who might not have worked through their

own feelings about the diagnosis and may unnecessar-

ily share feelings of anger and fear with you.

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The Official Autism 101 Manual

References

• Gray, D. (2003) Gender and coping: the parents

of children with high functioning autism. Social

Science and Medicine, 56, pp. 631–642

• Seltzer, M. et al (2001) Families of adolescents

and adults with autism: uncharted territory.

In: International Review of Research in Mental

Retardation, L.M. Glidden (ed.) San Diego:

Academic Press (Available from the National

Autistic Society Information Centre)

• Sharpley, C.F., Bitsika, V. and Efremidis, B.

(1997) Influence of gender, parental health,

and perceived expertise of assistance upon

stress, anxiety, and depression among parents of

children with autism, Journal of Intel ectual and

Developmental Disability, 22(1), pp. 19–28.

112

Chapter 10: Family matters – helping

siblings and extended families

Family matters—helping

siblings & extended families CHAPTER 10

113

Helping others understand the one you love

Contributing Author Lisa Simmons is the creator of the <Ideal Lives Online Advocacy & Inclusion Center> and author of the special report, < Disability Awareness: Special Kids Don’t Have to Feel Left Out> .

Resources and links— Lisa Simmons suggests visiting her Autism Today website to learn about her other products and services: Visit <http://lsimmons.autismtoday.com> today! (*Please note, don’t put in the www.) You can write to Ms. Simmons at <lisa.simmon@cox.net>.

You are walking through the shopping mal or

(including those aggravating strangers at the mal ).

buying groceries with your family. Suddenly

Although it may feel counterproductive to start at

you are approached by a stranger who either stares,

home when strangers on the street are the ones causing

pointedly looks away or asks you a point blank

you sleepless nights, I do this because it gives you a

question: “What’s wrong with your child?” The

chance to increase your personal circle of support and

stranger’s look and action show lack of understanding

it gives you lots of practice talking about your child’s

and tolerance.

diagnosis, so that you can fine-tune your explanation

How do you respond? With righteous anger or

and provide it in a way that is calm, clear and concise.

compassion?

You wil almost certainly feel anger on behalf of

Step 1: Start with yourself

your child and family, but giving in to it wil leave you

If your child has received his/her diagnosis recently,

drained and frustrated. And what if the person who

then the first person you need to escort through this

doesn’t understand is actual y part of your immediate

process is yourself.

or extended family? This can cause even deeper

(A) Listen to the stories of other parents

emotional wounds.

raising children with autism spectrum

I want to encourage you to do al that you can to

disorders. Do you see yourself and your

respond with compassion in these situations. You have

child? Try not to focus on the stories that scare

started on a journey, and so have they. They just don’t

you. Instead, tuck away helpful hints and jot

know it yet!

down names of parents you may want to talk

Make your goals (A) awareness, (E) education,

with more, down the road.

and (AC) acceptance—usual y in that order.

(E) Do your homework. Do the symptoms

ring true for your child? Do you believe that

Disability awareness

this is the correct diagnosis for your child? Do

Disability awareness or, in this case, autism aware-

you understand the challenges that lie ahead

ness is about helping someone make the leap from

as well as the resources that can offer hope and

confusion and fear to acceptance and understanding.

support to your family?

Sometimes that leap can be made quickly and some-

(AC) Apply what you have learned. Begin to

times it only happens with lots of encouragement and

build the network of support that your special

persistence.

child needs (medical treatments, education

We wil start at home and walk through ways

strategies, personal support). < Click here to

you, your spouse and your family can practice this

read more ideas on how to identify your

process. Then we wil move on to practical ways to

own personal network of support. > move through this process with your child, your child’s

classmates or peers, and your community at large

114

Helping others understand — Lisa Simmons

Step 2: Support your spouse

Step 3. Support your extended family

Often the spouse not involved in primary childcare has

members

more difficulty accepting a diagnosis of autism. This

Loved ones who don’t see your family frequently may

person may withdraw into roles outside the family

find it easier to see your child’s behavioral symptoms

or even withdraw from the family completely. It’s

as a reflection of your parenting rather than the

important to do al you can to help your spouse reach

special needs of the child. Accept that this is a coping

acceptance. Your spouse’s active participation wil

mechanism, an attempt to block out information these

make your efforts as a parent, caregiver and advocate

people don’t want to receive.

much more effective. To get started, think about how

(A) Let family members know about your

your spouse makes decisions and help him/her find the

child’s diagnosis as soon as possible. Often

kind of input needed to reach acceptance.

writing a letter makes a more lasting impression

(A) Share the realities of your day. Encourage

than engaging in a conversation. Chances

your spouse to spend time alone with your

are this will be their first introduction to the

child and experience his/her care first hand. If

subject of autism. So try to use your own

verbal discussions become highly charged, try

homework to explain it as simply as possible in

writing a journal or a letter and sharing that.

words that are familiar.

(E) If your spouse responds to facts, have him/

(E) Not every family member will be open to

her complete a signs and symptoms checklist

knowing more, but encourage any that show

for your child. Seeing the results in black and

signs of interest. Loan them your resource

white can be an eye-opening experience. If he/

books to read. Spend time together with your

she gives greater weight to the voice of experts,

child or write out a typical day, so they can

find a parent book on autism for him/her to

understand the reality of your child’s needs.

read or take them along to a therapy session.

Print and provide family-friendly information

Is there a need to process in private or in a

that you find online and let them learn a little

group? Attending an autism conference where

at a time.

he/she can meet others living your reality can

(AC) Talk about ways individual family

provide opportunities to connect with other

members can support your family (coming

spouses. On-line options like < teleclasses and

with you to meetings, babysitting so you

multimedia presentations> can provide all can go to a support group or out to dinner,

the information of a conference in a much

spending time with a sibling who may be

more private forum. The key is to find what

feeling overlooked, etc.) By letting them do just

works for your spouse and connect him/her

a few non-threatening tasks and showing your

with the necessary information.

appreciation you both benefit and your family

AC) Involve your spouse as much as possible.

bond is strengthened.

Your advocacy efforts will be strongest if

you attend school meetings and medical

Step 4: Support your child

appointments together. This will allow both of

Parents go through a range of emotions when a child

you to help establish priorities, contribute to

is diagnosed with autism. Your child also needs to be

the “the plan of action” and take advantage of

given information about the diagnosis and support for

opportunities to ask questions. It also ensures

understanding and coping with this new information.

that the support you offer your child at home

Adults on the spectrum who are successful have

will be a united effort.

learned who they are, and accept and use that

information to help themselves become the best they

can be in life.

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The Official Autism 101 Manual

Does the idea of discussing autism or Asperger’s

simple enough for young children to understand and

Syndrome with your child seem scary or even sil y?

short enough to keep a younger reader’s attention. For

Lots of parents put this task off. They fear that the

an older child try, Asperger’s: What Does It Mean to Me?

child won’t understand or that hearing the information

by Catherine Faherty. It comes in a workbook format

wil make the child feel bad. Chances are your child

that provides activities that help explain an autism

won’t understand what you have to say the first time,

spectrum diagnosis as wel as make the information

but a journey can’t start without that first step. Your

more child specific and concrete. The child and you, as

child’s diagnosis wil affect his/her entire life. Problems

the trusted adult partner, can complete the workbook

wil occur and the road wil have chal enges, but

together.

correct information about the diagnosis and his/her

(E) Check with your state Parent Training &

differences offers the child a better chance of being

Information Center or your local autism support

successful.

group. Many have a library of videos that can be

checked out for viewing by your family.

Timing: There is no exact age or “right time” to tel

a child about the diagnosis. You know your child best

(AC) Talk with your child one-on-one. If your child

and you wil need to make a decision based on his/her

is very visual, videotape them and watch the video

personality, abilities and social awareness. Look for

together as a conversation starter. Consider your child’s

signs that the child is ready for information. Some

ability to process information and try to decide on

children wil actual y ask: “What is wrong with me?”;

what and how to give them information. Remember

“Why can’t I be like everybody else?”; or, even, “What

it doesn’t al have to happen al in one big session.

is wrong with everyone?” These types of questions

A series of conversations may meet both your needs

are certainly a clear indication. Others, however, may

better.

have similar thoughts and not be able to express them.

The bottom line: try to offer your explanation before

Step 5: Inform your child’s classmates

your child has lots of negative experience related to

and teachers

his/her diagnosis. Just as early intervention is the key

Just as you come to rely on your co-workers as

to effective treatment, early communication is the key

an extended family, so your child wil see his/her

to healthy self-esteem and self-acceptance.

classmates at school as a primary source of interaction

So, when you’re ready . . .

and support. Time spent ensuring that this group

Set a positive tone and focus on uniqueness as the

is wel informed and supportive when your child is

quality that makes each of us special. Talk about the

young wil make the road easier as your child grows.

qualities of different friends and family members, how

(A) Volunteer to do an autism awareness

each has their own likes and dislikes, strengths and

presentation for your child’s class as soon as

weaknesses, and physical characteristics. This makes

school starts. Use strategies and conversations

uniqueness just a matter of course. It also makes it

you have already developed with family and

easier to talk about differences related to your child’s

friends to explain this complex diagnosis

diagnosis.

in child-friendly language. The Center

for Disease Control & Prevention has a

Practical tools: (A) When your child is young,

<Kids Quest of Kid-Friendly Facts> that read simple stories about autism or other children who

may be helpful. Be sure to personalize your

have autism spectrum disorders. A book like My Friend

information for your child and cover critical

with Autism by Beverly Bishop is a great choice. It is

issues like communicating with your child and

a coloring book designed to help children ages four

understanding his/her social signals.

to eight understand autism and Asperger’s Syndrome.

(E)

It was created by the mother of a young man with

Work with your child’s teacher to integrate

autism and is highly informative. Best of al , it is

autism awareness into the class’s regular

116

Helping others understand — Lisa Simmons

curriculum through stories, empathy building

• Write letters to the editor giving your

activities and reports.

perspective on special needs issues. Many

(AC) Discuss ways to encourage peer

sectors in your community will affect your child

friendships for your child through the use of

with autism (childcare, healthcare, education,

peer mentors or friendship groups, such as a

employment). A simple, personal letter can

Circle of Friends. Add these items to your

have great impact. Don’t allow your child’s

child’s individualized education program (IEP)

options to be limited because you didn’t speak

to make them a priority. And be sure to focus

out on issues that were close to your heart.

attention on your child’s social responses as

• Remember that calm, clear, concise message

well. Utilizing techniques such as social stories,

you’ve been working on? Consider that your

social circles and software programs designed to

“elevator speech,” and have it polished and

help children with spectrum disorders recognize

ready for anyone who approaches you on the

and interpret facial expressions can all help your

street. Your goal: give your message within 30

child feel more comfortable and confident in

seconds.

social situations.

• < Educational cards> —If you aren’t sure you Step 6: Build awareness in your community

can talk calmly when someone has spoken

rudely to you or your child, create a set of

When it comes to the community at large, you may

educational cards. This allows you to “do your

have great difficulty moving any particular individual

part” for raising awareness by simply handing

through the entire process. Instead, focus on building

the individual one card and walking away. Your

awareness. Plant many seeds and hope for a beautiful

local chapter of the Autism Society of America

garden of wildflowers.

may have cards that you can purchase or you

• Volunteer to give presentations to community

can print your own with a personal message.

organizations. Talk about your family’s

They are usually about the size of a business

experience and about your child’s particular

card.

diagnosis. Most community members will have

little or no experience with autism, and you

Now what about that stranger on the street? Try these

can explain both the joys and the challenges

quick solutions:

in a uniquely personal way. If there is a way

• For the person with the awkward question, use

the organization can help, don’t be shy about

a snappy comeback, such as “Kids come in all

suggesting it. Most civic organizations are

shapes and sizes.”

constantly looking for ways to improve the

• If a stranger simply stares, walk away. But as

community and are very open to ideas.

you walk, focus on your child and count five of

• Take part in regular autism awareness events/

your child’s small, amazing accomplishments.

activities with your support group. Frequently,

Genuine pride and delight will soon put the

a group of parents working together to raise

smile back on your face.

public awareness will have a larger impact than

an individual can have acting on his or her

own. In the United States, April is recognized

as National Autism Awareness Month, but for

a larger impact, consider working with your

group to do small activities throughout the

year. Whether you are sharing information or

doing a fund-raising event for autism research,

let your voice be heard in your community.

117

Siblings of children with autism

Contributing Author Sandra L. Harris, Ph.D., Psychology, Rutgers, The State University of New Jersey—Dr.

Sandra L. Harris is Board of Governors Distinguished Service Professor at Rutgers University, and executive director of the Douglass Developmental Disabilities Center, a university-based program for the treatment of children with autism. Her research and clinical interests focus on children with autism and their families. She has written extensively in this area, including several books and dozens of journal articles and book chapters.

Dr. Harris consults nationally to schools and organizations that serve people with autism and has served as an expert witness in legal cases concerning the rights of people with developmental disabilities. She is an associate editor of the Journal of Autism and Developmental Disorders, a fellow in the APA divisions of Clinical Psychology and Child and Youth Services and a fellow in the American Psychological Society. Dr.

Harris is a licensed practicing psychologist. Dean Harris’s book, Siblings of Children with Autism received the 1995 Autism Society of America Award for Literary Achievement.

Resources and links—Sandra L. Harris, Ph.D. suggests visiting her Autism Today website to learn about her other products and services: Visit <http://harris.autismtoday.com> today! (*Please note, don’t put in the www.) Parents tell me these books are helpful in understanding the experiences of siblings:

•

Feiges, L. S. & Weiss, M. J. (2005). Sibling stories: Reflections on life with a brother or sister with autism. Shawnee Mission, KS: Autism Asperger Publishing Co.

•

Harris, S. L. & Glasberg, B. (2003). Siblings of Children with autism. A Guide for families. 2nd ed.

Bethesda MD: Woodbine House.

•

Siegel, B., & Silverstein, S. (1994) What about me? Growing up with a developmentally disabled sibling. New York: Plenum Press.

You can write to Dr. Harris at <sharris@rci.rutgers.edu>.

For most of us, life is in families. Every child on

Fortunately, there are things you can do to address

the autism spectrum has a powerful influence on

your concerns about whether you are supporting al of

parents, grandparents, siblings and other caring people

your children appropriately. One thing is to remember

who surround the family. When we think about the

that al of us have had jealous feelings about our

needs of people on the autism spectrum, we must also

brothers or sisters. As children we al felt competitive

think of the needs of the family as a whole. As a parent

with our siblings, and there were times when we

you have a responsibility to provide the best possible

thought our parents were giving more to a sibling

childhood for al of your children. However, you wil

than to us. Those concerns are not unique to parents

not be able to meet this chal enge unless you also

of children with autism. Remembering that may help

ensure that your life and that of your family is one of

you keep your typical y developing child’s feelings and

substance and value.

needs in perspective.

Next to their child with autism, most parents

It is also important to remember that children

worry most about the other children in the family.

have different needs at different points in their

They worry about whether they are neglecting these

development. The very young child needs a sense

children because they are trying to do their best for

of security and safety. That means ensuring they are

their child with autism. In any family it is always a

protected from the tantrums or aggression of an older

balancing act to meet everyone’s needs. We al have

sibling with autism. As they get older, children are

limited resources and many things to do. But children

more concerned about issues of fairness. You may not

with autism have exceptional needs and that heightens

be able to devote exactly the same time or resources to

the stress for parents as they try to meet the needs of

each child, but you can try to ensure that each child

other children in the family.

has opportunities for your focused attention. Try to

118

Siblings of children with autism — Sandra L. Harris, Ph.D.

provide individual time and attention to each child.

As your child grows up, she wil be able to understand

your explanations about why her sibling with autism

needs more from you, but she stil needs to know

there are times during which she is the focus of your

attention.

Many children take a page from their parent’s book

when it comes to understanding their sibling with

autism. If you as a parent have achieved some comfort

about such things as going into the community or

dealing with your child’s problematic behaviors, it

is likely that your other children wil model your

behaviour in these situations. That does not mean they

wil not have moments of embarrassment, especial y

when they are in their teens, or that they wil never

be unkind to their brother or sister on the autism

spectrum. Most children, like most adults, say unkind

things from time to time. But remember that you are

your child’s most important role model, and he or she

wil very likely come to share your perspective over

time.

It is also important not to al ow brothers or sisters

to become auxiliary parents. Although everyone in

the family needs to do his or her part in keeping the

family afloat from day to day, children should not be

asked to take on too much responsibility for the care

or supervision of their brother or sister with autism.

They should especial y not be cal ed on to deal with

chal enging, hard-to-manage behavior problems.

Final y, it is important to keep in mind that

research shows that brothers and sisters of children

with autism are pretty much like other people. Most

of them cope wel with the special demands created by

their sibling and have good lives as adults, including

an ongoing connection with their adult sibling.

119

Chapter 11: How to deal emotionally with

spousal and other relationships around

How to deal emotionally

autism

with spousal and other

relationships around autism CHAPTER 11

121

How to deal emotionally with spousal and other

relationships around autism

(selection from Maintaining a Strong Parent Team)

Contributing Author Nicholas Martin, MA, Clinical Practices, Psychology Department, University of Hartford—Mr. Martin is a conflict resolution consultant residing near Fort Worth, Texas. He is a very popular conference presenter with a background in clinical psychology and in court and postal service mediation.

Among his published works are An Operator’s Manual for Successful Living, Strengthening Relationships When Our Children Have Special Needs, and A Guide to Collaboration for IEP Teams.

Resources and links— Nicholas Martin, MA suggests visiting his Autism Today website to learn about his other products and services: Visit <http://martin.autismtoday.com> today! (*Please note, don’t put in the www.) You can contact Mr. Martin by visiting his web site, <www.4accord.com>.

Ask any parents with experience in the autism world Finding time alone:

and they are likely to tel you that the first rules of

• Give yourselves permission to take time out for

success are: don’t go it alone, and don’t wait for a crisis

self.

before taking steps. Simply stated, among the best

• Make plans for weekly or monthly time alone

things parents can do for themselves and their families

(schedule it).

is to get connected with support groups and services

before they reach a point of desperation.

• Meet for lunch or arrange a regular hour before

A proactive position begins with the recognition

or after work.

that having a child with special needs is going to add

• For guidance, information and support:

to the chal enges a couple wil face. However, many

• Let it be known when you need help.

parents and researchers report that, handled correctly,

the chal enges associated with raising such children

• Connect with other parents facing similar

have actual y strengthened and benefited families in

challenges.

many deep and meaningful ways. But going to bat

• Join a support group right away and get

without adequate preparation can only lower anyone’s

involved in its activities.

chances of success. Knowing what you’re likely to be

• To communicate effectively:

up against is half the battle won!

• Recognize how important this is and make an

A little bit of research or a few books and articles

agreement to work on it.

wil quickly bring into focus a handful of the

chal enges most commonly reported by parents. These

• Use “I” statements and a tone of caring, as

include: avoiding blame, finding adequate child

opposed to anger, blame and frustration.

care, finding resources for support and guidance,

• Set aside time on a regular basis to talk; don’t

maintaining effective communications, finding time

wait for a crisis.

alone and together, managing the extra expenses and

• Be patient, and sensitive to your partner’s

maintaining a positive outlook.

feelings and priorities; ask how best to approach

Space does not permit exploring these issues in

him or her, when would be a good time to talk

depth, but here are a few suggestions from those who

and how he or she wants to be kept informed.

have faced these chal enges with success:

• Seek professional help if necessary.

122

Dealing emotionally with relationships around autism

Contributing Author Daniel Hawthorne is a diagnosed High Functioning Autistic. He is the author of Child of the Forest and Guidelines to Intervention in Autism, and webmaster and author of the award winning site

< www.autismguidelines.com> . He has degrees in Communication and Business Administration, most recently through the University of Arkansas. He does numerous speaking engagements to autism support groups and to special schools, in addition to managing an online resume posting business.

Resources and links—Daniel Hawthorne suggests visiting his Autism Today website to learn about his other products and services: Visit <http://hawthorne.autismtoday.com> today! (*Please note, don’t put in the www.) He enjoys corresponding with parents, teachers, and others in the autism community, and may be contacted at < daniel@autismguidelines.com> .

I am convinced that most people do not have a clue

about the immense amount of frustration and anxi-

ety felt daily by those within the autism community.

Loving parents, devoted teachers, caring therapists—al

feel this same frustration, at varying degrees. Eventu-

al y, it affects the health of these people. Of course, the

individual with autism, being tormented by sensory

overload and sensory confusion, suffers the most.

A lot of times, when hostility is expressed by a

spouse having difficulty dealing with the fact that his

or her child is autistic, it isn’t personal.

123

Chapter 12: Creating positive parent-

physician partnerships

Creating positive parent–

physician partnerships

CHAPTER 12

125

A parent–physician team approach

(This section is based on excerpts from Diagnosis Autism: Now What? 10 Steps to Improve Treatment Outcomes) Contributing Author Lawrence P. Kaplan, Ph.D., Health Administration and Research with an emphasis in autism spectrum disorders, Kennedy-Western University—Dr. Kaplan is the Executive Director of US Autism and Asperger Association, Inc., a national association dedicated to enhancing the quality of life of individuals and their families/caregivers touched by autism spectrum disorders by providing educational and family support through conferences/seminars and published and electronic mediums. Dr. Kaplan is the author of Diagnosis Autism: Now What? 10 Steps to Improve Treatment Outcomes.

Resources and links— Lawrence P. Kaplan, Ph.D. suggests visiting his Autism Today website to learn about his other products and services: Visit <http://kaplan.autismtoday.com> today! (*Please note, don’t put in the www.) You can reach Dr. Kaplan at US. Autism and Asperger Association by calling 1-888-9AUTISM or by writing < drlkaplan@usautism.org>.

Background

dedicated to helping al of our children who fal within

A

the spectrum of autism disorders.

s parents, my wife and I remember our pediatri-

cian explaining that our child would be fine, that

he would talk and walk. As our older son and the

A pediatric partnership

other twin developed normal y, we were advised to be

It has taken many years for us to develop a pediatric

careful not to compare the kids. While it was difficult

partnership. While it is not entirely perfect and

to refrain from making comparisons, it was obvious

resistance does exist, we are fortunate to have

that one of the twins was not progressing on the same

partnered with a wonderful and caring pediatrician.

path as the other boys. This was evident when our son

When I bring our son in for an appointment, she is

was not walking at 18 months of age, had had episodes

no longer intimidated by the fact that I am holding

when he banged his head on the wal s and was very

a stack of books with the most recent information

limited in his development.

on autism. At times, there is a role reversal, when the

While we have met many understanding and

patient educates the pediatrician!

helpful health-care practitioners, we have also

The majority of pediatricians are absolutely

experienced many frustrations of the waiting room:

wonderful for primary care, but it is a mammoth

completing lengthy medical forms and enduring

chal enge for a pediatrician, or any physician, to be

the embarrassment as our son screamed and ran

proficient in al aspects of disease. I chal enge you, the

throughout the hal s while we were looked upon

parent, and the health care practitioner to empower

as inadequate parents. Visiting experts resulted in

each other. Form partnerships to investigate the best

responses of “There isn’t anything I can do for you.”

methods to improve care for your child.

Even though my wife and I at times have nearly

The causes of ASD are a complex maze of

exhausted ourselves during the past 12 years trying to

hypotheses. The abundance of theories has caused

gain assistance for our son, we continue to persevere

many practitioners to either overlook the disorder

and maintain patience. We have been extremely

or proceed extremely slowly in providing referrals

fortunate to have met many individuals who have

to specialized practitioners. What complicates the

furthered understanding of this complex disorder.

issues further is that the diagnosis includes various

And though there are not any cures, organizations

assessment methods. Different evaluations result in a

have developed rapidly over the last few years that are

diversity of intervention and treatment protocols that

127

The Official Autism 101 Manual

lead to different paths for different individuals. And

and a School Activity Chart that al ow you to monitor

these paths can change as the child grows.

and record your child’s development at home and

Pediatricians who evaluate infants during the

at school. As you chart behaviors and reactions of

first years of life should be able to identify relevant

your child in these two logs, the list of Common

abnormal milestone markers. Once the diagnosis is

Characteristics of Autism Spectrum Disorders may be

confirmed, case management should be implemented

helpful in identifying additional traits.

without delay. Physicians need to integrate al of

the information they gather and provide effective

Step 2: Organize information for

patient care. This care includes making the parents

physician interview

aware of the risks and benefits of a proposed course of

Two steps prepare you for the first appointment with

treatment, and fostering an effective dialogue between

the physician.

the health-care practitioner and parents regarding what

1) Gather essential information, including:

action to take. The parents should be just as involved

• Your complete Daily Log and School Activity

as the physician in the decision-making process.

Chart

For example, pediatricians should inform parents

• Health insurance information

of the relevant benefits of vaccinations as wel as the

• Your written expectation of achieving the

possible risks. However, the pediatrician should not

best outcome for your child, including the

simply give the parents this information and ask them

use of consultants (e.g., DAN! practitioner,

for a decision. The parents and pediatrician should

neurologist and speech therapist)

engage in a dialogue, where the parents can express

• Medical records from all laboratory tests and

concerns and pediatrician can relate her/his personal

diagnostic procedures

experiences and discuss ways to help reduce some of

2) Recognize distractions in and around the clinic.

the risks of vaccinations.

If the goal is to ensure a successful outcome

Step 3: Develop an assessment and

for your child, how do you begin? You start the

evaluation plan

implementation process by fol owing the 10-step

Studies have demonstrated that early intervention im-

program from the book < Diagnosis Autism: Now

proves a child’s behaviors, language skil s and cognitive

What? 10 Steps to Improve Treatment Outcomes; A

abilities. Using various assessment and evaluation tools

Parent-Physician Team Approach > . The 10 steps apply may identify areas for additional treatment, increasing

to partnering with many different types of health care

the likelihood of successful outcomes. Scales and de-

practitioners, not just pediatricians. The fol owing

velopmental testing tools commonly used by clinicians

steps occasional y refer to materials found in the book.

are found in the Assessment, Evaluation, and Testing

Tools Chart of my book.

Steps to an effective parent–physician

team approach

Step 4: Acquire a knowledge base

through research

Step 1: Monitor and chart your

Acquiring a strong knowledge base on autism

child’s development

spectrum disorders is imperative, and your research

The first step toward a parent–physician team

should begin before your first meeting with the

approach is to provide your doctor with a thorough

physician. A considerable amount of material may

record of your child’s development. Accurate, up-to-

be obtained from libraries, universities, non-profit

date records of your observations and concerns are

organizations and friends in similar circumstances.

essential for accurate diagnosis and early intervention

In my book I introduces five key points for Internet

treatment. The preparatory tools for your physician

research in Step 4. The Research Resources Chart lists

meeting and initial appointment include a Daily Log

links and contacts that may help you as you develop

an effective parent–physician partnership.

128

A parent-physician team approach — Lawrence P. Kaplan, Ph.D.

Step 5: Formulate questions for the

wel -trained professional and your recognition that

physician appointment

you both have the same goal: the best outcome for

It is important that you understand the physician’s

your child.

practice policies and know how the clinic’s group of

physicians wil treat your child. Step 5 in my book

Step 9: Listen and be open minded

provides sample Questions for Physician Interview.

Once you have made your case during your initial

appointment, it is the physician’s turn to talk. If you

Step 6: Initiate treatment and

want to be a better communicator, learn to listen.

program approaches

Keep your focus on the physician, giving the physician

Interventions can be divided into three main

your undivided attention. Try not to be distracted

categories: educational, medical and complementary.

by your surroundings. It helps to have your initial

Charts in my book include Educational Therapy,

appointment without your child. Step 9 proposes 10

Medical Therapy, Nutritional Supplements Therapy, and

steps leading to effective listening and receiving advice

Dietary Therapy. According to the Nelson Textbook

from your physician.

of Pediatrics (2004): “There is compel ing evidence

that intensive behavioral therapy, beginning before

Step 10: Review, negotiate and

three years of age and targeted toward speech and

follow through

language development, is successful both in improving

Now that you have met the pediatrician or other

capacity and later social functioning.” The Manual

health care practitioners, it is time to evaluate the

of Pediatric Therapeutics (Graef 1997) supports this.

interview. In order to effectively assess the initial

Once the pediatrician has identified the disorder, it

meeting, list the advantages and disadvantages.

is essential to initiate treatment that “consists of a

Step 10 in my book covers the appointment review,

structured program in a supportive special education

negotiation and fol ow-through. There is a list

environment. This includes behavioral treatment

of advantages and disadvantages in the Interview

for improving social responses and communication,

Worksheet. The Negotiation Tips Worksheet offers

and decreasing inappropriate behaviors; and parent

suggestions on how to negotiate with your doctor.

education.”

To acquire an in-depth knowledge on how to

successful y achieve a parent-physician partnership,

Step 7: Carefully choose your

fol owing this link to purchase the book <Diagnosis

primary physician

Autism: Now What? 10 Steps to Improve Treatment

One approach is to use a primary care pediatrician

Outcomes; A Parent-Physician Team Approach>.

for general pediatric visits, and a supplemental

practitioner who specializes in autism spectrum

disorders. In my book, Step 7 includes recommended

options for sourcing a pediatrician and a DAN!

practitioner, as wel as other health-care practitioners

whose skil s reflect the health-care needs for your child

with ASD.

Step 8: Respect your doctor/earn your

doctor’s respect

To create a working relationship with your physician,

first, respect your doctor. Then, during your interview,

you should strive to earn your doctor’s respect. Respect

refers to your acknowledgement that the doctor is a

129

Chapter 13: Helping the child with ASD

gain social skills

Helping the child with ASD

gain social skills

CHAPTER 13

131

Social skills training for children with

Autism Spectrum Disorders

Contributing Author Jed Baker, Ph.D.—Dr. Baker is the Director of the Social Skills Training Project in Maplewood, N.J. He is on the professional advisory board of ASPEN (an information network for parents of children with Asperger’s Syndrome). He is a behavioral consultant for several New Jersey School systems, where he provides social skills training for students with pervasive developmental disorders and learning disabilities. He directs and supervises social skills training for students at Millburn Public Schools. In addition, he writes, lectures and provides training across the country on the topic of social skills training for individuals with Asperger’s Syndrome and related PDDs. He has recently published both a manual on social skills training for children with Asperger’s Syndrome and a social skill picture book to aid in social skills training.

Resources and links—Jed E. Baker, Ph.D. suggests visiting his Autism Today website to learn about his other products & services: Visit: <http://baker.autismtoday.com> today! (*Please note, don’t put in the www.) For more information about Dr. Baker and the Social Skills Training Project, visit <www.socialskillstrainingproject.com>.

Motivation to socialize

John is three years old, with very limited language Her teachers and parents explain that she needs to skil s. When his parents try to sit and play with

compromise if she wants to develop friendships with

him he focuses on lining up play letters on the floor,

peers and needs to do the work if she wants to get a

virtual y ignoring his parents. They cal his name and

job later in life. She explains that she has no interest in

he does not respond. They show him other toys and he

making friends or ever having a job, and thus there is

ignores them. His older sister tries to engage him in a

no need to do the work or compromise with others.

game of peek-a-boo and he shows no interest.

Although very different in their levels of

Karen is a 12-year-old with Asperger’s Syndrome.

functioning, neither John nor Karen is motivated to

Her intel ectual and language skil s are excel ent. She

learn social skil s. Efforts to teach them how to relate

is very articulate and understands most anything

to others wil be frustrating for al until the issue of

someone says to her. Often, when she has a project in

motivation is addressed. The table below describes

school, she either refuses to do it or refuses to compro-

several methods of motivating students to learn social

mise with peers or teachers on how to do the project.

skil s and many other skil s.

External/Contrived Motivators

Internal/Naturalistic Motivators

Preverbal • Controlled studies demonstrate effectiveness

• Controlled studies demonstrate effectiveness

reasoner

• Discrete Trial Intervention: Lovaas

• Verbal Behavior Training: Sundberg & Partington

(Rewards are not necessarily logically

• Natural Language Paradigm and Pivotal response

related to the student’s response.)

Training: Koegel & Koegel

(Rewards are logically related to the student’s response.)

• Promising but no true controlled outcome studies:

Floortime—Greenspan; RDI—Gutstein

Verbal

• Controlled studies demonstrate effectiveness

• Promising but no true controlled outcome studies yet

reasoner

• Token systems and behavior charts

• Link skill goals to student’s personal goals

• Increase awareness of assets before describing

possible challenges that need to be addressed

• Make socializing fun

• Have student teach others the social skills

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The Official Autism 101 Manual

The Table on the previous page categorizes methods

behavior analysis (ABA) have been subjected to the

of motivating students in terms of the language ability

most rigorous control ed evaluations of outcome and

of the students (preverbal versus verbal reasoner) and

demonstrate excel ent results in about 50% of autistic

the locus of motivation (external/contrived versus

students in terms of intel ectual, language, adaptive

internal/naturalistic). Preverbal reasoners are students

and early social skil s.

who may have some language but are not yet able to

ABA approaches include Discrete Trial Intervention

understand “if—then” statements, such as “If you

(DTI) (Lovaas, 2003), Natural Language Paradigm

play this with me, then you can have a snack.” Verbal

(and its more recent cousin Pivotal Response Training)

reasoners can understand “if—then” statements, so

(Koegel and Koegel, 2005), and Verbal Behavior

that one can try to motivate them through verbal

Training (Sundberg and Partington, 1998). Although

reasoning. An example: “If you do your math with me,

these approaches share a basic structure of teaching

then we can play afterwards.”

behavior through cueing, prompting and rewarding

External/contrived motivation refers to providing

students, they differ in their emphasis on teaching in

students with a reward that may be unrelated to the

natural environments and utilizing internal/naturalistic

activity or response they are making. For example, if

versus external/contrived motivational systems.

a student is able to greet others when prompted, an

A discrete trial has five components: a cue, a

external reward might be a special snack or access to

prompt, the student’s response, a reward and data

a toy. The reward here is not logical y related to the

col ection. Early DTI interventions often emphasized

response (i.e., greeting) and is not natural y built into

compliance and labeling of objects. For example, if a

the situation (i.e., the instructor must provide the

child was learning colors, the child might get a cue,

reinforcement).

“Point to the blue car.” Then the instructor might

Internal motivation refers to situations in which

prompt the student to touch the blue car. If the child

the student’s behaviors natural y provide them with

responded correctly he might then get a favored

rewards because the activity itself is rewarding or

reward, such as a piece of candy. Here the reward is

because the student’s responses bring its own rewards.

not natural y related to the response. Earlier DTI

For example, if a child enjoys playing fol ow the

approaches have been shown effective in improving

leader, then playing the game is itself rewarding and

students’ abilities to respond to adult cues, but they

there is no need to provide another reward. Similarly,

are not always as successful in increasing students’

if a student learns to request a toy from others and

spontaneous language or generalizing skil s in natural

receives the toy, then the request natural y leads to its

settings.

own reward, receiving the toy, and there is no need for

In contrast, Verbal Behavior Training and Pivotal

other rewards.

Response Training occur in more natural settings and

capitalize more on the students’ own interests. In the

first phase of verbal behavior training, the emphasis

Motivational strategies for

is on teaching children to spontaneously request,

non-verbal reasoners

utilizing the students’ own interest in activities, food,

The motivational methods listed for non-verbal

objects, wanting a break or wanting attention while

reasoners include strategies often associated with

in a more natural play environment. As such, the

“early intervention.” The goals are often to build

students are typical y highly motivated, since their

crucial skil s that are prerequisites for later learning in

responses lead to natural y rewarding consequences

school and social settings. These skil s include joint

(i.e., getting what they requested). Similarly, Pivotal

attention (attending to others and attending to what

Response Training begins with assessing what the

others point out), the ability to label objects, request

students is interested in and then beginning a discrete

objects, fol ow simple directions and answer simple

trial centered on that interest. For example, if a

questions. The interventions associated with applied

youngster shows an interest in playing with a car, the

adult might hold the car out and cue, “What color is

134

Social Skills Training — Jed Baker, Ph.D.

the car?” If the youngster says “car,” the adult might

party), then teaching crucial skil s can be linked to

cue and prompt, “What color is the car? Is it blue?”

these goals. For example, if a youngster wants to go to

And when the child says, “blue car,” the child would

a birthday party, one can motivate him to learn how

get to play with the car.

to play the games that they wil play at the party and

Greenspan’s “Floortime” DIR (Developmental

other crucial skil s to maintain himself at the party.

Individual-Difference, Relationship-Based) model also

Similarly, many adolescents who never wanted to

capitalizes on the student’s own interests, emphasizing

learn social skil s suddenly develop motivation to learn

fol owing the lead of the youngster as the adult

certain skil s in an effort to help them find a date.

plays with the student in an effort to target various

Strategies cannot be so straightforward for the

developmental skil s (the interested reader should

student who seems to have no goals, has become

see Greenspan & Wieder, 1998). Although there are

depressed and is withdrawing from the social world

some semi-structured play activities in this model,

entirely. Such students may need to deny a need for

cues, prompts and rewards are not used in the same

skil s training. It takes a modicum of self-esteem

systematic way as in ABA methods.

to tolerate thinking about one’s difficulties. One

Another promising approach is Relational

way around such resistance is through counsel ing

Development Intervention (RDI) (Gutstein & Sheely,

that al ows them to expand their senses of their

2002). RDI outlines a systematic set of activities

talents and strengths before targeting areas that need

that encourage students to want to engage in social

improvement. For most students, it is helpful to have

interaction because of the joy in the social activity

someone else point out two to three strengths for every

and not because of a contrived/external reward for

difficulty that is highlighted. The student can be asked

interacting. Early activities to build joint attention

directly what talents and strengths they have and then

might include imitation games like fol ow the leader

the counsel or can add or refine that lists of strengths

or “fol ow my eyes to the prize,” where students have

before suggesting areas in need of improvement. For

to look at an adult’s eyes to find where the adult hid a

example, during group sessions I wil ask each member

prize in the room (the adult is looking in the direction

what his or her special talents are and corroborate

of where the prize is hidden). Although these activities

these positive descriptions. Then I might say, “There

have not yet been empirical y tested, the concept is

are some minor issues I want to address with you

reasonable: engage students in activities that limit

guys so that you can continue to do as wel as you are

over-stimulation and require on attending to others.

doing.” Then comes the lesson on a skil topic.

There are several more ways to motivate

engagement for skil lessons including: using

Motivational strategies for

entertaining role-plays and social games; linking skil

verbal reasoners

lessons to fun group activities or projects; and creating

Verbal reasoners understand “if—then” statements. For

skil lessons to teach others. (See Baker 2003; Baker,

example, if you learn how to interview for a job, you

in press.) This last method involves students creating

might get that job. External motivational strategies

picture books (See later discussion of making social

focus on finding incentives (rewards, privileges) for

skil picture books.), videos or live skits, so that they

practicing new skil s. Often tokens or points are

can demonstrate the skil s to other students. As such,

earned on a behavior chart and exchanged for short

they can learn a skil in order to “help others” without

and long-term rewards.

having to acknowledge that they themselves needed to

For many students, external rewards are not

learn it.

necessary. Internal motivational strategies start with

With some motivation to socialize, skil s can be

linking social skil s training to students’ goals. If

more easily taught and generalized. What fol ows is a

students want friends, a job, good grades or to be able

description of the components of social skil s training,

to engage in an activity (sports, clubs or a birthday

including teaching skil s, generalizing skil s and

targeting typical peers.

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The Official Autism 101 Manual

The components of social skills training

want, say what he wants and to offer to do a little of

both. We explain that when you do a little of both

Al social interaction and social problems involve at

(i.e., compromise) the other person wil be happy and

least two people. A social difficulty can be defined

may want to play with you again or be your friend.

as both a skil deficit for the student with a social

Using this straightforward approach, we have broken

disability and a problem of acceptance of that student

down into simple steps over 70 such social skil s

by peers or the community. Thus intervention must

related to play, conversation, emotion management

focus on teaching skil s for both the student with a

and empathy in a manual on social skil s training for

disability and typical peers. Al too often we strive

children with social-communication problems. (See

to “fix” the child with the disability and virtual y

Baker, 2003.)

overlook the “typical” peers who may be ignoring,

For very young students (three and under) with

teasing or rejecting the student. Moreover, including

very little language or ability to attend to others, we

typical peers as a focus for intervention may yield

might begin with the early intervention strategies

results much sooner, as typical peers may learn to be

described earlier (Discrete Trail Intervention, Verbal

understanding of the student with a disability more

Behavior Training, Pivotal Response Training,

quickly than the child with a disability can learn to

Floortime—DIR, and RDI). For students who have

interact more appropriately with peers. We might

developed some language but stil have difficulty

begin to target peers at the age that many students

understanding verbal explanations, I have translated a

enter school environments and typical y begin to

subset of the skil s that appear in the manual (Baker,

interact with peers, by about three to four years of age.

2003) into picture form. (See the Social Skil s Picture

Consistent with this view, I believe effective social

Book, Baker, 2001.) Instead of explaining skil steps

skil s training for individuals with ASD and their peers

with words, we show a picture sequence. Thus for

consists of at least four components. The student with

a skil -like compromise, the pictures demonstrate a

ASD requires: skil s training lessons to teach explicitly

student asking to play a game with another youngster

the social skil s that do not come natural y for ASD

who says he wants to play another game. We show

students; and activities to promote generalization of

them pictures of the students compromising and

skil s in the situations where they are needed. Typical

playing a little of both games with both looking happy.

peers and the student’s community require: sensitivity

Then we show them pictures of the same people not

training lessons, so that they are more accepting of,

compromising, not playing with each other, with both

and engaging with, students with ASD; and activities

looking upset. Of particular benefit is making your

to promote generalization of sensitivity to ASD

own picture books, so that students have pictures

students.

of themselves engaged in the right (or wrong) ways

to demonstrate a skil . After the pictures are shown,

Skill lessons

students should stil role-play the skil so that they can

actual y go through the motions of the skil steps.

Skil lessons include a variety of strategies geared to the

Another strategy cal ed cognitive picture rehearsal

students cognitive/language functioning. For verbal

utilizes cartoon-like drawings on index cards combined

reasoners (i.e., students who can understand verbal

with positive reinforcement principles (Groden &

explanations), we might break down a skil into its

Lavasseur, 1995). Cognitive picture rehearsal always

component steps, explain it, model it and role-play

includes drawings or pictures of three components:

it until the youngster can demonstrate the skil and

the antecedents to a problem situation, the targeted

understands why it is important. Let’s say a student

desired behavior and a positive reinforcer. The pictures

with good verbal skil s always wants to do things his

are displayed on index cards. On the top of each card

way and that conduct gets in the way of developing

(or on the back of the card) is a script describing

peer relations. We decide to teach him how and why

the desired sequence of events. Children are shown

to compromise. We teach him how to ask what others

the sequence of cards until they can repeat what is

136

Social Skills Training — Jed Baker, Ph.D.

happening in each picture. The sequence is reviewed

“When I am in the cafeteria I often see other boys

just before the child enters the potential y problematic

laughing and I think they are laughing at me. Lots

situation.

of students laugh during lunchtime because they

For example, a cognitive picture rehearsal was

are talking about funny things they did during

created for Matt, a seven-year-old who would throw

the day, or funny stories they heard or saw on TV,

tantrums when his teacher told him to get off the

movies or books they read. Sometimes students

computer. Cards 1 and 2 il ustrated the antecedent to

laugh at other students to make fun of them.

the problem situation: Matt is playing at the computer

If they are making fun of other students, they

and then the teacher tel s him it is time to get off the

usual y use the student’s name, or look and point

computer. Cards 3 and 4 showed Matt engaged in

at that student. If the other students are laughing,

the desired target behavior: thinking that the teacher

but they do not look or point at me, then they are

wil be happy if he gets off the computer and give

probably not laughing at me. Most students do

him a chance to use the computer later, and then

not get mad when others are laughing, as long as

saying, “Okay, I’l get off the computer.” Cards 5 and

they are not laughing at them. If they do laugh at

6 show the positive rewards of engaging in the desired

me, I can go tel a teacher rather than give them

behavior: Matt receiving a point on a reward chart and

the finger.”

the teacher letting Matt use the computer again later

because he had cooperated earlier.

Like cognitive picture rehearsal, Social Stories™

Social Stories™, developed by Carol Gray and

are read repeatedly to children until they have over-

col eagues (Gray et al., 1993), uses stories written in

learned them, and are then read again just prior to the

the first person to increase students’ understanding

problematic situation.

of problematic situations. Beginning with the child’s

understanding of a situation, a story is developed

Generalization

describing what is happening and why, and how

people feel and think in the situation. While the story

Generalization refers to the ability of an individual to

contains some directive statements (i.e., what to do in

use a new skil in situations beyond the training ses-

the situation), the focus is on understanding what is

sion, and hopeful y to use the new skil spontaneously

happening in the situation.

without prompting from others. To achieve this level

The fol owing situation provides an example of

of fluidity with a new skil , individuals must practice

a situation in which Social Stories™ may help an

and repeat the skil steps a great deal. As a result, it is

individual with autism deal with a social problem.

unrealistic to think one can generalize many new skil s

Peter was a 13-year-old who frequently got into fights

at once. In my experience, true generalization occurs

at lunchtime because he believed that other students

when individuals are reminded about or rehearse no

in the cafeteria were teasing him. He said that several

more than one to three new skil s every day for several

other boys who sat on the other side of the cafeteria

months. Although individuals can learn the concept

always laughed at him. He would give them “the

of many more skil s during skil lessons, they may

finger” and then they would start a fight with him.

only be able to generalize one to three new skil s at

When Peter was observed at lunch, it was apparent

a given time. Generalization of a skil involves three

that the other boys were laughing, but not at him.

steps: priming before the situation in which the skil is

They were at least 50 feet from Peter, not looking at

needed; frequent facilitated opportunities to practice

him, and laughing with each other, presumably about

the skil ; and review of the skil after it is used.

some joke or discussion they were having.

