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Vol. 2 No.1

Spring 2000

T H E N E WS L E T T E R O F T H E A S S O C I AT I O N F O R S C I E N C E I N A U T I S M T R E AT M E N T

PLE ASE NOTEOUR NEWA DDRESS:

Science in
Association forent
Autism Treatm
6Road, Suite 40
175 Great Neck
11021
Great Neck, NY

Surgeon General
Endorses Intensive
Behavioral
Intervention
for Autism
United States Surgeon General David
Satcher, MD, PhD, has endorsed intensive behavioral intervention for individuals with autism. Mental Health: A Reportof the Surgeon General states, “Thirty yearsof research demonstrated the efficacy of
applied behavioral methods in reducing
inappropriate behavior and in increasing
communication, learning, and appropriate social behavior.”
The report is available on the world wide
web at www.surgeongeneral.gov/library/mentalhealth/chapter3/sec6.html#autism.
The report can also be ordered by calling
1-877-9MHealth, or by writing to Mental Health, Pueblo, CO 81009.
CONTENTS

Vol. 2 No. 1

Spring 2000

Editorial .......................................................... 2
Evidence-Based Practice ................................... 4
Viewpoint ....................................................... 5

A S S O C I AT I O N F O R S C I E N C E I N A U T I S M T R E AT M E N T

iGive.com ........................................................ 7
Distance-Learning Opportunity ....................... 7
Is Autism on the Rise? ..................................... 8
Conference 2000 Report ................................ 10
Green Receives Award ................................... 11
Catherine Maurice’s Opening Remarks .......... 12
Conference 2000 Tape Order Form .............. 13
Voices ............................................................ 15

DIAGNOSIS: AUTISM
A Family’s Journey To Obtain Effective Treatment“It’s very apparent to us that this is autism.” The developmental pediatrician’s words
hit me like a nuclear bomb as I sat in the examination room cradling my 19-month-oldson. I wanted to run far away with my son ina futile attempt to protect us from everyone,
and from the autism that loomed ahead of us
like a dark storm cloud.
After performing a battery of diagnostic
procedures, the professionals who made thediagnosis recommended that we immediately
place Justin in their therapeutic nursery program. The program treated children withvarious disabilities and, at the time, we didn’t
realize that there were any other options available to us. We were assured by the professionals that this was the appropriate placementfor our son.
In the months that followed, we faced frustrating
obstacles and heartbreaking
decisions. The process of securing an accurate second
opinion was fraught with misdiagnoses by several professionals of varying disciplines.
We discovered it was necessary
for us to become “immediate
experts” in the field of autism,
since the professionals towhom we turned for information lacked even a rudimentary knowledge of autism andits treatment options. We thenhad to address the challengeof securing appropriate andbeneficial treatment for a con-dition we knew nothing about and received
no treatment guidance for; all the while, we
as parents were enduring the agony of grieving the loss of our “normal” child before he
was barely a child. We felt that we were racing the clock, as every day our beautiful little
boy slipped further away from us, and fromthe typical development he had displayed justa few short months before.
Justin floundered in his nursery program.
The program was staffed by a very attentive
special education teacher and two aides assigned to eight children. Speech and occupational therapies were also provided. However, my son preferred isolation and engaging in bizarre behaviors over group activities
like circle time, singing songs and