Priming involves some reminder to the individual

We developed the fol owing social story for Peter,

of what the skil steps are just prior to needing the

starting with his perspective that others might be

skil . For example, just before going on a job interview,

laughing at him:

an individual might go over how to answer anticipated

questions. Or just prior to starting a frustrating task

137

The Official Autism 101 Manual

at school or at work, the individual might review op-

reward (or not) should be reviewed with him or her to

tions for dealing with frustrating work. Priming can

enhance learning.

be verbal and/or supplemented by a visual aide. Verbal

priming involves someone verbal y explaining the skil

Peer sensitivity

steps prior to the situation in which they wil be need-

ed. Cue cards, behavior charts, copies of skil lessons

Sometimes youngsters with ASD are ignored, yet often

(See Baker, 2003.), Social Stories™, cognitive picture

they are actively teased or bul ied. Students with ASD

rehearsals and social skil picture books can serve as

may do nothing to deserve such teasing and other

visual aides that depict the skil steps.

times they may provoke such reactions with uninten-

If students want to change their behavior but can’t

tional “irritating” behaviors like perseverating on a

remember the skil steps, then cue cards or copies of

topic, making loud noises or having angry meltdowns.

the skil lessons may be ideal. We might write one to

When students are harassed, teased or rejected because

three skil s on an index card and laminate it. Then

they look or behave differently, it is crucial to explain

we might ask a parent, teacher, or employer or the

to others the unintentional nature of their behaviors

student him or herself to review the skil steps prior to

and how others can help. We often talk with peers not

the situation in which it wil be needed. Although it is

only about the unintentional nature of their difficult

ideal for the student to see the skil steps immediately

behaviors, but the strengths and talents of the indi-

prior to the situation in which they need to use the

viduals with ASD and about examples of successful,

skil , this may not always be practical. Instead the

famous figures who may also have had an ASD.

parent, teacher, employer or student might review the

skil once in the morning prior to school or work, once

Generalization of peer kindness

at lunch and then again at the end of the day so that

the student at least has to think about the skil three

We ask peers to do three things to help their ASD

times per day.

classmates and each other: (1) include others who are

If a student has not ful y agreed to try a new skil

left out; (2) stand up for those who are teased; and

and thus is lacking in “internal” motivation to perform

(3) offer help to those who are upset. To help these

the skil , then a behavior chart can be used in which

kind behaviors generalize into the daily routines of

external rewards are contingent on demonstrating

the students, we might create a lunch buddy program,

certain targeted skil s.

where peers volunteer to eat and hang out with the

In order to practice the new skil s, students need

ASD student on a rotating schedule. We might also

opportunities. Facilitated opportunities involve

introduce a reward program to recognize and reward

creating daily situations in which the skil s can be

“kind” behaviors towards fel ow students. We may also

practiced and coached. Sometimes those opportunities

train peers in how to engage ASD students in play,

are natural y built into the day. For example, a student

including how to get their attention and what kinds

learning to deal with frustrating work may always have

of games to initiate (i.e., games the ASD student can

his or her share of chal enging work to do during the

play). Our experience and a growing body of research

day. Other times, the practice opportunities need to

suggests that including typical peers as targets for

be careful y planned or created. For example, a student

training can have profound effects on the development

who never initiates conversation with anyone may be

of social skil s and overal happiness of ASD students

asked to cal someone on the phone once a day or join

in school environments (Baker 2003; Wagner, 1998).

others for lunch and initiate conversation once during

that period.

After situations have occurred in which skil s were

needed, the student’s performance can be reviewed to

increase awareness of the skil . If a youngster is on a

reward chart, the reason why the student received the

138

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Baker, J. E. (2003). Social skil s training for students with Aspergers syndrome and related social communication disorders. Shawnee Mission, Kansas: Autism Aspergers Publishing Company.

Baker, J.E. (In press). Social skil s training for the transition from high school to adult life. Arlington, TX: Future Horizons, Inc.

Baker, J.E. (In press). Social skil picture book for teens and adults. Arlington, R

TX: Future Horizons, Inc.

Gray, C., Dutkiewicz, M., Fleck, C., Moore, L., Cain, S.L., Lindrup, A.,

Broek, E., Gray, J., & Gray, B. (Eds.). (1993). The social story book.

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Grodon, J., & LeVasseur, P. (1995). Cognitive picture rehearsal: A system to teach self-control. In K. A. Quil (Ed.), Teaching children with autism (pp.287-306) Albany, NY: Delmar Publishing.

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Gutstein, S. E. & Sheely, R. K. (2002). Relationship development intervention with children, adolescents and adults: Social and emotional development R

activities for asperger syndrome, autism, PDD, and NLD. London: Jessica Kingsley Publishers Ltd.

Koegel, R. L., & Koegel, L.K. (Eds.) (2005). Pivotal response treatments for E

autism: Communication, social, and academic development. Brookes Publishing Co., Inc.

Lovaas, O.I. (2003) Teaching Individuals with Developmental Delays: Basic N

Intervention Techniques. PRO-ED, Inc., Austin, Texas

Sundberg, M.L. and Partington, J. W. (1998). Teaching language to children with autism or other developmental disabilities. Behavioral Analysts, Inc.

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ES

139

Learning styles and autism

Contributing Author Stephen M. Edelson, Ph.D., Experimental Psychology—Dr. Edelson has worked in the field of autism for 25 years. He is the Director of the Center for the Study of Autism in Salem, Oregon, which is affiliated with the Autism Research Institute in San Diego, CA. He is also on the Board of Directors of the Oregon chapter of the Autism Society of America and is on the Society’s Professional Advisory Board.

Resources and links—Stephen M. Edelson, Ph.D. suggests visiting his Autism Today website to learn about his other products and services. Visit: <http://edelson.autismtoday.com> today! (*Please note, don’t put in the www.) Dr. Edelson’s main autism website is < www.autism.org>.

“Learning styles” refers to the ways people gain in- may be associated with one’s occupation. For example, formation about their environments. People can

those individuals who are kinesthetic learners may

learn through seeing (visual y), hearing (auditorily),

tend to have occupations involving their hands, such

and/or through touching or manipulating an object

as shelf stockers, mechanics, surgeons or sculptors.

(kinesthetical y or “hands-on” learning). For example,

Visual learners may tend to have occupations which

looking at a picture book or reading a textbook in-

involve processing visual information, such as data

volves learning through vision; listening to a lecture

processors, artists, architects or manufacturing part

live or on tape involves learning through hearing; and

sorters. Moreover, auditory learners may tend to have

pressing buttons to determine how to operate a VCR

jobs which involve processing auditory information,

involves learning kinesthetical y.

such as sales people, judges, musicians, 911 operators

General y, most people learn using two to three

and waiters/waitresses.

learning styles. Interestingly, people can assess their

Based on my experiences and those of my

own interests and lifestyle to determine the ways in

col eagues, it appears that autistic individuals are

which they obtain much of their information about

more likely to rely on only one style of learning. By

their environment. In my case, when I read a book

observing the person, one may be able to determine

I can easily understand the text. In contrast, it is

his/her primary style of learning. For example, if an

difficult for me to listen to an audiotape recording of

autistic child enjoys looking at books (e.g., picture

that book—I just cannot fol ow the story line. Thus,

books), watching television (with or without sound),

I am a strong visual learner, and a moderate, possibly

and tends to look careful y at people and objects, then

poor, auditory learner. As far as kinesthetic learning, I

he/she may be a visual learner. If an autistic child

am very good at taking apart objects to learn how an

talks excessively, enjoys people talking to him/her and

object works, such as a vacuum cleaner or a computer.

prefers listening to the radio or music, then he/she

One’s learning style may affect how wel a person

may be an auditory learner. And if an autistic child is

performs in an educational setting, especial y from

constantly taking things apart, opening and closing

junior high on through col ege. Schools usual y require

drawers, and pushing buttons, this may indicate that

both auditory learning (i.e., listening to a teacher) and

the child is a kinesthetic or “hands-on” learner.

visual learning (i.e., reading a textbook). If a person

Once a person’s learning style is discovered, relying

is poor at one of these ways of learning, he/she wil

on this style to teach can greatly increase the likelihood

likely depend mostly on his/her strength (e.g., a visual

that the person wil learn. If one is not sure which

learner may study the textbook rather than rely on

learning style a child has or is teaching to a group with

the lecture content). Using this logic, if one is poor at

different learning styles, then the best way to teach

both visual and auditory learning, he/she may have

could be to use al three styles together. For example,

difficulty in school. Furthermore, one’s learning style

when teaching the concept “jel o,” one can display a

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Learning styles and autism — Stephen M. Edelson, Ph.D.

package and bowl of jel o (visual), describe its features

such as its color, texture, and use (auditory), and let

the person touch and taste it (kinesthetic).

A common problem of autistic children is that

they run around the classroom and do not listen to the

teacher. Such a child may not be an auditory learner—

and so is not attending to the teacher’s words. If the

child is a kinesthetic learner, the teacher may choose

to place his/her hands on the child’s shoulders and

then guide the student back to his/her chair, or go to

the chair and move it towards the student. If the child

learns visual y, the teacher may need to show the child

his/her chair or hand them a picture of the chair and

gesture for the child to sit down.

Teaching to the learning style of the student may

affect whether or not the child can attend to and pro-

cess information presented. This, in turn, can affect

the child’s performance in school as wel as his/her be-

havior. Therefore, it is important that educators assess

for learning style as soon as an autistic child enters the

school system and that they adapt their teaching styles

to the strengths of the student. This wil ensure that

the autistic child has the greatest chance for success in

school.

141

Idioms and metaphors and things that

go bump in their heads

(This section is expanded from Idioms and Metaphors and Things That Go Bump in Their Heads, original y published in the Autism/Asperger’s Digest, www.autismdigest.com , January–February 2005) Contributing Author Ellen Notbohm—Author, columnist and mother of sons with autism and ADHD, Ellen Notbohm is co-author with Veronica Zysk of 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders. A columnist for Autism Asperger’s Digest, her articles on autism have also appeared in Exceptional Parent, Children’s Voice, Language Magazine, numerous parenting magazines and over 100

websites.

Resources and links—Ellen Notbohm suggests visiting her Autism Today website to learn about her other products and services: Visit: < http://notbohm.autismtoday.com> today! (*Please note, don’t put in the www.) Your comments and requests for reprint permission are welcome at <ellen@thirdvariation.com>.

“If the English language made any sense, a

autism visualize when you say it’s raining cats and

catastrophe would be an apostrophe with fur.”

dogs. Heaven help you if he hears you tel ing someone

Doug Larson’s words are steeped in truth, of course.

it’s a dog-eat-dog world or not to throw the baby out

But a woeful truth it is for young children with lan-

with the bathwater.

guage deficits. The problems are more thorny than

You wouldn’t dream of knowingly issuing instruc-

furry.

tions to your child in a foreign language, but English

Vernacular English as we speak it is nuanced to

can seem that way, even to the unchal enged neuro-

the eyebal s (there’s one right there), and if you were

typicals. A popular Internet essay notes: “Why do we

to stop yourself throughout your day every time you

drive on the parkway and park in the driveway? There

unthinkingly used an idiom, pun, metaphor, double

is no egg in eggplant, nor ham in hamburger; (there’s)

entendre or sarcastic remark, you would get very little

neither apple nor pine in pineapple. A guinea pig is

else done.

neither from Guinea nor is it a pig. If the plural of

For our children with autism, it must seem like

tooth is teeth, why isn’t the plural of booth beeth? One

an impenetrable swamp. With their concrete, visual

goose, two geese. So one moose, two meese? If teachers

thinking, their often bril iant associative abilities and

taught, why didn’t preachers praught? We have noses

their limited vocabularies, the imagery generated by

that run and feet that smel . How can a slim chance

some of our most common idioms must be very dis-

and a fat chance be the same, while a wise man and a

turbing. Ants in his pants? Butterflies in her stomach?

wise guy are opposites?”

Open a can of worms. Cat got your tongue?

When Bryce was quite young, his ultra-literal,

Actual y, that very imagery they conjure up is at

concrete thought processes were constantly tripping

the root of some of our everyday expressions. When

me up. One day I went into the boys’ bathroom

you tel him it’s pouring cats and dogs, what you real y

and discovered, in the sink, my older son Connor’s

mean is that it’s raining very hard. One interpretation

Michael Jordan action figure with a tub of Danish

of the origin of this idiom—and there are many—goes

Orchards Seedless Raspberry Preserves dumped on

back several hundred years to the English floods of the

top. I was truly mystified. What is this? I asked Bryce.

17th and 18th centuries. After these torrential down-

Space Jam, he replied, having just seen the movie.

pours, the streets would be littered with the bodies of

I watched the crimson stain spreading across the sink

cats and dogs that had drowned in the storm. It looked

and oozing down the drain. I truly did not know what

as if they had rained from the skies.

the proper response should be. So I did the sensible

And I am sure this is what a lot of young ones with

thing. I nodded and walked away.

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Idioms and Metaphors — Ellen Notbohm

The bathroom was in fact the source of more than

And even when you become aware of the morass

one run-in with the English language. One memorable

of language obstacles your young one faces, you wil

afternoon I was helping Connor pack for a weekend

fal off the wagon occasional y. (See?) When Bryce was

trip, gathering up toothpaste, shampoo and soap.

about seven, we experienced what I came to cal “The

Where is your toiletries bag? I cal ed across the loft.

Terrible Weary Battle of the Hangnail.” It was one

WHAT??! gasped Bryce.

of those infamous incidents that escalate inexorably

I’m looking for the blue bag where Connor keeps

from nothing to warfare before you realize what’s

his toiletries, I explained.

happening. And you are left with an episode for which

TOILET TREES?! HE’S TAKING TOILET

you can be forever un-proud.

TREES ON HIS TRIP???! !

He came to me with a tiny hangnail on the index

Bryce’s jousting with the English language grew

finger. The offending finger was being held immobile

more sophisticated as he learned to read. At one point

by the opposite hand. No big deal, I said, I’l just

he went through a phase where he would become very

nip it off with the nail clippers. Nooooooooooo! He

agitated by the sight of phone booths: “Oh no! Not

shrieked, gale force. It wil HURT!

another one of those!” I eventual y found out why—he

This child had spent his whole life being impervi-

had recently mastered the fact that “ph” makes an “f”

ous to true pain and extreme cold. But for reasons I

sound, and he found it frankly annoyingly. (Or did he

simply could not imagine, this hangnail was an an-

phind that phact phrankly annoying?) Seeing “phone”

tagonist of Goliath proportions.

al around ticked him off. Speaking of which—why

First, the usual rebuttals. It won’t hurt. I promise.

isn’t ‘phonics’ spel ed the way it sounds?

I’l be very quick. Look the other way. No? Then: OK,

The bottom line is, communicating with a child

you can do it yourself. No clippers? Just bite it off. No.

with autism is astonishingly easier when we pause to

We’l numb it with an ice pack first. No. We’l soften it

consider our words. It may take a bit of retraining—

up with a warm bath. No.

yours, not his. Reconsider these popular idioms and

Out came plans B, C, D, E, F and G, like

clichés:

some horrid Cat in the Hat variation. Al rejected.

Don’t say

Instead say

It’s a piece of cake

It is easy to do

Hold your horses!

Please stop (or slow down)

You are the apple of my eye

I love you very much

You have ants in your pants

It’s hard for you to sit quietly

I’m at the end of my rope

I’m about to get angry

Stop beating around the bush

Please answer my question

Bite your tongue!

Please don’t speak to me like that

You’re like a bull in a china shop!

You are being too rough

I have butterflies in my stomach

I’m nervous/anxious about this

The ball is in your court

It’s your turn

Let’s call it a day

It’s time to stop for now

He can’t hold a candle to you at chess

You are better at chess than him

Cat got your tongue?

Is there a reason you can’t answer me?

I smell a rat

This doesn’t seem right to me

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The Official Autism 101 Manual

Exasperation on both sides escalated sharply.

him two things. First, he had to trust me. If I tel him

The evening wore on. Was that me, almost

something wil not hurt, I mean it. I would always be

shouting? I knew I was losing it, being sucked in,

honest with him if something was going to hurt, like a

sucked down, seemingly unable to break the fal . Now

shot. I respected his preference for the truth, however

two people were miserable instead of one.

unpleasant. So when I told him it wasn’t going to hurt,

Look, I said. Here are the choices: I nip it off. You

it wasn’t going to hurt.

nip it off. Or you just live with it.

Just as important, I told him I real y admired

Nooooooooooo! Scarlet face, tears flying, hair

his tenacity. I explained that “tenacity” meant that

matted with sweat.

he real y stood by what he believed, didn’t back

Bedtime final y came, and with it, a mom with

down, resisted pressure. That took strength and

the determination of Houdini. As I bent to tuck him

determination. “You real y stuck to your guns,” I said,

in, so stealthily palming the nail clipper, I grabbed his

“and that can be a very good thing.” The words hadn’t

finger and the hangnail was history. The pure surprise

even cleared my lips before I knew I had goofed. A

on his face was unforgettable. There, I said. Did it

dark cloud instantly eclipsed a troubled face.

hurt?

“I don’t want to stick to a gun!” he cried, truly

No.

alarmed.

The next morning I took him on my lap and told

And then: “Are you sure you didn’t mean . . . gum?”

Common idioms

Our conversation is rife with potentially incomprehensible idioms. How many of these automatically make their way into your speech: catch more flies with honey, bird in the hand, chicken feed, clam up, cold turkey, cook your goose, cry wolf, count your chickens before they hatch, look a gift horse in the mouth, eat crow, fat cat, for the birds, get your goat, high horse, in the doghouse, kill two birds with one stone, let the cat out of the bag, mad as a wet hen, monkey business, pull a rabbit out of a hat, rat race, sick as a dog, get your ducks in a row, snake in the grass, from the horse’s mouth, straw that broke the camel’s back, wild goose chase, teach an old dog new tricks.

And that’s just the animal idioms. How about food idioms? It’s cheesy. But that’s the way the cookie crumbles. We all know you can’t have your cake and eat it too.

Body idioms? Might cost an arm and a leg! But if you learn it by heart, you’ll become an old hand, and be able to keep it under your thumb at all times.

Sports idioms, anyone? Hit it out of the park! The ball is in your court now, so if you jockey into position, you’ll be able to call all the shots.

It’s enough to drive your child up the wall.

144

Chapter 14: Adolescents with autism and

Asperger’s Syndrome

Adolescents with autism

and Asperger’s Syndrome

CHAPTER 14

145

Preparing for the essential tasks of the real world

Contributing Author Teresa Bolick, Ph.D., Licensed Psychologist—Dr. Teresa Bolick is a licensed psychologist with a special interest in neurodevelopmental disorders, including autism, Asperger’s Syndrome, and other autism spectrum disorders. Dr. Bolick graduated from the University of North Carolina at Chapel Hill with a B.A. in Psychology. She holds M.A. and Ph.D. degrees in psychology from Emory University. Dr. Bolick provides evaluation and treatment to children, adolescents and their families. She consults frequently to schools in New Hampshire and Massachusetts. She is an enthusiastic speaker, presenting workshops for parents, paraprofessionals and professionals across the United States. Dr. Bolick is the author of Asperger Syndrome and adolescence: Helping preteens and teens get ready for the real world, and Asperger Syndrome and young children: Building skills for the real world.

Resources and links—Teresa Bolick, Ph.D. suggests visiting her Autism Today website to learn about her other products and services: Visit <http://bolick.autismtoday.com> today! (*Please note, don’t put in the www.) What’s so special about adolescence?

“The period of life beginning with puberty and ending with complete growth and physical maturation”

—Stedman’s Medical Dictionary, 1995

Bookstores and libraries are ful of books that try to

• Adolescent brains are undergoing remarkable

help parents and professionals understand adoles-

growth and change. These changes prepare the

cence. Almost every newspaper or magazine includes a

adolescent for the increasingly abstract and

story about yet another chal enge that confronts ado-

complex demands of the adult world. During

lescents in the twenty-first century. Why is it that so

this time, even the most typical of adolescents

many of us look to the experts for advice in negotiat-

may process information in unique, often

ing this phase of our youngsters’ lives when this is the

perplexing ways.

time of life that we remember best? Perhaps it is the

complexity of physical, social, and emotional develop-

Is it any wonder, then, that parents and

ment. Perhaps it is our own memories of “the best and

professionals are even more confused by the thoughts,

worst of times.” Perhaps it is the signal that our chil-

feelings and behavior of adolescents with autism

dren wil be adults before we know it. And, although

spectrum disorders? This chapter aims to shed light on

the books and experts may differ in their conclusions

some of the confusion. By no means, though, can one

and advice, they share at least two conclusions about

chapter answer al the questions. Instead, the goal is

adolescence in general:

to provide food for thought and to point parents and

• Adults need to be sharp to understand what’s

professionals in the direction of additional answers.

going on. No two adolescents are the same,

(You wil find references at the end of this chapter. My

and there is no one-size-fits-all strategy for

own ideas are expressed in greater detail in my book,

parenting or teaching.

Asperger Syndrome and adolescence: Helping preteens and

teens get ready for the real world. )

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Preparing for the essential tasks of the real world — Teresa Bolick, Ph.D.

Adolescence meets

A real-life example: Thirteen-year-old Marc

autism spectrum disorders (ASD)

attended a school that placed a high premium on

The advantages of ASD during adolescence

personal and community responsibility. When several

of the boys in his grade became involved in a scheme

Although we don’t often think of it, adolescents with

to sel their parents’ prescription drugs, most of their

ASD often bring with them a host of characteristics

friends looked the other way. They didn’t want to risk

that can protect them from some of the social/

being cal ed a “snitch” (or worse). Marc heard about

emotional conflict and chaos of adolescence. These

the scheme and quickly realized that it violated many

characteristics can also spare parents a few headaches,

school and community rules. He immediately went to

as they limit exposure to the more reckless aspects of

the school principal and gave names and details of the

adolescent life. They include:

scheme. Marc’s parents and teachers praised him for

• Belief in, and need for, rules, which allows

averting what could have been disastrous for the entire

the adolescent to behave well, at least as long as

school community.

he/she knows the rules—more about this later.

• A preference for telling the truth, which

The disadvantages of ASD during adolescence

virtually ensures that the adolescent with ASD

While many of the characteristics of ASD make it

will confess any transgression.

easier for the adolescent to fol ow rules and persist in

problem solving, each of these characteristics can also

• Black and white thinking, which makes it less

have its drawbacks. Black and white thinking may

likely that the adolescent will try to look for the

keep a student on the right side of the school rules

loopholes in the rules or directions that adults

but doesn’t help much in the world of adolescent

have given.

friendships. Similarly, persistence in pursuing special

• Reduced concern for what others think and

interests can get in the way of completing schoolwork

popularity, which can decrease susceptibility to

in other subjects.

negative peer pressure and fads.

In addition, adolescents with ASD typical y

• Ability to focus on things that matter,

struggle with one or more of the fol owing concerns:

especially one’s passions and preoccupations,

• Poor regulation of the Four A’s (Alertness/

which can lead to productivity and discovery.

Arousal, Attention, Activity, Affect), which

• Special talents and interests, which can be

can lead the adolescent to break many of

sources of new ideas and ways to connect with

the rules that he/she holds most dear. For

others, and which can support strategies for

example, when surrounded by lots of people,

coping.

Sally becomes so “revved” that she can’t pay

attention to the person who is talking with

When he or she studies, lives or works with people

her. She also begins to rock back and forth

who understand his/her strengths and chal enges, the

(activity) to help settle down her nervous

adolescent with ASD can be an active and exemplary

system (alertness or arousal). If she has to stay

participant. The strategies that the adolescent uses

in the situation, she’s likely to feel increasingly

to reduce unpredictability and anxiety also tend

overwhelmed and to display emotion (affect) in

to prevent the risky behaviors that tempt typical

ways that are not suitable for the situation.

peers. And, when engaged in a pursuit that interests

• Clumsiness, which can lead the adolescent

them, adolescents with ASD are among the most

with ASD to stand too close to others, to

conscientious and productive of workers. As Temple

display awkward body language and to have

Grandin has often commented, people with ASD get

trouble negotiating the crowded hallways of

more done because “the rest of you just stand around

school or malls. And in a culture that places

chatting al the time.”

extraordinary value upon athletic skills, the

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The Official Autism 101 Manual

adolescent with poor motor skills may not

person’s reaction or preferences. Without

know how to fit in.

adequate Theory of Mind, the adolescent is

• Difficulties in seeing the forest for the trees,

unable to behave empathically or respectfully.

which can pose the risk that the adolescent will

• Challenges in problem solving, which are

get stuck on details and miss the big picture. It’s

common, even for the most intellectually gifted

not at all unusual for a very bright adolescent

individual with ASD. Many of these difficulties

with Asperger’s Syndrome, for example, to

are associated with limited ability to identify

recite every detail in a movie without knowing

what is salient (or important) in a situation.

what the movie is about. And, since social

Without efficient salience determination, the

interaction is so often a matter of big picture,

adolescent is unlikely to know what to look or

they are likely to engage in “socially penalizing

listen for and, unfortunately, to fail to filter out

behaviour,” a term coined by Elsa Abele, an

irrelevant thoughts or actions. Another obstacle

expert in social communication.

to problem solving is poor generalization.

• Inefficiencies in social communication,

Often, the adolescent with ASD does not see

which are probably universal for adolescents

the similarity between the current task and

with ASD. These inefficiencies can range from

previous situations. Instead of applying the

severe challenges in oral expression to milder

skills that worked so well last time, he or she

difficulties in understanding the subtleties of

starts over from the beginning.

adolescent humor and slang. Regardless of the

• Inexperience in social situations, which

severity, these inefficiencies make it difficult

is a frequent contributor to the everyday

for the adolescent with ASD to know what

functioning of the adolescent with ASD.

other people mean. They can miss the point

While everyone else learned “playground

in academic lessons (and study the wrong

politics” (Stanley Greenspan’s term) in the

things) or fail to heed the indirect directions

sandbox at preschool, the child with an ASD

and warnings of peers and adults (for example,

had too many motor or sensory challenges

“Don’t you think your sister would like a turn

to tolerate the playground. While peers had

on the computer?”). Inefficiencies in social

play dates and sleepovers, the child with

communication are likely to affect every aspect

ASD still communicated too inefficiently for

of daily life.

parents to trust him/her with another family.

• Problems in perspective-taking (Theory

Hanging out at the mall, going to the movies

of Mind), which tend to go hand in hand

or sitting around gossiping are seldom on

with inefficient social communication.

the list of favorite activities for children with

How can we make inferences about another

ASD. Hence, the individual with ASD enters

person’s feelings unless we can read verbal and

adolescence without the information necessary

nonverbal communication? And how can we

to manage a growing body, a questioning mind

adjust our own behavior to create a desired

and ever-changing emotions.

impression unless we know something about

A real-life example:

what the other person likes, dislikes, feels and

For the first time in her

thinks? Over and over again, I am dismayed by

life, 17-year-old Anne had some friends. Girls in

how difficult it is for bright adolescents with

the art club recognized Anne’s drawing talents and

Asperger’s Syndrome and autism to answer

were receptive to her lengthy descriptions of animé

the question, “What is (person’s name) like?”

characters (her special interest). Over a weekend,

Even when the adolescent can describe the

Anne’s parents told her that she had earned the

person’s physical characteristics, possessions

privilege of going to the animé convention in a nearby

and behavior, he/she is unable to predict the

city. Eager to tel this exciting news to her friends,

148

Preparing for the essential tasks of the real world — Teresa Bolick, Ph.D.

Anne went to school on Monday morning and spied

strategies are frequently inefficient or inappropriate to

her friends at the end of the hal . Two girls were

the situation.

huddled around a third girl, who was obviously upset,

Many individuals with ASD must deal with

according to an observant teacher. Anne was so intent

extremely high stress levels. The accumulation of

upon her desire to share her news that she total y

sensory assaults, language and social demands, and

missed the big picture that a friend was in distress.

flexibility requirements taxes the person’s capacity to

When she bounded up to the girls and shouted out

manage. At a certain point, an apparently smal thing

her exciting news, the other three looked at her with

can lead to a meltdown. Observers often wonder why

disdain. Why didn’t she know that a friend was upset?

the person with ASD is over-reacting to something

so trivial. It’s important to realize that the individual

is not reacting to that last event but, more likely, the

Six essential tasks and

event is the straw that broke the camel’s back.

how to master them

Partnership—a necessary first step

A real-life example: Rick is a 14-year-old in

Remember that the one of the tasks of adolescence is

Grade 8. Although his non-verbal problem-solving

to learn to be as independent as possible. Doesn’t it

skil s are quite impressive, his language skil s are

make sense, then, that the adolescent with an ASD

similar to those of a child in Grade 1. Rick converses

should be a working partner in the process?

wel one-on-one with people who know how to adjust

The first step in any intervention program is

their language to his skil s. But when another person

to ensure that you and your working partner (the

enters the conversation or when the language level

adolescent) have a mutual understanding of the goals

gets too complicated. Rick gets anxious and begins to

and how to try to reach them.

quote Disney videos. The benefit of Rick’s “scripting”

is that it takes him away from an anxiety-provoking

Task 1: Adaptive self-management of

situation. A disadvantage is that he is unavailable for

thoughts, feelings and behavior

appropriate interaction with other people. Rick also

Adaptive self-management refers to a person’s ability

gets stuck in his scripting and is unable to understand

to regulate alertness, attention, activity and affect

and fol ow the directions of his parents and teachers.

(emotion) efficiently enough to support active

If adults insist on compliance, Rick is likely to yel out

participation in everyday life. As suggested above, poor

“NO! You can’t make me!” and run from the room. In

self-regulation is one of the most common chal enges

other words, Rick’s stress levels are so high they have

faced by individuals with ASD. Adults with ASD,

prompted a fight or flight response.

such as Temple Grandin, confirm that chal enges

Of course, it’s impossible to eliminate al of the

in self-regulation are among significant obstacles to

stress in life. And occasional y everyone has trouble

success in the world of work. As she stated matter-

coping with the last straw. The key to self-management

of-factly in one presentation, “If you throw your

is to reduce stress and strain before it reaches

computer monitor out the window when you’re mad,

unmanageable levels. This is accomplished by two

you’l get fired.” Others, such as Stephen Shore and

types of interventions: modifications of environment

Jerry Newport, explain that self-regulatory chal enges

and routine, and preventive stress management. Over

(especial y sensory sensitivities) can have a dramatic

the course of adolescence, it’s important to shift more

effect upon dating and relationships.

and more of the responsibility for these interventions

There is no doubt that adolescents with ASD try

to the person with ASD. It is this shift that al ows the

hard to manage their sensations, thoughts and feelings.

adolescent or young adult to function with maximum

Their repetitive behaviors, need for routine, and single-

independence.

minded focus on preferred topics are examples of

these efforts. The problem is that their self-regulatory

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The Official Autism 101 Manual

Modifications of environment

Direct teaching of stress management

and routines

• Teach the adolescent to monitor physical and

• Create spaces that support the adolescent’s

emotional signs of stress. The Alert Program

sensory needs. For example, a student with

(also known as “How does your engine run?”)

hypersensitive hearing is likely to need a quiet

by Williams and Shellenberger can teach

home base or retreat space at school and at

individuals how to recognize their level of

home, for study or for regrouping.

alertness/arousal and choose suitable remedies

to perk up or settle down their nervous systems.

• Carefully consider the sensory load

associated with places like the school bus

• Experiment with relaxation strategies that fit

or cafeteria. The convenience associated with

the adolescent’s learning profile. For example,

bus transportation or a hot lunch might not be

Cautela’s book on relaxation techniques is

worth the costs of sensory overload or exposure

particularly helpful for adolescents with

to teasing.

cognitive challenges. On the other hand, an

adolescent with better verbal skills might enjoy

• Allow access to music, snacks and other

meditation or autogenic relaxation training (See

sensory tools that enhance concentration

the reference by Goldbeck and Schmid, 2003.).

and reduce stress. It may actually help to listen

For students with adequate imitation skills,

to music while doing homework or to eat a

yoga can be extraordinarily helpful. A helpful

crunchy snack before a class that requires a lot

hint: adolescents are more likely to accept these

of listening.

strategies if they are presented to an entire class!

• Experiment with clothing and hygiene

• Develop a regular exercise routine,

routines that reduce irritation but do not

adapted to the student’s sensory and motor

create socially penalizing situations. One

profile. Adolescents with ASD are often

adolescent girl was constantly adjusting her

more comfortable with non-ball sports and

bra, drawing stares from other people. At

with exercise that does not require special

the suggestion of her counselor, the girl and

(uncomfortable) clothing or equipment.

her mother went to a department store with

Running, swimming, skiing, weight training

experienced saleswomen. Although the girl

(for those older than 14) and martial arts

detested the hour or so of bra fittings, the

(with a sensitive teacher) are examples of

result was the discovery of a style that fit

exercise regimens that have been successful for

comfortably. After several washings, the bras

individuals with ASD. Remember, research

were comfortable and the adjustments ceased.

has demonstrated that exercise is superior

A young man was hypersensitive to the feel of

to medication and other therapies as an

a toothbrush in his mouth. His occupational

antidepressant!

therapist suggested that he brush his teeth while

in the shower. Voila! Problem solved! (By the

• Consider involvement in the arts, as a

way, the same young man later discovered that

participant or as a spectator. Music, visual

he could shave in the shower with similarly

arts and drama have multiple payoffs. From

positive results.)

a regulatory status, they can be remarkably

efficient. They have the added benefit of

• Make sure that the adolescent has a sleep

exposing the adolescent to other people who

routine. This includes falling asleep at a

tend to be more accepting of diversity.

reasonable time and awakening at the time

needed to get ready for school or work. Consult

• Help the adolescent learn to use special

a physician if this is not possible.

talents and interests as stress management

strategies. For example, an adolescent who

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Preparing for the essential tasks of the real world — Teresa Bolick, Ph.D.

likes to make clay figures might add a half-hour

• Continuation of social interaction: reciprocity

of sculpting time to his morning or evening

or two-way communication.

routine.

• Desire for “space” or to be left alone.

• If special interests are not developmentally

• Request for information or clarification.

or socially appropriate, use them as starting

points. For example, one middle schooler was

• Comments upon the words or actions of others.

obsessed with PokeMon long after his peers

• Communicative repair: for example, “Oh, I

had moved on to other card and electronic

didn’t mean that I wanted you to go away. I just

games. His school counselor countered the

meant that I need to think a minute.”

boy’s resistance to the other games by setting up

• Negotiation.

an incentive system: for every half-hour spent

playing a game of his peer’s choice, he earned

• Conflict resolution.

a half-hour of playing PokeMon with the

counselor.

While most of us assume that these skil s can be

problematic for adolescents with greater communica-

The benefits of music: When I extol ed the self-

tive chal enges, we may not realize that those with

regulatory virtues of music during one workshop, an

Asperger’s Syndrome or PDD-NOS typical y need just

occupational therapist provided additional information

a much help (though perhaps in a different way).

about why playing an instrument (especial y a horn)

is so efficient. Not only does playing require the

A real-life example: After several weeks of

individual to breathe in a control ed way but it also

successful employment in a used book store, 19-year-

requires the musician to use hands together at the

old Sam suddenly stopped going to work. He wasn’t

midline of the body, an action that we know to be

il . He was just too overwhelmed to go. After a lengthy

organizing for the nervous system.

discussion in my office, the problem surfaced. Sam’s

boss had given him a “punch list” of things to do when

there were no customers in the store. When he got to

Task 2: Functional and portable

the task of “straighten the books on the shelf,” Sam

communication

didn’t know what was meant. “You can’t straighten

Functional and portable communication means

used paperbacks. They’re too floppy,” Sam thought.

that the individual is able to convey needs, desires,

Sam’s confusion made him anxious and his anxiety

thoughts and feelings to anyone anywhere. Al too

made him flee. Once he left, he was too embarrassed

often, we hear parents or professionals say, “But I

to cal his boss. The bottom line: Sam hadn’t mastered

know what he means.” That’s terrific, but it doesn’t

the communicative skil of seeking clarification. No

do much good if you’re not with the individual with

one had thought to teach him.

ASD. While the type of communication is going to

By adolescence, individual therapy only within the

vary with the individual (whether it is speech, gestures

office of the speech/language pathologist (SLP) is often

or augmentative systems), everyone needs to be able to

insufficient. Some of the most effective intervention I

convey the fol owing communicative intents:

have observed occurred when the SLP observed in the

real-life setting, practiced the requisite skil with the

• Joint attention: the ability to share a mutual

adolescent one-on-one or in a smal group, and then

focus with another person, whether non-

assisted the adolescent in generalizing the skil back to

verbally or verbally.

the real-world setting. It’s also essential to work first on

• Desire or need for an item or activity.

skil s that are critical and/or meaningful for the adoles-

• Dislike for an item or activity.

cent’s success. Of equal importance is the recognition

that communication training is not just the task of the

• Initiation of social attention or interaction.

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SLP. Communication needs to happen throughout our

understand what you mean. Visual supports

waking hours, on good days and on bad.

can help the student with working memory

“Smal group conversations make my nerves feel

challenges to remember important information

like they are wearing stilts on an icy pavement.”(Liane

or steps in a process.

Hol iday Wil ey, 1999, p. 37.) I use Dr. Wil ey’s quote

• Coach peers regarding the communication

as a way of reminding us that communication puts the

strengths and challenges of the adolescent

person with ASD in a precarious situation. In order

with ASD.

to help, we have to approach from two directions:

first, by using modifications and accommodations

to “dry up the pavement”; second, by teaching the

Direct teaching of skills

communicative equivalent of “walking on stilts.”

• Always start with the skills that the

adolescent needs or wants most. For example,

Modifications and accommodations

16-year-old Melanie had absolutely no interest

(a partial list)

in working on social communication until she

noticed that the other girls on the track team

• Talk with your working partner, the

passed the time between events by chatting. She

adolescent, about what to tell others about

came to the next session asking for help with

his/her communication. Then help the

learning conversation starters. Al of a sudden,

adolescent convey these tips to teachers, coaches

she was quite motivated to work on social

and peers. (The tips listed below emerged from

communication.

conversations I’ve had with adolescents I know.)

• Teach skills within a meaningful context,

• Always give ample processing time. Don’t ask

whenever possible. Alex’s team wanted him to

rapid-fire questions. Don’t talk louder. Don’t

learn social y appropriate mealtime manners and

answer for him/her. And don’t let him/her off

conversation. Yet his sensory sensitivities were

the communicative hook.

such that he couldn’t tolerate the lunchroom,

• Respect the adolescent’s ability to

and he ate lunch in the classroom with his

communicate. Don’t look to the adolescent’s

assistant. Alex had very little to say until

parent or assistant for an answer unless the

the team decided to bring in peers during

adolescence cues you to do so. And if you’re

lunchtime. Al of a sudden, Alex was intrigued

the parent or assistant, don’t answer for the

with social interaction. And the peers let him

adolescent unless he/she requests.

know when he “grossed them out” by chewing

with his mouth open or belching loudly. They

• Seek clarification when you don’t

were much more successful in modifying Alex’s

understand. Don’t just provide the “backfill”

mealtime behavior than the adults had been.

that allows you to understand what the

adolescent means. Other people may not be

• When necessary, teach scripts for specific

able to fill in the gaps as efficiently.

social situations. Many of the adolescents I

know fol ow Temple Grandin’s suggestion of

• If the adolescent uses an augmentative

using “mental videos” to remember what to say

communication system, ensure that he/she

in certain situations.

always has it nearby. (This is the adolescent’s

voice.) Then encourage and reinforce the use of

• Be sure to teach slang, including when to use

the system, including by using it yourself.

it and when to avoid using it. In adolescence,

this also includes teaching when/when not to

• Use visual and verbal cues. Visual cues can

curse.

take many forms—photos, picture symbols,

lists or gestures. They help the adolescent

• Teach code switching. In other words, make

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Preparing for the essential tasks of the real world — Teresa Bolick, Ph.D.

sure that the adolescent knows which topics,

For many individuals with ASD, empathy and

words and tone of voice can be used in different

social awareness are learned in a logical or scripted

situations.

format. For example, the work of Simon Baron

• For students who learn well from videos,

Cohen (e.g., How to teach children with autism to

use favorite movies or TV shows (on tape) to

mind read) provides a series of pictures and formulas

illustrate target skills. Videos are particularly

that explain what makes a person feel a certain way.

helpful in teaching about non-verbal skil s, such

Parents sometimes say that they don’t want their son

as body language, facial expressions and personal

or daughter to merely behave in a considerate or

space. Don’t hesitate to videotape peer models

empathic way but also to feel empathy. I typical y

engaging in the communicative behaviors that

reply that I hope that the adolescent wil eventual y

you’d like the adolescent to acquire.

feel empathy, but in the meantime we need to make

sure that he or she acts empathical y and avoids social

• Refer to references by Freeman and Dake,

penalties

McAfee, Garcia Winner, and Gutstein for

lesson plans and more ideas.

Modifications and accommodations

Task 3: Social cognition/awareness (or

• Make sure that peers and adults understand

“Theory of Mind”)

that the adolescent’s social errors are

A real-life example: For what seemed like years,

likely to be a result of naiveté and social

Corey’s parents and team had been trying to teach

incompetence, not disrespect. Otherwise,

him to be empathic. But he just wasn’t able to step

the adolescent with ASD wil receive negative

out of his own shoes long enough to take another

disciplinary consequences that fol ow

person’s point of view. Then, in Grade 8, he came to

school policy but do little to teach adaptive

his therapy session saying that he thought I would be

replacement behaviors.

proud of him. He went on to describe a situation at

• Use the principles of applied behavior

his locker earlier that day. One of the top three girls

analysis and functional assessment to

in the eighth grade had been at her locker a few doors

understand when, where and with whom

down. When she bent over, Corey was able to see

the adolescent makes social and behavioral

down the neckline of her tank top. When asked what

errors. Functional assessment of behavior can

he did next, Corey said, “I turned and went into my

point us toward the supports that wil increase

classroom.” I asked why he had chosen that action.

the adolescent’s understanding of the situation

Corey said, “I didn’t think she would want to know

and the new behaviors that should be taught.

that I saw.”

• “Make the implicit explicit,” as my SLP

Understanding of the mental states of others

col eague Nancy Cegalis states. Be very clear

al ows us to fol ow directions, avoid hurt feelings and

about behavioral expectations and the social

other interpersonal scrapes, and form friendships and

and emotional consequences of the adolescent’s

close relationships. Difficulties with social awareness

actions and words. For example, after

and Theory of Mind also predispose the adolescent

overlooking the shril ear-splitting (but gleeful)

to sound rude and disrespectful to listeners who do

repetitive vocalizations of their 13-year-old

not understand ASD. Social awareness also underlies

daughter when she was il with al ergies, Suzy’s

the behavioral adjustments that we make from one

parents decided they needed to address this

situation to another and from one person to the

social y penalizing behavior once she felt better.

next. To parents, poorly developed social cognition/

They started with a social story that explained

awareness leads to the concern that their child wil

that loud shrieks hurt people’s ears and made

never develop empathy.

them unhappy. The social story ended with a

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The Official Autism 101 Manual

picture of a person gesturing “Sh-h-h.” Suzy

• Read books or watch movies with the

was then reinforced each time she responded

adolescent and talk about the emotions

positively to the reminder of “That hurts my

of the characters. Books or videos are often

ears. Sh-h-h.”

more helpful than verbal discussions because

they can be reviewed again and again to assist

understanding.

Direct teaching of the

“rules of the social road”

Task 4: Emotional competence

• Teach manners and social conventions.

Emotional competence refers to the ability to recog-

Even if the adolescent doesn’t understand the

nize, understand, express and modulate (or control)

reasons, make sure that he or she knows how

feelings. As discussed above, recognition and regula-

to behave in common situations. Social stories

tion of emotion is essential to behavior management.

are excellent ways to teach social conventions.

Al too often, adolescents with ASD don’t recognize

Videos are also quite helpful. Alex Packer’s

their emotions until they have already acted upon

book is a humorous guide to manners for all

them. Another significant chal enge for a number of

adolescents. Remember, though—no nagging!

adolescents with ASD is the emergence of anxiety and/

Adolescents with ASD are as immune to

or depression. Emotional competence rests upon pre-

nagging as their typical counterparts.

vention of anxiety and depression as wel as the recog-

nition and understanding of feelings in the moment.

• Talk about photos or magazine pictures

that illustrate mental states. Draw arrows

to the facial expressions, body language and

Modifications and accommodations

background details that give clues. Then

• Practice “low and slow.” As soon as the

speculate about the emotions and reasons for it.

adolescent begins to get agitated, we need

(Dr. McAfee provides a number of wonderful

to settle ourselves down. Lower the volume

suggestions about this in Navigating the social

and pitch of our voices. Slow down our rate

world. )

of speech. Allow plenty of processing time.

• Make a chart of “passions and peeves” for

Slow our breathing and actions. Loudness,

family members. Talk about what each person

finger-pointing and threats (such as “Do you

likes and dislikes. Record it on a giant poster

want a time out?!”) only increase the level of

board. Then talk about what a person could

the fight or flight response that the adolescent

do to please Mom when she’s had a frustrating

experiences.

business trip or what to avoid when Dad is

• Help the adolescent use adaptive self-

feeling stressed.

management strategies preventively. See the

• Teach discretion. For a more verbal adolescent,

section on Self-management for suggestions.

use a concentric circles chart (Some call this a

• Use visual schedules and sub-schedules to

Circle of Friends.) with the adolescent at the

ensure that the adolescence knows what to

center to illustrate which topics can be talked

expect. These may include pictures, words,

about at different levels of closeness. A less

and/or high tech (such as a PDA). The key

verbal adolescent may need a simpler format,

element is that of predictability.

such as a two-column chart with headings

“Private” and “Public.” Then use sticky notes or

• Predict glitches (or unexpected events).

pictures to document what can be said or done

Whenever you introduce a schedule of any

in private versus public contexts.

kind, remind the adolescent that something

unexpected may happen. Social stories can help

explain glitches.

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Preparing for the essential tasks of the real world — Teresa Bolick, Ph.D.

• Use social stories and other visual supports

• For the adolescent with intrusive or repetitive

to explain a situation and expected behavior

thoughts and actions (obsessions or compul-

in advance. Provide information regarding

sions), work with the team to complete a

what will happen, how other people are likely

functional assessment of the behavior before

to feel and act, and how the adolescent can act

trying to eliminate it. Repetitive thoughts and

in order to be most comfortable. For adoles-

actions often serve a self-soothing function.

cents with substantial regulatory challenges,

If we try to take these away without replacing

include a safe exit strategy, such as “If you get

them with an adaptive alternative, the ado-

overloaded by all the talking, you can go to

lescent is likely to develop a new troublesome

Uncle John’s study and play Game Boy.”

behavior. Once you know the function of the

• Consult the adolescent’s physician if anxiety,

behavior, you can work with the team to create

sadness, hopeless or repetitive thoughts and

a positive behavioral support plan.

behaviors interfere with daily functioning.

• Reinforce every instance of adaptive coping.

While medication is not a cure-all, it may take

For example, Ed had begun to make threatening

the edge off the emotions long enough for the

gestures and comments whenever his mother

adolescent to benefit from other interventions.

interrupted his activity with a direction to do

something different. Both of them were quite

Direct teaching of skills

shocked when he actual y hit her one day. Ed

then agreed that he needed to learn another

• Ensure that the adolescent has a repertoire of

strategy for coping with disappointment. We

remedies for settling down and perking up

agreed that turning around and walking away

his/her mind and body. See the section on Self-

was a good first step, although his parents

management for suggestions.

hoped that he could eventual y fol ow their

• Use a Feelings Chart to help the adolescent

directions immediately. In the first phase of

make connections between the physical signs

teaching coping, Ed’s parents noted on a point

of the emotion, the “name” of the emotion,

sheet each time he accepted a direction without

a possible reason for the feeling and an

threatening behavior (and gave him triple

adaptive remedy if needed. This may start with

points for complying immediately). They also

something like, “You’re frowning, grinding your

commented (after he had calmed down) about

teeth and yel ing. You look like you’re angry.”

times when he started to threaten but then

(For less verbal y skil ed individuals, present this

stopped himself. Within several weeks, Ed’s

in photo or picture form.) Avoid asking “why”

threatening behavior was eliminated.

questions, as these tend to be disorganizing.

• Help the adolescent use special interests and

Instead, for the more naïve adolescent, say

talents as coping mechanisms.

something like, “I wonder if you’re angry

because we ran out of chocolate ice cream.”

A real-life example: Bart had already learned that

For the more sophisticated adolescent, try,

his interest in music could help him connect with

“You’re mad because . . . .” and wait. Once the

peers in the band. The new peers helped him branch

adolescent knows a reason for the feeling, you

out in his musical tastes, trying types of music that

can move on to, “What can you do about it?” or

he had previously rejected. Soon Bart learned that he

“You feel angry. Do you want to . . . . or . . . ?”

could choose music according to the mood he needed

Keep the Feelings Chart and a menu of possible

to be in—cool jazz to settle himself down for study-

remedies handy for quick reference when a

ing or Canadian Brass to perk himself up when he was

similar situation arises again. See my book for

dragging. By the way, Bart also parlayed his encyclope-

more ideas.

dic musical knowledge into a part-time job as a DJ!

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The Official Autism 101 Manual

Task 5: “Showing what you know”

• Use task cards to improve independent

As a psychologist who evaluates children and

functioning. A task card is like a recipe in

adolescents with ASD, I often find that the individual

that it lists the necessary materials and then

is inefficient at demonstrating knowledge on demand.

the steps required for completing a task. Task

My own observations of the student or observations

cards can employ photos, pictures, words or a

by parents and professionals often suggest that the

combination. Once an adolescent can complete

adolescent can provide much more information when

a task with adult supports, gradual y withdraw

the idea “just comes” than when asked directly. But

the assistance until the student is entirely

the real world of work and relationships can seldom

independent. Keep a notebook of task cards.

wait for the solution to “just come.” This makes it

After several are mastered, simply list the task on

critical for us to ensure that the adolescent can access

the daily schedule and have the student find the

information and skil s on a bad day as wel as on a

necessary task card and materials.

good day, in an unfamiliar context as wel as in a

• Teach the adolescent how to find information.

familiar one.

Every adolescent should be able to seek

While the specific information or skil to be

information or assistance, whether in a book or

accessed is going to depend upon the adolescent’s

online, or from another person. Many teachers

cognitive and communicative abilities, there are several

use task cards to help the student remember

strategies that are helpful to everyone.

how to seek certain types of information.

• Use templates to help the adolescent express

Modifications, accommodations and

information. For a student who is struggling

direct teaching

with oral expression, sentence strips such as those

in the Picture Exchange Communication System

• Remember the Hanes underwear slogan of

(PECS) assist in the expression of complete

many years ago: “You can’t think right when

thoughts. For more verbal adolescents, use story

your underwear’s too tight.” Lesson to be

grammar templates (Who? Where? When? What

learned: our bodies and minds have to be wel

happened? How did everyone feel?) to remind

regulated for us to learn and problem solve.

them what information is necessary when tel ing

• Teach the adolescent how to follow a schedule

someone else about an event. Adolescents with

or list of activities. Ideal y, the adolescent

more advanced written expression skil s wil

should be able to make a transition from one

also benefit from the use of paragraph or essay

task or activity to another with a minimum of

templates to organize their work.

interfering behavior or redirection.

• Always identify the purpose of an activity

Task 6: Safety and life skills

or task. This wil al ow the adolescent to focus

Unfortunately, few adolescents with ASD are able to

more easily upon salient aspects and to ignore

generalize efficiently from skil s taught in books to

irrelevant aspects.

real-world situations. I like to use video modeling,

social stories, power cards and task cards to pre-teach

• Whenever possible, help the adolescent

rules and skil s and then to go with the adolescent into

activate prior knowledge about a topic

the real world for additional practice.

or skill. Individuals with autism often have

difficulty with generalization, largely because

A real-life example: Stan had two goals that he

they don’t automatical y recognize the similarity

wanted to achieve by his eighteenth birthday, only a

between a current situation and one that went

few months away. He wanted to register to vote and

before.

he wanted to order his own meal at our traditional

birthday lunch at the local house of pizza. For several

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Preparing for the essential tasks of the real world — Teresa Bolick, Ph.D.

years, Stan was too anxious to order. More recently,

Madeleine tried to explain it as her “learning style.”

his speech was stil unintel igible to “outsiders.” For

The professors were not sympathetic, though, and

several weeks before his birthday, Stan used the menu

Madeleine fel further and further behind. Final y,

to read aloud his selection. He then practiced in front

Madeleine went to the learning support center with

of his mother and in front of me. We role-played

her high school IEP, revealed that she has Asperger’s

what he could do when the restaurant worker didn’t

Syndrome and enlisted the assistance of an advisor

understand him. He decided to do a quick relaxation

there. The advisor helped Madeleine explain AS to the

exercise before going into the restaurant. We agreed

professors and their attitudes became more supportive.

that writing down his order could be his last resort.

Ultimately, disclosure and self-advocacy are tools to

After pre-teaching and practice, Stan successful y

secure supports necessary for success in the real world.

ordered. Later that day, he also secured his voter

Early in adolescence, parents and other adults are

registration card!

likely to take the lead in advocating for these supports.

Teaching safety and life skil s to adolescents with

Ideal y, over the course of adolescence, the individual

ASD is just like teaching anything else: we have to

with ASD becomes more skil ed in asking for what he

identify the steps, teach each step systematical y with

or she needs. This process is described quite eloquently

visual supports, use task analysis to problem-solve

in essays written by individuals with ASD and

when there are glitches and plan for generalization.

published in books edited by Dawn Prince-Hughes

There are a number of tools on the market that can

(2002) and Stephen Shore (2004).

save you the effort of reinventing the wheel, including

Wrobel’s 2003 book on hygiene and personal care.

Employment

Jerry and Mary Newport’s book on sexuality also

Employment success for individuals with ASD varies

provides a number of helpful lessons regarding safety

widely, but al too many are under-employed or

in dating and relationships. The most important point

unemployed. Fortunately, there are some excel ent

is that safety and life skil s must be taught directly,

resources about career development and employment.

even to the most gifted of adolescents with ASD.

Please refer to books by Meyer (2001) and Grandin

& Duffy (2004) for suggestions. But, remember,

A few other important issues

employment success is likely to rest more upon

adequate self-management and communication skil s

Disclosure and self-advocacy

than upon technical skil s or information.

The decisions about what, when and whom to tel

about ASD are ultimately left to the adolescent and

Supported living

his/her family. Individuals who are more severely

Certainly we al hope that our adolescents wil mature

affected by autism usual y face fewer questions about

into adults who can live independently. When this

disclosure, because their chal enges are more visible.

is not the case, states and provinces have a variety of

Adolescents with Asperger’s Syndrome or PDD-NOS

programs to assist adults with living as independently

often face a more difficult choice, however.

as possible. What isn’t so wel known, though, is that

these programs are often overwhelmed with referrals.

A real-life example: Madeleine had an Individual

Don’t wait until your son or daughter is an adult to

Education Plan (IEP) throughout school. When

look into this. Talk with your local developmental

she went to art school for col ege, she insisted that

disabilities agency early in adolescence. It’s better to

she wanted to try it on her own. Madeleine did not

have a spot and not need it than the other way around.

register with the col ege learning support center nor

did she admit to professors that she had Asperger’s

Medication

Syndrome. Madeleine managed quite admirably with

It is commonly accepted that there is no medication

most of her coursework. Two art professors became

for autism per se. It is also accepted that medications

quite impatient with her slow pace, however. At first,

are often helpful for some of the troubling aspects

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The Official Autism 101 Manual

of ASD. In adolescence, medications are used most

frequently to address anxiety, depression, repetitive

behaviors and poor impulse control. Discussion of the

use of medication is beyond my expertise. Please refer

to books by Tsai (2002) and Volkmar and Wiesner

(2004) for comprehensive information.

Psychotherapy and other supports

Many adolescents with ASD are not able to

take advantage of traditional insight-oriented

psychotherapy, but appropriate services from

psychologists, psychiatrists, clinical social workers and

other psychotherapists can be very useful in:

• Evaluating and explaining the adolescent’s

developmental profile

• Developing the working partnership

• Conducting functional assessments of behavior

and creating positive behavioral support plans

• Teaching self-management, social cognition

and communication skills

• Providing cognitive behavioral interventions

to address anxiety, depression, obsessive-

compulsive behaviors and other problems

• Providing support for parents, siblings and

educational teams

• In addition to the supports derived from

psychotherapy, many adolescents with ASD will

benefit from social skills groups, occupational

and/or physical therapy and recreational

therapy. Ideally, each of these interventions will

be a part of coordinated program.

One last take-home message

We often worry about what wil happen to our

children when they grow up, especial y when the

child has a disability. As we look to the future of our

children, though, we must remember the words of

Ralph Waldo Emerson (1878): “What is a weed? A

plant whose virtues have not yet been discovered.”

I wish you the best of fortune in the discovery of

your adolescent’s virtues.

158

NOTE: References marked AS-AD are particularly focused upon adolescents with Asperger’s Syndrome.

American Academy of Child and Adolescent Psychiatry (1999). Practice

parameters for the assessment and treatment of children, adolescents, and adults with autism and other pervasive developmental disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 38, 32S-54S.

Andron, L. (2001). Our journey through High Functioning Autism and Asperger R

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Baker, L.J., & Welkowitz, L.A. (2005). Asperger’s Syndrome: Intervening in schools, clinics, and communities. Mahwah, NJ: Lawrence Erlbaum Associates

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Bashe, P.R., & Kirby, B.L. (2001). The OASIS guide to Asperger Syndrome. New York: Crown Publishers.

Bolick, T. (2001). Asperger Syndrome and adolescence: Helping preteens and teens E

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Cumine, V., Leach, J., & Stevenson, G. (1998). Asperger Syndrome: A practical guide for teachers. London: David Fulton Publishers. (AS-AD)

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Debbaudt, D. (2002). Autism, advocates, and law enforcement professionals.

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Duke, M.P., Nowicki, S., & Martin, E.A. (1996). Teaching your child the language of social success. Atlanta: Peachtree Publishers. (AS-AD) Faherty, C. (2000). Asperger’s—What does it mean to me? Arlington, TX: Future Horizons.

Fouse, B., & Wheeler, M. (1997). A treasure chest of behavioral strategies for individuals with autism. Arlington, TX: Future Horizons, Inc.

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Gray, C. (2000). The new social story book: Il ustrated edition. Arlington, TX: Future Horizons.

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LINKS Curriculum. Educational Performance Systems, Woburn, MA.

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Prince-Hughes, D. (Ed.) (2002). Aquamarine blue 5: Personal Stories of col ege C

students with autism. Athens, OH: Swal ow Press.

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E

Rosenn, D. (2002). Is it Asperger’s or ADHD? AANE News, Issue 10.

Shore, S. (Ed.) (2004). Ask and tel : Self-advocacy and disclosure for people on the autism spectrum. Shawnee Mission, KS: Autism Asperger Publishing Co.

S

Shore, S. (2001). Beyond the wal . Shawnee Mission, KS: Autism Asperger Publishing Co.

Tanguay, P.B. (2002). Nonverbal learning disabilities at school: Educating students with NLD, Asperger Syndrome, and related conditions. London: Jessica Kingsley Publishers.

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Tsai, L. (2002). Taking the mystery out of medications in Autism/Asperger Syndromes. Arlington, TX: Future Horizons.

Volkmar, F.R., & Wiesner, L.A. (2004). Healthcare for children on the autism spectrum: A guide to medical, nutritional, and behavioral issues. Bethesda, MD: Woodbine House.

161

Wagner, S. (2002). Inclusive programming for middle school students with autism/

Asperger‘s Syndrome. Arlington, TX: Future Horizons. (AS-AD)

Whitman, T.L. (2004). The development of autism: A self-regulatory perspective.

Philadelphia: Jessica Kingsley Publishers.

Wil ey, L.H. (1999). Pretending to be normal. London: Jessica Kingsley Publishers. (AS-AD) (and subsequent books)

Wil iams, M.S., & Shel enberger, S. (1996). „How does your engine run?“

Albuquerque, NM: TherapyWorks, Inc. (AS-AD)

R

Winner, M.G. (2000). Inside out: What makes a person with social cognitive deficits tick? San Jose, CA: Michel e Garcia Winner, SLP.

< www.socialthinking.com> (AS-AD) E

Wrobel, M. (2003). Taking care of myself: A hygiene, puberty, and personal curriculum for young people with autism. Arlington, TX: Future Horizons.

F

Web Sites

<www.udel.edu/bkirby/asperger/support.html> (OASIS) E

<www.aane.org> (Asperger Association of New England) R

<www.asperger.org> (Asperger Syndrome Coalition of the United States)

<http://www.tonyattwood.com.au/> (Tony Attwood’s site) E

<www.aspie.com> (Liane Hol iday Wil ey’s home page)

<www.TheGrayCenter.org> (Carol Gray’s site) N

<www.faaas.org> (Families of Adults Afflicted with Asperger’s Syndrome)

<www.autism-society.org> (Autism Society of America) C

<www.researchautism.org> (Organization for Autism Research website—

includes a downloadable version of “Parent’s Guide to Research)

<www.naar.org> (National Al iance for Autism Research—another source re E

latest in biomedical research)

<www.aspergerteens.com> (a website created by an adolescent with AS in order S

to “give something back” to other teens with AS and their families)

162

Chapter 15: Autism coaching – what it is

and how it can help you

Autism coaching—what it is

and how it can help you

CHAPTER 15

163

Autism coaching

Contributing Author Barry Bettman, PCC Professional Certified Coach specializing in Autism Spectrum Disorders and Attention Deficit Disorder—Barry Bettman, an author and workshop leader, and a speaker at international conferences, is designated as a Professional Certified Coach with the International Coaching Federation (ICF) and has served as Chairperson of the Professional Personal Coaches Association. A Professional Co-Active Coach (CPCC) with the Coaches Training Institute, Mr. Bettman brings skills in ADD/

ADHD coaching based on in-depth training for the A.D.D. Coach Academy and his lifelong experience with Attention Deficit Disorder. Mr. Bettman has extensive experience with Anthony Robbins Mastery Universities.

He holds a BA degree in Business Administration from San Diego State University.

Resources and links—Barry Bettman, PCC Professional Certified Coach suggests visiting his Autism Today website to learn about his other products and services. Visit <http://bettman.autismtoday.com> today! (*Please note, don’t put in the www.) For more information about Barry Bettman’s work, visit <www.barrybettman.com> and the Autism Coaching Web Site <www.autismcoaching.com>.

Why read this chapter on

sion over ones own baseline knowledge of autism spec-

Autism Coaching?

trum disorders. Knowledge alone is not enough! Au-

T

tism Coaching is individualized, personalized, custom-

here are so many excellent chapters with outstand-

ized and it understands the nature of the difficulties

ing expertise in this Official Autism 101 E-Book.

the person(s) on autism spectrum and related issues.

You may be curious or asking yourself, why read this

Some clients have reported with the addition of Au-

chapter on Autism Coaching? This can be answered

tism Coaching, up to 88% more is achieved for them

with 4 simple questions: 1. What is it? 2. How can it

with practical action plans and a deeper understanding

help me? 3. Why is it different? 4. Where do I get it?

of autism spectrum disorder. In this chapter, there also

are three specific examples of Coaching with clients.

1. What is it? Autism Coaching is a powerful new

While education alone can fade, coaching reinforces

method for focusing a client forward to help get re-

learned concepts and skil s until they become second

sults. What types of chal enges hinder the autistic

nature.

person or family? Difficulty with sensory integration

or making changes in behavior, complexities parenting

3. Why is it different? Autism Coaching allows the

a child with autism or being an adult thrown into the

client (i.e. parents, educators, professionals, family

over stimulated world of autism, and even the family

members) to be naturally creative, resourceful, and

attempting to understand and cope with the autism

who they are in the quest for what they want in their

spectrum disorder. Autism Coaching can be a highly

own life. The purpose of Autism Coaching is not to

success resource to your agendas because it empowers

quote “solve the problems of Autism”, rather to bring

you to move forward with action and learning. Autism

out the greatness of the person. You are just fine and

Coaching is not about “fixing the problem”, but rather

OK the way they already are. Coaching is not consult-

giving you the momentum and practical steps to living

ing, therapy or counseling. Many people in the world

a wonderful life around autism spectrum disorder.

of autism may have experienced one or more of these

modalities. Autism Coaching can be seen as a differ-

2. How can it help me? Autism Coaching can be of

ent or an effective supplementary service to the other

assistance to you whether you are a parent, a teacher,

approaches to help people on the autism spectrum.

a family member or a professional helping someone

Coaching is focused on action, not healing. It looks

on the autism spectrum. With traditional methods of

at the future, not the past. Why things are the way

learning, there can often be an increase in comprehen-

they are doesn’t matter. What matters is how you

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Autism coaching — Barry Bettman, PCC Professional Certified Coach

want them to be. The focus of Autism Coaching is

customized and it understands the nature of the dif-

on identifying specific objectives, and developing stra-

ficulties the person(s) on autism spectrum and related

tegic plans, action steps and thinking processes that

issues. Some clients have reported with the addition

will move you toward achieving your desired goals for

of Autism Coaching, up to 88% more is achieved for

yourself and the person with autism.

them with practical action plans and a deeper under-

standing of autism spectrum disorder. While teaching

4. Where do I get it? Autism Coaching is available

can fade, coaching reinforces learned concepts and

from Professional Certified Coaches with a direct spe-

skil s until they become second nature. Your coach

cialization in autism spectrum disorders. The Autism

provides skil s training in the “need-to-know” moment

Today community has partnered to bring you the best

that formal teaching misses. He also helps you remem-

of autism knowledge / resources with the best of Pro-

ber how much you already know. You learn more by

fessional Coaching. Autism Coaching is available on a

discovering answers than by hearing them.

one-on-one individual basis, in teams of smal groups

of a couple to few people, or in large team groups,

Introduction to professional coaching

where many people are involved in the coaching at

one time. Teleconferencing using the telephone with

Professional coaching is a new powerful way to help

private conference bridge line al ows the Coach and

people get results. You are probably familiar with

the Client(s) to enter into Autism Coaching anywhere

sports coaching where an athlete, such as a golfer or

throughout the world. Autism Coaching can make

tennis player, works with a coach to improve his or her

everyday tasks into excitement and progress instead

game. Autism Coaching is similar. It is a professional

of being chal enged by the weight of autism spectrum

relationship that enhances your ability to learn, make

disorders. An immediate resource for Autism Coach-

changes and achieve desired goals. Whereas a sports

ing is the website < www.autismcoaching.com>

coach helps you with your game, a professional coach

helps you clarify what you want in your life and take

Overview

action in the fol owing ways:

• Clarify what you want to accomplish.

Autism Coaching is a powerful new method for

• Set specific goals.

focusing a client forward to help get results. For some

• Make an effective action plan.

people, results might be a specific IAP Plan, clear

• Stay focused.

communications between the support team members

• Eliminate obstacles.

for the autistic person, putting into practice specific

learning content from a conference or just achieving

more balance in life, especial y when supporting

What is Autism Coaching?

someone with special needs.

Autism Coaching is a natural extension of professional

Autism Coaching focuses on al owing the client to

coaching with specific focus areas around the autism

be natural y creative, resourceful, and to be the person

spectrum and goals for people associated with

the client wants to be in the quest to fulfil life goals.

autism and Asperger’s Syndrome. Whether you are a

Coaching is not consulting, therapy or counseling.

parent, a teacher or a professional helping someone

Whether you are a parent, teacher, or professional

on the autism spectrum, Autism Coaching can be

helping someone on the autism spectrum, Autism

of assistance to you. Why is Autism Coaching so

Coaching can help you help a person with autism, As-

powerful? Have you ever read a book, listened to a

perger’s Syndrome or ADD. With traditional methods

tape or attended a seminar on the subject of autism,

of learning, there can often be an increase in compre-

only to leave with a little more knowledge but not a

hension over ones own baseline knowledge of autism

practical game plan to implement or a team to help

spectrum disorders. Knowledge alone is not enough!

you get the desired results? Autism Coaching is about

Autism Coaching is individualized, personalized,

165

The Official Autism 101 Manual

changing your behavior to help achieve your chosen

bag.” Over just a few months, I began to see results in

goals with the person with autism.

my life that I hadn’t ever been able to achieve. I had

Autism Coaching uses the basic skil s of coaching

extensively tried other modalities with limited success.

with specific emphasis on addressing the learning style

But this seemed quite different. As I look back now, I

needs associated with autism and Asperger’s Syndrome,

can see the fol owing results of partnering with a coach:

such as non-verbal cues, attention, behavior, commu-

• I gained a clearer direction of what I wanted.

nication, social skil s, etc. A regular professional coach

can coach anyone toward chosen goals and dreams.

• I partnered with my coach on “my agenda,” not

An Autism Coach understands the unique talents and

what someone else wanted for me.

characteristics of people with autism and Asperger’s

• I felt understood for the first time in my life,

Syndrome, their chal enges and how these affect the lives

especial y around my own special needs of ADD.

of others. With Autism Coaching, you as a client wil be

• I began to make progress toward my desires.

coached by a specialist in coaching with special insight

and training in autism and Asperger’s Syndrome.

• I eliminated obstacles that seemed like boulders

before.

• I got even clearer on my focus and decided

Why Autism Coaching?

that I could employ the strengths conferred by

A true personal story

ADD and my understanding of coaching to

After more than 20 years as a consultant, I thought

help others.

I was an expert who knew how to help others. Then

• I raised my standards and went through several

in 1993 I ran across professional coaching. I didn’t

coaching certifications.

think much of it but was intrigued—maybe like you.

• I coached clients for thousands of hours to

I considered having a coach guide me toward a more

meet the strenuous Professional Certified

fulfil ing life. But why did I need a coach, I asked

Coach criteria set by the International Coach

myself. After al , I am an expert.

Federation.

Then in 1996, tired of my life’s daily struggle,

I decided to partner with a highly talented and

• I realized that coaching in the special needs

experienced coach to help clarify my direction, set

arena is a special gift and sought out the

specific goals and create focus areas. We began to

additional focus in the autism spectrum.

develop my vision and set a game plan to get there.

• I sought out experts in, and knowledge of,

At this time I met another professional coach

autism and Asperger’s Syndrome to learn the

who was also a professional organizer. We talked over

differences between ADD and autism.

lunch and seemed to have a lot in common. I began

• I partnered with Autism Today to bring the best

to ask her about difficulty I had organizing my office,

resources in autism and best of coaching to help

specifical y the file cabinet. She mentioned something

people like you make progress.

about ADD (Attention Deficit Disorder), about the

chal enges some people have remaining focused while

• I felt very satisfied knowing I am helping

completing a task. After some self-reflection and

people in the area of special needs have a more

reading on the subject of ADD, I was surprised to

fulfilling and balanced life.

learn that a neurobiological disorder was standing in

This is my own (Barry’s) personal story of why

the way of my success. I went to a doctor specializing

coaching can be so powerful. I do not claim that

in ADD and confirmed the diagnosis.

coaching is right solution in every case where a person

As I continued with my own coach, we began to

has special needs, whether due to autism, Asperger’s

partner for success, even though my ADD was now

Syndrome, ADD or anything else. Expertise,

disclosed to me and the so-cal ed “cat was out of the

knowledge and resources are key ingredients for

166

Autism coaching — Barry Bettman, PCC Professional Certified Coach

success. I just want to acknowledge that having a

Lastly, a designed al iance is a relationship that is

coach and partnering for success has made a profound

custom tailored. It is built on the communications

difference in my own personal life and I am very

approach that works best for the client and coach.

grateful for this.

The clients learn that they are in command of their

coaching relationship and ultimately of the changes

Co-active coaching skills: a foundation

they make in their lives. The fundamental principle of

for Autism Coaching

coaching is that action and learning take place. These

two components combined together create change.

Co-active coaching refers to a style of coaching that in-

Forwarding the action and deepening the learning

volves the active and col aborative participation of both

complement each other.

the coach and the client. In other words, it brings the

A common misunderstanding about Autism

resources of client and coach together, and al ows the cli-

Coaching is that it is al about getting things done.

ent to take away gems that he/she can put into action.

Sometimes coaching has been inaccurately compared

One of the beauties of the co-active model is that

to hiring a nagging parent to make sure things get

it uses a set of skil s that both the client and coach

done. This is not coaching! Actually by utilizing the

can draw on. These skil s are not just for coaching.

co-active coaching model, deepening the learning is

They are life skil s suited to anyone, whether the

just as important as action.

person has autism, Asperger’s Syndrome, ADD or

At the heart of the co-active coaching model are

is a neurotypical parent, child, teacher, educator,

five primary keystones: listening, intuition, action/

professional or even a friend.

learning, self-management and curiosity. The coach

The four pil ars of the co-active coaching model are:

employs these with the client as part of the designed

• The client is naturally creative, resourceful and

al iance throughout the coaching relationship. They

whole.

help the client achieve:

• Co-active coaching addresses the client’s whole

• Fulfillment: what fills the client’s heart and

life.

soul.

• The agenda comes from the client, not from the

• Balance: how to live within yourself and have

coach.

natural equilibrium.

• The relationship is a designed alliance between

• Process: for the coach and client together

the client and the coach.

acknowledge exactly where the client is right

now and explore what’s really up for the client

As such, the clients have the answers or they can find

now in the present moment.

the answers. From a co-active coach’s perspective, noth-

ing is wrong or broken, and there is no need to fix the

Co-active coaching skil s used by the coach and the

client. Therefore, the coach does not have the answers.

client include:

Rather the coach has questions that help the client to

• Accountability: What will you do and by when?

inquire within. The client doesn’t do al the work. It’s a

joint coaching effort. The term co-active refers to using

• Acknowledgement: Addresses who the client is

the resources of both the client and the coach.

being, not what the client has accomplished.

Addressing the client’s wholeness, not brokenness,

• Asking permission: Granting the coaching

is a real key of co-active coaching. A client may have

relationship access to unusual or sensitive areas

chal enges or difficulties, but the focus is on how the

of focus.

client is natural y creative, resourceful and whole. The

• Brainstorming: Generating ideas together.

client is viewed as being in charge of his/her destiny.

The coach’s job is to highlight the client’s agenda and

• Championing: Standing up for what the client

bring forth his/her client’s greatness.

is capable of achieving.

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The Official Autism 101 Manual

• Clarifying: Articulating clearly what he/she

arrangement that meets your needs and schedule. The

really wants or is thinking.

basic design consists of:

• Creating trust: Setting up a foundation for

• An initial session to create a coaching strategy.

mutual safety and trust.

• Special targeted coaching sessions on an as-

• Intuiting: The process of accessing and trusting

needed basis.

one’s inner knowing.

• Regular ongoing coaching sessions.

• Listening: The coach listens for the client’s

vision, values and purpose. To “listen for” is to

Team Coaching is similar to Individual Coaching,

listen in search of want the client wants.

but it has a broader focus with one or more topics for

• Powerful questions: Open-ended questions

several people at the same time. With Team Coaching,

that evoke clarity, action, discovery, insight or

individuals are coached while the others deepen their

commitment. Powerful questions expand the

learning by witnessing the coaching. In Team Coach-

range of possibility, encourage learning and

ing, an individual often works with a buddy, gaining

clarify vision.

knowledge and experience in a multi-person setting.

Coaching is often conducted over the telephone.

• Requesting: Based on the client’s agenda,

From the convenience of you home or office, anywhere

requesting is designed to help the client achieve

in the world, you or your team can interact with your

goals.

coach. Sometimes, coaching in person is used, par-

• Structures: Devices that remind clients of their

ticularly if the client and coach live near one another.

visions, goals or purpose, or of actions that they

Often e-mail can be used to supplement the coaching

need to take immediately.

session with written information. A coaching cal sheet

• Values: Who the client is being right now.

provides can help a client or clients prepare and maxi-

These are principles you hold to be of worth in

mize the value of a coaching session. One example of a

your life.

coaching cal sheet is a Success Partnership Form.

• Vision: A multifaceted mental image and set

of goals that personally define and inspire the

Success Partnership Form

client to take action.

The Success Partnership Form is from the book Extreme

Co-active skil s give the coach and client a common

Success by Rich Fettke 2002 <www.Fettke.com> .

framework through which to move forward.

It has been said that pale ink is better than the best

Formats of coaching

memory. That is why a Success Partnership Form (SPF)

can help you stay clear on what you said you would

As a parent and/or professional, coaching unlocks your

do, what you actual y did and what you plan on doing.

potential to work with people on the autism spectrum,

Each week, either fax or e-mail an SPF the day before

including those with Asperger’s Syndrome. In a coach-

you meet with your Success Partner. Whenever I sit

ing relationship, you and your coach prioritize, plan,

down to fil out this form, it al ows me to reflect on

analyze, troubleshoot and brainstorm. Your coach

how effective I’m being during the week and where I

provides structure, feedback, perspective, skil -building

can improve. Clients have told me that an SPF has been

techniques and smart questions. As a coaching team,

one of the best tools for enhancing their effectiveness

you evaluate options, make decisions, track progress

and performance. There are several sections to an SPF.

and, most important, celebrate achievements.

The easiest way to use this form is to create a template,

The structure of individual, one-on-one coaching

make copies of it and fil one in every week. You can

is flexible. You and your coach custom design an

customize the form to meet your needs.

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Autism coaching — Barry Bettman, PCC Professional Certified Coach

SUCCESS PARTNERSHIP FORM

skil s training in the “need-to-know” moment that

formal teaching misses. He also helps you remember

DATE:

how much you already know. You learn more by

MEETING TIME:

discovering answers than by hearing them.

Coaching focuses on identifying specific objectives

CHECK IN (HOW WAS THE PAST WEEK):

and developing strategic plans, action steps and

•

thinking processes that wil help you achieve your

•

•

desired goals with your child with autism. Coaching is

focused on action, not healing. It looks at the future,

I WANT TO USE THIS PARTNERSHIP MEETING TO:

not the past. Why things are the way they are doesn’t

•

matter. What matters is how you want them to be.

•

•

RESULTS OF MY GOALS FROM OUR LAST MEETING:

The nature and scope of coaching

•

The fol owing is from the International Coach Federation.

•

•

To learn more, visit < www.coachfederation.org >.

SUCCESSES AND WINS:

The International Coach Federation (ICF) is the pro-

•

fessional association of personal and business coaches

•

•

that seeks to preserve the integrity of coaching around

the globe. ICF helps people find the coach most suit-

CHALLENGES AND OBSTACLES:

able for their needs. It supports and fosters develop-

•

ment of the coaching profession, has programs to

•

•

maintain and upgrade the standards of the profession,

conducts a certification program that is the gold stan-

MAJOR FOCUS AREAS IN MY LIFE THIS MONTH:

dard for coaches worldwide and conducts the world’s

•

premier conference and other educational events for

•

•

coaches. ICF is the largest non-profit professional as-

sociation worldwide of personal and business coaches

MY GOALS FOR THIS WEEK:

with thousands of members throughout dozens of

•

countries in the world. We exist to build, support and

•

•

preserve the integrity of the Coaching Profession.

Part I: With respect to psychotherapy

How does coaching differ from other

modalities?

Who the client is

The individual coaching client is someone who wants

Traditional consulting offers solutions and expertise.

to reach one or more of the fol owing: a higher level of

Coaching facilitates discovery by helping you find your

performance, learning or satisfaction. The client is not

own answers. Your coach provides his/her expertise

seeking emotional healing or relief from psychological

when it is useful but doesn’t do things for you. The

pain.

primary role of your coach is to listen, question,

The coaching client can take action to move

observe, pinpoint, reframe and articulate what’s so.

towards a goal with the support of the coach. The

The plans and goals you make are your own.

successful client is not excessively limited in the ability

Coaching reinforces learned concepts and skil s

to take action or overly hesitant to make this kind of

until they become second nature. Your coach provides

progress.

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The Official Autism 101 Manual

How service is delivered

client is free to accept or decline what is offered and

Coaches and clients arrange the schedule and means of

takes the ultimate responsibility for action. The coach

contact (e.g., in person, by phone or via e-mail) that

is not discouraged from offering advice, opinions or

serve them both. They are not constrained to fol ow a

suggestions on occasion.

standardized schedule or means of contact.

Requesting

The relationship in coaching

A coach makes a request of the client to promote

A coach relates to the client as a partner. A coach does

action toward the client’s desired outcome. A coach

not relate to the client from a position of an expert,

does not make such requests in order to fix the client’s

authority or healer.

problem or understand the client’s past.

Coach and client together choose the focus, format

and desired outcomes for their work. The client does

Part II: With respect to consulting

not relinquish the responsibility for creating and main-

Definition

taining these nor does the coach take ful responsibility

In al of the fol owing statements, the word “client”

for them.

is used to denote the person who is being coached,

regardless of who is paying for the service.

Results

Coaching is designed to help clients improve their

Expertise

learning and performance, and enhance their quality

Coaches are experts in the coaching process and

of life. Coaching does not focus directly on relieving

may not have specific knowledge of a given subject

psychological pain or treating cognitive or emotional

area or industry. Where coaches have expertise in

disorders.

other areas, they may use it to facilitate the coaching

process. Coaches do not use this particular expertise to

Time frames

diagnose, direct or design solutions for the client.

Coaching concentrates primarily on the present and

future. Coaching does not focus on the past or on the

Relationship

past’s impact on the present.

Relationship is the foundation of coaching. The

Coaching uses information from the client’s past to

coach and client intentional y develop a relationship

clarify where the client is today. It does not depend on

which is characterized by a growing and mutual

resolution of the past to move the client forward.

appreciation and respect for each other as individuals.

This relationship is not an adjunct to or by-product of

Emotions

the coaching. Nor is it based on the client’s position or

Coaching assumes the presence of emotional reactions

performance.

to life events and that clients are capable of expressing

and handling their emotions. Coaching is not

Use of information

psychotherapy and emotional healing is not the focus

In coaching, information drawn from the client is

of coaching.

used by the coach to promote the client’s awareness

and choice of action. This information is not used to

Relationship to psychotherapy

evaluate performance or produce reports for anyone

Coaching can be used concurrently with

but the person being coached.

psychotherapeutic work. It is not used as a substitute

for psychotherapeutic work.

Scope

Coaching has the freedom and flexibility to address

Advice

a wide variety of personal and professional topics. In

Advice, opinions or suggestions are occasional y

any given coaching relationship, coach and client alone

offered in coaching. Both parties understand that the

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Autism coaching — Barry Bettman, PCC Professional Certified Coach

determine the scope of their work. Coaching is not

• Communication strategies

necessarily restricted to a narrowly defined issue nor is

• Biomedical interventions

its scope determined in any other way.

• Methodology selection

• Parenting a child with autism

Contribution to results

• Adults dealing with autism themselves or in the

In coaching, any contribution the coach makes to

family

producing the client’s desired outcome is through

• Vaccinations and environmental concerns

ongoing interaction with the client. The coach’s role

• Career planning

does not include producing a contracted product or

• Life estate planning to include care for an

result outside of the coaching sessions.

Autistic person

• Diet and food sensitivities

Ongoing impact

• Life skills planning

Coaching is designed to provide clients with a greater

• ADD and ADHD

capacity to produce results and a greater confidence in

• School program planning

their ability to do so. It is intended that clients do not

• Puberty

leave coaching with a perception that they need to rely

• Talents and strengths

on a coach in order to produce similar results in the

• Asperger’s Syndrome

future.

• Safety Awareness

• Curriculum development

• Disclosure

What are the benefits of

• Learning styles

Autism Coaching?

• Emotions

Autism Coaching provides many benefits to clients,

• Making friends

whether the client is a parent, teacher or professional

• Transitions

helping the person on the autism spectrum, or the

• Life map creation

client is the person with autism.

• Anything else that the coaching client wants

Autism Coaching provides the client with forward

(It’s the client agenda!)

moving action on autism issues. It offers an excel ent

The benefit of Autism Coaching is to transform chal-

way to deepen your learning about autism. When

lenges into exciting progress. Imagine waking up

working with an autism coach, together you co-create

thrilled because you are on the way to having a more

action plans. The aim is to clarify your intentions

fulfilled life with people on the autism spectrum.

and gain success. Of course, the coach won’t do the

Having your own coach takes you to the next level—

work for you. He/she wil guide you, to help you

beyond reading a book or listening to a tape. Autism

achieve your goals, whether they are to assist a person

Coaching helps you practice and achieve actions that

with autism, gain a better understanding of autism or

develop you and the person with autism.

achieve balance in your life while you support others

on the autism spectrum.

Clients of Autism Coaching are often parents,

Coaching versus psychotherapy:

family members, professionals, teachers, educators,

the great debate

people with autism, Asperger’s Syndrome or ADD—

The fol owing excerpt is from Choice Magazine.

anyone who wants to move his/her life forward. Areas

To read the entire article, visit

where Autism Coaching may benefit include:

< www.autismtoday.com/therall.pdf > .

• Sensory integration

While therapy and coaching may share a common

• Behavioral strategies

background, their differences are vast. Therapy is vital

• Social skills

for those with psychological problems—what we cal

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The Official Autism 101 Manual

pathology. Coaching is for those who are healthy and

Three examples of coaching

already self-motivated. Both fields have their place

and should not be confused. For advanced therapy

Johnny the client was having a one-on-one

patients, coaching can be an additional benefit, but

individual coaching session

coaching assumes the healing and wel -being of its

The Coach asked Johnny what he wanted to focus on

clients as a given. A therapist may add coaching skil s

today. Johnny said he was having difficulty keeping

to his or her practice, but a coach never engages in

focused and getting tasks accomplished. The Coach

therapy. A coach is trained to detect any need for

inquired of Johnny: How do you sustain attention to

therapy and there are guidelines for when to refer a

get a task accomplished?

coaching client to a therapist. . . .

Johnny thought to himself and said, I real y don’t

Essential y, a therapist is the professional with

know how to sustain attention. The Coach explained

the answers to pain and brokenness; a coach is a

to Johnny that when we set out to achieve a task or

professional partner to assist in discovery and design

goal, we begin by focusing our attention on the task

for growth. The shift from seeing clients as “il ” or

or goal at hand. Some people have a difficult time

having pathology toward viewing them as “wel and

sustaining and holding attention long enough to get a

whole” and seeking a richer life is paramount to

specific task accomplished.

understanding the evolution of coaching. I often say

Johnny said, I get it. It’s like when I am having

therapy is about uncovering and recovering, while

difficulty getting my checkbook balanced. I begin to

coaching is about discovering.

place my attention on balancing the check book and

A good way to view the foundational differences

then I have to go find the check book and the bank

between therapy and coaching is to think of two cars

statements. Then I need to open the statements, take a

driving along a sandy, wave-washed shoreline. One

yel ow highlighter and mark the sections by deposits,

car hits a log and breaks an axle, sinking deep into

checks and bank charges. Is this holding my attention?

the sand. The other car swerves to keep from hitting

Johnny asked the Coach.

the log, but in doing so also sinks in the sand. For the

Let me ask you a question, Johnny. On a scale of

first car, the only hope is a tow truck and a week in

1 to 10, where 10 being the most and 1 being the

the shop. It is broken and cannot go further. This is a

least, how does this fit for you on sustaining attention?

therapy patient. The second car merely needs a push,

Johnny proudly perked up. It’s about 7 for me. Great,

a little traction under its wheels, and it continues

exclaimed the Coach. What would make it a 9 or 10

its race across the sand. This is the coaching client.

for you? Johnny pondered this a minute. What if I was

Unlike therapy, little time is spent in the past with

to break this down into smal er pieces? The Coach in-

coaching, except for brief “visits” and then the focus

quired what would those pieces look like. Johnny said,

is on developing the future. This philosophical shift

only work on one month of bank statements at a time.

has taken root in a generation that rejects the idea of

The Coach inquired, What next? I wil commit

sickness and seeks instead wel ness, wholeness and

to balancing one statement a week, said Johnny. For

purposeful living—both personal y and professional y.

how long? asked the Coach. Until al my backlog

The coaching relationship al ows the client to explore

statements are balanced. The Coach said, So you

blocks to great success and to unlock his or her biggest

mentioned that you have 10 months of backlog bank

dreams and desires.

statements to balance, right? Yes, said Johnny. How

reasonable is it to get al 10 bank statements balanced

over the next 10 weeks, which is about two and a half

months? Johnny had an “ah ha!” You nailed it on the

head. I bit off more than I can chew. I guess what’s

realistic here is to commit to balance each current

month of bank statement within a week of receiving

them. The Coach said, Okay, that takes care of the

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Autism coaching — Barry Bettman, PCC Professional Certified Coach

current statements. What’s next for the backlog?

Bob was amazed. I didn’t realize until now that

Johnny said: I commit to balancing one backlog

I was so visual. I process information in pictures. If

statement every two weeks.

I can’t see the picture, I just assumed that the other

Is it okay with you if we both write down that the

person wasn’t communicating to me.

smal er pieces you are committing to are to:

The Coach asked if it was okay to assign some

• Balance each current month bank statement

homework. Susan said sure, but Bob asked what it

within 1 week.

might involve. The Coach explained that homework

• Balance one backlog statement every 2 weeks.

is practice for between coaching sessions, to foster

progress. He then turned to Susan. Susan, he said,

Johnny says that he feels real y good about this.

your homework is to notice when Bob or anyone

He is excited and looks forward to the smal er steps.

else says to you, I can hear what you are saying. Bob,

Great, says the Coach, I look forward seeing you be

he said, your homework is to notice when Susan or

successful.

anyone show’s you the picture or vision of where they

are headed. Each of you, notice when you feel you are

Susan and Bob decided to have Coaching

being heard and when you are not. Bring your learning

together, in a Team Coaching arrangement

with you to the next Coaching cal .

Susan and Bob are partners in an architecture

Susan and Bob brought excitement and enthusiasm

company. They are also parents of two wonderful

to the next Coaching cal , a week later. The Coach

special needs children.

asked each of them about what had worked wel since

The Coach asked Susan and Bob: What’s most im-

the last Coaching cal . Bob pul ed out a pictorial

portant to you in life? They took out pads of paper and

diagram and showed how he processes information as

wrote their lists. Susan explained that being listened

a visual processor. The chart also showed how Susan

to by her husband, co-workers and children was at the

listens to information and hears what’s happening.

top of her list. Bob said that seeing the big picture of

Susan talked about what she learned. I said I hear

where they were headed was most important to him.

you—and real y meant it. I never realized how hard I

The Coach asked: Where to you want to be 12

listen and had always thought until now that everyone

months from now? They looked at each other and

else did this, too. What I got out of our coaching

said, free of misunderstandings. The Coach inquired:

session is that different people process information in

What’s getting in the way? Susan said, I keep tel ing

different ways.

Bob what I want but he doesn’t listen. Bob explains

The Coach asked Susan and Bob to notice their

that he doesn’t think Susan gets the vision.

own dominate processing modality and communicate

The Coach asked them about how they process

to the other person in their own preferred processing

information. Susan and Bob were perplexed. They had

modality. Susan and Bob agreed to this and said they

never been asked that question, even after raising two

would begin to do it with their children.

children and being in business for over a decade. What

The Coach congratulated them on their new-found

do you mean by “process information” they asked?

understandings.

The Coach explained that people process

information in various ways. Most of us have five

Sharon engaged with an Autism Coach to

senses: sight, hearing, touch, smel and taste. A visual

focus on disclosure of Asperger’s Syndrome

person wil often say, “I can see what you mean”

During the prior week between coaching sessions,

whereas one who depends more on hearing wil say “I

Sharon did some homework on disclosure. She gave

hear you loud and clear.”

thought to disclosure and posed this question at

Susan and Bob were astonished—but they under-

the coaching session: How do I disclose that I have

stood the point the Coach was making. What did you

Asperger’s Syndrome?

learn? the Coach asked. That I want to hear what Bob

The Coach set up a safe and trusting environment

has to say, and he wants to see it from me, she said.

by asking permission to coach her about disclosure.

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The Official Autism 101 Manual

Sharon appreciated this, saying it is a real y sensitive

accountability question: How will you know that you

area. The Coach asked that Sharon only share what she

have written down your items to disclose, looked

felt was applicable. He said she should be aware that

at your calendar, checked with Mr. Harris on his

she possesses within herself al the resources she needs

schedule, and set a time and place to meet? Sharon

to be able to disclose when appropriate. Sharon asked

explains: That’s easy, it will be scheduled on both of

the Coach how he knew this. The coach explained

our calendars and a reservation for lunch will have

that he holds Sharon, the client, as natural y creative,

already been made for our meeting. And I’ll bring the

resourceful and whole. Sharon replied that this

sheet I wrote down the items to disclose with me to

approach differed from others she had experienced.

the meeting with Mr. Harris. The coach echoed those

I have always been told what to do and how to do it.

words of her commitment back to Sharon. The coach

Where do we go from here? she asked.

acknowledged to Sharon, you are truly living your

The Coach asked Sharon about her values

values of integrity, trust, and clear communications.

concerning disclosure. She thought and then spoke of

I get it, she said. I’ll report back at our next coach-

three values: integrity, trust and clear communications.

ing call on my progress on disclosure. He asked, when

In what ways are these important for you? the coach

would you like to have our next coaching session

asked. Sharon explained that being in integrity

Sharon? How’s 2:00 p.m. Thursday? Fine, talk to you

with herself and others has her feel congruent with

then, said the Coach. Sharon said thanks! I am off to

herself. Trust al owed her to feel safe and speak from

my calendar and cal Mr. Harris now.

her heart. Clear communications wil minimize

miscommunication when I disclose about having

Asperger’s Syndrome. I can put it right out there and get

Human Software Engineering™: a

the word out when I need to. Wow, I just said it, I can

toolbox of options for Autism Coaching

put it right out there and get the word out when I need

Human Software Engineering can provide an extra

to. That’s amazing how easy disclosure seems to be now.

turbo boost to the coaching client’s success. In my

The Coach congratulates Sharon for being brave,

search for excel ent tools to add to the toolbox for

courageous and articulate. This reflects her values,

Autism Coaching, I have found, experienced and

integrity, trust and clear communications. Sharon

adopted Human Software Engineering™. This is a

congratulates herself for stepping up to the plate.

unique and perfect fit for coaching. Human Software

Using a skil cal ed Requesting, the coach makes

Engineering™ is a revolutionary way of finding and

a request of Sharon to set up a meeting with the

eliminating the causes of obstacles in human life. For

person she wants to tel about her having Asperger’s

example, a computer software analogy is used here

Syndrome. Sharon, he says, I have a request for you

with humans to describe a viewpoint of how we are

to set up a meeting with Mr. Harris to disclose your

programmed or conditioned.

situation. Wel , maybe, she says. The coach reframes

If a computer is not giving us the desired output,

the request, asking, What wil it take for you to be

it may need to be debugged or upgraded. The same

prepared for a meeting on disclosure with Mr. Harris?

is true for us. Our Inner Human Software™ is made

She paused a short while, then said: to be integrity

up of thoughts, feelings and intentions. These control

with al the components of disclosure of my Asperger’s,

our “output.” So if something isn’t going right in your

trust myself and communication clearly with Mr.

life, you could benefit from some debugging and

Harris. Wow, I am really clear, she replies. What’s

upgrading of your Inner Human Software.

next, inquired the coach. It will really be helpful for

The bugs, or unwanted programs, that we al

me to write down the specific items to disclose, this

accumulate through our human conditioning tend

way I’ll really have a basis for clear communications.

to keep us locked in old ways of thinking and acting

Then I’ll have to look at my calendar, call Mr.

that can get in the way of what we real y want in life.

Harris and ask him to check his schedule. Next we

These “bugs” are barriers to your own human success.

wil set a time and place to meet. The coach asks an

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Autism coaching — Barry Bettman, PCC Professional Certified Coach

You can think of these bugs as self sabotage within

a parent in this instance, brings to a coaching session a

our own Inner Human Software. What prevents us

focus area for getting their autistic child to school on

from removing these barriers from within ourselves is

time. The Coach asks the client what’s getting in the

accessing the patterns of energy that are resonating

way of getting the child to school on time. The client

somewhere inside of us. In simple terms, Human

says he is always late and he is going to make the child

Software Engineering uses the principles of physics,

be on time. Note that the act of being on time for the

specialized coaching skills, optionally sophisticated

child is one focus. The client having internal barriers

electronic technology—the WaveMaker™ (which

in their own way is a different coaching focus. The

can cancel the internal energy of internal barriers)

two barriers that are present for the client are Being

and special testing techniques to pinpoint the energy

judgmental and Trying to force an outcome. The

patterns of these Inner Human Software bugs and

parent may be creating an extra demand on themselves

delete them. What this means to the coaching client,

by Being judgmental about their child being late and

you can begin to live free of the inner barriers which

Trying to force the outcome by forcing their child to

may have stopped you from your own success.

be on time. The client often reports a physiological

A coaching model called The 12 Core Dynamics

sensation or feeling within them when discussing these

to Common Problems™ is used within Human

barriers. This is just energetic resonance within herself

Software Engineering to understand and debug the

of conflicting feeling sensations. Clients already have a

barriers that get in the way of our own success. The

sense of this energetic resonance as they tend to notice

12 Core Dynamics to Common Problems™ provides

one or more conflicting feeling sensations within their

a new language and structure for understanding the

body.

nature of human conditioning. The Core Dynamics

There are some very excel ent coaching techniques

model is a part of an emerging field called Human

to assist the client to eliminate this internal energetic

Software Engineering. The new insights, techniques

resonance of conflicting feeling sensations. One

and skills that are utilized, when learned and used,

of them is to ask the client to feel into the core of

can help you liberate yourself from the invisible but

the energy. Feel the sensations of the energy within

powerful influences of your early conditioning. Our

themselves that shows up within their body around

conditioning has a pervasive and insidious grip on

Being judgmental or Trying to force an outcome.

us, controlling our behavior and decision making

Usual y clients report back that once they feel directly

and keeping us locked into a very limited level of self

into the core of the energy, there seems to be an

expression and enjoyment of our lives.

absence of these core dynamics. In this case, Being

The 12 Core Dynamics to Common Problems™ are:

judgmental or Trying to force an outcome as barriers

1. Resisting feeling things ful y

begin to diminish and are eliminated. Now the client

2. Ignoring your intuition

can work with a coaching structure for the child

3. Being judgmental

around being on time without being caught up in the

4. Avoiding the present

charge of the child being late. The 12 Core Dynamics

5. Looking for yourself where you are not

helps to eliminate barriers to success.

6. Mistaking need for love

Human Software Engineering can be used as

7. Resisting change

an additional tool for Autism Coaching in assisting

8. Limiting self expression

to remove bugs or barriers with in ourselves. Just

9. Trying to force an outcome

as a computer runs on software and hardware, as a

10. Excluding other perspectives

computer analogy so do humans. Our software is our

11. Manufacturing interpretations

beliefs, values, intentions and conflicting intentions.

12. Over-reacting to circumstances

Our hardware is our bodies, which are sometimes

blocked by food sensitivities, toxins such as mercury

How are the 12 Core Dynamics to Common

or other insidious barriers. With the use of highly a

Problems™ used in Autism Coaching? A client, who is

skil ed Human Software Engineering practitioner with

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The Official Autism 101 Manual

specialized coaching skil s, optional y sophisticated

Summary

electronic technology—the WaveMaker™ (which

can cancel the internal energy of internal barriers)

Autism Coaching is a modern new approach for

and special testing techniques to pinpoint the energy

getting forward-looking results for those with autism.

patterns of these Inner Human Software bugs and

You and your Autism Coach work together to:

eliminate them, making it much more easy and

• Clarify what you want to accomplish

effortless for clients to move forward in their lives.

• Set specific goals

You may ask when is it optimal to utilize the Human

• Make an effective action plan

Software Engineering as part of Autism Coaching?

• Stay focused

It’s simple. When a person has insidious barriers or

• Eliminate obstacles

obstacles to success that don’t seem to be addressed in

In a coaching relationship, you and your coach

other ways, Human Software Engineering utilizing the

prioritize, plan, analyze, troubleshoot and brainstorm.

12 Core Dynamics, with or without the WaveMaker

Your coach provides structure, feedback, perspective,

technology, can provide an extra turbo boost to their

skil -building techniques and smart questions.

success.

Together as a coaching team, you evaluate options,

make decisions, track your progress and, most

How do I get started with

important, celebrate achievements.

Autism Coaching?

As a parent and/or professional, coaching unlocks

your potential to maximize your own performance

Have your own direct experience! Reading about

for working with people on the Autism Spectrum,

Autism Coaching is one thing, experiencing first

including Asperger’s Syndrome. With great

hand is the real thing. Recently, Autism Today has

understanding for what you may be going though

begun a partnership with Autism Coaches that aims

around autism, I wish you the very best of success.

to bring together the best of autism knowledge and

resources and the best of coaching. Autism Coaching

is available on a one-on-one, individual basis, in teams

References

of small groups of a couple of people to a few or in

• The Nature and Scope of Coaching: International

large team groups, where many people are involved in

Coach Federation < www.coachfederation.org>

the coaching at one time.

• Coaching VS. Psychotherapy, The Great Debate:

Teleconferencing enables Autism Coaching any-

Choice Magazine

where in the world. A good way to get started with

< www.autismtoday.com/therall.pdf> Autism Coaching is to connect with a coach specializing in autism. One resource is to visit

• Success Partnership Form, Book Extreme Success:

<www.autismcoaching.com>. Another is to call the

Rich Fettke 2002 <www.Fettke.com> offices of Autism Today at 866-9AUTISM. Of course

• Co-Active Coaching: The Coaches Training

you can also ask your friends who they are using for

Institute: < www.thecoaches.com> Co-Active an Autism Coach—or search on the Internet for

Coaching book 1998 by Laura Withworth, Henry

one. Be sure to find a coach who is certified and who

Kimsey-House, Phil Sandahl.

specializes in autism. You will want to find someone

• Human Software Engineering, The 12 Core

whom you connect with, one who fits your own needs

Dynamics, WaveMaker: Great Life Technologies:

for a coach and who understands the uniqueness and

< www.greatlifetechnologies.com> strengths of the autism spectrum.

< www.experiencethewavemaker.com> 176

Chapter 16: Typical areas of strength,

building self-esteem and positive tools

Typical areas of strength, building

for those on the autism spectrum or with

ADHD

self-esteem and positive tools for

those on the autism spectrum or

with ADHD

CHAPTER 16

177

Genius may be an abnormality: educating students with

Asperger’s Syndrome or high functioning autism

Contributing Author Temple Grandin, Ph.D., Animal Science, University of Illinois—One of the most world’s most accomplished and well-known adults with autism, Dr. Grandin is a prominent speaker and writer on this subject. In her book, Thinking in Pictures, Dr. Grandin delivers a report from the country of autism. Writing from the dual perspectives of a scientist and an autistic person, she tells us how that country is experienced by its inhabitants and how she managed to breach its boundaries to function in the outside world. What emerges documents an extraordinary human being, one who gracefully and lucidly bridges the gulf between her condition and our own. Dr. Grandin is also a gifted scientist who has designed livestock handling facilities used worldwide and is an Associate Professor of Animal Science at Colorado State University.

Resources and links—Temple Grandin, Ph.D. suggests visiting her Autism Today website to learn about her other products and services: Visit: <http://grandin.autismtoday.com> today! (*Please note, don’t put in the www.) You can learn more about Dr. Grandin and her work at < http://www.grandin.com> .

Introduction

upon what I think and do. I am what I think and do,

I

not what I feel. I have emotions, but my emotions are

am becoming increasingly concerned that intel ectu-

more like those of a 10-year-old child or an animal.

al y gifted children are being denied opportunities

My life has meaning because I have an intel ectual y

because they are being labeled either with Asperger’s

satisfying career that makes life worth living. In my

Syndrome or with high functioning autism. Within

work designing livestock facilities, I have improved

the last year I have talked to several parents and I

the treatment of farm animals and I have been able to

was disturbed by what they said. One mother cal ed

travel many interesting places. I have traded emotional

me and was very upset that her six-year-old son had

complexity for intel ectual complexity. Emotions are

Asperger’s Syndrome. She then went on to tel me

something I have learned to control.

that his IQ was 150. I replied that before people knew

It is essential that talented children labeled either

about Asperger’s Syndrome, their child would have

high functioning autism or Asperger’s Syndrome be

received a very positive label of intel ectual y gifted.

trained in fields such as computer programming,

In another case the parents of a teenager with

where they can do intel ectual y satisfying work. As for

Asperger’s Syndrome cal ed and told me that they

many people with Asperger’s Syndrome, for me my life

were so concerned about their son’s poor social skil s

is my work. Life would not be worth living if I did not

that they would not al ow him to take computer

have intel ectual y satisfying work.

programming. I told his mother that depriving him

I did not ful y realize this until a flood destroyed

of a chal enging career in computers would make his

our university library. I was attending the American

life miserable. He wil get social interaction through

Society of Animal Science meetings when the flood

shared interests with other computer people. In a

occurred. I first learned about it in a story on the front

third case, a super-smart child was not al owed in the

page of USA Today. I grieved for the “dead” books

talented and gifted program in his school because he

the same way most people grieve for a dead relative.

had an autism label. Educators need to become more

The destruction of books upset me because “thoughts

aware that intel ectual y satisfying work makes life

died.” Even though most of the books are stil in

meaningful.

other libraries, there are many people at the university

who wil never read them. To me, Shakespeare lives

I am what I think and do

if we keep performing his plays. He dies when we

stop performing them. I am my work. If the livestock

My sense of being, as a person with autism, is based

178

Genius may be an abnormality — Temple Grandin, Ph.D.

industry continues to use equipment I have designed,

magazines describe his incredible memory as a young

then my “thoughts live” and my life has meaning.

child.

If my efforts to improve the treatment of cattle and

There is evidence that high functioning autism and

pigs make real improvements in the world, then life is

Asperger’s Syndrome have a strong genetic basis. G.R.

meaningful.

DeLong and J.T. Dyer found that two thirds of fami-

I have been reading with great satisfaction

lies with a high functioning autistic had either a first

the many articles in magazines about Linux free

or second degree relative with Asperger’s Syndrome.

software. People in the business world are not able

In the journal Autism and Developmental Disorders,

to comprehend why the computer people give their

Sukhelev Naragan and his co-workers wrote that edu-

work away. I am unable to think about this without

cational achievement of the parents of an autistic child

becoming emotional. It is no mystery to me why they

with good language skil s were often greater than those

download their intel ectual ideas into a vast, evolving

of similar parents with normal children. Dr. Robert

and continual y improving computer operating

Plomin at Pennsylvania State University states that au-

system. It is because their thoughts wil live forever as

tism is highly heritable.

part of the “genetic code” of the computer operating

In my book, Thinking in Pictures, I devote an en-

system. They are putting themselves into the operating

tire chapter to the links of intel ectual giftedness and

system—and their “intel ectual DNA” wil live forever

creativity to abnormality. Einstein himself had many

in cyberspace. As the program evolves and changes,

autistic traits. He did not learn to speak until he was

the code they wrote wil probably remain hidden

three years of age and he had a lack of concern about

deep within it. It is almost like a living thing that is

his appearance. His uncut hair did not match the

continual y evolving and improving. For both me and

men’s hairstyles of his time. Additional insights into

for the programmers that contribute to Linux, we do it

Einstein are in Thinking in Pictures and other books in

because it makes our lives more meaningful.

my reference list.

Continuum of traits

Genius is an abnormality?

There is a continuum of personality and intel ectual

It is likely that genius in any field is an abnormality.

traits from normal to abnormal. At what point does a

Children and adults who excel in one area, such as

bril iant computer programmer or engineer get labeled

math, are often very poor in other areas. The abilities

with Asperger’s Syndrome? There is no black and white

are very uneven. Einstein was a poor spel er and did

dividing line.

poorly in foreign languages. The bril iant physicist

Simon Baron-Cohen, an autism researcher at the

Richard Feynman did poorly in some subjects.

University of Cambridge, found that there were two

A review of the literature indicates that being truly

times as many engineers in the family histories of peo-

outstanding in any field may be associated with some

ple with autism. I certainly fit this pattern. My grand-

type of abnormality. Kay Redfield Jamison, from

father was an engineer who co-invented the automatic

Johns Hopkins School of Medicine, has reviewed

pilot for an airplane. I have second and third cousins

many studies that show the link between manic

who are engineers and mathematicians.

depressive il ness and creativity. N.C. Andreason, at

At a recent lecture, Dr. Baron-Cohen described

the University of Iowa, found that 80% of creative

three bril iant individuals with Asperger’s Syndrome.

writers had mood disorders sometime during their

There was a bril iant physics student, a computer sci-

lives. A study of mathematical giftedness, conducted

entist and a mathematics professor. It is also likely that

at Iowa State University by Camil a Persson, found

Bil Gates has many Asperger’s Syndrome traits. An

that mathematical giftedness was correlated with

article in Time Magazine compared me to Mr. Gates.

being nearsighted and having an increased incidence

For example, we both rock. I have seen videotapes of

of al ergies. I recently attended a lecture by Robert

Bil Gates rocking on television. Articles in business

Fisher at Barrow Neurological Institute in Phoenix,

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The Official Autism 101 Manual

Arizona. He stated that many great people had

are my real thoughts, and language acts as a narrator.

epilepsy, including Julius Caesar, Napoleon, Socrates,

I narrate from the “videos” and “slides” I see in my

Pythagoras, Handel, Tchaikovsky and Alfred Nobel.

imagination. For example, my language narrator

For additional information on the links between

might say “I can design that.” I then see a video of the

abnormality and giftedness, refer to the reference list.

equipment I am designing in my imagination. When

the correct answer pops into my head, it is a video of

Types of thinking

the successful piece of equipment working. At this

point, my language narrator says, “I figured out how

There appear to be two basic types of thinking in

to do it.” In my mind there is no subconscious. Images

intel ectual y gifted people who have Asperger’s

are constantly passing through the computer screen

Syndrome or high-performing autism. The highly

of my imagination. I can see thought processes that

social, verbal thinkers who are in the educational

others have covered up with language. I do not require

system need to understand that the thought processes

language for either consciousness or for thinking.

of these people are different.

When I learned drafting for doing my design

The two types are the total y visual thinkers like

work, it took time to train my visual mind to make

me, and the music, math and memory thinkers

the connection between the symbolic lines on a

described in Thomas Sowel ’s book, Late Talking

layout drawing and an actual building. To learn this

Children. I have interviewed several of these people,

I had to take the set of blueprints and walk around

and their thoughts work in patterns in which there are

in the building, looking at the square concrete

no pictures. Sowel reports that in the family histories

support columns, seeing how the little squares on

of late talking, music, math and memory children,

the drawing related to the actual columns. After I

74% of the families wil have an engineer or a relative

had “programmed” my brain to read drawings, the

in a highly technical field such as physics, accounting

ability to draw blueprints appeared almost by magic.

or mathematics. Most of these children also had a

It took time to get information in, but after I was

relative that played a musical instrument.

“programmed,” the skil appeared rather suddenly.

Every thought I have is represented by a picture.

Researchers who have studied chess players state

When I think about a dog, I see a series of pictures

that the real y good chess players have to spend time

of specific dogs, such as my student’s dog or the dog

inputting chess patterns into their brains. I can real y

next door. There is no generalized verbal dog concept

relate to this. When I design equipment I take bits of

in my mind. I form my dog concept by looking for

pictures and pieces of equipment I have seen in the

common features that al dogs have and no cats have.

past and reassemble them into new designs. It is like

For example, al of the different breeds of dogs have

taking things out of the memory of a CAD computer

the same kind of nose. My thought process goes from

drafting system, except I can reassemble the pieces

specific pictures to general concepts, whereas most

into three-dimensional, moving videos. Constance

people think from general to specific. I have no vague,

Milbrath and Bryan Siegal at the University of

abstract, language-based concepts in my head, only

California found that talented autistic artists assemble

specific pictures.

the whole from the parts. It is “bottom up thinking,”

When I do design work, I can run three

instead of “top down thinking.”

dimensional, ful motion “video” images of the cattle

handling equipment in my head. I can “test run” the

Teachers and mentors

equipment on the “virtual reality” computer that is

in my imagination. Visual thinkers who are expert

Children and teenagers with autism or Asperger’s

computer programmers have told me that they can see

Syndrome need teachers who can help them develop

the entire program “tree,” and then they write the code

their talents. I cannot emphasize enough the

on each branch.

importance of developing a talent into an employable

It is almost as if I have two consciences. Pictures

skil . Visual thinkers like me can become experts in

180

Genius may be an abnormality — Temple Grandin, Ph.D.

fields such as computer graphics, drafting, computer

computer science department. If you see a person with

programming, automotive repair, commercial art,

a computer company name badge, approach him and

industrial equipment design or working with animals.

show him work that the person with autism has done.

The music, math and memory type children can

excel in mathematics, accounting, engineering,

Sell your work, not your personality

physics, music and other technical skil s. Unless the

student’s mathematical skil s are truly bril iant, I

Since people with autism and Asperger’s Syndrome are

would recommend taking courses in library science,

inept social y, they have to sel their work instead of

accounting, engineering or computers. Learning a

their personalities. I showed my portfolio of pictures

technical skil wil make the person highly employable.

and blueprints to prospective customers. I never went

There are few jobs for mediocre mathematicians or

to the personnel office. I went straight to the engineers

physicists.

and asked to do design jobs.

Since social skil s are weak, the person can make up

Another approach is to put up a web page that

for them by being so good at something that they wil

showcases work in drawing or programming. Freelance

be attractive as employees. Teachers need to council

work is real y great. It avoids many social problems.

individuals to go into fields where they can easily gain

I can go in and design the project and then get out

employment. Majoring in history is not a good choice

before I get social problems.

because obtaining a job wil be difficult. History could

There have been several sad stories where an autistic

be the person’s hobby instead of the main area of study

draftsman or technician has been promoted to a man-

in school.

agement position. It was a disaster that ended up in the

Many high functioning autistic and Asperger

person being fired or quitting. Employers need to rec-

teenagers get bored with school and misbehave.

ognize the person’s limitations. An excel ent draftsman,

They need mentors who can teach them a field that

commercial artist, technician or computer programmer

wil be beneficial to their future. I had a wonderful

may lose their career when promoted to management.

high school science teacher who taught me to use

These people should be rewarded with more pay or a

the scientific research library. Computers are a great

new computer instead of management jobs.

field because being weird, or a “computer geek,” is

People with autism and Asperger’s Syndrome need

okay. A good programmer is recognised for his/her

concrete, wel -defined goals at work. For example, the

skil s. I know several very successful autistic computer

job is to design a better speech recognition program.

programmers. A bored high school student could enrol

When one project is finished, they should be given

in programming or computer-aided drafting courses in

another project with a wel -defined goal. If too many

a local community col ege.

projects are thrown at them al at once, they wil

To make up for social deficits, the autistic person

become confused. Let the person with autism or

needs to become so good at their work that its

Asperger’s Syndrome finish the first project before

bril iance is recognized. People respect talent. They

he/she is given another. The projects can be real y hard

need mentors who are computer programmers, artists,

but they must have a wel -defined goal.

draftsmen, etc., to teach them career skil s. I often

get asked, “How does one find mentors?” You never

Teaching citizenship

know where a mentor teacher may be found. He may

be standing in the checkout line in a supermarket. I

Since people with autism and Asperger’s Syndrome are

found one of my first meat industry mentors when

emotional y immature, they must have basic morality

I met the wife of his insurance agent at a party. She

reinforced when they are smal children. When I was

struck up a conversation with me because she saw

little I was taught in a concrete way that hurting other

my hand-embroidered western shirt. I had spent

people, stealing and lying were bad. At age 8, I stole a

hours embroidering a steer head on the shirt. Post a

toy fire engine, and my mother made me give it back.

notice on the bul etin board at the local col ege in the

She told me “How would you like it if someone stole

181

The Official Autism 101 Manual

one of your model airplanes?” She also told me that

you do not hit other kids because I would not like

it if they hit me. It was the Golden Rule: “Do unto

others as you would want them to do unto you.” Some

Asperger’s Syndrome children and adults have done

some bad deeds because the basic rules were not taught

to them. I live a rule-based life and I have a rule system

I stil use today.

Anxiety problems

For many people with autism and Asperger’s

Syndrome, anxiety and nervousness is a major

problem. This is discussed in detail in my book,

Thinking in Pictures. Anxiety problems worsen with

age. My anxiety became unbearable in my early

thirties. It was like a constant state of stage fright. At

times, my nervous system was so aroused that I felt as

if a lion was stalking me, but there was no lion. I have

talked to several people with autism who quit good,

high paying jobs in graphic arts when anxiety and

panic attacks made going to the office impossible.

Many people with autism or Asperger’s Syndrome

need medication to control their anxiety. I have been

taking antidepressants for almost 20 years. My career

would have been ruined if I had not started taking

antidepressants to control my anxiety. I know many

autistic and Asperger adults that are taking Prozac or

one of the other Serotonin re-uptake inhibitors. People

need to be counseled that medications such as Prozac

can improve their lives.

The anxiety is due to biological problems in the

nervous system. Recent brain research is showing

that there is immature development in certain parts

of the brains of people with autism. Autopsies of

brains of people with autism show that there are

biological abnormalities which occur when the foetus

is developing. Antidepressant medication helps reduce

anxiety caused by biological problems in the nervous

system.

182

1. Andreason, N.C. 1987. Creativity and mental il ness prevalence rates in writers and first-degree relatives. American Journal of Psychiatry 144:

1288–1292.

2. Bailey, et.al 1998. A clinicopatholic study of autism. Brain. 121: 889–

908 (Brain Study).

1. Kemper, T., and Barman, M. 1998. Neuropathology of Autism. Journal

of Neuropathology and experimental Neurology. July, (Brain Study)

2. Cranberg, L.D., and Albert, M.C. 1988. The Chess Mind, In L.K Obler

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and D. Fein, Editors. The Exceptional Brain. Guilford Press New York.

Pp. 156–190.

3. Delong, G.R., and Dwyer, J.T. 1988. Correlation of family history and E

specific autistic subgroups: Asperger‘s syndrome and bipolar affective

disease. Journal of Autism and Developmental Disorders 18: 593–-600.

4. Gleik, J. 1993. Genius: Richard Feynman and modern physics. Little

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Brown, New York.

5. Grandin, T. 1995. Thinking in Pictures. Doubleday, New York. Now

published by Vintage Press Division of Random House.

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6. Grandin, T. 1995. How people with autism think. In: E. Schopler and

G.B. Mesibov Editors. Learning and Cognition in Autism. Plenum Press,

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New York.

7. Grant, A. 1885. Charles Darwin. Appleton, New York.

8. Grant, V.W. 1968. Great Abnormals. Hawthorn, New York.

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9. Highfield, R. and Garter, P. 1993. The private lives of Albert Einstein.

St. Martin‘s, New York.

10. Kevin, G. 1967. Inspired Amateurs. Books for Libraries Press, Freeport, N

New York.

11. Kincheloe, J.L., Steinberg, S.R., and Tippins, D.J. 1992. The Stigma of Genius. Hol owbrook, Durango, Colorado.

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12. Landa, R., Piven, J., Wzorek, M.M., Gayle, J.O., Chase, G.A., and

Folstein, S.E. 1992. Social language use in parents of autistic individuals.

Psychological Medicine 22: 245–254.

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13. Milbrath, C., and Siegol, B. 1996. Perspective taking in the drawings of a talented autistic child. Visual Arts Research, School of Arts and Design, University of Il inois, Urbana, Il inois USA. Pp22: 56–75.

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14. Myerson and Boyle. 1941. The incidence of manic-depressive psychosis in certain social y prominent families. P. 20. In K.R. Jamison, 1993.

Touched with Fire. The Free Press, New York.

15. Narayan, S., Moyer B., and Wolff, S. 1990. Family characteristics of autistic children: a further report. Journal of Autism and Development

Disorders 20: 523–535.

16. Pais, A. 1994. Einstein lived here. Oxford University Press, New York.

17. Patten, B.M. 1973. Visual y mediated thinking: a report of the case of Albert Einstein. Journal of Learning Disabilities 67: 15–20.

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20. Sowel , T. 1997. Late Talking Children, Basis Books, Division of Harper Col ins, New York.

REFERENCES

184

The Strongest Urge of All

Contributing Author Karen Simmons Sicoli, CEO, Autism Today—Karen Simmons is a mother of six and the author of Little Rainman, a story of autism told through the eyes of her son and co-author of forthcoming

“Chicken Soup For The Soul” book surrounding exceptional needs. A gemologist by trade, Karen shifted gears to working full time in the autism community after a near-death experience. She is the founder of AutismToday.com and is active worldwide in promoting a deeper and more personal understanding of autism and Asperger’s Syndrome. She makes her home in Sherwood Park, Alberta Canada.

Resources and links—Karen L. Simmons, CEO, Author suggests visiting her Autism Today website to learn about her other products and services: Visit: < http://simmons.autismtoday.com> today! (*Please note, don’t put in the www).

Once again, my three-year-old Jonathan refused

instructions and hummed out loud. This doctor also

to walk, and I was forced to drag him across a

suspected autism and recommended us to another

busy street to keep an appointment with an autism

psychiatrist.

specialist. It was an appointment that I was sure would

So off we went, and thank God we did. The next

be a waste of time, as nothing was wrong with my

doctor recommended and found a placement for

son Jon. As usual, his tantrum was getting unwanted

Jonathan in an Early Intervention Program. But even

attention from other people, and I was subjected to

so, I stil needed reassurance of the diagnosis and went

the stares that implied I couldn’t control my child.

to another specialist just to make sure. It was when the

I was used to people reacting this way to Jonathan’s

last doctor confirmed the fact that I was final y able to

moods. Heaven knows even some members of my own

accept the reality of Jonathan’s disorder.

family didn’t understand how special he real y was and

It was winter 1993 when I placed him into a

often gave me wel -intentioned but useless advice.

neighborhood school Early Intervention Program that

Maternal love can often be a blinding emotion.

is designed to help special needs children during the

My continued reluctance to accept the fact that there

first years of their lives. Therapies, there, focused on

might be something wrong with Jonathan merely

enhancing speech, communications interaction, fine

added fuel to my frustration. I was confident that he

and gross motor movement, sensory stimulation and

was an exceptional y bright child, as he had begun

physical therapy. A bonus of this program was that

reading at the young age of two and his first word

the ratio of teachers was three for every eight students.

wasn’t the usual “Mommy” or “Daddy,” but “recycle.”

Final y, Jonathan was going to get everything he

For an hour, the doctor asked Jonathan a battery

needed, and I could expend some of my energies on

of questions and then said he might have Pervasive

other family members.

Developmental Disorder: a fancy name for what

My husband Jim and I had five children and this

would later be termed “autism.” Because he was so

made for a busy household and a ful life. Kimberly

young, a definite diagnosis would not be possible. The

was eight, Matthew seven, Christina six, Jonathan, and

doctor told us to go home and to come back in a year.

baby Stephen who was only 19 months old. And just

A year! Wait for a year? I knew enough about PDD

when you think things have settled down, God gives

to know that early diagnosis and treatment during the

you another blessing. I became pregnant with our sixth

formative years was crucial. So I immediately sought

child.

a second opinion. The next doctor gave Jon tests and

I had never experienced difficulties with any of

also observed his actions. Jon would spin around

my previous pregnancies. So I continued on with my

in circles, couldn’t sit stil , wouldn’t fol ow simple

hectic schedule. In addition to raising the children,

185

The Official Autism 101 Manual

I had started attending conferences on autism, ever

got the test results. The good news was that it was not

hopeful that somewhere would be a cure and maybe

a brain tumor; the bad news was Alex had cerebral

this whole thing would go away. Again, this was my

palsy. I felt like vomiting. No brain tumor? I hadn’t

maternal urge and a mother’s unrealistic hope for a

even thought of that and had felt sure al the tests were

miracle.

going to be negative. I was in shock about the cerebral

Our son Alex, born on April 18, 1994, wasn’t even

palsy, though. Not one but two children with special

named for three weeks, but was just known as “Baby

needs. Life just wasn’t fair.

Sicoli.” That was because I had not recovered wel from

I went home and cried my eyes out. But after a

the birth and spent three weeks in a coma in intensive

while I realized that for the sake of everyone, I had

care, surviving five major surgical procedures and

to get on with things. Even though I couldn’t see

care from 20 doctors. At times there was doubt that

it, I kept tel ing myself there’s always a good side to

I would survive, and I had received last rites. But the

everything.

doctors’ skil s, combined with the prayers of relatives,

Soon Alex and I began the same journey I had

friends and members of prayer groups that I had never

taken with Jonathan: one doctor after another; one

met, saved my life.

test after another. And again, we had more sad news.

While it may sound funny, there was another event

I had picked up Alex’s CT scan from one hospital and

that gave me that final boost of energy to recover.

carried it with me to a brain specialist the fol owing

Jim came into my hospital room and, through a fog,

day. After examining Alex he said, “I don’t know why

I heard him say, “Don’t worry, honey, I’l take care

you’re here, there doesn’t seem to be anything wrong

of the kids.” How could he do that and manage the

with this child.” “Did you see the scan?” I asked.

family business, not to mention al the things Jonathan

He hadn’t. He and an intern then viewed it in the

required? This time my maternal urge was a positive

examining room with me and I heard him mumble.

emotion that drove me up out of that hospital bed. To

“See this groove here, and this one here, you could

this day, many people refer to me as the Miracle Lady.

drive a truck through it.” I wondered what on earth he

It was a joyous moment when I was able to hold

was talking about.

Alex for the first time. Al the children came to visit

Final y he turned to us and said, “CP is the least of

and after their initial awkwardness about al the tubes

your problems. You wil have to watch Alex careful y

and the breathing machine, they climbed aboard and

and you won’t be able to be sure til he’s five but he

I gave them wheelchair rides. They were eager for me

may have major delays. It doesn’t look good.” I was

to come home and young Stephen even tore the “Sic”

devastated and his style didn’t give me any kind of

off my Sicoli wristband in an effort to show that I was

reassurance. I stil think some doctors should be

wel and ready to leave.

required to take a “Bedside Manners When Dealing

The homecoming was a nervous time for me. I

with Patients and Parents” course. It’s a course I know

couldn’t walk and stairs were out of the question. Six

many of us would love to help instruct.

months were to pass before the tube from my kidney

Without my real y realizing it, my life had now

was removed. At the same time as this happened,

become very ful . In addition to raising the children,

another milestone event slammed into our lives.

I was helping with our family business and attending

My mother had noticed that baby Alex’s eyes

numerous conferences relating to autism, cerebral

“jiggled” and she was also worried that he couldn’t

palsy and services for children. It was at one of these

support his weight on his little legs. I real y didn’t

conferences that a new focus entered my life. What

think it was a big deal but I made an appointment

was said by a 12-year-old autistic boy, a speaker at

with our pediatrician so that it could be checked.

the conference, struck a nerve in both my heart and

Once again, my maternal urges were protecting me

my soul. “I wish I would’ve known about my autism

against a possible problem.

earlier. Everyone else knew,” he said.

Our doctor did a thorough examination including

I was fil ed with resolve that this wasn’t going to

a CT scan and while we were stil at the hospital we

happen to Jonathan. It was his life, and he deserved

186

The strongest urge of all — Karen Simmons Sicoli, CEO

to know everything about it. I began to search for a

Alex’s doctor says his brain scan shows the typical

book that would tel him what he needed to know but

image of someone who is severely crippled and most

I came up empty. No such book existed. So with my

likely has been confined to a wheelchair. Not that

usual single-mindedness, I proceeded to write one. To

that life is always dreadful. I have the good fortune of

my delight a publisher accepted the story and Little

knowing a local newspaper writer who has cerebral

Rainman was born. It was a surprise announcement

palsy and his life is very rich. I was thril ed when he

for Jim as I had kept that book a secret. He was stil

took the time to write a delightful article about Little

having trouble accepting Jonathan’s autism. Every day

Rainman.

he would come home and say, “Is Jonathan OK?” He

I never anticipated the overwhelming response to

kept hoping Jon would just snap out of it one day.

my book and I have been told that it is changing the

Little Rainman took off and, aside from its

way autistic people are viewed. It demonstrates that

original y intended audience (children with autism),

they too, want and need to be loved. They do appear

it is being read by friends, relatives and teachers of

distant and uncaring at times, but this is because

autistic children. The publisher, Future Horizons,

autism is a sensory and communication disorder. The

says: “Little Rainman gives a more simplistic, yet

very thing they have a hard time with, communication

comprehensive explanation of this strange disorder

and their lack of social skil s, blocks the amount of

than any other book we have seen.” Those kind words

love they receive. But love, once given, is returned a

mean the world to me. They validated my labor of love

hundredfold. It would be my hope that these words

for Jonathan.

wil be the spark to ignite other mothers to write and

As I write this, Jonathan is doing fine. Yes, he’s stil

share their life experiences as they deal with their

autistic. He goes to a regular school, and we certainly

children and their own strong maternal urges.

have our moments. His latest “accomplishment” is that

In July of 1996, before the book was printed, I

he has learned to lie. Most children pick this talent

started the Key Enrichment of Exceptional Needs

up earlier in life. A recent example was when he told

Foundation (KEEN), in Sherwood Park, Alberta. The

his aide that he had a tummy ache and didn’t want to

purpose was to assist people with exceptional needs

go play. Then he went to his teacher and said, “I told

to become the best that they can be. To this end we

my aide I had a tummy ache so I wouldn’t have to go

provide funds towards existing programs, equipment,

play.” The teacher told the aide what he had said. She

services, and therapies. An important intent of the

said, “Jonathan, a little ‘birdie’ told me that you didn’t

foundation is to help enrich the lives and minds of

want to go play, so you told me you had a stomach

parents, siblings, educators of special needs children

ache. Is this true?” Jonathan said, “Teacher doesn’t

and of course . . . special needs children.

have feathers!” With true mother’s bias, I view this as

In my own case, taking the knowledge I have

an example of wit and humor.

gained from Jonathan and Alex and applying it to

In a couple of months, Alex is going into the same

others has certainly enriched my life. I am now thril ed

Early Intervention Program that Jonathan attended.

to be distributing al Future Horizon’s books on

At his orientation day, the teacher was so impressed

autism across Canada in the hope that this wil raise

with his progress that she suggested he might be able

autism awareness and promote diagnosis at the earliest

to start in the advanced class. This made me very

possible age. This, along with many public speaking

happy and made the time I have spent enriching his

engagements to different groups about autism and

program over the last two years very worthwhile. He

special needs, continues to keep my life ful and

is just beginning to speak and we cal him our little

meaningful.

miracle baby. He walks, runs and even climbs al over

I thank God daily for my life and for my loving

everything. Not that I would ever complain about

and compassionate husband, parents and friends.

his high level of activity, I consider it a blessing. He

He has given me six wonderful children, including

had his first seizure last winter and it scared the living

the two who have special needs. My own words are

daylights out of us. I pray that it wil not be repeated.

inadequate to describe al they have taught me about

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The Official Autism 101 Manual

love and acceptance. Who would have guessed, a single

gemologist jewel er, in ten short but ful years, would

become a mother of six, almost die, write a book and

start a foundation. My life, although chaotic at times,

is real y about living with what God has given me.

They say that view of life determines whether your

glass is half empty or half ful . . . like my maternal

urges and love, my cup runneth over!

188

I Am . . . for Mothers of Children with Disabilities

Contributing Author Michelle M. Guppy is listowner and facilitator of Texas Autism Advocacy at

< www.TexasAutismAdvocacy.org> Michelle is an inspirational writer who currently writes a “Life Lessons”

article for Special Education Today—a publication of LifeWay, Inc. Michelle lives in Houston, Texas with her husband Todd and two sons, Matthew and Brandon. Brandon has autism. Michelle has teamed up with Steven Knox of Boundless Creations to sell disability/autism awareness notecards and prints featuring the poem “God’s Beautiful Butterfly.” They can be ordered by contacting < BoundlessCreations@yahoo.com> or through the website <www.BoundlessCreations.biz> (Click on “Notecards with Poetry.”) Resources and links—Michelle M. Guppy suggests visiting her Autism Today website to learn about her other products and services: Visit <http://guppy.autismtoday.com> today! (*Please note, don’t put in the www.) You can contact Ms. Guppy at <MichelleMGuppy@yahoo.com> or at her web site for parents in Texas:

< www.TexasAutismAdvocacy.org> .

I am the mother of a child who has special needs. I time alone in the bathroom. I have bags under my am the little engine that did. When on my journey

eyes from staying up al night with my child. The only

in life my tracks led me to a mountain—a diagnosis of

exercise I get is the sprint from my house to my car, to

autism, or CP, or MR, or a similar disability—I have

take my child to therapy. “Dressed up” to me is, wel

looked at it with defeat, thinking there was no way

. . . just that I had a moment to get dressed! They say

I could climb over it. I then pondered the obstacle

that beauty is in the eye of the beholder. So even on

before me, and I then said to myself over and over, “I

the days when I don’t feel very beautiful, I wil know

think I can, I think I can . . . .” Then I slowly started

that I am beautiful because God is my beholder.

climbing the mountain. saying to myself over and over,

I am the Bionic Woman. With my bionic vision, I

“I know I can, I know I can . . . .” and I made it over

can see through the disability my child has, to see the

that ominous diagnosis and continued my journey. I

beauty in his soul, the intel igence in his eyes, when

am the little engine that did.

others can’t. I have bionic hearing. I can look at my

I am more devoted than Noah’s wife. I sometimes

child when he smiles at me, and hear his voice say, “I

feel overwhelmed in my “houseboat,” 365 days and

love you, Mommy,” even though he can’t talk. Yes, I

365 nights a year, constantly working with and

am thankful to be Bionic.

teaching my child. But when the storms of isolation

I am Mary. I am a not-so-wel -known mother of a

and monotony become most unbearable, I do not

special needs child who was brought here to touch the

jump ship. Instead I wait for the rainbow that is

souls of those around him in a way that wil forever

promised to come.

change them. And it started with me by teaching me

I am Xena, real life warrior goddess of Autism.

things I would never have known, by bringing me

With my steel-plated armor I can battle anyone

friendships I never would have had and by opening

who gets in the way of progress for my child. I can

my eyes as to what real y matters in life. He has shown

overcome the stares and ignorance of those with no

me things like the Joy of just living in the moment, the

experience of disability in their lives and educate them

Peace of knowing that God is in control, never losing

as to why my child is the way he is and why he does

Hope, and knowing an unconditional Love that words

the things he does. With my sword of persistence, I

cannot express. Yes, I too am blessed by a special child,

can battle the schools to have them properly educate

just like Mary.

my child. Yes, I am Xena—and I am prepared for any

I am Superwoman. I am able to leap over tal loads

battle that might come my way.

of laundry in a single bound and run faster than a

I am beautiful. I have hairy legs because I get no

speeding bul et, to rescue my child from danger. Oh

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The Official Autism 101 Manual

yes, without a doubt, I am Superwoman.

chal enge and have God-given endurance to last until

I am Moses. I was chosen to be the mother of a

the end, along with a sense of humor to cope with al

special needs child. I may at times question whether

the twists, turns and surprises along the way. Oh yes,

I am the right person for the job, but God wil give

I am a true “Survivor”—and I don’t need to win a

me the faith I need to lead my child to be the best he

mil ion dol ars to prove it!

can be. And like Moses, God wil give me the smal

I am a mom of a special needs child, al the above,

miracles, here and there, needed to accomplish my

and so much more. Some days I wil want to be none

mission.

of the above and just be a typical mom with a typical

I am Stretch Armstrong—the mom who can be

child, doing typical things. On those days I wil know

stretched beyond belief—and stil somehow return

it’s okay to be angry, and to cry and to lean on my

to normal. I can stretch limited funds to cover every

family, friends and church for support, because after al

treatment and therapy that insurance won’t cover. I can

most importantly I am human.

stretch my patience as I bounce from doctor to doctor

And on this day, and any other day I feel the need,

in a quest to treat my child. I can stretch what time

I wil read this as a reminder of just who it is that I am.

I have, and share it with my husband, my children,

my church—and stil have some left over to help my

For permission to reprint this article, please contact

friends. Yes, my name is Stretch. And I have the stretch

<MichelleMGuppy@yahoo.com> or call her at 281-686-0103.

marks to prove it!

I am Rosa Parks. I refuse to move or waver in

what I believe is right for my child in spite of the fact

that my views are among those of the minority, not

the majority. I refuse to accept the defeatist question,

“What can one mother do?” Instead, I wil write, cal

and ral y before the government, if I have to, and do

whatever it takes to prevent discrimination against my

child and to ensure he gets the services he needs.

I am Hercules, the Greek god known for strength

and courage. The heavy loads I must carry would make

others crumble to the ground. The weight of sorrow,

fear of uncertainty of the future, injustice at having

no answers, and the tears of despair, would alone pos-

sibly be too much, even for Hercules. But then the joy,

laughter, smiles and pride at my child’s accomplish-

ments balance the load and make it easy to bear.

I am touched by an Angel, an Angel who lives in

a world of his own. And it’s a fact. He lives in a world

of innocence and purity, a world without hatred or

deceit. He lives in a world where everyone is beautiful

and where no one is ugly, a world where there is always

enough time. He lives in a world where he goes to bed

with no worries of tomorrow and wakes up with no

regrets of the past. Yes, I most certainly am touched by

an Angel, and in some ways his world is better.

I am a true “Survivor.” I am the mom of a child

who has faced, is facing and wil face some of the most

difficult chal enges life has to offer. I am ready for the

190

Chapter 17: Treatment methodologies

and therapies

Treatment methodologies

and therapies

CHAPTER 17

191

Medication management in Asperger’s Syndrome and high

functioning autism: General guidelines

Contributing Author Keith McAfee, MD (university)—My comments in this chapter are derived from sections I wrote in a chapter co-authored with my wife Jeanette McAfee, MD, in an upcoming book entitled A Team Approach to Asperger’s Syndrome: A Guide for Parents and Professionals, edited by Kate Sofronoff and Tony Attwood, to be published by Jessica Kingsley Publishers. Permission granted by publisher.

Resources and links—Keith McAfee, MD suggests visiting his Autism Today website to learn about his other products and services. Visit: < http://kmcafee.autismtoday.com> today! (*Please note, don’t put in the www.) Introduction

asked to write about traditional medications, I wil

T

confine my comments to that subject.

he role of medications must be properly understood

When discussing the care of patients on the autism

in the broader context of the physician’s role in

spectrum, few issues are as controversial as the use

caring for a patient with AS/HFA. Indeed, even

(or not) of medications. Opinions range from an

when used to treat several conditions, medications

absolute aversion to any medicines whatsoever to the

represent only a smal part of the overal management

opposite extreme in which every problem should be

of an individual patient’s medical care. In many cases

treated by a “magic pil .” Of course, as in most things

medications are not indicated at al . (Many of my

in life, the truth lies somewhere in between. That

patients with AS/HFA take none whatsoever.) In other

being said, there should be an underlying assumption

situations (as is true of many of my other AS/HFA

and fundamental bias that medications are not to be

patients), medications can literal y turn a patient’s life

used unless a condition or behavior arises that truly

around for the better. The important point is to see

warrants their use. In other words, the burden of proof

medications as just one tool among many (nutritional,

should always be placed on the physician to justify the

behavioral, social, etc.), and neither to rely too heavily

need for any specific medication. On the other hand,

upon them nor refuse them altogether.

if and when such treatable conditions are recognized—

In this short chapter, I wil first focus on general

as they frequently are—then withholding medications

guidelines for the appropriate use of medications

does not serve the best interests of the patient. As in al

in AS/HFA. I wil then briefly review the major

things, there must be a balance.

categories of some of the commonly used medications

Holding the above general ideas in mind, the fol-

in patients with autism. A comprehensive review of

lowing is a list of general guidelines regarding appro-

al available medications is wel beyond the scope of

priate use of medications in patients with AS/HFA.

this article, but there are several excel ent textbooks

that can provide that information. Of note, I wil

not address the issue of vitamins or other alternative

General guidelines

approaches in the treatment of autism (such as in the

Medications do not treat autism per se. Autism spec-

DAN! protocol), as the subject is quite wide-ranging

trum disorders are caused by abnormalities in the

and could not possibly be adequately covered here. I

structure and function of neurons in the brain—they

wil , however, note that when addressing the perceived

are not primarily behavioral or mood disorders. No

controversy between traditional medications versus

medication has yet been shown to correct these struc-

alternative treatments, I personal y reject the notion

tural neurological deficits. As of this date, if you come

that it should be an “either/or” proposition. A “both/

across a medical provider who tries to treat the core

and” approach is far more appropriate and confers the

autism deficits with medicines, run for the hil s.

best of both worlds. Nevertheless, since I have been

Although autism itself is not treated by medica-

192

Medication management — Keith McAfee, MD

tions, there are many comorbid conditions—the techni-

or even rare. (Medications that have frequent serious

cal medical term for other diagnoses that can coexist

problems are usual y taken off the market or are used

with autism in an individual patient—that might be

only in specialized care centers for the most gravely

present in a person with autism and are often very

il patients.) However, just because a medication can

responsive to medications. The rationale for treating

cause a significant side effect does not mean that it

these coexisting conditions is as fol ows. Imagine that

necessarily wil cause one. This is a crucial distinction,

you are a person on the autism spectrum. You face a

and I have personal y heard even some influential lead-

formidable task of trying to cope with core deficits

ers in the field of autism not recognize the difference.

in the areas of social, emotional and communication

As an example: certain mood stabilizers can cause

skil s, and of learning how to live in an often-hostile

weight gain and can even lead to diabetes (but only

world that you do not easily understand. This task is

if not adequately monitored by a physician—and it

extremely chal enging even in the best of circumstanc-

takes at least many months for this to happen). Pre-

es (i.e., if you are in perfect health with nothing else

venting this complication is quite easy if the patient is

wrong with you) and it uses a remarkable amount of

seen at regular intervals with weight checks, possibly

energy even if you have no other diagnosis that would

with lab tests, etc. So the problem should not happen

make the task more difficult. Now imagine that you

if the physician is doing his or her job wel . In terms

also suffer from significant depression or AD/HD or

of benefit to the patient, those medications can have

chronic insomnia or a very suboptimal diet or mood

powerful y positive effects in stabilizing (i.e., improv-

instability, none of which you can control through

ing and giving the patient control over) otherwise un-

wil power. Your formidable task now becomes al but

control able mood swings. I have witnessed some very

impossible and your stress level and sense of discour-

dramatic improvements in the lives of some of my pa-

agement (or even failure) wil skyrocket. This is a

tients from these medications, with exuberantly grate-

recipe for disaster. In this context, medications can be

ful parents complimenting the medication’s worth.

remarkably beneficial. If they can eliminate the symp-

And if, as rarely happens, early signs of trouble become

toms of the comorbid conditions (e.g., you are no lon-

evident (e.g., weight gain, etc.), then the medication

ger depressed, you can concentrate, you get good sleep,

can be stopped without problem and another medica-

you eat a wide-ranging and healthy diet, you are not

tion or approach can be taken. However, to not even

tossed around and getting in trouble because of your

consider such medications because someone assumes

uncontrol able temper, etc.), then you have a fight-

that they “wil ” cause rather than “can” cause diabetes

ing chance of learning to remediate your core autistic

would be to miss a potential y life-changing treatment.

deficits. In a sense, then, the medications are simply

In similar fashion, just because driving a car “can” lead

“leveling the playing field.” As such, they can be a tre-

to an accident does not mean that it “wil .” If you need

mendous gift.

to get somewhere and if it is worth the smal risk (and

In keeping with the above, medications should be

it usual y is), then drive on. Just be careful.

careful y targeted. When used in “shotgun” fashion,

When deciding on medication doses, “start low,

medications can be detrimental. When used like a

go slow” should be the rule. Individuals with AS/HFA

rifle, they can work wel . The key is to target a specific

can be quite sensitive to medications, and lower doses

medication for a specific condition.

are frequently indicated. However, rules in medication

The assumption in any use of medications is

management are rarely absolute, and higher doses can

that there should be no significant side effects.1

be necessary.

And a patient with AS/HFA should never be given

Use as few medications as possible. However, two

medications for the purpose of just “dul ing them

or three medications targeted to specific symptoms

down” to keep them out of trouble.

and given at the lowest effective doses are usual y

Any medication can have potential y serious side

better than one medication at a higher dose, since

effects—some more likely than others—but those

lower doses often yield excel ent results with fewer side

serious complications are usual y quite uncommon

effects.

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The Official Autism 101 Manual

Comorbid conditions that can be

mood stabilizer that does not cause those side effects

associated with AS/HFA and that are

wil be chosen (ideal y one which might even energize

amenable to medication usage

the patient or cause less of an appetite). This choice

of medications can be as much an art as a science and

(Not an exhaustive list)

necessitates a familiarity with the various options, since

• Insomnia

each individual patient can respond so differently,

• Appetite problems: excessive, lack of, restricted

unpredictably and even paradoxical y to any one

• Anxiety

medication.

• Depression

• Attention deficit/hyperactivity disorder

SSRI’s (selective serotonin

(AD/HD)

reuptake inhibitors)

• Obsessive Compulsive Disorder (OCD)

These include citalopram, escitalopram, fluoxetine,

• Bipolar disorder

fluvoxamine, paroxetine, and sertraline. Very useful in

• Psychosis

depression, OCD, and other anxiety disorders, these

• Tic disorders (e.g., Tourette’s)

medications are commonly used in patients with AS/

• Seizure disorder

HFA. Efficacy is general y comparable within the class

as a whole.

Frequently used medications for

comorbid conditions in patients with

SNRI’s (serotonin-norepinephrine

AS/HFA

reuptake inhibitors)

These include venlafaxine and duloxetine. Mirtazapine,

It is not feasible here to provide a comprehensive

although not strictly an SNRI in the same way as the

review of al relevant psychotropic medications or of

other two drugs, also has dual effects on serotonin

their varied indications,2 risks, drug interactions, side

and norepinephrine. These three medications share

effects, etc. Moreover, given the rapid development of

the advantages of SSRI’s in terms of serotonin effects

newer treatment regimens, such a review would soon

to improve depression and anxiety, but also have

become obsolete. However, a brief summary of the

norepinephrine effects that can treat fatigue, lack of

major medication categories (at least those available

motivation and anhedonia.

in the United States) and of their usefulness in AS/

HFA is in order. Remember that medications do not

Tricyclic antidepressants (TCA’s)

treat AS/HFA per se and should only be used to treat

Although no longer first line because of their side

specific symptoms belonging to specific comorbid

effect profiles and potential y dangerous cardiac

diagnoses.

toxicity, TCA’s occasional y can be very helpful in

One further note: within each category there are

certain situations (e.g., clomipramine for OCD). Used

usual y several medications from which to choose. For

judiciously in select patients, TCA’s can work very

the most part (with a few exceptions), the medications

wel . Some physicians would classify TCA’s as older

within each category are relatively similar in efficacy.

versions of SNRI’s.

Which medication to select is therefore often based

upon its desired side effects. To il ustrate, let’s assume

Bupropion

that an AS/HFA patient has marked mood instability.

A norepinephrine-dopamine reuptake inhibitor used

If that patient happens also to be underweight from a

mainly for depression, but with special effectiveness

poor appetite or have chronic insomnia, the physician

against anhedonia (lack of motivation and interest)

wil select a medication that wil not just work on the

and fatigue, this is also helpful in some patients with

mood disorder but wil also cause improved sleep and

AD/HD.

better appetite. If, on the other hand, that patient

tends to sleep too much or be overweight, then a

194

Medication management — Keith McAfee, MD

Stimulants

dopamine antagonists alone) and clinical y because

These include methylphenidate, d-amphetamine

they have a low incidence of causing extrapyramidal

and l-amphetamine compounds. Contrary to their

symptoms (involuntary movement disorders from

undeserved reputation from some quarters, these

the medications). This class includes aripiprazole,

medications are very safe and can be remarkably

clozapine, olanzepine, quetiapine, risperidone and

beneficial in AS/HFA patients with concomitant

ziprasidone. (Clozapine, with its serious side effect

AD/HD. Stimulants completely leave the body by the

profile, is essential y never used.) These medications

end of the day (if not sooner), so there is no residual

represent a very effective class of medications, having

medication around by the next morning to help with

many advantages. They are particularly helpful in

getting ready for the day. This can be advantageous

comorbid bipolar disorder, in mood stabilization

for those who worry about drug accumulation, but it

in general, in reducing impulsivity and aggressive

can be frustrating for those who need medication just

or self-injurious behavior, and in psychosis. The

to get organized. In a sense, you have to start al over

atypical neuroleptics can also augment other agents

again, each and every morning.

in treatment-refractory OCD or anxiety. In addition,

some of their side effects can actual y be advantageous.

Atomoxetine

For example, the sedation and appetite stimulation of

Very useful in AD/HD. Because of its longer

olanzepine and risperidone can be helpful in patients

duration (usual y 24-hour effectiveness), it avoids

with insomnia and restricted food intake. (Both

the typical “peaks and val eys” of the stimulants.

symptoms are common in AS/HFA.)

Can be used simultaneously with stimulants (a

fact often overlooked). Although sometimes not

Lithium

sufficiently potent as a solo medication for AD/HD,

Wel -documented efficacy as mood stabilizer, but with

atomoxetine can be excel ent as a first line AD/HD

higher incidence of potential y serious side effects.

drug. If stimulants are needed concomitantly, much

Therefore, not general y first line.

lower doses of stimulants are general y required.

(For instance, imagine that atomoxetine is only

Anxiolytics

50% effective in treating the hyperactivity or poor

The SSRI’s and SNRI’s are now considered first-line

concentration of a child with AD/HD. Then only

agents for anxiety disorders. Mirtazapine, with its

about 50% as much stimulant medication wil be

serotonin and norepinephrine effects, has similar

needed the next day—thus avoiding a big “peak and

efficacy. Tiagabine, a GABA reuptake inhibitor is also

val ey” effect that day—and the person with AD/HD

very helpful. Benzodiazepines, although very effective,

wil have at least a moderate amount of organizational

are not as commonly used because of their potential

skil s each morning with which to start the day. This

for addiction, and they general y should not be first

can be a distinct advantage, especial y for families with

line agents.

multiple children getting ready for school.)

Sleep medications

Alpha 2 adrenergic agonists

“Sleep hygiene” should always be the first treatment

These include clonidine and guanfacine, both of which

for insomnia, but it is often insufficient. In terms of

have some benefit in the inattentive component of

medications, trazodone is very helpful, although it

AD/HD. Clonidine can also help with insomnia.

can cause morning sedation (and priapism in males).

Zolpidem and zaleplon are shorter acting (which

Atypical neuroleptics

is sometimes a disadvantage) and are very effective.

(atypical antipsychotics)

Eszopidone is the newest member of this category,

Cal ed “atypical” pharmacological y because they

lasting slightly longer than Zolpidem and zaleplon.

are serotonin-dopamine antagonists (rather than

Clonidine, mirtazapine and some of the atypical

neuroleptics have sedation as a side effect and, if

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The Official Autism 101 Manual

appropriately indicated for other symptoms, can be

Notes

used for insomnia.

1Any medication (even Tylenol) can have some sort

Anticonvulsants

of side effect in someone somewhere. The ideal when

These include valproic acid, carbamazepine,

treating a patient, of course, is to not cause any side

lamotrigine, gabapentin, and topiramate. Obviously

effect at all, and that is often achievable. However,

indicated if a seizure disorder is present. Quite

if a comorbid condition is significant enough to

diverse and varied in their usefulness for other issues.

really interfere with an autistic person’s ability to

Gabapentin can help with insomnia (actual y is one

function and learn, then a minimal amount of side

of the medications with the least detrimental effect

effects (such as, for example, a slightly faster heart

on the sleep cycle). Valproic acid is very effective for

rate or perhaps slight hand shaking) might be worth

mood instability, insomnia and poor weight gain.

tolerating. I have had many patients and their family

Lamotrigine and topiramate can help stabilize mood,

members who have emphatically requested that a

with topiramate having the beneficial side effect of

medication be continued despite mild side effects,

weight loss in some patients (or, at least, stopping

because the patient’s life was so dramatically improved

weight gain if other appetite-stimulating medications

with that medication.

are unavoidable).

2Most psychotropic medications, with few exceptions,

have not been extensively studied in children and

have not received official indications for pediatric

patients from the governing medical authorities for

the treatment of the comorbid diagnoses discussed

in this chapter. Even for adults, these medications

have only certain limited official indications. Further

complicating the situation, the allowed indications

often vary between countries. Consequently virtually

all psychotropic medications, by necessity, regularly

are used “off-label.” My discussion in this section is

not intended as a recommendation for any specific

medication for any particular condition, but rather is

meant to reflect current common medical practice.

As an example, fluoxetine (called Prozac in the

USA) tends to be taken in the morning because it is

generally an “activating” medication. However, when

my HFA daughter took it years ago, she had to take it

in the evening because it made her so sleepy. Of note,

she suffers from severe and chronic insomnia, so the

sedation from fluoxetine was a welcome side effect at

the time.

196

Evaluating the effects of medication

Contributing Author Temple Grandin, Ph.D., Animal Science, University of Illinois—One of the most worlds most accomplished and well-known adults with autism, Dr. Grandin is a prominent speaker and writer on this subject. In her book, Thinking in Pictures, Dr. Grandin delivers a report from the country of autism. Writing from the dual perspectives of a scientist and an autistic person, she tells us how that country is experienced by its inhabitants and how she managed to breach its boundaries to function in the outside world. What emerges documents an extraordinary human being, one who gracefully and lucidly bridges the gulf between her condition and our own. Dr. Grandin is also a gifted scientist who has designed livestock handling facilities used worldwide and is an Associate Professor of Animal Science at Colorado State University.

Resources and links—Temple Grandin, Ph.D. suggests visiting her Autism Today website to learn about her other products and services. Visit < http://grandin.autismtoday.com> today! (*Please note, don’t put in the www.) You can learn more about Dr. Grandin and her work at < www.grandin.com> .

When a medication is being evaluated to modify have an obvious and dramatic effect. One of the best the behavior of a person with autism, one

ways to evaluate a medication is a blind evaluation. A

must assess the risks versus the benefits. The benefits

simple way to do this is to start the medication and

of the medication must outweigh the risks. Some

do NOT tel the teacher at school. If the teacher says

medications can damage the nervous system and other

“Wow, your son’s behavior has improved remarkably,”

internal organs, such as the liver. These risks may

then you know that the medication works. To evaluate

be greatest in young children because an immature

a medication, it is important that the other therapies

nervous system may be more sensitive to harmful

are not changed at the same time. Change only one

side effects. A good general principle is that the use of

thing at a time, so that you can see the effect of what

powerful drugs should be avoided in young children

you have changed. A new medication cannot be

when the risk is great. The younger the child the

properly evaluated if the child goes to a new school

greater the risk. For example, it would be justified to

around the same time that the medication is tried.

give a young child Prozac to stop severe self-injury,

If a medication does not show enough benefit to

but it would probably not be justified if the only effect

outweigh the risk, you should discontinue using it.

was that it made him slightly calmer. If a medication

Medications should work. If the change is not obvious

improved language, its use would probably be

and is not dramatic, it probably is not worth giving

recommended.

the medication. It is also important to start only

The brain of a teenager or an adult is ful y formed,

one medication at a time so that its effects can be

so that medications pose less risk. Many teenagers and

evaluated.

adults with autism may benefit from Prozac or Zoloft.

Many people with autism are taking too many

(See my book, Thinking in Pictures, or other papers I

different medications. If the person has been on a

have written for the Internet web site <www.autism.

medication for a long time, it must never be abruptly

org>.) There is a possibility in some cases that if too

stopped. The dosage should be reduced slowly. If you

many drugs are given to young children they may not

try a new drug for a few days or weeks and decide you

work when the child needs them when he becomes

do not like it, you can usual y stop it, but it is best to

a teenager. This may be a problem especial y with

check with your child’s doctor.

drugs such as Haldol or other neuroleptics. Practical

There are many different brands of medications.

experience has shown that the nutritional supplement

For example, Prozac, Paxil and Zoloft are very similar,

DMG is safe for young children.

but there is just enough difference between them that

A medication that works to change behavior should

some people wil do better on Prozac and others wil

197

The Official Autism 101 Manual

do better on Zoloft. If you do not like one then try

another. If you are using a generic, do NOT switch

brands. Find a brand that works and stay with it.

People with autism have very sensitive nervous

systems. Some individuals may require much lower

doses of medications than people with a normal

nervous system. This wil vary from individual to

individual. If some individuals are given too high a

dose of either an older tricyclic antidepressant or one

of the newer medications, such as Prozac or Zoloft,

there may be side effects. Antidepressants have a

dosage window. Too little wil not work and too

much causes side effects. The first sign of too high a

dose of an antidepressant is (seen at) early morning

awakening. This can usual y be corrected by lowering

the dose. If the excessive dosing continues, the person

wil escalate into insomnia, irritability, agitation and

aggression. To determine the correct dose, you must be

a good observer. Enough must be given to be effective

but too much can have almost the opposite effect.

Both parents and doctors have reported that when

the antidepressant was first given, the person became

calmer and then about two weeks later, he went

berserk. This is due to a slow buildup in the system.

This is especial y a problem with Prozac. The dose

must be lowered at the first indication of insomnia.

In this article I have not discussed the ful range

of medications that can be used for autism. The basic

principles of assessing risk versus benefit and using

a blind evaluation should be used with al types of

medications which are used to improve a child’s

behavior and/or language development.

198

Navigating the sea of approaches for working

with children on the autism spectrum

Contributing Author Stephen Shore, M.Ed., Boston University—Diagnosed with “Atypical Development with strong autistic tendencies,” Mr. Shore was viewed as “too sick” to be treated on an outpatient basis and recommended for institutionalization. Nonverbal until four, and with much help from his parents, teachers and others, he is now completing his doctoral degree in special education at Boston University with a focus on helping people on the autism spectrum develop their capacities to the fullest extent possible. In addition to working with children and talking about life on the autism spectrum, Mr. Shore presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy and disclosure, as discussed in his book Beyond the Wall: Personal Experiences with Autism and Asperger’s Syndrome, the recently released Ask and Tell: Self-advocacy and Disclosure for People on the Autism Spectrum, and numerous other writings. A board member of the Autism Society of America, he serves as board president of the Asperger’s Association of New England as well as for the Board of Directors for Unlocking Autism, the Autism Services Association of Massachusetts, MAAP, and the College Internship Program.

Resources and links—Stephen Shore, M.Ed., suggests visiting his Autism Today website to learn about his other products and services: Visit <http://shore.autismtoday.com> today! (*Please note, don’t put in the www.) For more information, visit Mr. Shore’s web site, <www.autismasperger.net/> .

Introduction

Individual-Difference Relation-Based intervention

T

(DIR), often referred to as “Floortime” better than

he autism bomb hits the mark, and life is never the

Relational Developmental Intervention (RDI)? And

same again for the person on the autism spectrum

then there is Daily Life Therapy (DLT), developed in

or for the family members, educators, doctors and

Japan, and available in the Boston area for the past two

others who provide support. The first questions that

decades. There’s also the Mil er Method (MM), which

bubble up are: “What should I do?” and “What is the

has been developed over the past 40 years.

best intervention for my child with autism?” During

I haven’t even gotten to techniques such

the mid-1960s there were very few choices for a child

as Powercards, Sensory Integration, Picture

who became non-verbal, had tantrums and very little

Exchange System. What about al those biomedical

body-to-environmental awareness. At that time an

interventions, such as Gluten/Casein Free diets,

autism diagnosis was considered as a sentence to a life

chelation and other heavy metal detoxifications?

of dependency with either family members or in an

Reframing the quest for the best methodology

institution. Perhaps, with luck and a lot of hard work,

to “Which methodology is best for this person at

employment in a sheltered workshop was a possibility.

this time? ” wil be much more helpful. Although al

wel -designed approaches and techniques should be

Interventions

considered when supporting a person with autism,

for purposes of space I shal concentrate on the

There are now myriad interventions, approaches and

educational/behavioral methods and save the others

techniques for working with children on the autism

for future exploration.

spectrum. Many parents and others who support

people with autism wonder which one is the best?

Is it Applied Behavioral Analysis (ABA) as original y

Six educational approaches

developed by Ivar Lovaas? What about the Treatment

We shal look at six promising methodologies for

and Education of Autistic and related Communication

working with children on the autism spectrum

handicapped Children (TEACCH)? Is Developmental

as mentioned above: ABA, TEACCH, Daily Life

199

The Official Autism 101 Manual

Therapy, DIR, the Mil er Method, and RDI. When

The behavioral approach

implemented by competent professionals wel versed

in both the method and the characteristics of the child

The behavioral approach, Applied Behavioral Analysis

they are working with, al of these approaches can offer

(ABA), is based on operant conditioning that is

great benefit. The chal enge is to match the method

original y derived largely from the work of Pavlov

to the child’s needs as close as possible. This decision

and Skinner (A. Mil er, personal communication,

has to be made by the parents and/or other significant

July, 1999). Heavily influenced by the work of these

caretaker along with others who are familiar with both

behavioral y oriented psychologists, Dr. Ivar Lovaas

the child’s needs and the methods available.

began work in the 1960s (Sal ows & Tamlynn, 1999)

Given that autism initial y was thought to be

and developed a variant of this behavioral method that

behavioral in nature (Rutter, 1999), the behavioral

is sometimes referred to as the Lovaas Method.

method is the oldest of approaches. The ease of

The behavioral methods are concerned with ex-

measuring and assessing physical behavior also

amining and shaping the visible actions of the person

contributes to the popularity of this method. Although

being worked with. In the strictest sense, the brain is

commonly thought of as a method even though it

viewed as a black box with inputs (antecedents) that

is not, the Treatment and Education of Autistic and

result in behaviors that are either reinforced or extin-

Communication Handicapped Children (TEACCH)

guished by ignoring unwanted behaviors or providing

places its main thrust on preparing the person with

negative consequences. The work of the behavioral-

autism to function in the typical community and work

cognitivists such as Edward Tolman (1960) expands

environment. A third approach, Daily Life Therapy,

the behavioral model to include more cognitive-de-

as developed by Dr. Kiyo Kitahara (1984), of Tokyo,

velopmental and environmental aspects of a person’s

takes a more Platonic (1968) view by stressing an

existence.

order of the physical, emotional and intel ectual parts

A very useful concept developed and used exten-

of the child. Further, the pharmacological approach

sively by practitioners of the behavioral methods is the

sees autism as stemming from chemical imbalances

concept of Antecedent, Behavior, and Consequence

that can be corrected via medication. An offshoot

when conducting a Functional Behavioral Analysis.

of this approach is the use of medicine to address

secondary psychological issues such as excess anxiety

Treatment & education of autistic and

and depression that can arise from being on the

communication handicapped children

autism spectrum. The developmental models more

closely address the developmental delay aspects of the

A program known as the Treatment and Education

autism spectrum. Believing that those with autism get

of Autistic and Communication Handicapped

stuck at a particular developmental level, progress is

Children (TEACCH) is often erroneously thought of

encouraged by techniques to spur development on.

as a method. However, it is a public health program

Developmental Individual-Difference Relation-Based

of services that is available in North Carolina for

intervention (DIR), of which Floortime is a part, as

autistic people. It makes use of several techniques and

developed by Stanley Greenspan, stresses building an

methods in various combinations depending upon the

emotional bond (Greenspan & Wieder, 1998) with

individual person’s needs and emerging capabilities

the child, whereas the Mil er Method, while sharing

(Trehin, 1999). Like other reputable approaches

a developmental component with DIR, takes a more

to working with people on the autism spectrum,

cognitive-systems approach with the implementation

TEACCH does not claim to cure autism but strives to

of elevated structures.(Mil er & El er-Mil er, 1989;

al ow them as much independence as possible in the

2000) RDI takes many concepts of the Mil er Method

world around them. Concentrating on the strengths

for developing fluency in experience sharing activities

of a person with autism, as opposed to the person’s

and relationships with others.

weaknesses, the major thrust of TEACCH reaches

toward the improvement of communication skil s

200

Navigating the sea of approaches — Stephen Shore, MEd

and autonomy to the maximum of the child potential

with academics, including language arts, math,

(Trehin, 1999). Education is used as the medium to

social studies and science is compatible with typical

achieve that goal. Although the shaping of behavior is

school curricula to prepare each student for inclusion

an important aspect of the program, behavior is not

opportunities. In the Higashi program, medication is

treated directly as in behavior modification. Rather,

not recognized as a therapeutic technique for working

TEACCH strives to understand and deal with the

with children on the autism spectrum. Final y, art

underlying causes for any aberrant behavior (Trehin,

and music provide opportunities to gain mastery and

1999).

appreciation for aesthetics.

Daily Life Therapy

Developmental Individual-difference

Daily Life Therapy was developed by Dr. Kiyo

Relation-based intervention

Kitahara of Tokyo in the 1960s. Original y a

Developed by Stanley Greenspan, “Floortime”—which

regular kindergarten school teacher, she derived her

is a part of DIR—is an interactive-developmental

method from working with a child with autism who

approach for working with children with autism. As

was included in her classroom (Kitahara, 1984).

indicated in The Child with Special Needs (Greenspan,

Placing heavy emphasis on group dynamics, the

1998), Floortime is based on heavy parental

method incorporates physical education, art, music

involvement. The method strives to bring the child

and academics, along with the acquisition and

through the six developmental milestones of self-

development of communication and daily living

regulation and interest in the world, intimacy, two-way

skil s (Boston Higashi School, 1999). Specifical y, Dr.

communication, complex communication, emotional

Kitahara’s method focuses on social isolation, anxiety,

ideas and emotional thinking through ever-expanding

hypersensitivity and hyposensitivity, and the apparent

circles of communication.

fragility of children with autism.

This intensive one-on-one method involves a three-

According to Dr. Kitahara (1984), stability of

part therapeutic approach. The parents are employed

emotions is gained through the pursuit of independent

to help their child master developmental milestones.

living and development of self-esteem. Mastery of

The entire program revolves around this component.

self-care skil s al ows for the development of self-

The second leg consists of specialists, such as speech

confidence and a desire to attempt other adaptive

pathologists, occupational and physical therapists,

skil s. The second focal point, extensive physical

educators and/or psychologists, who use Floortime

exercise, is used to establish a rhythm of life. Many of

techniques to deal with specific chal enges and to

the exercises are founded upon principles of sensory

facilitate development. The third part relates back to

integration and vestibular stimulation that lead to

the parents who work on their own responses and

coordination and co-operative group interaction.

styles for working with the child.

Vigorous exercise releases endorphins, which help

Floortime is similar to ordinary play with the

reduce anxiety. In addition, exercise has been found

child, except that the child’s partner plays a very active

to reduce incidences of self-stimulatory behavior and

developmental role. The parent or professional in a

aggression (Al ison, Basile, & MacDonald, 1991;

Floortime session takes the child’s lead but does so in

El iot, Dobbin, Rose, & Soper, 1994; Koegel &

a way that encourages the child to interact. The parent

Koegel, 1989), along with hyperactivity and night

or clinician actively fol ows the child by building on

wakefulness while increasing time on task. Children

what the child does. It is structured in such a way that

also learn how to control their bodies as they master

the child needs to communicate with the other person.

riding a bicycle, rol erblading, the balance disk and

other Higashi exercises. Physical education is carried

out in different-sized groups, thus serving as a bridge

to social development. Stimulation of the intel ect

201

The Official Autism 101 Manual

The Miller Method

and sign language are introduced with these structures,

they make it possible for disordered children to

The Mil er method, which embodies developmental,

understand and use signs and spoken words for the

cognitive and systems components, builds on the

first time. (Mil er & El er-Mil er, 1985)

work of Heinz Werner, Jean Piaget, Lev Vygotsky

The idea of using elevated structures was discovered

and Ludwig von Bertalanffy (Mil er & El er-Mil er,

by accident after Dr. Mil er observed some children

1989). The developmental aspect of the approach

on the autism spectrum playing on a construction

looks at children with autism spectrum disorder as

site. A child known for rocking and being relatively

being completely or partial y stuck at earlier stages of

unaware of his environment was seen moving from

development and therefore structures its interventions

rock to rock in a goal-directed manner across a ditch.

to spur on development. The cognitive aspect strives

Upon reaching one side, he would turn around and go

to promote cognitive development by structuring

back to the other side. Struck by the contrast between

the environment so as to be conducive to increased

the child’s encapsulated rocking and the goal-direct

cognitive development. This emphasis on thought

manner of crossing the ditch, Dr. Mil er and his wife

processes contrasts with other, more behavioral y

placed a plank across the ditch and guided the child

oriented approaches, which devote most of their focus

gently across it.(Mil er & El er-Mil er, 1989) The two

to stimuli and response as the explanations of the way

were amazed as this deeply involved child with autism

child with autism functions in the world. Final y, the

crossed the ditch with the same directed intensity he

systems address the roles systems play in restoring

exhibited while working his way from rock to rock

normal development in two ways. The first is to build

across the ditch a few moments before.

on the repetitive behaviors (systems) the children

Shortly thereafter, they started working with

have managed to achieve. A system is defined as a

children as they stood on and walked across planks set

coherent organization (functional or non-functional)

up between tables. The Mil ers noticed an increased

of behavior involving an object or event (A. Mil er,

“awareness and sudden increase in intention” (p. 23) as

personal communication, July, 1999). Systems range

the child proceeded across the board. This awareness

from quite smal (mini-systems) such as flicking

seemed to be as a result of an edge experience that

light switches on and off to quite elaborate such as

occurs when people find themselves in a precarious

taking groceries from a bag and putting them where

situation.

they belong in cupboard or refrigerator (A. Mil er,

personal communication, July, 1999). The hal mark

Body-world relationship

of a successful y formed system is a desire in the child

Another unique feature of the Mil er Method is that

to continue the activity after it has been interrupted.

it works in a way that honors the need for repetitive

The second way is to teach children certain behaviors

actions and routines and issues of sensory sensitivities

by introducing repetitive activities. These activities

affecting the child with autism. Maintaining that

or systems are designed to teach behaviors to a child

“each child, no matter how disordered, is stil trying to

who has not been able to otherwise develop them

make sense of the environment” (Mil er, <http://www.

spontaneously by him or herself. (Mil er & El er-

mil ermethod.org>, 1999) even the smal est piece of

Mil er, 1985)

functioning wil be exploited to lead the child from a

reliance on ritualistic behaviors to developing a set of

Use of elevation

functional repertoires. In addition, the method appears

The use of elevation in working with children on the

wel suited for working with the diverse range of

autism spectrum is a technique unique to the Mil er

presentation that exists within the autism spectrum.

Method. Dr. Mil er has created a series of devices

designed to make it possible for very disordered

children to function in a goal-directed manner

unavailable to them on the ground. When obstacles

202

Navigating the sea of approaches — Stephen Shore, MEd

Relational Development Intervention,

items.(Grandin, 1995; Wil iams, 1992)

by Stephen Gutstein

Our goal should be to help persons with autism

understand and use their strengths to work around

Relational Development Intervention is a six-stage

any presenting chal enges so they, just like everyone

model treatment approach designed to teach people

else, has an equal chance at living a fulfil ing and

with autism to participate in experience-sharing

productive life.

interactions, as opposed to being solely restricted

to instrumental social interaction.(Gutstein, 2000)

Instrumental social interaction relies on rote scripts

References

and is conducted to obtain a specific endpoint.

Al ison, D.B., Basile, V.C., & MacDonald, R.B.

In other words, people serve as “instruments” or

(1991).Brief report: Comparative effects of

the means to an end in order to obtain something

antecedent exercise and larazapam on the

we want, like information, money, food or any

aggressive behavior of an autistic man. Journal of

other commodity. One such example is ordering a

Autism and Developmental Disorders, 21, 89–94.

hamburger from a McDonald’s cashier. The chal enge

Boston Higashi School. (1999). Daily life therapy. In

is to lead this population towards experience sharing

Daily life therapy guidelines (p. 23). Randolph,

interaction where people are related to as ends unto

MA.

themselves, in order to create common experiences.

El iot, R.O., Jr., Dobbin, A.R. Rose, G.D., & Soper,

Experience sharing interactions introduce novelty and

H.V. (1994). Vigorous, aerobic exercise versus

variety in our lives. An example of such an experience

general motor training activities: Effects on

might be two friends deciding to take a walk in the

maladaptive and stereotypic behaviors of adults

woods for the sheer beauty of seeing the trees.

with both autism and mental retardation. Jour-

nal of Autism and Developmental Disorders, 24,

Conclusion

565–574.

Grandin, T. (1996). Thinking in pictures: And other

I have only barely begun to scratch the surface

reports from my life with autism. New York:

in describing some of the salient aspects of six

Vintage Press.

methodologies for working with children on the

Greenspan, S. & Wieder, S. (1998). The child with

autism spectrum. Additional y, there are many other

special needs: Encouraging intel ectual and

approaches for helping those with autism. It is only

emotional growth. Reading, MA: Addison Wesley.

with complete and unbiased information that parents,

Gutstein, S. (2000). Autism Aspergers: Solving the

educators and others who support people on the

relationship puzzle: A new developmental program

autism spectrum can make informed decisions on

that opens the door to lifelong social & emotional

the best approach or combination of methods for

growth. Arlington, TX: Future Horizons.

educating persons on the autism spectrum.

cont’d on next page

It is also important to realize that no matter how

effective these methods are for developing ways for

people on the autism spectrum to function in society,

there wil always be residuals of the autistic condition

that make their presence known. Some examples

include difficulty with subtle social situations, such as

office politics, facial recognition, sensory issues, and

using multiple modalities simultaneously when taking

in information and dealing with tasks that involve

unstructured information such as remembering

directions to a location or a shopping list of

203

Kitahara, K. (1983). A method of educating autistic children: Daily life therapy: Record of actual education at Musashino Higashi Gakuen School, Japan.

Brookline, MA: Nimrod Press

Koegel, R. L., & Koegel, L. K. (1989). Community-referenced research on self-stimulation. In E. Cipani (Ed.), The treatment of severe behavior disorders. Behavior analysis approaches (pp. 129-150). Washington, DC: American Association on Mental Retardation (Monograph No. 12).

Lovaas, I. O., & Simmons, J. Q. (1969). Manipulation of self-destruction in R

three retarded children. Journal of Applied Behavior Analysis, 2, 143–157.

Mil er, A. & El er-Mil er, E. (1989). From ritual to repertoire: A cognitive-developmental systems approach with behavior-disordered children. New E

York: Wiley-Interscience.

Mil er, A. and El er-Mil er, E. (November, 2000). ”The Mil er Method: A

Cognitive-Developmental Systems Approach for Children with Body

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Organization, Social and Communication Issues”. Chapter 19.

(pp 489–516) in (Eds.) Greenspan, S & Weider, S. ICDL Clinical

Practices Guidelines: Revising the standards of practice for infants, toddlers E

and children with developmental chal enges.

Plato. (1968). The republic of Plato, (2nd ed). Translated by Al an Bloom.

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Reading, MA: Basic Books.

Rutter M. (1999). ”The Emanuel Mil er Memorial Lecture 1998. Autism:

Two-way interplay between research and clinical work.” Journal of Child E

Psychology and Psychiatry and Al ied Disciplines, 40, 169–188.

Sal ows, G., & Tamlynn, D. (1999). Replicating Lovaas’ treatment and

findings: Preliminary results. In Autism 99 Conference. Available:

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< www.autism99.org/html/pmpapers/Frames/fr_nav_mainpage_to.cfn.>

Tolman, E. (1960). Purposive behavior in animals and men. In Century Psychology Series. New York: Irvington Publishers.

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Trehin, P. (1999) Some Basic Information about TEACCH. Available:

< web.syr.edu/~jmwobus/autism/papers/TEACCHN.htm#Section_0.1.>

Wil iams, D. (1994). Nobody nowhere: The remarkable autobiography of an E

autistic girl. London: Jessica Kingsley Publisher

S

204

The Miller Method®: A cognitive-developmental systems

approach for children on the autism spectrum

Contributing Author Arnold Miller, Ph.D. is with the Language & Cognitive Development Center in Newton, MA Resources and links—Arnold Miller, Ph.D. suggests visiting his Autism Today website to learn about his other products and services. Visit <http://miller.autismtoday.com> today! (*Please note, don’t put in the www.) For more information, visit < www.millermethod.org> , write to Dr. Miller at < ArnMill@aol.com> , call 1-800-218-5232

or write to the Language & Cognitive Development Center, Inc., Suite 5, 154 Wells Avenue, Newton, MA 02459.

What is the philosophy behind The Miller Method®?

We maintain that each child—no matter how

that permit problem-solving, social exchanges and

withdrawn or disorganized—is trying to find a

communication with themselves and others about the

way to cope with the world. Our task is to help that

world.

child use every capacity or fragment of capacity to

In contrast, developmental y chal enged children

achieve this.

become stal ed at early stages of development and

Because the ability to assess and respond to

progress to more advanced stages in an incomplete

the outside world is essential for survival, we

or distorted fashion. Many on the autism spectrum

have developed specialized training systems and

present an impairment in the ability to react to and

instructional equipment to help make this possible.

influence the world. Lacking a sense of the body

Because the ability to understand others and to express

in relation to the world, salient stimuli drive them

oneself is fundamental, we have developed methods for

into scattered or stereotypic behavior from which,

teaching communication through signed and spoken

unassisted, they cannot extricate themselves. This

language. And because a disordered child affects al

results in aberrant systems involving people and/or

around him, we work closely with parents and families

objects as wel as a hardening of transitory formations

to create a supportive but sufficiently demanding

found in normal development, e.g., hand inspection

home life so that new capacities to cope that have

and twiddling, or intense object preoccupation.

begun to flourish at the Center may generalize to

The Mil er Method uses two major strategies to re-

home and elsewhere.

store typical developmental progressions: One involves

The Mil er Method addresses children’s body

the transformation of children’s aberrant systems (lining

organization, social interaction, communication and

up blocks, driven reactions to stimuli, etc.) into func-

representation issues in both clinical and classroom

tional behaviors; the other is the systematic and repeti-

settings. Cognitive-developmental systems theory

tive introduction of developmental y relevant activities

assumes that typical development depends on the

involving objects and people. Activities are chosen to

abilities of the children to form systems—organized

fil developmental gaps. This process is facilitated by

“chunks” of behavior—that are initial y repetitive

narrating the children’s actions while they are elevated

and circular but which become expanded and

2.5 feet above the ground on an Elevated Square and

complicated as the children develop. As the children

similar chal enging structures. Elevating the children

become aware of the distinction between themselves

enhances sign-word guidance of behavior and body-

and their immediate surroundings, their systems,

other awareness as wel as motor-planning and social-

previously triggered only by salient properties of the

emotional contact. It also helps children make the tran-

environment, gradual y come under their control.

sition from one engaging object or event to another or

Children then combine their systems in new ways

from object involvement to representational play.

205

The Official Autism 101 Manual

Parents play an integral role in the program by

What do you do about more

generalizing the children’s achievements at the Center

limited reality systems once you

to the home and elsewhere.

discover them?

We expand and transform limited reality systems and

How do you assess the children?

we enrich the child’s repertoire by introducing new

We assess the children in two ways. First, with the

ones through spheric activity. When, through their

Mil er Diagnostic Survey (MDS) which is completed

work at the Center, the children learn to tolerate

by parents and transmitted to us. This provides a

“stretching” their reality systems or to accept new

broad overview of how the parents see their child

ones via repetitive spheres of activity, and can make

in their everyday life. Second, with our Umwelt

transitions from one event to another without distress,

Assessment, which carries the assessment a step further

their abilities to cope with different life situations

by determining not only what the child does but

improve dramatical y.

how close the child is to achieving the next stage in

For example, for the child in Figure 1b whose

development. The Umwelt Assessment examines the

reality includes the bal but not the adult, we find

unique way in which each disordered child experiences

ways to include the adult within the child’s object

reality. We observe the manner in which the child

system or change it from a child-object system to

reacts or fails to react to different parts of a situation.

a child-adult-object system. For the child in 1c we

Figure 1 below indicates what we mean.

try to find out what gets in the way of the child’s

Figure 1: Child’s variable engagement with suspended ball

1a represents a child enjoying a repetitive pushing-

failure to react to the bal even when it hits the child.

bal game in which adult and child push a swinging

We determine if there are circumstances where the

bal back and forth. The dotted lines to both bal and

child can become aware of the bal . Some disordered

adult indicate that the child’s reality system includes

children, for example, become more aware of an object

awareness of both the bal and the adult.

when it approaches very slowly, others when they have

repeated opportunity to push the bal .

1b, as the dotted line indicates, reflects a more limited

For children whose reality does not include simple

reality system which includes the bal —as shown by

systems such as climbing up stairs to go down a slide,

his or her pushing it whenever it arrives—but not the

we introduce a repetitive sphere of activity that guides

adult.

the child up the steps, to sit and to slide down and

repeat the sequence. To help the child succeed we may

1c shows an even more circumscribed reality system,

pace the activity quite rapidly so that the child can

since here the child fails to react even when the bal

connect one part of it with another and, eventual y,

bumps into him or her.

own the system.

206

The Miller Method — Arnold Miller, Ph.D.

How do you help the children

What is different about

generalize what they learn at the

how you teach language?

Center to the home?

We find—in accord with other developmental

We build in the ability to generalize learning by the

theorists—that language begins with directed body

way we teach particular functions. For example,

action toward or with objects and events. We also

suppose a child is being taught to put cups on cup

find that when PDD children are placed on elevated

hooks. First, the worker helps the child put the cup on

boards two to four feet above the ground they become

the hook by working hand-over-hand until the child

more aware of their bodies, better focused and far

can do this without support. Then, the worker moves

more able to cope with obstacles or demands directly

about a foot or two away from the child so that the

confronting them. Our research has shown that many

child must turn toward the adult to get the cup and

children who cannot fol ow directions on the ground

then turn toward the cup hooks.

can do so in these elevated board situations. When

Ultimately, the child learns to perform the cup-

we place obstacles in their paths and “narrate” what

on-hook task while accepting cups of varied shapes

the children do as they climb over, in, through, across

and colors from different locations, presented in

these obstacles, the children develop a repertoire of

different positions, and presented by different people.

meanings which can readily be transferred to the

This learning—occurring with the help of at least one

ground. Since these “narratives” are accompanied by

parent—makes it possible for the child to perform

manual signs and words related to their actions the

such tasks at school, at home and elsewhere.

children soon become sign and word guided in these

activities.

How do you deal with tantrums and

other asocial behavior?

Goals of the Miller Method®

We view tantrums as a failure in the child’s ability to

The goals of the Mil er Method are to:

cope with people or things in his or her surround-

• Assess the adaptive significance of the children's

ings. We try to understand the meaning of the tan-

disordered behavior.

trum—since this varies from child to child. For one

child it may come about because he or she cannot

• Transform disordered behavior into functional

cope with the shift from one situation to another and

activity.

needs help with this. For another, it may stem from a

• Expand and guide the children from closed

feeling of loss triggered by a teacher turning to another

ways of being into social and communicative

child. Whatever the source of the tantrum, we do not

exchanges.

deal with it by “time out” (placing the child in a space

• Teach professionals and parents how to guide

removed from teacher or other children). Instead, we

the children toward reading, writing, number

try to meet the need being expressed, to signal transi-

concepts, symbolic play and meaningful

tions from one activity to another more clearly, and to

inclusion within typical classroom.

use repetitive (and often reassuring) rituals to help the

child reorganize. If al else fails we hold the child while

talking to him or her calmly about what is happening

in the classroom, what wil happen next, etc.

207

The Berard method of auditory integration training (AIT) improves learning, language and social skills

Contributing Author Sally Brockett, M.S., Southern Connecticut State University—Ms. Brockett is the Director of the IDEA Training and Consultation Center in North Haven, Connecticut. She founded the Center in 1992 to focus on interventions for developmental disabilities after 12 years as a special education teacher with all categories of disabilities. After training in France with Dr. Guy Berard, the Berard method of auditory integration training (AIT) and consultation became a special focus of her work. Ms. Brockett is a founding member of the Society for Auditory Intervention Techniques (SAIT) and has served on the Board of Directors since its beginning. She is the current president of the society. Ms. Brockett is a frequent presenter at state and national conferences. Ms. Brockett is on the Professional Advisory Board for the Developmental Delay Resources, and president of the Autism Society of Connecticut South Central Region.

Resources and links—Sally Brockett, MS suggests visiting her Autism Today website to learn about her other products and services. Visit: < http://brockett.autismtoday.com> today! (*Please note, don’t put in the www.) For more information, visit <www.IdeaTrainingCenter.com> or write to Ms. Brockett at

< sally@IdeaTrainingCenter.com>.

Berard Auditory Integration Training

Indications an individual could

Individuals with auditory and sensory processing

benefit from AIT

problems have difficulty interpreting daily

The fol owing difficulties may present the opportunity

experiences. Their capacities to hear and communicate

to benefit from AIT:

are compromised. Behavioral issues and social skil s are

• Poor attention

often affected as a result.

The Berard method of auditory integration training

• Slower thinking and processing

helps reorganize the brain to improve auditory and

• Difficulty listening, understanding and

sensory processing capabilities. Participants use

remembering

headphones to comfortably listen to AIT auditory

• Incorrectly understanding and following

stimulation. This reorganizes the dysfunctional sensory

directions

center so that the brain no longer gets overloaded with

disorganized information.

• Brain “traffic jams” when processing sensory

Language, learning and social abilities develop

information

more normal y and participants are better able to excel

• Hindered ability to put ideas in sequence

as a result. Participants often benefit from just 10 days

• Sound hypersensitivity and hyposensitivity

of AIT training, with two 30-minute sessions a day.

This method of auditory training was original y

• Low tolerance for distractions

developed by Dr. Guy Berard—a French ear, nose

and throat physician—who successful y used this

Why is it important to

technique with thousands of people in Europe.

The Berard system of AIT has since become

retrain the system?

regarded as the most effective approach available for

Dr. Guy Berard developed AIT as a procedure to

enhanced listening skil s, language, learning and sound

retrain a disorganized auditory system that prohibits

tolerance.

the efficient processing of information. AIT is

relatively quick to administer, readily accepted by the

individual and requires minimum fol ow-up by other

208

The Berard Method — Sally Brockett, MS

professionals. Berard AIT has important relevance for

The children participated in a standard program

parents and educators of young children because the

of AIT. Parents completed a sensory checklist prior

focus of this intervention is on retraining the system

to AIT, and then at one month, three months and six

to improve its performance rather than teaching

months post-AIT.

compensating strategies to help children manage

The checklist contained items typical y seen

better with an inefficient system. By improving the

on sensory integration checklists and included

performance of the auditory processing system,

areas such as vestibular hypersensitivity, vestibular

individuals benefit more from the support services

hyposensitivity, tactile discrimination, self-regulation,

provided and their rate of progress is increased.

play interactions, etc.

Dr. Berard believes that hypersensitivity,

At the end of six months post-AIT, the median

distortions, sequencing problems and delays in

percent of improvement was a 79% decrease in

auditory signals contribute to inefficient learning. He

sensory problems. This means that half of the children

states that AIT is a method of retraining the ear to

achieved even better than 79% improvement and half

listen and to process sounds in a more normal manner,

of them did not achieve that much.

without distortions and delays. How we listen and

process sounds affects our alertness, attention span,

What do participants say about their

concentration, information processing and the way

experience with AIT?

we express ourselves verbal y and in writing. When

the listening process is not working properly, it can

Comments from clients who have either directly

interfere with our entire system and its ability to

participated in auditory integration training or whose

function.

children have received AIT can provide insights about

Al of these auditory problems contribute to the

the results. This information helps others who are

cognitive fatigue and variable performance that is so

interested in AIT to understand more about it and

common among individuals with learning disabilities

what changes might be produced.

and ADHD. These individuals expend much energy

• “I can understand what you say when you say it

trying to decode or translate the scrambled and

now, without having to think about it.”

distorted messages they receive. Their performance

wil depend upon the amount of energy, interest

• “I can read longer now because I don't get

and motivation they have at any given time. Other

tired. I no longer have to reread what I just

variables such as voice quality, pitch and rate of speech

read, because I understand it now when I first

delivery of the speaker, background noises and visual

read it.”

cues also impact the performance of these individuals.

• “I can focus on and understand the

conversation going on at my table now. I can

Is there data to document results?

filter out the background noises.”

• “I actually read an entire book and was able to

The Attention Deficit Disorders Evaluation Scale was

understand what I read with all the background

used to monitor progress with 48 children who partici-

noise of my kids, husband and the TV! In the

pated in AIT. Rapid improvement was seen in the first

past, I would have to read in complete silence.”

three months, with the median percentile reaching the

50th percentile, a gain of 24 percentile points.

A pilot study was conducted at IDEA Training

Center, in North Haven, Connecticut, with a group

of 14 children with varied diagnoses, but al with

identified sensory integration difficulties, to see if the

anecdotal reports of sensory improvements could be

quantified.

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The Official Autism 101 Manual

How can I find a Berard AIT

Practitioner?

To learn more about whether AIT may be a useful

intervention for someone you care for, visit

<www.IdeaTrainingCenter.com> or contact Ms.

Brockett to discuss your situation. To locate a Berard

AIT practitioner, visit < www.Dr.GuyBerard.com> .

This site provides a list of International Instructors and

AIT Practitioners available around the world.

210

Pacific Autism Center: Applied Behavioral Analysis

Contributing Author Laura Cook, President, Pacific Autism Center—The President of Pacific Autism Center, Laura Cook, is dedicated to providing only the highest quality ABA services. Mrs. Cook is a parent of an autistic child who is fully mainstreamed in a regular education classroom with no additional support. After five years of intensive treatment, her child is considered to be on the cusp of full recovery. Mrs. Cook’s leadership in the autism community and personal insight into understanding the road to recovery through quality programming and provider skill development makes her a valuable asset to this organization.

Resources and links—Laura Cook suggests visiting her Autism Today website to learn about her other products and services. Visit <http://cook.autismtoday.com> today! (*Please note, don’t put in the www.) You can contact the Pacific Autism Center by calling (808)523-8188 or writing

< pacificautismcenter@hawaii.rr.com>. The Pacific Autism Center is located at 670 Auahi Street, Suite A-6, Honolulu, HI 96813

R

for our focus on the preschool age child. With early

esearch has shown that the use of applied behavior-

interventions there is an increased chance that a child

al analysis (ABA) is effective for reducing maladap-

wil reach the potential of becoming indistinguishable.

tive behaviors and increasing communication, learning

Parents should know that recovery from this very

and social behavior.

debilitating disorder is possible for some children

A wel known study of ABA was done at UCLA by

with the appropriate ABA program. An appropriate

Dr. Ivar Lovaas (1987). In the study there were three

program has three main components:

groups of autistic children. The first group received

• Duration (commitment to several years of

40 hours of 1:1 behavioral intervention. The second

implementing the treatment);

group received 10 hours of the same interventions.

The third group received 10 hours of interventions

• Intensity (30–40 hours a week of ABA

but at off-site locations with independent providers.

services); and

The study showed that 47% of the group that received

• Quality (provided by well trained, well

40 hours of 1:1 behavioral interventions reached

supervised and well managed staff who are

normal intel ectual functioning and were able to be

sharp enough to understand the ABA principles

mainstreamed into classrooms with their peers without

and who care enough to follow through with

any assistance.

them)

Our treatment philosophy is to fol ow what the

research has shown. Although there is no guarantee

Pacific Autism Center (PAC) has taken steps to

of recovery, we can assure parents that children wil

ensure the highest quality programs are available

improve significantly utilizing ABA depending upon

through their preschool and elementary learning

the age when the child starts services. Our behavioral

center. They have partnered with the Center for

treatment model addresses developmental milestones

Autism & Related Disorders, one of the world’s

and each child’s strengths. Our model utilizes an inter-

leading organizations effectively treating children with

disciplinary team approach focusing on the acquisition

Autism Spectrum Disorders. PAC has contracted with

of newly developed skil s and the generalization and

CARD to provide program consultation and ongoing

maintenance of newly acquired skil s.

staff training. PAC selected CARD because of its

The effectiveness of our services is highly dependent

strong history in the field of ASD, its experienced and

on the early identification of autism. We believe that

educated staff, and its reputable curriculum that, when

with early intervention a child wil need less intensive

implemented effectively, leads to long-term successes

and restrictive services in the future. This is the reason

and in some cases recovery.

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The Official Autism 101 Manual

Fol owing the principles of ABA, a scientifical y

researched and empirical y validated treatment

method, CARD wil work with PAC to develop

individualized treatment plans. These plans wil

cover two areas: Behavior Management and Skil

Repertoire Building. The blend of these al ows clients

to continuously progress and add new abilities as

appropriate behaviors are acquired.

212

The SCERTS Model™: A comprehensive educational approach

Contributing Author Barry M. Prizant, Ph.D., CCC-SLP—Dr. Prizant is the Director of Childhood Communications Services; an Adjunct Professor at the Center for the Study of Human Development, Brown University; and a Fellow of the American Speech-Language-Hearing Association. He has more than 30

years experience as a clinical scholar, researcher and consultant to young children with ASD and other communication and socioemotional disabilities and their families. Dr. Prizant has published more than 90 articles and chapters on autism spectrum disorders and children with language and communication disabilities, serves on the advisory board of five professional journals, and has presented more than 500

seminars and presentations nationally and internationally. He is co-editor (with Amy Wetherby, Ph.D.) of the book, Autism spectrum disorders: A developmental, transactional perspective. (2000) Baltimore, MD: Paul Brookes Publishing Company. The SCERTS Model, a new intervention model he has developed with colleagues, is his most recent accomplishment. A videotape series about the SCERTS Model is currently available and the SCERTS Model Manual will be published in two volumes in the Summer of 2005 by Paul Brookes Publishing Co. SCERTS Model Collaborators: Amy Wetherby, Ph.D., Emily Rubin, MS, Amy Laurent, OTR/L, Patrick Rydell Ed.D.

Resources and links—Barry M. Prizant, Ph.D. suggests visiting his Autism Today website to learn about his other products and services. Visit < http://prizant.autismtoday.com> today! (*Please note, don’t put in the www.) For more information, write to Dr. Prizant at < bprizant@aol.com> or 2024 Broad Street, Cranston, RI 02905. For further information about upcoming SCERTS Model seminars, visit < www.ccseminars.com> .

What is the SCERTS Model?

The SCERTS Model is a comprehensive, multidis-

The SCERTS framework has been designed to

ciplinary approach to enhancing communication

enhance abilities in social communication and emo-

and socio-emotional abilities of young children with

tional regulation by providing transactional supports

ASD. The acronym “SCERTS” refers to Social Com-

throughout a child’s daily activities and across social

munication (SC), Emotional Regulation (ER) and

partners. The SCERTS model is best implemented as

Transactional Support (TS), which we believe should

a careful y coordinated multidisciplinary approach that

be the priorities in a program designed to support the

respects and infuses expertise from a variety of disci-

development of children with ASD and their families.

plines, including regular and special education, speech-

In the SCERTS model, it is recognized that the most

language pathology, occupational therapy, psychology

meaningful learning experiences in childhood occur

and social work, in a col aborative partnership with

in everyday activities within the family and at school.

parents and family members. The SCERTS Model is

Therefore, efforts to support a child’s development

designed to have broad application in educational and

should occur with a variety of partners (e.g., parents,

clinical settings and in everyday activities at home and

other caregivers, brothers and sisters, and other chil-

in the community. The model is applicable for children

dren) in everyday routines in a variety of social situ-

at different developmental levels, including beginning

ations, and not primarily by working with children

preverbal communicators through children who are

or “training skil s” outside of these natural and more

conversational. It is grounded in explicitly stated core

motivating contexts.

values and principles that guide educational efforts.

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The Official Autism 101 Manual

SCERTS Model statement of core values

are viewed as col aborative processes with family

and guiding principles

members, and principles of family-centered

practice are advocated to build consensus with the

1. The development of spontaneous, functional

family and enhance the col aborative process.

communication abilities and emotional regulatory

capacities are of the highest priority in educational

and treatment efforts.

Domains of the SCERTS Model:

2. Principles and research on child development

Social Communication

frame assessment and educational efforts. Goals

and activities are developmental y appropriate and

The social communication domain addresses the over-

functional, relative to a child’s adaptive abilities

riding goals of helping a child to be an increasingly

and the necessary skil s for maximizing enjoyment,

competent and confident communicator, and an ac-

success and independence in daily experiences.

tive participant and partner in social activities. This

3. Al domains of a child’s development (e.g.,

includes communicating and playing with others in

communicative, socioemotional, cognitive and

everyday activities and deriving joy and pleasure in

motor) are interrelated and interdependent.

social relationships with children and adults. In ad-

Assessment and educational efforts must address

dressing this goal, we believe children must acquire

these relationships.

capacities in two major components of social-com-

municative functioning : joint attention abilities and

4. Al behavior is viewed as purposeful. Functions of

symbol use. With increasing capacities in joint atten-

behavior may include communication, emotional

tion, children become more able to share attention,

regulation and engagement in adaptive skil s. For

share emotions, as wel as express intentions with social

children who display unconventional or problem

partners in reciprocal interactions. Capacities in joint

behaviors, there is an emphasis on determining

attention enable children to attend to and respond

the function of the behavior and supporting

to the social overtures of others and, ultimately, to

the development of more appropriate ways to

become a partner in the complex “dance” of reciprocal

accomplish those functions.

social communication. At more advanced levels of abil-

5. A child’s unique learning profile of strengths

ity, the capacity for joint attention supports true social

and weaknesses plays a critical role in

conversation by fostering a child’s awareness of a social

determining appropriate accommodations for

partner’s emotional state, attentional focus, knowledge

facilitating competence in the domains of social

and preferences.

communication and emotional regulation.

With increasing capacities in symbol use, children

6. Natural routines across home, school and

develop more sophisticated and abstract means of

community environments provide the educational

communicating and playing with others. One aspect

and treatment contexts for learning, and for the

of symbol use is the means that children use to

development of positive relationships. Progress is

communicate or “how” children communicate, also

measured with reference to increasing competence

referred to as communicative means. Communicative

and active participation in daily routines.

means may include presymbolic behaviors, such as

the use of gestures or objects to communicate, or

7. It is the primary responsibility of professionals to

symbolic behaviors, including signs, picture symbol

establish positive relationships with children and

systems and/or speech ranging in sophistication from

with family members. Al children and family

single word utterances to complex expressive language

members are treated with dignity and respect.

used in conversation. Multi-modal communication is

8. Family members are considered experts about

valued and targeted in the SCERTS Model. Children

their child. Assessment and educational efforts

are more effective communicators when they have

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The SCERTS Model — Barry M. Prizant, Ph.D., CCC-SLP

a variety of strategies, so that if one strategy does

Emotional Regulation

not work (e.g., speech), a child may shift to another

(e.g., pictures or gestures). In fact, a high level of

The emotional regulation domain of the SCERTS

communicative competence is defined, in part, by the

Model focuses on supporting a child’s ability to

degree of flexibility a child has available in the means

regulate emotional arousal. Emotional regulation is an

used to communicate, rather than having to rely on

essential and core underlying capacity that supports

only one way to communicate.

a child’s “availability” for learning. In order to be

We also believe that children are more competent

optimal y “available,” a child must have the capacities

communicators when they are able to communicate

and skil s: (1) to independently remain organized in

for a variety of purposes or functions in everyday

the face of potential y stressful events (referred to as

activities, such as expressing needs, sharing

self-regulation component), and (2) to seek assistance

observations and experiences, expressing emotions and

and/or respond to others’ attempts to provide

engaging others in social interactions. Children who

emotional regulatory support (referred to as mutual

communicate for a limited range of functions (e.g.,

regulation component), when faced with stressful,

primarily for requesting and labeling), tend to be less

overly stimulating or emotional y dysregulating

social y engaging and less desirable social partners.

circumstances. A child must also be able to “recover”

With increasing abilities in social communication,

from extreme states of emotional dysregulation, (referred

a child is better able to participate with shared

to as recovery from extreme dysregulation), through

attention in emotional y satisfying social interactions,

mutual and or/or self regulation.

which are the foundation for developing relationships

A plan for enhancing capacities for emotional

with children and caregivers. Research as wel as

regulation may occur at three different developmental

clinical experience has demonstrated that with

levels and include (1) sensory and motor level strate-

increased social communication abilities, behavioral

gies, such as providing opportunities for movement or

difficulties may be prevented or lessened. Put simply,

sensory experiences that are organizing or calming, and

if a child has social y acceptable non-verbal or verbal

(2) language level strategies, such as providing infor-

means to make choices, to protest and to get attention,

mation that reduces anxiety or using visual supports to

there is less of a need to express strong emotions

help a child understand expectations for participation

or attempt to exert social control through social y

in an activity. The third level, when a child is aware of

undesirable behavior.

different regulation strategies and can choose the most

Social communication and language abilities also

appropriate strategies, is referred to as a “meta-cogni-

are essential for learning in educational settings and

tive level.” Approaches are individualized and goals

everyday activities, and have wide-ranging effects on a

are targeted based on assessment of a child’s emotional

child’s understanding of daily experiences and growing

regulation profile and developmental abilities.

sense of competence and self-esteem. The great

Many factors may be the source of emotional

majority of opportunities for learning in childhood

dysregulation: physiological, cognitive, sensory,

occurs through symbolic activities such as language

motor, interpersonal or social. Physiological factors

use and pretend play, as wel as through non-verbal

may include il ness, al ergies or sleep disturbances.

communication. Therefore, the more competent a

Cognitive factors may include language processing

child is in language and communication abilities and

difficulties, memories of negative emotional

symbolic play, the more opportunities that child wil

experiences associated with an activity or place,

have for benefiting from learning experiences.

violations of expectations or an extreme need to have

events occur in a particular sequence or manner.

Sensory factors may include a hyperreactive response

bias to sensory input, which may include auditory,

visual, tactile or olfactory stimuli. Motor factors may

include motor coordination and motor planning

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The Official Autism 101 Manual

difficulties impeding goal directed behavior and

child is less able to succeed within the regular school

resulting in frustration. Interpersonal factors may

curriculum.

include partners who do not read or who misread a

child’s signals of dysregulation, and who therefore

(3) Support to families, including: educational

are not able to respond in a supportive manner.

support, such as the sharing of helpful information

Social factors may include social activities and social

and resources, or direct instruction in facilitating a

environments that are confusing and anxiety arousing.

child’s development; and emotional support to family

Therefore, the ultimate goal of the ER domain of

members, which is provided to enhance skil s for

the SCERTS Model is to support a child in adapting

coping and adapting to the chal enges of raising a child

to and coping with the inevitable and uniquely

with ASD.

individual daily chal enges the child wil face in

maintaining optimal and wel -regulated states of

(4) Support among professionals and other

arousal most conducive to learning, relating to others

service providers, including opportunities for

and experiencing positive emotions.

enhancing educational and therapeutic skil s, and

for providing emotional support, to cope with the

Transactional Support

chal enges of working with children with ASD.

Transactional support is the third and final domain of

In summary, the ultimate goals of the TS domain of

the SCERTS model. Most meaningful learning occurs

the SCERTS model are to coordinate efforts among al

within the social context of everyday activities and

partners in using interpersonal supports, in providing

within trusting relationships, therefore, transactional

learning experiences with other children leading to

support needs to be infused across activities and social

the development of meaningful peer relationships and

partners.

in providing the necessary learning and educational

Transactional support includes the fol owing:

supports. Additional y, families must be supported

with educational resources and emotional support, and

(1) Interpersonal supports, including the

professionals and other service providers need to be

adjustments made by communicative partners in

supported through professional growth opportunities,

language use, emotional expression and interactive

as wel as opportunities to support each other

style that are effective in helping a child with ASD

emotional y.

process language, participate in social interaction,

In the SCERTS Model, it is recognized that when

experience social activities as emotional y satisfying

professionals and other caregivers begin to work with

and maintain wel -regulated states. Interpersonal

a child with ASD and with each other, they enter into

support also includes support from other children,

complex and dynamic relationships with the child,

which provides a child with positive experiences

parents and other caregivers and service providers.

with children who provide good language, social and

Important qualities of al these relationships that must

play models, leading to the development of positive

be nurtured include trust, respect and empowerment

relationships and friendships.

for the child and family to be competent and

independent. Furthermore, these relationships must

(2) Learning and educational supports,

change and evolve over time, as children grow and

including: the ways settings and activities are arranged

develop, and as parents become more knowledgeable

to foster social communication and emotional

about ASD, more confident in supporting their child’s

regulation; visual supports for social communication

development and more clear about their priorities for

and emotional regulation, which may be implemented

both the child and the family. As parents change and

in educational settings as wel as in everyday activities;

family needs change, professionals must be flexible and

and modifications and adaptations to academic

responsive to such changes, and respectful of family

curricula to support success in learning when a

decisions.

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The SCERTS Model — Barry M. Prizant, Ph.D., CCC-SLP

The whole is greater than

academical y and to support optimal learning of

the sum of the parts

functional skil s, such as self-help and adaptive living

skil s. Final y, SC, ER and TS are lifespan abilities.

Our initial work on the SCERTS model has focused

Although we just have discussed SC, ER and TS

primarily on children in the preschool and elementary

as separate entities, they are by no means mutual y

school years. However, professionals and parents to

exclusive in theory, in how children develop or in

whom we consult or who have attended seminars

educational practice. Here are but a few brief examples

on the SCERTS model have provided feedback that

we have observed repeatedly in youngsters we have

it is not a model just for children, but that it is a

known:

“lifespan” model and, as such, is relevant for persons

from childhood through adulthood. The SCERTS

(1) Increased abilities in social communication prevent

Model manuals include a detailed curriculum-based

or lessen behavioral difficulties. Social communicative

assessment in the domains of SC, ER and TS, and

abilities al ow children to seek assistance from others

numerous reproducible forms for data col ections and

(e.g., requesting help), to express emotions (e.g.,

tracking progress, and for gathering information from

communicating anger or fear) and to have social

parents and other caregivers.

control in social y acceptable ways (e.g., choosing

In summary, we believe multiple sources of

activities). By communicating in these ways, a child’s

information, including research on children with

emotional regulation is supported.

ASD and priorities expressed by parents support the

need for an educational model that focuses on social

(2) When communicative partners sensitively adjust

communication and emotional regulation, with the

levels of language and social stimulation, or use visual

strategic implementation of transactional supports.

supports in daily activities, a child’s ability to process

Furthermore, the very process of enhancing social

and respond to language and to stay engaged in a

communication abilities and supporting emotional

social activity with focused attention is enhanced.

regulation is an essential part of “connecting” with a

child leading to long-term trusting relationships.

(3) If a student is given opportunities to engage in

organizing or emotional y regulating movement

activities, and is provided with a visual schedule

See SCERTS Model resources

(transactional support) to clarify the transition

on next page

from a school bus to the classroom in the morning,

the student is more likely to be able to participate

successful y in social classroom activities rather than

needing more “settle-in” time.

The SCERTS model reflects our conviction that

by prioritizing social communication, emotional

regulation and transactional support, educators,

parents and clinicians are best able to have a positive

impact on a child’s development and quality of

life. We believe that the focus on these domains is

supported by research on core chal enges in ASD

and priorities and concerns as expressed by parents

as wel as persons with ASD who have written about

and speak about their chal enges. We also believe that

these capacities are essential for children to succeed

217

1. Prizant, B., Wetherby, A., Rubin, E., Rydel , P., and Laurent, A. (2005) THE SCERTS Model Manual: A Comprehensive Educational Approach.

(Volume I Assessment: Volume II Educational Programming). Baltimore,

MD: Brookes Publishing <www.brookespublishing.com>

2. Prizant, B. M., Wetherby, A., Rubin, E., Rydel , P., Laurent, A. and

Quinn, J. (January, 2003). THE SCERTS Model. Jenison Autism Journal

(can be ordered from www.thegraycenter.org).

3. Prizant, B.M. , Wetherby, A., Rubin, E., Rydel , P., and Laurent, A.

R

(2003). THE SCERTS Model: A family-centered, transactional approach

to enhancing communication and socioemotional abilities of young

children with ASD. Infants and young children, 16, 296-316. (may be

E

downloaded at International Society for EI website:

<http://depts.washington.edu/isei/>.

F

4. Prizant, B.M. (2004) Autism Spectrum Disorders and the SCERTS

Model: A Comprehensive Educational Approach. 3 part videotape series.

Port Chester, NY: National Professional Resources. (www.nprinc.com) and

E

Paul Brookes Publishing: Baltimore, MD

5. Wetherby, A.M., & Prizant, B.M. (Eds.) (2000). Autism spectrum

R

disorders: A developmental, transactional perspective. Baltimore, MD:

Paul Brookes Publishing Company

ENCES

218

Diet therapy

(This excerpt is printed with the permission from the Winter 2002 issue of Living Without, a lifestyle guide for people with al ergies and food sensitivities.)

Contributing Author Lisa Lewis, Ph.D., Biological Anthropology, New York University—Dr. Lewis is the mother of a child with autism who has benefited greatly from dietary intervention. She is a co-founder of ANDI, the Autism Network for Dietary Intervention. ANDI publishes a quarterly newsletter on the subject of diet and autism and serves as a clearinghouse for diet-related information. Dr. Lewis wrote Special Diets for Special Kids and Special Diets for Special Kids Two. She regularly contributes articles to The Autism and Aspergers Digest and Sully’s Living Without magazine and she contributed to the book Biological Treatments for Autism and PDD, which was edited by Dr. William Shaw. Dr. Lewis often speaks to school districts and parent-run organizations, and she has presented workshops all over the United States and Canada. In New Jersey, she has given presentations and workshops at COSAC and the State Department of Education.

Resources and links—Lisa S. Lewis, Ph.D. suggests visiting her Autism Today website to learn about her other products and services. Visit <http://lewis.autismtoday.com> today! (*Please note, don’t put in the www.) Not long ago, I questioned something my doctor

Autism used to be considered a rare disorder.

was about to do because it seemed unnecessary.

When our son, Sam, was diagnosed in 1991, the

He gave a wry smile and replied, “At Johns Hopkins I

incidence was approximately 1 in 5,000. Now the rates

learned not to let common sense stand in the way of

are closer to 1 in 500 (Elsewhere, authors are using

medical dogma.”

1:166). This means that doctors who treated patients

My doctor was, of course, being facetious.

for years without seeing an autistic child may now

Unfortunately, many doctors actual y do fail to let

have several in their practice. It also means that some

their own observations and logic override what is the

young doctors are finding out that their own children

accepted and standard medical paradigm in which

are on the autistic spectrum. Many of these physician-

they were trained.

parents are pioneering new therapies and accepting

Historical y, this tendency has had devastating

new ideas—and seeking the same miraculous cure as

effects on the families of children diagnosed with au-

the rest of us.

tism. For the first 20 years after this complex disorder

Perhaps this is the reason that many doctors are

was described, it was attributed to bad mothering. It

final y listening to scientists and parents who insist

was not until the mid-1960s that psychiatrists final y

that dietary changes real y are helping children with

loosened their grip on the diagnosis and acknowledged

autism. The information has been available for a long

that the disorder has biological and not psychologi-

time, though it is only in the last five years that a large

cal origins. The blame was shifted from “refrigerator

percentage of parents began hearing about it shortly

mothers” to an unknown genetic defect buried deep in

after receiving diagnoses.

the biochemistry of the brain.

At first, it may seem odd that removing specific

This is now the accepted medical dogma, and the

foods would help people with developmental disabili-

current medical paradigm suggests no possibility for

ties. The clues, however, have been there al along.

improvement, let alone recovery. But, fortunately, this

Chronic constipation and diarrhea are common

dismal “no hope” view is changing—ever so slowly.

in autistic spectrum children. Sadly, these symptoms

The long overdue shift corresponds with the explosion

were often simply dismissed as part of the autistic

in the number of cases of autism diagnosed al over the

disorder and rarely, if ever, were the underlying causes

country.

thoroughly investigated. Not even the fact that celiac

219

The Official Autism 101 Manual

disease is fairly common in the relatives of autistic

iting nerve impulses). It is now known that everyone

children led to a closer look at intestinal health.

has some level of peptides in the gut, but far greater

numbers of peptides are found in the urine of people

The addicted child

on the autistic spectrum. This means there is likely a

concomitant increase in the number that reaches the

As early as 1979, researcher Jaak Panksepp noted the

central nervous system. The increased permeability

similarity between characteristics of autistic children

(leakiness) of the gut worsens the problem.

and the effects of endorphins (natural y occurring

In 1998, a researcher at Johnson & Johnson

substances) and opiate drugs. Intrigued by Panksepp’s

decided to see if he, too, could find the elevated

observation, Norwegian physician Karl Reichelt

urinary peptides. The father of an autistic child who

recal ed previously published work suggesting that diet

recovered after restricting dietary protein intake, Alan

could be implicated in some cases of schizophrenia.

Friedman was using equipment far more sensitive than

He set out to look for evidence of opioids in autistic

previous researchers could access in their university-

children, choosing to study urine samples that could

funded laboratories. In addition to verifying the

be col ected with minimal disruption to his young

presence of opioid peptides in the urine of autistic

subjects.

children, Friedman also found another extremely

Not only did Reichelt find very elevated urinary

unusual compound. Identified as dermorphin, this

peptides, his work was later replicated by Paul

chemical is a hal ucinogenic far more powerful than

Shattock in England and then by American Robert

LSD. No wonder so many autistic children seem as if

Cade. Reichelt began recommending the removal of

they are on a “bad trip!”

gluten and casein from the diets of these children as

Friedman theorized that an impaired or insufficient

early as 1981. Shattock and his col eagues at England’s

production of a particular protein might be the cause

University of Sunderland wrote extensively on their

for underlying metabolic defects found in these kids.

findings throughout the 1990s, and in 2000 American

This protein, dipeptidyl peptidase IV, has many

Robert Cade published similar findings in the United

functions in the body. It is involved in the immune

States.

system because it signals lymphocytes to reproduce

These findings led to the “opioid excess theory” of

themselves. It is the protein that breaks down opioids.

autism. The theory holds that a metabolic defect leads

It has been suggested that the mercury preservatives

to the incomplete breakdown of gluten and casein

found in several required childhood vaccinations have

proteins. Proteins are composed of amino acid chains;

inhibited the enzyme.

in the normal course of digestion, the proteins are

broken down into their constituent amino acids. At

Tummy troubles

some point during this process, short chains of amino

acids remain. These chains are known as peptides.

Recently, several pediatric gastroenterologists in

It has long been known that gluten and casein have

England have begun a serious study of the GI

opioid characteristics if incompletely digested. The fact

problems in autistic children. They acknowledge what

that autistic children often have “leaky guts” (through

many parents have known for years—gastrointestinal

which incompletely digested proteins could pass to the

il ness plays an important part in the cause and

blood) lends further support to the theory. Undigested

expression of autism. Autistic spectrum individuals

peptides that cross from the intestine to the blood wil

also frequently have complex immunological

be, for the most part, dumped into the urine, and that

abnormalities along with their other symptoms. Just

is where scientists have found them.

this year, these British gastroenterologists have pointed

Some peptides wil cross into the central nervous

out several commonalities in patients with liver

system, according to the theory, and affect the brain by

disease and a subtype of autism in which regression

mimicking neurotransmitters (the chemicals that de-

fol ows a period of normal development. In both these

liver messages between nerve cel s by sending or inhib-

conditions, abnormalities in opioid biochemistry is

220

Diet Therapy — Lisa Lewis, Ph.D

common, and this lends further support to the theory

gluten and casein be removed from the diet of autistic

that opioid peptides are involved.

spectrum children. Until we know with certainty why

Fortunately, there are doctors and researchers

these proteins are not digested ful y, removing them

attempting to find the primary problems that

from the diet remains the only way to prevent further

underlie this baffling and devastating disorder. In

damage.

the meantime, there is little doubt that removing

gluten and casein from the diet is helpful for a large

Where are we now?

percentage of those who have tried it.

In 2001, Dr. Ted Kniker from the San Antonio

Despite the mounting evidence, many physicians

Autistic Treatment Center began a smal study (n=28).

stil dismiss dietary intervention in the treatment

Because his subjects were in residential treatment, he

of autism. Some suggest that “diet won’t hurt,” but

was able to control their dietary intake. Kniker and

they do not encourage dietary trials. Others continue

the study team col ected baseline data that included

to discourage parents from trying a gluten-free and

medical histories and urine peptide profiles. The

casein-free (GF/CF) diet. Some parents are made

Autism Treatment Evaluation Checklist was fil ed

to feel that removing milk is tantamount to child

out for each subject, and behavioral information was

abuse. The fact that a large percentage of the world’s

col ected. During the first phase of the experiment,

population does not consume milk once babyhood has

milk and dairy and grain products were eliminated

passed is ignored.

from the diet for three months. After three months,

Some children who were diagnosed with autism

data col ection was repeated. Dr. Kniker explained that

and began the diet before the age of two have lost their

10 of the 28 participants changed dramatical y. Five

labels and no longer require special education. For

others deteriorated, but Kniker explained that “the

children who started the diet at a later age, recovery is

deterioration experienced . . . may be explained if the

probably out of reach.

removal of these foods unmasked negative effects of

Even so, dramatic improvement has been achieved

other foods that they may not ordinarily consume.”

after implementing a GF/CF diet. Parents around

Because dietary responders are so often al ergic to

the world have reported significant changes in bowel

other foods, this is not a very surprising finding.

function, behavior, attention, language and sociability

Kniker is continuing his study, and other studies of

once gluten and casein have cleared the system.

dietary intervention are also underway. It is general y

For a large number of autistic spectrum children,

accepted that the younger the child when intervention

the diet seems to be a critical piece of the puzzle.

is started, the more dramatic the result. It is therefore

For others, the results might be less dramatic. In a

encouraging to note that Kniker saw dramatic results

minority of cases, diet does not help at al . Screening

in so many of his subjects, none of whom were smal

usual y shows vitamin, mineral and amino acid

children.

deficiencies in this population. Spectrum children

While this research supports the importance of the

typical y eat terribly unbalanced diets, often accepting

link between behavior and bowel dysfunction, it is stil

fewer than five foods. We must improve their

impossible to know whether the bowel problems are

nutritional state if we are to see good results from any

a primary cause of autistic traits or symptomatic of a

biological intervention. Amazingly, these notoriously

broader immunological dysfunction. We do know that

picky eaters often wil increase the number and type

removal of gluten and casein often leads to formed

of foods they eat once gluten and casein have been

stools in children who have had chronic diarrhea for

removed. The search for answers continues, but for

one or more years. For many parents, relief of this

now removing gluten and casein from the diet remains

symptom alone makes the diet worth the trouble.

one of the safest, least invasive interventions available.

It is hoped that in the near future these questions

Whether or not the diet wil need to be life long

wil be resolved. For now, however, these researchers

is stil unclear. If scientists have correctly pinpointed

have one thing in common: al recommend that

the enzyme that is deficient, it may be possible to “fix”

221

The Official Autism 101 Manual

this problem in the future using supplementation or

spectrum have shown great improvement in bowel and

even gene therapy. If the metabolic problem is merely

behavioral symptoms once yeast infections are cured.

a symptom of a greater immunological dysfunction,

it may be that the immune system can be healed. For

Autistic or addicted?

now, our children join the ranks of celiacs and other

gluten-intolerant people and do their best while “living

without.”

Autistic children have many traits in common with

people addicted to opioid drugs, including:

The yeast connection

• Self-absorption—being in one's own world.

As if the situation were not complicated enough, it

• Inappropriate affect—giggling, crying for no

turns out that many people with autism are infected

reason.

with Candida albicans. Why? The gut has a living

• Stereotyped behavior—rocking, “stimming”

environment, or flora, of microorganisms. Yeast is but

(slang for certain behaviors that include hand

one organism that lives in the gut. A healthy immune

flapping, finger movement, vocalizations or

system keeps the various organisms in balance, but an

other actions that are used repetitively for

infection occurs when the balance is thrown off and

soothing or self-stimulation).

the yeast population dominates other flora residents.

• Bizarre preoccupations.

This can happen any time the immune system is

depressed, either through il ness or because a person is

• Gastrointestinal problems.

taking antibiotic medication for a bacterial infection.

• Insensitivity to pain.

A person may be genetical y predisposed to improper

immune responses, and there is also evidence that the

When addicts go off drugs, withdrawal can be intense

immune system is being damaged by an environmental

and includes physical symptoms as wel as emotional

toxin. For whatever reason, any time a bacteria,

pain.

fungus or parasite dominates the intestinal flora, “gut

Parents often report similar withdrawal when

dysbiosis” results.

children go off gluten and casein. Behavioral

According to chemist Wil iam Shaw, the waste

regressions can be severe, as can physical symptoms.

products excreted by excessive yeast may be absorbed

Parents have reported fevers, diarrhea and vomiting

from the gut and wreak havoc on the brain by mim-

when the children have gone “cold turkey.” For this

icking neurotransmitters. Further, yeast infections

reason, it's advisable to remove the foods gradual y

can damage the muscle lining of the gut and lead to

over a period of a few weeks. Even with a gradual

increased permeability. Of even greater concern is

removal of these proteins, parents often report an

the ease with which yeast can become systemic and

immediate improvement for a few days, fol owed by

perhaps increase the permeability of the blood brain

a very difficult period. In very young children, the

barrier.

negative effects usual y pass within a week. For older

When yeast is a problem, the diet must be restrict-

children and adults, withdrawal can last from 10 days

ed even further. In addition to removing gluten and

to 3 weeks.

casein, al sources of sugar must be avoided, because

yeast feeds on sugar. Fermented and potential y moldy

foods must also be restricted. Often a non-systemic

antifungal medication, such as Nystatin, is used. But

for extremely persistent yeast infections, doctors often

must prescribe stronger medications.

Fortunately, yeast infections can usual y be cleared

up within a few months. Many children on the autistic

222

Autism and nutrition: resources available

Contributing Author Laurence A. Becker, Ph.D., Creative Learning Environments, The Union Institute and University.

Resources and links—Laurence A. Becker, Ph.D. suggests visiting his Autism Today website to learn about his other products and services. Visit <http://becker.autismtoday.com> today! (*Please note, don’t put in the www.) For more information, write to Dr. Becker at < rbecker64@aol.com> or 507 Park Blvd., Austin, Texas 78751, or call (512) 454-4489.

First, let me introduce myself. I am an educator and (Autism was not considered at those conferences.) networker through whom information flows across

Speakers included Dr. Doris Rapp, Dr. Wil iam

many different disciplines. I am not a medical doctor.

Crook, Dr. Linus Pauling and Dr. Bernard Rimland.

My Ph.D. is in Creative Learning Environments

Since that time I have shared the work of Dr.

from the Union Institute & University. I have worked

Rimland, founder and director of the Autism Research

since 1977 with Richard Wawro, an international y

Institute. (See < www.autism.com/ari> .) His Autism known autistic savant artist from Edinburgh, Scotland.

Research Review International, a quarterly publication,

In 1983, I produced With Eyes Wide Open, an

reviews biomedical and educational research in the

international, award- winning documentary film about

field of autism and related disorders. In 2003, Dr.

his life and art. Since 1996, I have shared the work of

Rimland edited with Dr. Stephen Edelson Treating

Christophe Pil ault, another autistic savant artist from

Autism: Parent Stories of Hope and Success, one of the

France. I have also worked since 1992 with a young

most important, readable and useful books I know

man who cannot speak, cannot walk and cannot feed

about. In addition to 30 chapters written by parents

himself. He is not autistic; he is not a savant. He is

of autistic children, many of whom are medical

a prodigy, and his physical condition is, as of now,

doctors, tel ing of their success in treating their

stil largely undiagnosed. Marshal Bal is an amazing

children, the book also contains a chart that shows

writer and thinker. Kiss of God: The Wisdom of a Silent

the results of 22,300 responses to a survey on the

Child, a col ection of his writings, was published in

treatment effectiveness of drugs, supplements, diets

1999 and in the first three months sold over 200,000

and miscel aneous therapies or conditions. What

copies. I wrote the Foreword for the book.

an incredible source of information for parents and

I have had the opportunity to speak at many

doctors! Write ARI to obtain a copy of the survey

conferences over the years and have shared with many

and the results or to order a copy of the book. One

parents and researchers my experiences directly related

example of the data in the survey: “Bar graphs

to the fields of autism, disability, and creativity. I

depicting the rating of 49 drugs and 8 nutrients by

was the keynote speaker at the 10th Annual Texas

thousands of parents of autistic children note that

State Conference on Autism in 2001. The title of

Ritalin, the most frequently used drug, helped only

my presentation was “Seeing: Beneath and Beyond.”

29% of the children, while making 44% worse (based

I looked at hope, faith, destiny, openness to new

on 3082 parent surveys).” Compare that with the

learning, nutrition, creativity and art. My wife,

ratings of nutrient therapies.

Rosanne, and I have been involved with nutrition

One of the most significant books to enter my

since 1974, and in 2001, we became Directors of our

life has been Karyn Seroussi’s Unraveling the Mystery

business within the Shaklee Corporation. In 1981

of Autism and Pervasive Developmental Disorder: A

and 1982, I was part of the design team for the largest

Mother’s Story of Research & Recovery. It brought

conferences ever held on nutrition and behavior.

together some of the people and information that

223

The Official Autism 101 Manual

I had gained in the conferences in 1981 and 1982

< kazuko@grandecom.net> or cal (512) 565-4828.

and connected them with autism. It also reaffirmed

To learn more about Dr. Amy Yasko, visit

Dr. Rimland’s statement: “In the past 40 years the

< www.holistichealth.com>.

most significant research in the field of autism has

I hope these resources wil provide you with

not been done by men in white lab coats, but by

valuable new information in your own journey to, as

mothers!” I cannot tel you how important this book

Karyn Serrousi says, “track down and slay the beast

is. Each appendix is fil ed with resources. Page 262 has

that has invaded my child’s body.” According to its

information about the Autism Network for Dietary

book jacket, Karyn Seroussi’s book looks at: new

Intervention. Both authors frequently speak at the

research identifying autism as an immune system

DAN! conferences. (See <www.autismNDI.com>.) At disorder, immediate interventions that can change the

a Future Horizons conference I received Vol. 1 No.

course of the disease process, the role of vaccines, food

1 of Your Life by the Living Sensibly Foundation, a

intolerances and yeast, and detailed directions and

newsletter with articles by Karyn Seroussi and Lisa

recipes that may be key to your child’s recovery.

S. Lewis, Ph.D., author of Special Diets for Special

Kids. Write Future Horizons at 721 W. Abraham

Resources for art and autism include:

Street, Arlington, TX 76013 or cal (817) 277-0727

• Sandy McMurray at <www.autismarts.com>,

for information about this resource and a list of

e-mail <autismarts@cs.com>

publications.

In 2003 I met for the first time Raun Kaufman,

• Karen Simmons at < caretoday@shaw.ca> or subject of Son Rise: The Miracle Continues, 1994. I

1-877-482-1555, who is the author of

had first encountered Son Rise in 1978 while living

Surrounded by Miracles and who produced

in rural Maine and was introduced to the word

Artism, Art by Those with Autism and a CD

“autism” for the first time. The book documents the

Peace of Mind for Autism

development of the Option Institute and the Son

• Lecia Macryn at <www.mindscapeproductions.

Rise approach to treatment. (See < www.son-rise.org>

com>, telephone (248) 288-2242, who

or e-mail < sonrise@option.org> ). An excel ent VHS

produced the CD Living in the Spectrum vol 1:

produced by the BBC, I Want My Little Boy Back, is a

Autism & Ausperger’s

stunning presentation of the method of treatment. The

• Richard Wawro at < www.wawro.net>.

second person I met was Annabel Stehli, author of The

Sound of a Miracle, which describes her journey with

• M.I.N.D. Institute at < www.mindinstitute.

her autistic daughter Georgie. They found the miracle

org>, which has published a book of its

that transformed Georgie through the work of Guy

permanent art collection. This wonderful book

Berard, MD, who developed Auditory Integration

contains a biography of each artist and a full-

Training. The book is an incredibly moving account

color reproduction of the art.

of Annabel’s journey to find the key to unlock her

• Dr. Darold A. Treffert at

daughter’s prison. For more information, cal (860)

<www.savantsyndrome.com/>, for the work 355-1545, visit <www.georgianainstitute.org> or write of Chirstophe Pillault and many other savant

<georgianainstitute@snet.net>.

artists.

New on the conference scene and joining the

• Ping Lian at <www.pinglian.com/>, an 11-year-acknowledged scientific leader DAN! conferences,

old artist from Malaysia

founded by Dr. Bernard Rimland, is the Center for

Autism Spectrum Disorders (CASD) Conferences.

As you discover new and helpful resources, I hope you

Organized by Kazuko A. Irie-Curtin, the CASD

wil share them with me. This listing of resources is

conferences have in a very short time brought together

constantly being updated. I look forward to adding

some of the leading researchers in the field of autism.

yours.

To learn more, visit <www.casdweb.org> , write 224

Autism and Nutrition — Laurence A. Becker, Ph.D.

This statement, intended to point people in the

be contacted at < www.wildestcolts.com>.

right direction, does not talk about specific nutritional

Thank you for giving me the opportunity to share

supplements to use with children who have autism

some of my experience with you. Please feel free to

spectrum disorders. It does provide a broader context

duplicate this information.

of the research and knowledge in the field. Some of the

nutrients mentioned in the Parent Survey used by Dr.

Rimland are Calcium, Folic Acid, Vitamin A, Vitamin

B3 & B6, Magnesium, Vitamin C, Zinc, Digestive

Enzymes, Fatty Acid, and St. John’s Wort. The parent

survey gives parents a broad knowledge of what a large

number of other parents have tried and the behavioral

changes that they have experienced. Shaklee nutrition

can be used to provide the supplements used in the sur-

vey in a number of instances. (See <www.shaklee.com>

or our web site at <www.shaklee.net/labco> ).

The little booklet Healthy Kids, by Betsy and Ginny

Vaughn, has also been making a significant impact on

the lives of children and families. (Now also available

are Healthy Women and Healthy Men.) Since receiving

a copy from a friend, I have ordered and shared over

200 additional copies. Healthy Kids contains 130 ac-

counts by parents, nurses, and doctors, who share their

experiences of using nutritional supplements, instead

of drugs, to bring health and wel being to countless

children and their families. The introduction is by a

pediatrician, Linda P. Rodriguez, MD, who has been

using this approach for over 20 years in her medical

practice. The complete index for the booklet lists al

of the articles that relate to a specific childhood health

problem and also lists the specific nutritional supple-

ments that were used in each account. It has been

such a joy for us to share this valuable resource with so

many people. Copies of the book may be obtained by

cal ing us at (512) 454-4489, by cal ing 1-800-669-

8162 or by e-mail < vaughng@mindspring.com>.

One other resource needs to be mentioned: The

Wildest Colts Make the Best Horses, by John Breeding,

Ph.D. According to the book jacket: “This timely book

cal s for a halt to the epidemic drugging of young

people in our society today for so-cal ed ADHD. John

Breeding is a clear, strong advocate for young people

and a great al y to parents wanting support to resist

pressure to label and drug their children. He offers

a wealth of information and guidance to concerned

adults on biopsychiatry, on schools, and on counseling

children.” Dr. Breeding lives in Austin, Texas and can

225

Peace and calm for Special Needs

Contributing Author Gwen Randall-Young—Gwen Randall-Young is an author and Chartered Psychologist in private practice.

Resources and links—Gwen Randall-Young, MEd Cpsych suggests visiting her Autism Today website to learn about her other products and services. Visit: < http://young.autismtoday.com> today! (*Please note, don’t put in the www.) For books, tapes or CDs, visit < www.gwen.ca>.

Peacefulness and calm are not typicaly associated “alowing” it just to fal.

with autism, Asperger’s Syndrome or ADHD. In

Final y, we work on the neck. We want the neck

fact, children with these disorders often have a very

to be loose, so I can move the head easily from side to

difficult time relaxing. One of the tools we can utilize

side. While doing this, I do a “sneak check” to see if

in assisting them is to train them in techniques of

the arm is stil floppy. The child, of course, does not

relaxation and even meditation.

want me to “catch” a tense limb, so maintains a very

relaxed body.

Teach them how to relax

Once the child understands the concept of a

relaxed body and knows what a relaxed arm feels like,

I have had success with many young clients as I helped

we are ready to use this knowledge as a tool. I instruct

them to understand and feel the difference between

them that when they want to fal asleep, they can relax

muscles that are tense and those that are relaxed.

the entire body as we have practiced.

Starting with an arm, I ask them to pretend that arm

If they are in school, or other situations where they

belongs to a rag dol . I hold the arm up by the wrist

need to sit stil , and are having difficulty doing so,

and ask the client if the arm is as relaxed as they can

I instruct them to concentrate on relaxing one arm.

make it. After an affirmative response, I release the

While looking at, and listening to the teacher, they are

wrist, only to find the arm remaining in its position

to keep that arm as relaxed as possible.

in mid-air! Many children do not know how to relax

What I know, but they do not, is that if one arm

their bodies. We can tel them to relax but to them

is relaxed, the entire body settles down, because you

that means “settle down and behave.” We must show

cannot be tense or agitated and relaxed at the same

them how to be relaxed.

time. However, it is easier for a child to focus on one

I help them to imagine a rag-dol arm and demon-

arm, or even a hand, than to try to relax the whole

strate by having them support my wrist with a hand.

body at once. It is also a simple strategy for them to

I then ask them to remove the hand and demonstrate

remember.

that a relaxed arm is floppy and wil fal without sup-

port. We work with the arm some more, until they

Meditation

are able to release al tension, so the arm is completely

relaxed.

If the child has learned to relax the body, it is then

This becomes a game, and we have fun with it. We

possible to begin to teach meditation. For a child,

go on to the next arm, and the game consists of my

meditation can be taught simply as a process o f “not

testing to see if the arm remains floppy. Next we do

thinking about anything.” We can teach them to

the legs. I have the child lie down and I support the leg

“listen” to the silence. They may hear the hum of a

just under the knee, not too far from the floor. When

refrigerator, a computer or a furnace, and as long as

I release my hand, the leg should drop. It is easy to tel

they are just listening to that, they are not thinking

when the child is “making” the leg drop, rather than

about other things.

226

Peace and calm for Special Needs — Gwen Randall-Young

Another approach to meditation is to get them to

focus on their breathing: counting in as they inhale

to the count of “five”, hold for “five” and exhale to

the count of “five.” You can do this with them. Again,

while they are focusing on the breathing, they are not

thinking about other things. While relaxation teaches

them to quiet the body, meditation teaches them to

quiet the mind.

A great process is to start with the body relaxation

and, once the body has slowed down, to move into

the meditation practice. These two processes wil bring

lifelong benefits, and should be practiced daily.

Working with the subconscious mind

For children who cannot settle enough to do the activi-

ties I’ve just described—or to enhance the effectiveness

of the above—we can use a guided meditation/hyp-

notic technique. I have developed compact discs which

combine soothing music and quiet, gentle talking to

ease the mind and body into a state of peaceful relax-

ation. While listening to the music and the words, it is

hard to be running other thoughts through the mind.

The energy of the voice and music combined is

extremely calming and there is a hypnotic effect.

There is nothing mysterious about a hypnotic state—

children go into trances al the time when they watch

television. A trance state is simply a very focused

state. Unlike television, the messages in the CDs are

designed to calm, to build self-esteem, to make the

listener feel valued and cared for. This approach is ideal

when a child is having a difficult day. Putting on the

headphones while having a time out can completely

calm and refresh the individual.

Listening each night at bedtime not only makes for

restful sleep but reinforces daily at a subconscious level

the desirable behaviors we wish to reinforce.

My Special Friends is a CD designed for children 8

years of age and younger. For older children, Releasing

Stress, Raising Self-Esteem, and Releasing Anxiety are

helpful. New titles are being developed regularly.

These three approaches to create inner peace and

calm have proven very successful, either as an adjunct

to medication or, in many cases, as an alternative.

227

Music therapy and autism

Contributing Author Jennifer Buchanan is an Accredited Music Therapist (MTA) from Calgary, Alberta, and Past President of the Canadian Association for Music Therapy. She is a frequent guest lecturer at national conferences, universities and association meetings as well as an author. Ms. Buchanan has inspired and developed many music therapy programs in schools, universities, health care facilities, and private and government centres, through her long established company, JB Music Therapy. To learn more about JB Music Therapy, visit <www.jbmusic.ca> .

Resources and links—Jennifer Buchanan, BMT, MTA suggests visiting her Autism Today website to learn about her other products and services. Visit <http://Buchanan.autismtoday.com> today! (*Please note, don’t put in the www.) The training of a music therapist involves a full degree curriculum of music classes, along with selected courses in psychology, special education and anatomy, with specific core courses and field experiences in music therapy. Following coursework, students complete a clinical internship and a written accreditation file or board exam. Registered music therapy professionals must then maintain continuing education credits to remain current in their practice. For more information in Canada, visit

< www.musictherapy.ca>. For more information in the U.S., visit < www.musictherapy.org>.

He stares at his hands as they twirl his favorite toy. example of a family being affected by the relational His Mom looks at him with love in her eyes and

qualities of music. Music therapists around the world

begins to move closer to him as the music builds in

are facilitating sessions in a variety of styles with the

rhythm and verbal cuing. Repetitive words are sung

same primary aim: that individuals with autism may

such as “Joshua is moving, his Mom is moving, their

experience a heightened opportunity for learning,

hands are touching and they start dancing.” The

community contribution and personal growth. Some

Mom reaches for her son’s left hand as he continues to

therapists, like in the first case scenario, strongly

manipulate his toy in his right hand. Her hand begins

support the entire family unit by encouraging family

to move to the improvised song that continues to

members to participate in the weekly sessions. Other

mimic the couple’s every move, including the emotion

music therapy opportunities include peer group

that is so evident. Suddenly her son drops his toy,

therapy and individual sessions. Music therapy, once

clasps both of his Mom’s hands and begins to jump

a “fringe” form of care for persons with autism, is

up and down around the entire living room. Fleeting

becoming ever more viable and popular with this

moments of eye contact ensue between the two. Later

population group.

the Mom comments that this would be one of the few

Although music therapists around the world use

close interactions they would experience that day. A

different methods, there are some universal themes in

neighbor looking through the window would see an

their approach when working with individuals with

energetic child and a smiling Mother.

autism. They consistently emphasize two main areas

Research has shown that music can be an engaging

of importance in their work: the use of improvised

and attractive stimulus for children with autism.

music and the relationship between the therapist and

Several studies have documented music therapy as

the client through a shared musical experience. Within

a successful treatment modality to engage the child

these broad goals, music therapists work in a variety of

in social, emotional, cognitive, communication and

ways, often influenced by theoretical models of music

motor learning activities. People with diagnoses on the

therapy and related professions.

autism spectrum often demonstrate a natural affinity

The music therapist uses improvised music to re-

to music, making it an excel ent therapeutic tool to

flect back and build on sounds and movements made

develop al areas of self.

by the child, much the same way a parent communi-

The above music therapy session is but one

cates with their infant child. Therapists also initiate

228

Music therapy and autism — Jennifer Buchanan

and direct through improvised and pre-composed

imitation or quiet gestures. The music therapist con-

music interventions that support speech development,

tinues to facilitate several interventions, including in-

including, vowels, speech blends and phrasing. Cal

strument improvisation, and vocal and verbal practice

and response is also a popular technique as music nat-

through inflection, melody and rhythm.

ural y supports inflection to indicate questions posed

The boys each have different responses. For some,

and answers.

success is that they have stayed within a group con-

Some music therapists highlight active music mak-

text for five minutes. For others, it is that they have

ing as the main therapeutic agent leading to changes

answered a closed question with no prompting or that

in the child’s emotional state: “The emotional life of a

they have selected an instrument and shaken it three

child is reached directly by music . . . if he stands at a

times before passing it back to an aide. And for others

drum, is given sticks and asked to beat to the music,

it is that they have selected an instrument, traded it

then immediately, as he becomes active, he becomes

with another child, then sat back in their chair indi-

directly, personal y involved in rhythmic activity and

cating that they love music and their friend by their

in musical experience. . . . As the child becomes active-

positive, smiling affect. The fact that many individuals

ly engaged in such music he experiences its emotional

with autism can participate successful y and often with

content closely.” (Nordoff, P. and Robbins, C. (1971).

others, in music activities, contributes to music thera-

Therapy in Music for Handicapped Children. Page 50.)

py’s value as an effective therapeutic tool for the child.

Other music therapists believe that the therapy

The fol owing examples of music therapy interven-

is “in the music,” and that the relationship between

tions address key goals.

client and therapist is solely a musical one. While

others stil see music not as the therapy itself, but as

Speech/language development

a means to a therapeutic end: “The act of playing is

not the focus . . . . The focus is the relating and its

Singing and speech share many similarities, yet are

meaning. The relating goes on whether there is playing

accessed differently by the brain. Language skil s such

or not, and the clue to the meaning is not hidden

as asking and answering questions, maintaining a

somewhere in the music, but in the shared experience

conversation and using new vocabulary are embedded

of the therapist and patient.” (John, D. (1995). The

in song lyrics that are repeated session to session.

therapeutic relationship in music therapy as a tool in

Practicing oral-motor imitation exercises, to strengthen

the treatment of psychosis. In: Wigram, T., Saperston,

functional use of the lips, tongue, jaws and teeth,

B. and West, R. (eds.) The Art and Science of Music

are repeated through vocalization exercises (singing

Therapy: A Handbook. Page 160.)

single or combinations of vowels and consonants,

No one model of working can be applied to every

with proper inflection and breath support). Lining

child, as each child responds in his own way. Work

out a song (leaving out the last word or few words

with one child may require a sessions that focus on

in a song sentence) supports memory development,

the child’s emotional state, while work with another

comprehension and sentence completion.

child may require a more structured, activity based

approach.

Social and emotional development

For 30 minutes a week six young boys come to-

gether for music therapy. Starting in child-sized chairs

Every instrument possesses a personality and, depend-

and sitting next to their aides the boys begin their

ing on how it is played, can reflect or demonstrate

familiar musical greeting that welcomes each other

many emotions. A percussion instrument may also

by name, signaling the beginning of the session. They

provide a point of mutual contact between the thera-

soon move into speech vocalizations and phrasings,

pist and the child when other attempts at social inter-

concentrating on extending the breath. The aides en-

action are rejected or unnoticed.

courage each child independently in a style that best

suits the child, such as the use of PECS, face-to-face

229

The Official Autism 101 Manual

Cognitive development

Songs aid in memory of new or chal enging academic

concepts by organizing information into smal er

pieces, making them easier to translate and retain.

Music engages children in an optimal learning

environment especial y those who may be easily

distracted. Educational research supports the idea that

our ability to learn and later use new concepts and

information is strongest when we are motivated by

meaningful material presented to us. Melodies and

rhythm are useful in teaching language concepts, body

image and self-help skil s.

Motor development

Research is highly conclusive in supporting rhythm as

an external timekeeper for movement. Music therapy

is often recommended as a direct intervention for

students with severe physical impairment or basic goals

such as imitating movement. In these cases, musical

instruments are used with song cueing to target various

grasps, improve coordination and increase duration of

participation.

They are swaying again. Not to a greeting this time but to

the closing melody. A personalized song that says, “You are

wonderful, amazing, beautiful and I am so lucky to be

with you.” The music therapist adds a special line today:

“and together we find happiness, we are happy together

and Mommy loves you so much.”

230

Reaching the child with autism through art

Contributing Author Toni Flowers is an award-winning educator whose work with autistic children won her the Autism Society of America’s coveted Teacher of the Year award in 1989.

Resources and links—Toni Flowers suggests visiting her Autism Today website to learn about her other products and services. Visit <http://flowers.autismtoday.com> today! (*Please note, don’t put in the www.) You can write to Ms. Flowers at < tflowers@jcs.k12.in.is>.

I wrote the book Reaching the Child with Autism

• Fine motor skills.

through Art to help general education art teachers

• Directionality.

include students on the autism spectrum in their

• Cause and effect.

classes. Too often children on the autism spectrum are

• Body in space.

“left out” of art class because they are difficult to reach.

• Perceptual motor skills.

The lessons in this book have been “autism tested”

• Tactile/kinesthetic awareness.

and given the “lick, sniff, twiddle” seal of approval by

• Attention span.

children with autism everywhere.

• Pride in accomplishment.

• An appreciation of beauty in the environment.

From the introduction

Art as I perceive it does not always have to result in

Art is a feeling, an aura, a pleasant memory.

“something to take home.” When there is a finished

product, it is for the pride of both the adult and

Art is an expression of self. A state of mind. An act not

the child. The act of doing is for the enjoyment and

always recorded.

development of the child alone.

While in col ege, I was fortunate enough to have

There should be no failure in art—only the release of

an art instructor who did something al the students

creativity.

thought radical. He took away the brushes and canvas

and made us use everyday objects in the creation of

Al children benefit from art, but children on the

our art projects. There was resistance from the students

autism spectrum in particular, who may experience

at first. Then we started having fun.

difficulties with communication, social interaction and

There was competition to see who could create

sensory perceptions, can benefit from the creativity

the ugliest piece, and I won. I concocted a col age

and good feelings art produces.

of cooked and uncooked popcorn, paint and plastic

bubbles on a background of fungus-ridden wood.

Art leads the child in a positive direction.

My mother, however, thought this was a beautiful

piece of art. She displayed it proudly in her living

Art helps in the development of a positive self image.

room for years, until her house burned down. When

the “work of art” was destroyed, you would have

Art also helps to develop:

thought that she had lost a masterpiece. (When there

• Figure–ground discrimination.

is a finished product, it is for the pride of the parent.)

• Concept development.

Although the class set out to outdo each other in

• Spatial relationships.

grossness, something strange happened. This approach

• Form discrimination.

to art released such a creative surge that I went on to

• Sequencing.

make some hauntingly beautiful pieces using pictures

231

The Official Autism 101 Manual

of my grandmother’s birthplace combined with string,

sandpaper and paint.

I got an A in the course, but I’l never forget my

professor’s comments as he surveyed my work. He

said, “I don’t know if this is the biggest col ection of

trash that I have ever witnessed, or if it is the birth of

an artistic genius.”

I don’t think this teacher ever knew the ful impact

of his course on me. Trash or artistic genius did not

matter. The enjoyment and growth I experienced in

that course changed the way I looked at the world

around me. I began questioning and I began trusting

my abilities and instincts, instead of reaching for

comfortable truths.

Through my long and varied positions within

education, I have found art to be a valuable

component of many a child’s education because they

are al children first and foremost, not this disability

or that. Always teach to the child’s ability, not their

disability.

Experiencing art should lead to an unfolding

awareness of self and the environment.

To grow,

To expand,

To begin building trust within yourself,

And to have fun doing it,

To me, that is ART!

Reaching the Child with Autism through Art is divided

in col age, painting, play and sculpture experiences.

Each experience is in an easy-to-read format with

Objectives, Choices, Suggested Directions and Notes.

Many optional suggestions are included to take into

account a child’s individual needs. For example, if a

child is tactile defensive and doesn’t want to engage in

messy activities, he or she can wear rubber gloves while

finger painting.

232

The simple but most overlooked solution

to your child’s reading problems

Contributing Author Pat Wyman, M.A—Pat Wyman is known as America’s Most Trusted Learning Expert. She is a university instructor of Education, Reading Specialist, and author of several books, including the Instant Learning™ series, Learning vs Testing, What’s Food Got To Do With It? 101 Natural Remedies for Learning Disabilities, and a noted expert who testifies on vision screen legislation. She has developed the Eye-Q

Reading Inventory, the I Read I Succeed Program and is the founder of a non-profit organization dedicated to helping all children read at or above grade level at < www.ireadisucceed.org>. Ms. Wyman is an expert on the <www.autismtoday.com> website, a frequent guest on radio and television, and has been interviewed on reading improvement, learning and learning styles in magazines such as Nickelodon’s Nick Jr. Family Magazine and Family Circle Magazine. Ms. Wyman is the founder and CEO of the award winning website,

< www.howtolearn.com> , where you can give your child her Personal Learning Styles Inventory and find out more about her mission to help children succeed in reading, learning, and life.

Resources and links—Pat Wyman, MA suggests visiting her Autism Today website to learn about her other products and services. Visit <http://wyman.autismtoday.com> today! (*Please note, don’t put in the www.) Is this your child?

a regular eye exam, you may have been told that your

I

child has 20/20 vision and natural y assume that he

f your child has been diagnosed with autism/

or she has the ability to read easily or can participate

Asperger’s Syndrome/PDD, wil you take just a

in sport activities with no problems. In addition,

moment and reply to the questions below?

you may think that al of the other behaviors listed

Is your child disruptive or does he or she try to

above are simply “autistic” in nature and must require

avoid near point tasks? Does he or she have il egible

behavior modification or can be taught with numerous

handwriting, write uphil or downhil on paper?

repetitions. This may not be the case at al .

Does your child seem to have no depth perception or

frequently bump into things? Does your child avoid al

eye contact, choose not to look at the blackboard, have

Why 20/20 eyesight is not

a stiff legged walk, appear to over-use peripheral vision

good enough for your child

or poke at the sides of the eyes? Does your child seem

unable to catch even a large bal or appear to have

You may be surprised to learn that your child’s 20/20

other eye-hand coordination problems? If your child is

eyesight diagnosis (even with corrective lenses) is com-

reading, has he or she child complained that words on

pletely unrelated to reading or eye-hand coordination

a page jump around, or skip lines when reading aloud?

activities at near point. When your child covers one

Does your child skip over the punctuation at the end

eye during an exam and reads a chart with letters at 20

of a sentence? Does your child seem to know a word

feet away, he or she is using an outdated chart from

on one page and not recognize the same word on the

the 1800s, known as the Snel en Chart, which simply

very next page?

says that your child can see a certain size letter from

If you answered yes to several of these questions,

20 feet away! This chart only measures clearness and

then your child may have an undetected visual/

sharpness of eyesight using a stationary target.

perceptual problem that may have been mistaken for

As soon as parents and teachers hear this, they

normal “autistic” behaviors. However, as you read on,

always ask the same questions. How many children

you wil most likely discover that these problems can

read books from 20 feet away, and isn’t there more

be easily corrected with the proper diagnosis and visual

to reading and sensory motor activities than distance

activities treatment. If you have taken your child for

eyesight at 20 feet away?

233

The Official Autism 101 Manual

Eyesight and vision myth

other kids. In addition, your child won’t learn how

to develop eye movement skil s like tracking (so they

It is important to know that your child needs both

can read smoothly and not skip a line), eye-focusing

eyesight and strong vision to be able to read and

skil s, eye-aiming skil s, visual perception, peripheral

perform everyday activities. Yes, few parents or

vision, eye-hand coordination (involved in playing

teachers realize that eyesight and vision are very

sports, copying from the book to the paper or from

different skil s. Eye doctors who specialize in learning-

the board to the paper), right-left directionality (know

related vision disorders tel us why and how a

the difference between a b and d, p and q), and much

treatment known as “vision therapy” can make a world

more.

of difference for your autistic child.

When your child enters school or is reading at

Eyesight, or the ability to see, is present at birth.

home, his or her visual problems may actual y worsen.

Vision has to be learned as your child grows. Eye doc-

Children are required to read far more material than

tors who specialize in learning-related vision screenings

you ever had to as a child. The demand on their visual

tel us that vision is so complicated it involves about

systems is much heavier than it was for you. Since

20 visual abilities and more than 75%–90% of al

visual skil testing is limited or absent, and your child

pathways to the brain. Visual skil s al ow your child

may not be able to verbalize what he or she is feeling,

to comprehend and make meaning from what he or

you also have no way of knowing whether there is

she sees. In addition, medical research has shown that

further stress on the visual system like eye turns or lazy

supplementing your child’s diet with the “smart fats”

eye, both of which make reading and other activities

known as omega 3 oils wil help develop your child’s

very painful and difficult.

vision, improve memory and facilitate faster thinking.

Thus, if you have an autistic child, “normal”

(See www.howtolearn.com/omega3.html. ) autistic behaviors such as looking through or beyond

When a child does a variety of activities, such as

objects, aversion to light, lack of reciprocal play, fear of

coloring, jigsaw puzzles, building blocks, playing with

heights, poor reading skil s or inability to participate

jacks, running, jumping, playing basebal or basketbal ,

in sports activities may al be related to a weak visual

riding a bike, building forts, skating and many more,

system. This system is so critical to behavior and

he or she is learning skil s that wil make him or her a

reading that it can impact nearly every activity your

great reader later on.

child does.

Today, however, mil ions of children are doing

The fol owing chart shows the relationship between

very different things from those you did when you

vision skil s and everyday tasks your child performs.

were a child. You are correct if you think they are

indoors more of the time. They are sitting in front of

a computer screen at a very young age, (sometimes

as early as age one), watching thousands of hours of

television (studies show that children watch anywhere

from three to seven hours of television a day), and

playing video games for hours on end. Your autistic

child may be hyperfocused on smal things for untold

hours.

While these indoor activities may have some

value, turned to excessively they actual y limit your

child’s visual development and wil cause reading

problems in the future. The human visual system is

not designed for constant nearpoint activities. Your

child may develop so much visual stress, he or she wil

have to work twice as hard to get the same results as

234

The simple but most overlooked solution to reading problems — Pat Wyman, MA Vision skills needed for typical reading, classroom and other tasks

Classroom

➞

ar

e

t Near

t F

/Closur

t

tiona

ar

as

t Near

t Near

t F

ar

ar

ontr

t Near

t F

ectionality

ol / Fix

or c

tion

ontr

taining Alignment A

taining Alignment A

s

or

ocusing A

ocusing A

or

dina

Sus

ocusing A

ocusing A

ision

enes

eption / Dir

oor

ound

ar

c

ement C

ision

al V

ention and/

v

w

et

isual Mot

er

isual Mot

Classroom

e Gr

eaming/ Sus

eaming/

al V

s V

➞

taining F

taining F

Tasks

e Mo

e T

e T

os

e Hand C

racking

isual Memory

y

y

y

entr

eripher

olor R

isual P

y

T

V

Figur

E

Simultaneous F

Simultaneous F

Sus

Sus

E

E

C

P

Depth A

C

Gr

Fine V

V

E

Simultaneous Alignment A

Simultaneous Alignment F

Reading

x

x

x

x

x

x

x

x

x

?

x

x

x

Copying

x

x

x

x

x

x

x

x

x

x

x

x

x

x

(CB to desk)

Copying

x

x

x

x

x

x

x

x

x

x

x

x

x

x

(at desk)

Writing

x

x

x

x

x

x

x

x

x

x

x

x

x

x

Discussion

x

x

x

x

x

x

x

x

Demonstration

x

x

x

x

x

x

x

x

?

x

x

x

Movies, TV

x

x

x

x

x

x

x

x

x

?

x

x

P.E., Dancing

x

x

x

x

x

x

x

x

x

x

x

x

x

x

x

x

Art, Crafts

x

x

x

x

x

x

x

x

x

x

x

x

x

x

x

x

Play

x

x

x

x

x

x

x

x

x

x

x

x

x

x

x

x

x

x

x

x

Computers

x

x

x

x

x

x

x

x

x

x

x

x

x

x

Taking notes

x

x

x

x

x

x

x

x

x

x

x

x

235

The Official Autism 101 Manual

Why your child must have a

comprehensive learning-related vision

exam and follow-up vision therapy

activities, if prescribed

Since eyesight and vision are at the very core of your

child’s ability to read and learn many activities, it is

critical that you provide your child with a comprehen-

sive, learning-related vision exam before embarking

on other therapies. A substantial number of “autistic”

symptoms may simply be a vision problem in disguise.

Special y trained optometrists, known as developmen-

tal or behavioral optometrists, can properly diagnose

and treat your child. Once your child has this exam,

he or she may be prescribed a very specific series of

exercises and visual activities, and you may be very

surprised to discover that many of the behaviors you

thought were “autistic” in nature, improve or disappear

altogether.

For more information on vision therapy, download

the Eye-Q Reading Inventory at < www.howtolearn.

com/ireadisucceed.html> , administer it to your child and visit the website listed on the Inventory to find

a doctor in your area who can give your child the

comprehensive, learning-related vision exam he or

she deserves. If you choose to do some of the vision

activities at home, you can find out more by taking a

look at the I Read I Succeed Program, already proven

to help thousands of autistic children improve their

reading and behavioral abilities.

“Live simply, laugh often, love deeply.”

236

Scotopic sensitivity syndrome and the Irlen lens system

Contributing Author Stephen M. Edelson, Ph.D., Experimental Psychology—Dr. Edelson has worked in the field of autism for 25 years. He is the Director of the Center for the Study of Autism in Salem, Oregon, which is affiliated with the Autism Research Institute in San Diego, CA. He is also on the Board of Directors of the Oregon chapter of the Autism Society of America and is on the Society’s Professional Advisory Board. His main autism website is <www.autism.org>.

Resources and links—Stephen M. Edelson, Ph.D. suggests visiting his Autism Today website to learn about his other products and services. Visit < http://edelson.autismtoday.com> today! (*Please note, don’t put in the www.) Helen Irlen has trained people throughout the world in the use of her methods. For more information, write to Irlen Institute/PLD, 5380 Village Road, Long Beach, California 90808, U.S.A. or

< Irlen_Institute@compuserve.com>, call (562) 496-2550 or fax (562) 429-8699.

There is growing evidence, based on both research

• Light sensitivity: bothered by brightness, glare,

and personal reports, that many autistic individuals

types of lighting

see their world in a maladaptive, dysfunctional

• Inefficient reading: letters on page move, dance,

manner. Researchers at UCLA and the University

vibrate, jiggle

of Utah have found evidence of abnormal retinal

activity in autistic individuals. Additional y, there

• Inadequate background accommodation:

are many visual problems which are often associated

difficulty with high contrast

with autism, such as reliance on peripheral vision,

• Restricted span of recognition: tunnel vision or

tunnel vision, hypersensitivity to light, and stereotypic

difficulty reading groups of letters

(repetitive) behavior near the eyes, such as hand-

• Lack of sustained attention: difficulty

flapping and finger-flicking. Donna Wil iams, an

maintaining attention

autistic adult, has written several books about her life

and has often commented on her vision. She once

The Irlen Lens System, developed by Helen

wrote: “Nothing was whole except the colours and

Irlen, was designed to treat Scotopic Sensitivity/Irlen

sparkles in the air . . . .” and “I had always known that

Syndrome. Helen Irlen has developed two methods

the world was fragmented. My mother was a smel and

to treat Scotopic Sensitivity: the use of colored

a texture, my father a tone, and my older brother was

transparencies or overlays to improve reading; and

something which moved about.”

tinted glasses to improve one’s visual perception of his/

Scotopic Sensitivity/Irlen Syndrome is a visual-

her environment.

perceptual problem that occurs in some people

with learning/reading disorders, autism and other

developmental disorders. People with Scotopic

Transparencies

Sensitivity/Irlen Syndrome experience “perceptual

Transparencies or overlays are used to reduce percep-

stress” that can lead to a variety of perceptual

tual stress while reading. For some people, letters/

distortions when reading and/or viewing their

words on a page are not perceived clearly and/or not

environment. Scotopic Sensitivity is triggered by one

perceived in a stable manner (i.e., letters and words

or more components of light, such as the source of

appear to move). The white background may overtake

the light (e.g., fluorescent lighting, sun), luminance

and dominate the person’s perceptual system, and the

(e.g., reflection, glare), intensity (i.e., brightness),

black print of the text may fade into the background.

wavelength (i.e., color), and/or color contrast. As a

Other symptoms may include having difficulty reading

result, the person may experience:

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The Official Autism 101 Manual

for relatively long periods of time, developing head-

aches and feeling dizzy. It is possible that, for some,

the high contrast between black print on a white back-

ground provides excessive stimulation to the visual sys-

tem and thus interferes with the reading process.

In the Irlen Lens System, colored transparencies

are placed over printed text with the result that these

problems may be reduced or eliminated. A colored

overlay, such as a light blue transparency placed over

the text, wil reduce the contrast between black and

white as wel as reduce the dominance of the white

background. The optimal color of the transparency

required depends upon each person’s unique visual-

perceptual system.

Glasses

In addition to reading problems, people with

Scotopic Sensitivity/Irlen Syndrome may have

difficulty perceiving their surroundings. Many

autistic individuals wear tinted glasses, which

were prescribed by Helen Irlen or at one of her 76

worldwide diagnostic clinics. They have reported

rather remarkable benefits. After wearing her glasses,

Donna Wil iams wrote: “These [Irlen] glasses would

have changed al that. Faces and body parts and voices

would have been whole and understood within a

context of equal y conjoined surroundings.” Other

autistic individuals report seeing better, feeling more

relaxed, being less bothered by sunlight and/or indoor

lighting, and have fewer perceptual distortions which

can affect smal and gross motor coordination.

Helen Irlen has developed effective methods

for determining if a person suffers from Scotopic

Sensitivity/Irlen Syndrome. She has also designed

a standardized set of procedures that can be used

to determine the correct color prescription for the

transparency and the tinted lenses.

238

Chapter 18: Planning for the future

Planning for the future

CHAPTER 18

239

Life Map

Contributing Author Anne Addison, MBA, Kellogg School of Management, Northwestern University—Ms.

Addison worked for nearly 10 years in marketing management at several Fortune 100 companies before she launched her own management consulting practice. When her son was diagnosed with Attention Deficit Hyperactivity Deficit at the age of three and, later, with Asperger’s Syndrome, she made a life-changing decision to close her consulting company and turn her business skills towards managing her son’s case.

Through her effective personal style and her ability to successfully manage a health care and education team, Ms. Addison helped her son navigate the last heart-wrenching, sometimes overwhelming, ten years—

through educational failures, medication disasters, and more. Today, her son is a strong student in a typical fourth grade classroom. He’s involved in outside sports, church choir, and music. Ms. Addison’s book, One Small Starfish: A Mother’s Everyday Advice, Survival Tactics & Wisdom for Raising a Special Needs Child, won the Publishers Marketing Association’s Ben Franklin Award, which recognizes excellence in independent publishing.

Resources and links—Anne Addison, MBA, NHA suggests visiting her Autism Today website to learn about her other products and services. Visit <http://addison.autismtoday.com> today! (*Please note, don’t put in the www.) Ms. Addison is an Autism Today expert. You can reach her through our website.

Introduction

and minimizes his chal enges. You wil have to be

F

intentional about his future. You wil also need to

or typical children, moving through the cognitive,

teach him to be intentional, being mindful of what

emotional and physical developmental stages of

he needs to be successful and being able to access the

life is a natural progression. With the right people and

tools to get there.

experiences put in their path, they continue to move

The Life Map can help define a vision and goals

along. But if we want children with special needs to

for your child’s future and provide the tools to achieve

become responsible, capable and happy adults, we

them. Depending on your child’s cognitive and

need to chart a path from where they are today to

emotional abilities, you wil need to figure out how

where we—and they—hope they wil end up.

much he can participate in the Life Mapping process.

To determine who you want to become and what

As he matures, his role in this process should increase

you want to do in life you need to know yourself,

until he is eventual y able to take the lead in creating

what you like and don’t like, what you can and

his own Life Map.

can’t do. You also need a certain amount of social

The Life Map is a framework for helping a child

smarts—because, like it or not, the road of life is

reach his potential and become the best he can be.

paved with relationships and interactions. How

If it’s a clerk at the local grocery store, let’s help him

absolutely unfortunate, then, that some children with

become the one with the biggest smile and the largest

special needs have trouble in both of these areas—

helping hand. If it’s a herpetologist, let’s figure out how

introspecting and relating to others. They don’t think

to teach him effective listening skil s so that he can be

much about their inner selves at any given moment,

part of a research team.

never mind thinking ahead a month, a year or a

Supporting your child with the skil s that he needs

lifetime. And they pretty much live in the moment in

does not mean that you are defining his dreams for

a state of social confusion. Their hearts are in the right

him. If your child is high functioning, he wil have his

places, but their social senses are not.

own dreams. Your role is to look at the competencies

If your child is going to make it in life, there

he needs to achieve them and help him get there.

is a greater chance that he wil do so if there is a

Competencies go beyond technical skil s. In fact,

roadmap to guide him, one that draws on his strengths

technical skil s are probably the least of your worries.

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The Official Autism 101 Manual

If your child is succeeding in school, he wil probably

their competitive edge, take a look at what barriers

be able to get through the necessary technical training

are in the market and come up with goals and a way

and education to reach his goals. You need to think

of reaching them that wil satisfy both consumers and

about the social, relational, emotional and practical

stockholders.

skil s he wil need—defining what they are and

This process can also work for individuals. In fact,

creating opportunities to practice, practice, practice

maybe you’ve done Life Mapping (although you prob-

them so that they become competencies.

ably haven’t cal ed it that) for yourself—getting to

know who you are and what you’re good at, setting

Fol owing is an excerpt from a letter that we received

goals that relate to that and then establishing a way to

from Jack’s teacher and advisor several weeks after Jack

accomplish them. I’m not suggesting that you won’t

began middle school:

have a perfectly satisfactory and fulfil ing life if you

don’t do Life Mapping. But for children with chal-

“Jack real y is beginning to show his personality,

lenges, being intentional and thoughtful about who

and as we have a great abhorrence of cookie-cutter

they are and what they need throughout their life wil

kids, we like the fact that he is so independent

improve the odds that they wil live a satisfying life.

and outspoken. For instance, in class today I was

Pretend that it is your friend’s birthday and you

explaining that academic competitiveness at the

have offered to throw her a party. You ask her who

school is not real y encouraged. That we judge

she would like you to invite and what she would like

each student by his or her individual progress, not

for dessert. Tossing Dr. Atkins to the wind, she says

by how they measure up to other students.

breathlessly, “Triple chocolate mousse cake with extra

fil ing—and don’t skimp on the frosting.” Determining

“Having said that, I handed out the vocabulary

what you need to do to put the party together, from

workbooks, where each student works at his own

invitations to cake, is the plan.

level. Of course, they started comparing their

Having your friend enjoy a wonderful party and

levels immediately. I went through the explanation

that delicious cake is your ultimate goal, vision, dream,

again. Jack raised his hand and said, ‘I don’t go for

and desire. To make the cake, you look in your kitchen

al that mind-control stuff. Of course, it is better

cabinets and see that you’ve got a couple of eggs and

to be in a higher book.’ Inside I was chuckling

some vanil a. That’s the starting point. You go to the

(thinking, there’s my little rationalist), but I tried

grocery store and buy the rest of the ingredients and

to assure him that I don’t play ‘mind-control’

then proceed to make the cake. From finding out what

games and am as honest as I can be, given the

ingredients were on hand to spreading the last of the

circumstances.”

butter cream frosting on the cake is process. In fact,

al of the actions that you take between coming up

You’ve got to love a kid like that. Carving a path,

with the party idea to holding the event are part of the

being conscientious and careful to match your child’s

process. The actual party is just the endpoint, the goal.

temperament and personality to the environment

The people are everyone involved in the event,

and culture, whether it is school, an activity, or the

from the birthday girl to the clerks at the stores where

structure of your home, pays off. You’l see it the

you shop to the guests and yours truly. They are the

minute your child’s tent starts unfolding.

ones that carry out the process.

The birthday party could be thought of as a

What is Life Mapping?

mapping experience: making a plan, using a process

that leads you toward the goal and working with

Life Mapping is a process used to realize a person’s

people in the process. These three things are at the

ful est potential by drawing on his strengths and

heart of Life Mapping.

interests and working on his chal enges. Companies go

through processes like this al the time. They identify

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Life Map — Anne Addison, MBA

The three elements of Life Mapping

two primary factors are the parent(s) and the team that

supports the child. These individuals work closely and

Let’s take a closer look at the elements behind Life

on a regular basis with the child. Their interactions

Mapping: the players, the process, and the plan.

with the child may be positive, negative or neutral, but

they al have a huge impact.

The players

The child, the parents and those who regularly work

The plan

with your child make up the foundation of the Life

Defining goals and having a plan to reach those goals

Mapping model. At the center is the child. That

provide a structure for helping you stay focused and

probably seems obvious. You might even say to

mindful that what you are working on are the things

yourself, “Of course, it is al about him. I spend half

that you should be working on; that is, those that wil

of my waking minutes thinking, worrying, making

make the greatest impact and difference in your child’s

cal s, setting plans, and fussing about him.” It is a

life.

ful -time job, no doubt. But doing the work without

It doesn’t matter how good a job you do if you

understanding the child is not enough. Life Mapping

are doing the wrong job. And in the case of helping a

wil only be as strong as the foundation. And the

child reach his potential, you have to know what spe-

foundation starts with the child. Understanding your

cifics, when added together, constitute that potential.

child means more than knowing what the doctors

If you want your child to reach his highest potential,

have told you that he “has.” It means knowing many

you need to define what that might look like and then

different aspects of him. By nature of his chal enges,

develop the steps that are needed to achieve it.

it is often hard to get close to or understand your

exceptional child. But you need to keep trying,

because the more you understand your child, the

better you’l be able to develop a Life Map for him.

The next part of the foundation is the parent(s.)

You’re the one(s) who provide the overal support for

your child. You might think this support focuses on

how your child functions at home, but since you are

his coach, mentor and case manager, your influence

extends into every part of his life. You have a huge

impact on the success of your child’s Life Map. So it’s

vital to understand yourself. The more you know your-

self and are aware of how your behavior and attitudes

impact your child, the more effective you can be.

The folks who support your child make up the final

piece of the foundation. We have al been on teams

that are effective and teams that are not. Effective

teams can move mountains, let alone move toward

goals. The dysfunctional team cannot. The better the

team functions, the more your child wil benefit. We

wil look more closely at the nature of the players and

their roles in Part II.

The process

In Life Mapping, there are many factors that influence,

impact and drive the process. But for our children, the

243

Planning for the future

Contributing Author Sharon A. Mitchell, BA, B.Ed., MA, McMaster University, University of Saskatchewan, San Diego State University—Ms. Mitchell has been involved in the field of special education for over twenty-five years as a Resource Room teacher, counsellor and consultant. She’s also worked in a hospital setting doing neuropsychological assessments. Her current position is as a Special Ed Consultant and Coordinator in an amalgamated school district. As well, she is seconded by the provincial department of education to present workshops on working students with autism spectrum disorders. Parents, school personnel, social workers, day care staff, occupational therapists, speech/language pathologists, psychologists, and counsellors attend these workshops.

Resources and links—Sharon Mitchell, BA, BEd, MA suggests visiting her Autism Today website to learn about her other products and services. Visit < http://mitchell.autismtoday.com> today! (*Please note, don’t put in the www.) You can learn about Ms. Mitchell’s work by visiting her website, <http://www.sasklearningvillage.ca> .

Alternatively, you can write to her at <mitchell.sharon@gmail.com> . To aid in your search for ways to help your child, Ms. Mitchell recommends a visit to <http://www.angel-images.com/adhd&as.htm>, a site run by a woman whose son has Asperger’s Syndrome and ADHD. For a free e-book on ASD, visit <http://www.pediatricneurol-

ogy.com/autism.htm> . For a free e-book on ADHD, visit <http://www.pediatricneurology.com/adhd.htm> . For a free e-book on learning disabilities, visit < http://www.pediatricneurology.com/learning.htm>.

Why think about the future now?

Habits—start early with

It comes up on us fast, this future thing. Often

changes and preparations

we are so busy trying to make it through the day-

It’s likely that your child does not take readily to

to-day events of our lives that we give little heed to

change. He needs time to adjust to the change and to

what’s down the road. But think about the length

acquire any new skil s the situation requires.

of time it takes for your child to acquire a new skil .

Life can be going along fine, when a change is

How quickly does he adapt to a new teacher, a new

foisted on us. We have to move for a new job. Your

classroom or to other of life’s transition?

child’s age requires that he move on to the next

Now is the time to begin thinking long term. What

classroom or school. A beloved teacher assistant is

skil s might he or she need? How do you begin to

transferred.

teach them? And how wil you find the time to even

While such change can be hard on al of us, for the

think about such things?

person with an ASD such transitions can be especial y

upsetting. Yet, do we do the child a favour by not

Where do you want your child to be in

introducing change into his life? To help him prepare

for change, try bringing in smal er changes while

five years? Ten years?

things are going wel for him. I know it’s hard to think

To know how to begin, you need some idea of where

about upsetting the apple cart when you think you are

you might see your child in five, 10 or 15 years. What

going through a peaceful spel , but it’s as necessary to

is the life you’d hope for him? What are his interests?

“teach” change as it is any other skil .

His talents? Can these be turned into useable skil s

out in the world? Where might he live? With you?

Being smart is not good enough

With family? Independently? Sharing an apartment

with a friend? In a group home setting? Wil he be

Sometimes we watch our children with Asperger’s

spending his days in a special class at school, in an

Syndrome struggle with life. While so much seems

integrated classroom, in post-secondary school or at a

hard for them, they do have one strength—they’re

job placement?

smart. As parents, it’s tempting to focus on the

244

Planning for the future — Sharon A. Mitchell, BA, BEd, MA

positive. Yes, he’s having trouble with this and this and

What is realistic?

this, but look at his Science marks.

While those marks are nice, keep in mind that

While we know that everyone grows and changes, just

being smart isn’t good enough. There are many very

how much do you realistical y think your child wil

bright ASD people who are unemployed or seriously

change between childhood and adulthood? It might

under-employed because their lack of social skil s keeps

surprise you. Many of us think of those toddler years

them from holding down fulfil ing occupations.

and wonder how we survived. Looking back, our

children grew and prospered, albeit at their own pace,

but they did learn and mature.

Over-helping

Be hopeful but realistic in your plans. Keep in

In our desire to assist and protect, sometimes we “over-

mind the child’s talents, special interests and the things

help.” This occurs when we do for a child what he

he or she wil find hard in life. Listen to the opinions

could do for himself. Yes, we can do it better ourselves

of others, but know in your heart that you know

or the child can do it better with our help, but is this

your child best. Read what adults with ASD have to

what we want? It’s faster to do Johnny’s coat up for

say about their years growing up and how life is for

him, true, but in doing so we deny him the pleasure

them now. We can learn much from their wil ingness

and pride of learning to do for himself.

to share the commonalities that make up autism

Be reasonable in your expectations, but pick a skil

spectrum disorders.

you would like him to have. Break the task into parts

Here are some useful sites:

by walking yourself through it, step by step. What

• www.aspires-relationships.com/jerry_and_mary_

does he need to be able to do before he can tackle

newport.htm

the task? Demonstrate, practice and hone that skil .

Build in increments until he can handle it first with

• www.aspie.com/pages/1/index.htm

assistance, then on his own. Then build on that success

• www.donnawil iams.net/

with another skil .

• www.grandin.com/inc/mind.web.browser.html

Determine the level of assistance that your child

must have and offer no more than that. Re-evaluate

• www.isn.net/~jypsy/

this level often and wean off when possible.

• www.askanaspie.com/ This site is run by students There are many ASD children who graduate from

from the University of Chicago who have autism.

high school only to bomb in post-secondary or the

Here is part of what they have to say: “When it

world of work. Might they have become too reliant on

comes to information about autism, there are a lot

the assistance of a teacher aide? In schools we adapt

of resources written by professionals for parents.

and accommodate to meet a child’s needs and help

There are a lot of support groups by parents for

them achieve success. The world rarely proffers such

parents. But how much information out there

understanding and the transition can be daunting for

aimed at parents was written by autistics? It can

the young person.

be hard for a neurotypical parent to understand

Yes, with TA assistance, your child with Asperger’s

how an autistic child sees the world, especial y

Syndrome might be a straight A student. But are

when that child has trouble communicating.

the marks the important thing or is learning how to

We are a group of students at the University of

handle yourself in class the key? It might be better for

Chicago who have Asperger’s Syndrome and High

the student to take those steps toward managing on his

Functioning Autism, and we’re here to provide

own while under the shelter and guidance of his school

a window into the autistic worldview. We can

rather than at col ege or in the work place.

provide information from our own personal

experience, point you towards information in the

thriving online autistic community, or give you a

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The Official Autism 101 Manual

history of Middle English Pronouns. We’re aspies.

At no matter what level your child functions, he

Between us, we know a lot of random stuff.”

wil spend large portions of his life as part of a group.

• www.autistics.org/isnt/ When we focus too much Work on the skil s he’l need to survive and survive

on the deficits of ASD or think that our way of

wel with other people.

perceiving the world is the only way, pay a visit to

this website. Take the test to see if you are “on or

Quality of life goals

off the spectrum.”

There are things we want out of the good life, and

these same things we want for our children.

Build on your child’s interests

• We want to be happy.

Having special interests is a feature of ASD. These

• We want to have friends.

interests may change over time, but chances are your

• We want to love and be loved.

child wil always have a special interest.

• We want to feel useful.

Rather than trying to fight the preoccupation, go

• We want work we enjoy.

with it. Use it to your advantage. Build lessons around

• We want variety.

it. Practice “First . . ., then . . . “ where your child must

• We want to laugh.

first complete the assigned task before spending time

• We want to have fun.

on his area of interest. Al ow time for him to indulge

• We want a safe and stable place to live.

his interest, but you wil likely need to limit the where,

when and how long. Ask yourself: Can this interest or

Here’s a visual example of planning for these valued

talent be used as a teaching tool? Is there a way to turn

life outcomes: www.state.vt.us/educ/new/pdfdoc/

it into a life skil ? Can he engage in his interest while

pgm_alternate/portfolio/high_priority_021005.pdf.

performing a service to or with others?

Which skil s can you begin teaching now so that down

Life is a group process

the road your child can enjoy “the good life?”

We know that social skil s are a troublesome area

in ASD. We know how Theory of Mind weakness

makes it harder for these children to put themselves

in someone else’s place. The sensory sensitivities and

tendency toward rigidity can make being with others

difficult.

But life is a group affair. Almost anyplace we go, we

have to interact with others. And, for the most part,

like it or not, the world does not bend for us; we need

to fit into the world to the degree that we are able.

If you see your child remaining at home with you

always, then your adult child wil need to be able to

function within the parameters of family encounters

within your home. If your child wil be in a work

situation, he wil need to tolerate the proximity of

others and abide by rules and imposed timelines. If he

goes to col ege, again, handling proximity and time,

along with a host of other features wil be paramount

to success.

246

Chapter 19: By and for people on the

autism spectrum

By and for people on the

autism spectrum

CHAPTER 19

247

My mother nearly died from German Measles

Contributing Author Veronica York is a female with Asperger’s Syndrome. She was born and raised abroad and now lives in the USA. Her diagnosis was given to her when she was 37 years old, opening the doors for her to harmoniously try to channel her autistic journey which began so long ago. She wanted to bring the fragmented part of herself to a whole, and in the process had to learn to recognize her weaknesses, her strengths, and the part of her that links both.

Resources and links—Veronica York suggests visiting her Autism Today website to learn about her other products and services. Visit: < http://york.autismtoday.com> today! (*Please note, don’t put in the www.) My mother nearly died from German measles, in of environmental emotions, like the visceral awareness Chicago, when she was three months pregnant

of angry, happy, or, sad energy permeating a space,

with me, hoping to end an untimely conception. I

even when no one else is present in the room. And

was born with Infantile Autism. She told me, and I

then, other, chal enging aspects of my being; my tactile

remember, screaming, wailing without consolation,

defensiveness, when someone approaches me from

from an onslaught of environmental offences,

behind, with a highjack response to plant my elbow in

clothing, light, noise, touch and her mother’s milk.

their Solar Plexus. I have a photogenic recal of spaces

You may not believe that I could remember, but I do,

with a keen observation of changes in the décor, any

especial y the white cap of the nurse who peered over

changes, mental y editing the film that replays in my

the portable basket, lifting my tightly swaddled body,

head from the previous time that I was there. Then,

cooing into my face, nose to nose in an effort to calm

there are my problems with sensory overload from

me, her face devoid of features, the sounds emulating

florescent lights, noisy fans, obnoxious odors, that

from the triangular hat.

are painful and distracting. I scan the room to locate

My mother sought a neighbor’s advice, a squarely

a safe space from the offensive elements, al owing

built women who knew how to raise farm animals.

me to calm my sensory system enough to process

“Wrap her up real tight in a flannel-blanket, then

visual and auditory information again. And, the

keep her warm in a cardboard shoe box, and don’t

biggest chal enge, hiding my discomfort, if I am with

disturb her for three hours at a time.” My mother

strangers. Appearing calm, moving my body graceful y,

placed me in the kitchen next to the oven door, then,

responding appropriately, to social overtures.

did as she suggested, drip fresh goat’s milk down my

The friends I have, today, are understanding,

throat from a glass bottle with a hard rubble nipple.

perhaps, even cherishing, my unusualness, al owing

“She’s just like the dear little animals that aren’t quite

me transition time, even helping me find my comfort

finished developing their nervous system.” She told

zone in social situations. Maybe, it is my playful

my mother. Thanks to her, I survived, but my nervous

nature and oblique sense of humor that I share, when I

system remains sensitive, overloading when I receive

am relaxed, that helps maintain our relationship. I see

too much stimuli, such as, riding a tram, eating in

and experience the world from a unique perspective,

noisy restaurants, attending sporting events, and at

as you may say, as al of us do. I believe that this is

celebratory parties, causing my arms to ache, nausea

a major communication gap between those of us

and a disorientation of time and space.

who are aspies, and those who are considered to be

High Functioning Autism, a category, niche,

neuro typical. What I mean to convey, is the degree of

diagnosis that gives me a mailbox for many of

uniqueness that we experience. I agree with the father,

my defining characteristics, some positive, even

of a son, who is diagnosed with Aspergers, who said,

extraordinary, my sense of color and smel , awareness

“Differences for my son are more like ten thousand

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The Official Autism 101 Manual

times-normal.” He said ten thousand, not ten or one

whole, and in the process I have learn to recognize my

hundred times. It is the difference between carrying

weakness, my strength and part of me that links both.

an empty backpack on the hike of life, and one fil ed,

with boulders.

Autism, my weaknesses and I

When asked, “Would you like to get rid of your

autism, I said “No.” I am who I am, and accept

Control of one self and the emotions I feel are perhaps

myself. However, I am wil ing to change. I continue to

one of my biggest chal enges in my life with autism. I

modulate sensory overload, avoiding some situations

did not know -- before I was diagnosed that-- what I felt

al together, and learn to ask for accommodations in

at times could be an obstacle in my life.

a friendly way. I value the fresh approach and unique

I did not know how some of my flows could

perspective that defines my autism. Like adjusting

impaired my interaction with others.

a camera angle, I celebrate the differences between

There are times in which it is hard for me to

my view and others. Viva la differ ace! Ultimately,

control emotions of frustration and of sadness, and

we are al part of the great human condition and

they both pose a threat to the way I communicate with

in the magnificent scheme of al things, we are

others.

interconnected and the same.

Ambiguities are not my fort and when I have no

control of what goes on around myself I feel anger, and

Hi Stephen, how do you do?

frustrations that show. If at times I have plans and they

Here is my first essay that I am sending you and

do not go my way, I have a hard time adapting to what

hopeful y it is OK.

is to happen next. I worry, I get confused, I might

If I need to make changes to it, please let me know.

withdraw and I wish I could shut off and to retrieve

I do have one request only. I would not want my real

into my world to find peace in my secure refuge.

name to be place in the link.

Those are things that I have to combat in my daily

I have chosen Serendip as my pen name, if it could

life. Things that I have leaned to recognized and I am

be use I wil certainly appreciate it.

trying to understand. Life is not easy for me, having to

Please let me know if this is possible or not.

constantly battle the way I feel, trying to gain a more

I have two more letters— as I cal them—that I

even control of me. Molding myself to a more assertive

would like to post if they fit what they (Autism Today)

being in order to interact with others in better ways

are looking for.

and be able to achieve a simple dream.

One talks about ways of communicating between

two people in the spectrum and outside the spectrum

Autism, my strengths and I

too.The other one talks about what I feel the experts

are missing about us and how their labels bring a

One of the biggest strength I have is that I persevere in

shadow to many lives.

what I believe and that I never cease to try to achieve a

Send my regards to your wife and wil pray for you

better way to communicate and a better way to adapt

and your trip to Lincoln, Nebraska.

to the world.

Even though, I am an Aspie and natural y resist

Autism and I

change, I have a brain with the capability of reasoning

and of learning new ways. I learn from my failures

I am a female with Asperger’s Syndrome, I was born

more than from anything else, so every time I have

and raised abroad and now live in the USA.

failed, at the end I fight to transform it into gain. I

My diagnosis was given to me when I was 37 years

have read many books in search for new ways to help

old, opening the doors for me to harmoniously try to

myself understand the mechanics of what is cal ed

channelize my autistic journey which began so long

Emotional Intel igence; and I have learned to rethink a

ago. I wanted to bring the fragmented part of me to a

previously set thought.

250

My mother nearly died from German Measles — Veronica York

Changes are not easy for anyone in the spectrum,

prepared to face them with the knowledge that using

but they can beachieved; special y if there is a third

less emotions and more logic is the way to go.

person who could guide us more to learn to interpret

Emotional intel igence plays a great role in how I

the outside world. I was raised in an extended family

communicate with others as much as thinking of me

setting, and in a way that helped, I was guided by

in a third person does —my pretend self— and not my

family al the time in the things I should do or say.

true me.

The social world was a lot more complex than what

When I link past experiences, knowledge and

I thought and I failed a lot, but with the pass of time I

self control of my emotions and beliefs I am better

gain knowledge by practicing —role play— and at the

prepared to have a more successful way of dealing with

end I was able to adapt better to change.

social situations of any type. Knowing my weaknesses

Life continues to be a chal enge in the social world,

and my strengths is a plus, since I can use both of

but it is not an impossible task anymore. It takes time,

them to make life easier for me and for others around

it takes energy and it takes a lot of prayers from me to

me as wel .

be able to go out there and relate.

Communicating effectively wil always be a

I thanks my upbringing for the way I have turned

chal enging task for me, but it achieved by means of

out to be, but most of al I thanks God for helping me.

perseverance, control of emotions, knowledge and

I am stil having many problems communicating

practice.

with others in the outside world, special y when

I was 37 when I discovered why a part of me was

people behave in unconventional manners. However,

fragmented, I cried, I raged, I calmed down and I

I do no longer try to impose my orthodox ways, I just

learned to understand my weakness and strength; so

try to understand the mechanics of their thoughts

that I could try to rebuild my fragmented self and turn

so that I can help bring down a the barrier and

it into a whole.

thus communicate. I believe in self improvement,

The journey has been long, at times I leave pieces

perseverance and progress; every time I am out

of my heart on the road, at times I pick a rose; but

there I think of better ways to help myself and my

throughout it al I know that I am not alone, that there

Aspie friends to overcome the fears and ambiguities

are many fel ows Aspies like me on the road . . . And so

of the social world. In time al wil fal into place,

I continue to persevere in ways to learn to communi-

but until then I continue in the search for ways to

cate so that others can hear my inner voice.

communicate.

— Veronica York,

GA, USA

Linking my weakness and my strength

When I am in the outside world, I have to control

and channelize my emotions and my belief in order

to be able to communicate effectively with people in

different types of settings.

I have to remember that my orthodox ways are not

the rule and that I have to adapt to what is the norm.

It is then when I have to make a great effort to change

from my true self to my pretend self.

I have to come to terms with the fact that in order

for me to better communicate I must learn to decipher

others peoples ways. I am scared in a way -- after

failing so many times-- of the ambiguities that I might

find when I am among others; However, I am mostly

251

And then, they’ll see my mother

Contributing Author Jessica “Jazz” Summers was born in Arkansas in 1990. Diagnosed as mentally retarded at age three and autistic at four, she is the daughter of Lynley Summers. Jazz is the youngest member of Bobbi McKenna’s Write Your Own Book Club, a club intended for adults, and will release a book next year.

She speaks in her community to increase autism awareness. Having skipped 6th grade, she is an honor student at Mills University Studies High, ranked #20 in the nation by Newsweek.

Resources and links—Jessica “Jazz” Summers suggests visiting her Autism Today website to learn about her other products and services. Visit < http://summers.autismtoday.com> today! (*Please note, don’t put in the www.)

Autism: the word once rang of despair for a lot

diagnostics had clearly explained to my mother why

of mothers who only hoped that their children’s

other people labeled me as a “freak,” and why our own

actions would be control ed by, perhaps, a behavioral

family—YES! OUR OWN family—had abandoned

medication. The word once rang of loneliness, for the

us as though I had the plague and like Mom caught

children on the spectrum had become lost to their

it. My autism was something that neither of us could

own void, their own world, and the mothers and

control at the time. However, if my mother had been

children who had become outcasts to the society to

like the other moms out there at the time, I would not

which the mothers once belonged. The word also once

have turned out the way I ended up. And, lucky for

rang of defeat, for the mothers broke down, losing al

me, my mother stil isn’t the type to give up without a

hopes that their lives would ever be the same again,

fight.

and sometimes leaving their children to try to fight

We went through therapy after painstaking therapy,

the darkness alone, only to fail and lead a life with no

and sure enough, one year later, I was able to walk into

purpose whatsoever. This was the word’s definition 11

the world again. They had considered me a genius for

years ago, when I and many like me had no hope. This

my age, though I do not remember how high my IQ

was its definition before my mother, Lynley Summers,

was after that one year of therapy. I stil acted autistic

came and inspired a different meaning behind my

but I was stil getting some more of my mother’s

once terrible world.

Chaos Theory Therapy in the meanwhile, to help me

True, I was only four years of age in 1994, but

“act” normal. There were major setbacks at times. After

that didn’t stop the doctors from trying to trap my

al , kids wil stil be kids.

mother in the same kind of depression that had

I was stil acting sort of “funny” when I entered

ensnared the other mothers of autistic children. They

kindergarten, and so the other kids harassed me. They

ran diagnostics and IQ tests, among other things. But

framed me for almost everything, and the teacher

what they were tel ing my mother was so much worse:

believed every single one of the kids but me—just

“Your daughter has an IQ of 50. Normal y, that is

because I was different. She didn’t know what autism

considered “mental retardation.”; “Your daughter wil

was and didn’t seem to care what it was. Before I knew

probably never be able to speak English.”; “Here’s how

it, that lady put me in a remedial class part-time, and

it works: when Jessica gets a little older, she wil have

the kids made fun of me there, as wel . My mother

to start wearing a helmet. There is always the option of

tried to set things straight after she caught one of the

a group home, ful of other people like her (and other

kids framing me again. Guess what the lady said: “I’ve

misfits to society). Any questions?”

been around your kid more than you have and I can

Had I understood what the doctors were saying

tel that she’s nothing but trouble . . . .”

of me at the time, I most likely would have broken

Mom was madder than I’d ever seen in my life.

down and gone even further into my own void. My

Not only did she move me away from that school, she

252

And then, they’ll see my mother — Jessica “Jazz” Summers

started doubling our therapy sessions, making sure

be done. You’d probably hear a person after the

that I’d never have to deal with anything like that ever

diagnostics, crying, “Oh, no! He has autism! Al is lost!

again. Before I knew it, after school I was coming to

Alas!”

the col ege where Mom worked and practicing what

But that’s the thing: al is not lost. That is the

we had learned in therapy. Sometimes, Mom was

mistake that some parents with autistic children made.

interviewing col ege students while I was in the other

They give up on them, and al ow them to sink deeper

room, practicing what I had learned by myself. Other

and deeper into the void. Most of them expect their

times, my mom and I hung out together with some of

kids to learn al they need to know at school. What

her friends while we practiced some more therapy.

a joke. Parents leave their kids alone too much. They

Most of the friends that I had in first, second

don’t get involved. They let their kids be raised by the

and third grade were my Mom’s friends: adults. They

television or by the Internet, or they expect everyone

understood me; I understood them; al was right with

else to do it for them. Then, they blame it al on the

the world, and we could have had a party celebrating

autism. And one of these days, they’re going to sit on

our friendship. That’s how happy I was, despite the

a chair, missing their precious children, wondering

fact that I was stil in therapy. And my adult friends

where they are now. And then they’l realize; they’re

liked me so much that I was recruited as the first

right where they left them: lost in the void, some

Junior Member of Alpha Psi Omega, the col ege’s

of them perhaps in a home where they have few

drama fraternity. Even when I went to Japan with

opportunities.

Mom for two years, most of my friends were adults

I shudder to think of my “self,” left shackled

and a lot of them even hung out with me during my

by a “disability,” helpless. Some parents may say to

therapy.

themselves, “What have I done? What have I done

By the time I went into junior high and high

that made my child deserve this treatment? Why

school, when I came back to America, you could

should he have to suffer for the fact that I abandoned

hardly tel that I was autistic at al . My mother’s love

him in his time of need? Why didn’t I fight for him?

had already brought me out of the void that I was

He was my child. Why did I have to give up on him?”

in. And people just didn’t care anymore. Autism had

And then, they’l see my mother: not the woman

become just another condition, just another bump in

who defeated autism, but rather embraced it and

the road, so to speak—much like near-sightedness. I

formed it to her liking. I was only the clay to the

found friends who were my peers. Sure, I was teased

potter and I was shaped into person I am today not

every once in a while, but that’s just what it was:

only by experience but by love itself. My mother had

teasing. So it wasn’t a big deal to me. However, every

so much faith in me that it helped me to carry on in

once in a while I end up wishing that I could tel the

life. Yes, there are times when I feel desperate and weak

world some very major points that could probably

and as though I might falter to the mission in which I

turn their lives around.

must succeed, but my mother is the one who gets me

Mothers, please: DO NOT GIVE UP ON YOUR

back up on my feet with her faith and love, as she tel s

CHILDREN! Although the world might be sunny

me, “You can do it, Jazz; I know you can . . . .”

and bright outside, the void is a dark, lonely place to

Every once in a while, at Mil s University Studies

be, fil ed with your children’s fears, anger and sadness.

High School, the school I go to now, when I tel

I know because I’ve been in that horrible place. If

people about Autism, some people already know about

anything besides my mother’s therapy regimen can

it or know someone with it. That, I believe, is progress

bring your children out of the void, it is your love,

on our part. However, some of the other people I tel

faith, understanding and guidance. You have to believe

do not know about it or making fun of it afterwards.

in them. That’s al it wil take to bring them out of the

Like I mentioned before, that’s just how kids are.

void.

One of the more infamous, but hurtful, jokes goes

It’s always easier to be lazy about it. It’s always

something like this:

easier to think that al is lost or that nothing can

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The Official Autism 101 Manual

“Why did the Autistic girl cross the road?”

“Wel , I don’t know. Why?”

“I don’t know, either. Why wasn’t she in the asylum?”

Like I said: hurtful. It sounded a lot like they were

laughing at me, but the truth of it is that they had

no clue what it was real y about. They didn’t even

know I was autistic and when I told them that I was

they automatical y kept their mouths shut about

the “autistic girl joke.” I also meet people who have

absolutely no clue what autism is. I tel them a little

about it, and usual y I get: “Autism? What is it, like

mental retardation?” People should learn that being

autistic just means you’re a little bit more special than

some of the normal kids.

To be perfectly honest, I real y don’t think that

anyone is truly “normal.” The only people who real y

are “normal” are the real y boring adults and the

real y mean kids. Other than that, everyone has their

own special qualities. Just like there are special shapes

and sizes; everyone is going to be different from

you. Different is a good thing; America is a land of

diversity, after al .

My point is that you shouldn’t shun people

just because they’re different. According to a song

in Schoolhouse Rock, we are said to be the Great

American Melting Pot. The way I see it, we, the

autistic, are just one more ingredient to this delicious

country that we cal America. Just because we’re

different doesn’t mean we’re defective. It just means

that we make America al the more unique.

254

My Story

Contributing Author—Daniel Hawthorne is a diagnosed High Functioning Autistic. He is the author of Child of the Forest and Guidelines to Intervention in Autism, and webmaster and author of the award winning site

< www.autismguidelines.com> . He has degrees in Communication and Business Administration, most recently through the University of Arkansas. He does numerous speaking engagements to autism support groups and to special schools, in addition to managing an online resume posting business.

Resources and links—Daniel Hawthorne suggests visiting his Autism Today website to learn about his other products and services. Visit <http://hawthorne.autismtoday.com> today! (*Please note, don’t put in the www.) Daniel Hawthorne may be contacted through his website: < www.autismguidelines.com> .

I: The journey begins

of amazement, expressed how much they admired my

I

intel ect. An enigma indeed.

t was one of the last things my Dad said to me in our

My journey toward self-discovery began in earnest

final conversation prior to his death last December,

in the spring of 1995 with work at a local print shop.

at the age of 82. “You know, I never did understand

The work, being fairly routine, suited me wel . One

why you were always so different from other kids.

day, I went to the break room as usual, but this time

You were just different, is al I know how to put it.

I noticed a religious newsletter on the table. I put my

No one else in my (extended) family ever had that

bologna and cheese sandwich aside and picked up

problem learning how to talk.” He went on to tel me

the colorful magazine. A front page article entitled,

how it was both a surprise and a mystery for him. I

“What is Autism?” captured my attention. I had heard

seem to recal my Mom, prior to her succumbing to

the term before but was not quite sure what it meant,

Alzheimer’s, tel ing me the same kind of thing. I took

if anything. Inside the brochure, I found the various

it was a mystery to her as wel , though she did tel me

identifying traits of the condition.

she was immensely relieved when the doctor said that

I gasped in shock. It was like looking in a mirror.

whatever was causing my speech delay, it was definitely

It was me, al me—the delayed speech, the rituals,

not due to any kind of cancerous tumor on my vocal

the rigid thinking, the difficulty grasping abstract

chords. According to the doctor, in that respect, I was

concepts. A storm of mixed emotions stirred inside

completely healthy.

me. I felt elated and yet I also felt violated. I was elated

You see, al my life I’ve been on a journey, even

because now, for the first time in my life, my sensory

before I realized I was on one. Even in col ege, others

related difficulties felt real. I could now grasp them

realized it before I did. One acquaintance remarked,

in ways I couldn’t before. I felt justified in believing

“My goodness! I just realized the truth about you.

they were real. Yet at the same time I was shocked that

You’re in a search for yourself and you’re lost in the

the whole article of information redeeming my belief

woods.” Then he shook his head some more and

system came from a person or people whom I had

walked away. Now, after so many years, I final y

never met, who didn’t know me. They somehow knew

understand what he meant. Truly, I was different from

my deepest secrets, things I’d never told anyone.

other people, had compulsions and habits others did

I threw the offending paper back onto the table

not have. The same sporting events that others seemed

and rushed out of the break room, resolved not to ever

to enjoy so much, complete with al the crowd noise,

research the subject. It was too disturbing.

repel ed me. What especial y bothered me was how

Late that evening, I went to the grocery to attempt

my level of functioning kept changing for no apparent

to shop. As I entered the store, I noticed that few

reason. Some, with contempt in their voice, openly

other shoppers were around and the Muzak heard

labeled me “retarded”; others, with an unmistakable air

255

The Official Autism 101 Manual

over the intercom was even soothing. I took a deep,

autistic, anyway? In the days and weeks that fol owed,

satisfying breath; I could shop with little or no torture

I spent countless hours at the university library delv-

this time. I grabbed a cart, careful not to make any

ing into the matter, and taking meticulous notes about

more noise than necessary. As I glanced up, a child in

what I found. A few months later, after rigorous test-

another shopping cart caught my attention. Though I

ing and a seemingly endless number of interviews, I re-

had never seen this boy before, he seemed so strangely

ceived my diagnosis. For me, the diagnosis was a relief.

familiar. The boy had a fixed stare at the wal , almost

I was final y on the verge on understanding myself.

like a statue. The mother, standing to his side, raised

In the process of this journey, I’ve learned many

her hands and began speaking through sign language.

things about myself. Autism is not just something

Without ever turning around, he signed in response.

I have, in the sense that one may have high blood

My hands felt cold and clammy. Chil s ran down

pressure. It is something that I am, in that it affects

my back. I tried to get a breath, and couldn’t. An

every facet of my life. It affects the way I think, the

image began to form from the distant, intentional y

way I perceive the world, and the way I respond to it.

forgotten memories of my childhood. This boy was

like me as a child. Then a storm of memories flooded

II: The basic traits

my psyche. I drew back, unsure what to do next, or

how to assess what had just happened. Slowly, I looked

One way the autism affects me is that I tend to think

back at where the boy and his mother had been. They

in much more tangible terms than do most people. In

were gone.

order to grasp abstract terms, I think of them in terms

Some days later, my professor told us to research

of what I can see, hear, touch. I think in il ustrations

a list or newsgroup. After a quickly prepared, tasteless

and analogies, a trait medical experts often think of as

supper, I went to the local computer lab to do the

mental rigidity.

assignment. After a while, I glanced up at the clock,

To an autistic individual, mental rigidity is more

and rubbed my aching eyes. It was 2:00 a.m., and I sat

than mere words printed on the pages of some

alone in the campus computer lab—except for a lab

psychiatric journal; it is the source of much of his

technician who was busy running programs. Bleary-

being and who he is. It determines, to a great extent,

eyed and tired, my only thoughts were of how I should

how he learns about and responds to his environment.

be in bed instead of torturing myself at this computer

It is the reason autistic individuals tend to be so literal

station. After al , it was only worth 10 points.

in their thinking and why figures of speech often

Yet, I felt compel ed to continue. Though having

confuse them.

seemingly accomplished little, I stil felt unable to

To someone within the spectrum, abstract concepts

quit for the night, unable to fathom such a change in

of any kind are learned only with great difficulty,

gears. I just couldn’t decide on which article to print.

and realness is a constant issue. It has also been my

There were so many. Moments later, I came across

experience that things I have not seen or touched

a list that included an autism discussion group. My

in a while tend to lose their realness to me. For that

heart pounded. I couldn’t sit stil . I was convinced that

reason, I have always had this affinity for nouns, and a

if I didn’t open this door right then, the matter would

certain dislike for verbs. Especial y as a child, I had to

forever haunt my nightly dreams. I closed my eyes and

go around the classroom touching the wal s in order

took a deep breath. No matter what I might find, I

to feel comfortable being there. Things have to be

knew I had to know more. What about the condition

tangible to me to seem real. The problem is that if they

I had read about in that newsletter? Could there real y

don’t seem real, my mind tends to automatical y reject

be other people out there like me? I felt compel ed to

them. Concepts that I reject, I soon forget as wel .

know one way or the other.

For the autistic, learning must relate to something

I rushed home, too excited to sleep. I poured my-

tangible. For myself, the actual learning is not as

self some hot tea and thought about my discovery.

important as the learning how to learn. So much of

Could I real y be autistic? What does it mean to be

what I was expected to learn was abstract, and yet

256

My Story — Daniel Hawthorne

this was the very thing I had trouble grasping. I was

goes on. Since none of us live on a desert island,

puzzled when, in my senior year of high school, my

there are always changes in the way we go about our

fel ow classmates voted me “most studious.’ I figured

lives from day to day. I have found that if I know

it surely could not be true because I didn’t even know

in advance what to expect and that there is a valid,

what that meant, exactly. Being studious was just

important reason for this change, then I can usual y

another concept that I had difficulty grasping.

accept the change on an emotional and cognitive

Thus, I had my own way of learning how to learn.

basis. But if the change is a total surprise, and seems

For instance, the word “running” would conjure up for

arbitrary at that, then I have difficulty mental y

me an image, a memory of someone hurrying to the

accepting it’s realness.

bus stop to catch the bus, breathing heavily, with me

For the autistic individual, virtual y everything

cheering them on.

about life is not only frustrating but is so in the

Doing this not only made it more tangible, but

extreme. The rituals serve a useful purpose in that

easier to remember as wel . Why visual imagery? I

they impose a sense of order for those who need

think perhaps so many people within the autistic

it. Otherwise, they are forced to cope with the

spectrum are visual y oriented because the other senses

continuously high level of frustration in other, less

are even more vulnerable and thus more problematic.

appropriate ways. Thus, a ritual is a vital technique for

I also discovered that the best time to learn was

coping with a confusing, often disorderly world.

while I considered myself at play. I would make the

Especial y during childhood, al the time I feel

learning situation into a game. I would be relaxed

either very comfortable and secure, or else very

and comfortable, and learning became much easier.

uncomfortable and insecure. Back then, it was always

Experience has shown me that concept learning is

either one extreme or the other. I recal many times

best done when the child is relaxed, especial y while

things during childhood that when things were not

the individual is at play—not during periods of high-

exactly explained to me, and especial y not in tangible

pressure dril s. It is my belief that such dril s produce

terms, it caused me to feel mental y frustrated and

masses of memorized statements, but little more.

quite insecure.

Another aspect of mental rigidity involves the need

Thus, as one might expect, I found ways to cope,

for routines and rituals. Everyone has at least some

including rituals. Some of my rituals were common,

need for a sense of order and, with it, daily routines.

such as not stepping on cracks in the sidewalk. But I

Just imagine how hectic life would be without those

also felt compel ed to tap my teeth together a certain

daily routines, if one had to decide every morning how

number of times and in a certain manner. Or tap

to get out of bed, what to eat for breakfast, what route

my thumbs with my forefinger in perfect geometric

to use to get to work, and so forth. Indeed, our lives

patterns.

are fil ed with enough stress as it is, without making it

During meals, I ate in “rounds.” That is, I would

exponential y more so with constant decision-making,

take one bite of everything on my plate, then start

as would be the case if one had no daily routines.

again. If I disliked an item on the tray, I simply

Thus, we al need at least some sense of routine and

removed it. Since it no longer belonged with my meal,

purpose, but children especial y need it, and autistic

I felt no obligation to eat it—and the sense of order

children need it most of al —simply because of the

that my psyche required was maintained. My drinks

mental rigidity that comes with the disorder.

had to be placed on the tray so that they could be

That mental rigidity is a major trait of autism

included in the meal.

that has been known for a long time. One of the

Another ritual involved the way I walked the half

implications of this is that autistic children, living in

mile home from the bus stop. I had a compulsion to

a chaotic world as everyone does, must find ways to

walk with my right foot on the road and my left foot

impose on their environment a sense of order. Life

on the grass. Any deviation from this and I had to walk

never comes completely scripted, so far as I know,

it over. Also, I could not enter a bathtub without first

anyway. As much as I might like sameness, life stil

rubbing my feet three times each. At the front door, I

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would knock three times, turn around three times, and

than ever. The sensory dysfunction, as it worsens,

shuffle my feet three times before entering. At school,

leads to yet more anxiety and frustration. The cycle

I had to go to my desk, shuffle my books, go touch the

continues until interrupted. As one can see, the wel of

teacher’s desk, then return to take my seat.

sensory-related suffering goes deep.

In time, as I developed and as I learned to cope in

Nature intended us, for our own survival, to have

other ways, my need for rituals decreased.

sensory defensiveness. A certain amount of touch

Truly one of the beautiful aspects of classic autism

sensitivity is necessary to warn us of dangers. Have you

is the sense of innocence. Autistic individuals tend to

ever been out in the yard or in the garden, and felt this

be playful, optimistic and a bit mischievous. We tend

spider crawling up your arm? Or tried to read with a

to want to project good feelings toward others and

fly annoy you? When a sensory system dysfunctions

expect that in return.

so greatly as it frequently does in autism, the tactile

Out of this sense of innocence comes a sense of

system is especial y affected. The skin itself becomes

wonder that pervades every day. No matter how often

hypersensitive.

I have experienced it before, it is always as if it is

So, what does a light touch feel like? The best way

the first time. I am amazed at the way honeysuckles

I can describe a light touch from the point of view of

manage to fil a whole neighborhood with their

someone with sensory problems is that it is like having

fragrance. I look up at trees reaching up to the sky, and

bugs crawling al over you. Believe me, it is quite

marvel at their magnificence. I see streams bubbling

annoying. This can be anything with a rough, abrasive

and wonder about that too.

texture, like certain foods. This would especial y apply

to polyester-based clothing. Stiff, roughly textured

III: Sensory difficulties

blankets can be just as annoying. I often wonder why

manufacturers ever make blankets scratchy like that.

For al the inherent difficulties affecting those within

Tactile sensitivity is one of the main reasons in-

the autism spectrum, I would have to say that, by far,

dividuals with autism so often have trouble sleeping

the one that causes the most suffering and torture is

through the night. After al , who can sleep with that

the tendency toward Sensory Dysfunction, also cal ed

kind of stuff going on? No wonder I had so much dif-

Sensory Integrative Disorder.

ficulty sleeping through the night for most of my life.

There are several sensory-related issues that, for

A second way this hypersensitivity affects is me

someone who is autistic, cause the disorder to be much

visual y. I often have to keep my computer screen

more troublesome than need be. Indeed, it is the

dim to avoid high contrast and the brightly colored,

tendency toward sensory difficulties that makes autism

animated advertisements that decorate most web

so difficult to deal with.

pages. Such harsh glare tends to make me instantly

Also cal ed sensory defensiveness, the worst part is

nauseous. On my real y bad days, even ordinary

that it tends to go in an unending cycle and worsens

fluorescent lights seem to resemble strobe-like

as it continues—until abated. Parents and teachers

floodlights. I may not see the flickering, but I can

may observe it as negative behaviors or as an extreme

certainly feel it.

reluctance to do certain things. But what is real y

For me, the worst part of going to the dentist was

going on is that the child is suffering from sensory

never the shots or the dril ing; it was the glare from

distress. Being unable to talk, as is the case so often in

the lamp. More than once, I wanted to tel the dentist

classic autism, the child is unable to express what it is

what he could do with his evil lamp. Unfortunately, I

that is torturing him or her.

couldn’t talk for having to hold my mouth wide open.

The sensory dysfunction and overload tend to lead

Noise can be a problem. Hearing sensitivity is

to a heightened level of frustration and anxiety. As

especial y troublesome for me because it is difficult to

the nervous system becomes increasingly stressed, the

protect myself from. Unlike visual distress, it doesn’t

sensory dysfunction worsens, causing harsh sounds

help just to turn the other way. Actual y, turning my

and rough textures to become even more irritating

head so that one ear is facing away from the noise,

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My Story — Daniel Hawthorne

just makes the pain worse. It seems that both ears

For the first few seconds, I feel my head fil ing

must hear the sounds to a similar degree for my brain

up, as it were, and being overwhelmed by al the

to process it adequately. The two types of noise that

sensory data coming my way, and I cannot ignore it.

bother me most, though in vastly differently ways, are

At first I am acutely aware of the neural pressure, like

sharp, explosive sounds and crowd noise.

one feels the pressure of the water when diving into

Sharp or sudden noises may include such things

several feet of water. I am also acutely aware of how

as metal banging on metal, pencils tapping against

uncomfortable it is, how much it hurts. I feel the

a desk, chalk squeaking along a chalkboard, tires

shock waves start at the ears and travel through every

squealing, metal forks touching ceramic dishes, as

nerve fibre in my body. It feels like an electrical jolt

happens at mealtime, car horns blowing and car doors

surging through my entire nervous system.

shutting. Leaf blowers, sirens and vacuum cleaners are

Then, as the sensory overload sets in, I become

also major offenders.

dazed and have difficulty functioning. I can’t focus my

What’s worse is that the sound does not even have

thoughts. My brain gets overwhelmed to the point

to be loud to be irritating. Water coming out of a

that conscious thought is difficult. Mental fog sets in.

faucet, a toilet flushing, the hum of a dishwasher or an

I begin to feel mental y and physical y numbed and

air conditioning system al bothered me.

disoriented. If I stay there long enough, I feel an aura

It feels like electrical shock waves beginning at my

coming on, leading to yet another seizure.

ear, and being especial y bad there, but also traveling

Later, after some rest, mental y I may feel I have

along every nerve fibre of my body.

recovered somewhat, but physical y I feel bruised. I

The other type is crowd noise. Our senses are like

ache and sting al over as if my entire nervous system

windows to the world. Information is uploaded to

were in rebel ion.

the brain for processing. Nature knew that our brains’

After repeated assaults, my senses would indeed

processing ability needed protecting. Thus, during

become confused. I would get dazed and numb. I

periods of loud crowd noise and such, most people

could have an ache without grasping where I feel the

are able to block out irrelevent noise. As noted earlier,

ache, or even whether I feel, hear or see it. At times my

it’s the specialized cel s known as Purkinje that do

senses have gotten so confused and al I have known

the magic. Unfortunately, without them in sufficient

is that it was torment of some kind and it was real.

quantity, sensory information overload becomes a big

As anyone who has ever been to a dentist can verify,

problem for those of us who are autistic. Without this

after being numb a while one begins to crave a sense

protection, we remain so vulnerable.

of feeling in the anesthetized area. Now imagine if

Crowd noise can be found everywhere, and even a

one’s entire body remained numb over a long period of

smal amount hurts me. So most of my life has been

time. For most, the craving would be unbearable, and

fil ed with torture. Al too often I find myself in a

so it often is for the autistic individual. Thus, the level

social setting, fil ed with people innocently talking—

of frustration remains high and the quality of life low.

and I am total y unprepared for the unwelcome

As a child, and even now at times, I have had a

bombardment of meaningful noise on my senses.

continuous feeling that my arms and legs were no

Unable to simply ignore it, I find myself forced to

longer attached. I have felt compel ed throughout the

listen in on and try to make sense of every single

night to continuously rub my joints and wiggle my

conversation going on in the room. At such times,

toes, without ever actual y gratifying the strange need I

I feel as if I were a fortress under siege from both

had to touch, to feel something, anything at al . It has

meaningful and meaningless sensory data. Mental y,

caused me a lot of insomnia.

I may know what noise is relevant and what isn’t, but

I once fel off the cab of a truck and completely

my senses don’t know. So my senses pick up every bit

broke my wrist, but felt no pain or other discomfort

of available information. Because speech is meaningful

at al from it. My body was that numb. As I looked

noise, my mind wants to somehow grasp it al , to

down, the sight of my limp hand looked odd, but it

somehow comprehend everything being said.

did not hurt. I could not feel any physical sensation

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at al . I realize now I was fortunate not to have gotten

hurt more than I did throughout my childhood, as

things for me could have been much worse without

my realizing it.

But there is a craving that often goes along with

this kind of numbness. If one has ever been to a

dentist and had one’s gums and jaw numbed so the

dentist could do a root canal, one may understand

just how annoying numbness can be, no matter what

the cause. After a period of such numbness, one starts

craving some kind of physical sensation in the area

that got numbed. Now imagine if one felt that same

numbness al over one’s body. Imagine, too, that

this numbness is not only continuous but lasts for

an indefinite length of time. This could be months,

even years. After a while, one gets desperate to feel

something, anything at al , even if the means to that

end is inappropriate.

IV: Some final thoughts

Do I feel cheated not to be like other people? Not at

al . I like and accept who I am and I have a passion for

life. I am who I am and would not want to be anyone

else, even if I could.

The difficulties of my life have made me more

appreciative of the beauties of life, and tend to make

me appreciate the value of friendships I have made

along the way.

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Light at the end of the tunnel

Contributing Author Terri Robson is an adult with Asperger’s Syndrome. She is the controller at Autism Today. She has a Bachelor of Education with a Music Major and an English Minor. As well, she has a Music Merchandising Diploma and is a Certified Journeyman Partsman. She is pursuing a designation as a professional accountant. She loves great music, good wine, reading, camping and spending time with her partner of 10 years, family and friends. She has 2 purebred dogs (1 of whom is a Canadian and American Champion) that she calls her children. Terri loves being an “Aspie” and wouldn’t want to be any other way.

Resources and links—Terri Robson suggests visiting her Autism Today website to learn about her other products and services. Visit <http://robson.autismtoday.com> today! (*Please note, don’t put in the www.) I debated with myself during the writing of this as to often than not I wasn’t even aware of it myself. I was when (in the course of the article) to disclose that

ostracized and bullied in school even though I was

I have Asperger Syndrome. Should I come right out

bigger than most of my peers. It wasn’t “easy being

with it or should I build the suspense until the end.

green.”

Needless to say I came right out with it (a very special

So I did my own thing and got in trouble a lot

co-worker suggested I fill you in at the beginning).

because I didn’t conform to the norm. Just what

I have spent most of my life wondering what was

is the “norm” anyway? It took me many years to

wrong with me and why I was so different. For the

develop coping skills and techniques to be able to

longest time I didn’t have any answers and neither

do the things I wanted and knew I was capable of

did anybody else. Not that many people wanted to

doing. Yet there were 2 or 3 people who loved me

know. It seemed that no one wanted to get to know

unconditionally. For that I feel very blessed.

me or understand me. But I must say I didn’t know

My music and my love of reading helped through

or understand myself either. I didn’t have any friends.

the tough times (of which there were many). When I

Sometimes that really hurt yet at other times it didn’t

was playing my trumpet, and later the euphonium, I

bother me at all. I was quite content to do my own

was able to put all the hurt, anguish and joy into my

thing. What a strange contradiction.

music and no one was intimidated or repulsed. What

There were many issues with family members. I

an experience. There was joy in my life; I just wasn’t

remember my aunt telling me (within the last few

able to realize it then.

years) that she would have her version of a pep talk

My diagnosis of Asperger Syndrome came late in

with my cousins before we went for a visit. It went

my life; well, at the time I thought it was late. I was in

something like this: Okay boys, your Auntie Marilyn

my early thirties. Initially the diagnosis was ADHD

and the kids are coming for a visit. We all know how

yet that didn’t ever seem to fit. My spouse and friends

Terri can be so we need to tread lightly. This isn’t an

didn’t agree with the diagnosis because I met very

exact quote but you get the gist of it. I’m still amazed

few of the criteria. However, that’s all I had so I went

that even in my late 30’s these words had the power to

with it. A few years later my psychiatrist mentioned

devastate me. At times they still do.

Asperger’s Syndrome and he believed I should be the

There were good things about me, special gifts if

recipient of such a delightful diagnosis. Lucky me, I’m

you will, yet not many seemed to notice. I excelled at

an Aspie!!

academics, music and sports but people only seemed

Actually, he was bang on. As I started reading

to see my “obnoxious and socially unacceptable”

more and more literature I realized I could have been

behaviours. I wanted to shout “there is a fun and

(and still should be) the poster child for Asperger

enjoyable person in here” but I couldn’t because more

Syndrome. What an incredible relief. I finally had

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something to hang my hat on. For those of you

who are reluctant to label your child (or yourself) I

encourage you to go for it. There was a reason I did all

those strange and wonderful things as I was growing

up. I wasn’t just a big freak who didn’t fit in anywhere

and nobody liked. Now I’m a big freak with a label

and I love it.

I have come to a place in my life where I love

and respect who I have become and who I am. I still

don’t always fit in, but that’s okay because I have my

own space. I don’t always say the right thing in public

but when my family and friends need my support I

somehow figure it out. I’m honest to a fault and I’ll

be there for you through thick and thin. Once you’ve

climbed my walls and seen through my behaviours

and mannerisms that offend you will have a very

special place in my heart and I in yours. Love me

for who I am and the rewards are tremendous (so

are some the challenges but hey, that goes with the

territory).

Take the journey with your child, family member

or friend as you both grow and learn. Remember,

there is light at the end of the tunnel. I have found

mine.

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Table of Contents

CHAPTER 1

CHAPTER 2

CHAPTER 3

CHAPTER 4

CHAPTER 7

Chapter 9: Helping

CHAPTER 9

CHAPTER 12

CHAPTER 13

CHAPTER 14

CHAPTER 15

Part I: With respect to psychotherapy

Part II: With respect to consulting

CHAPTER 16

CHAPTER 17

CHAPTER 18

CHAPTER 19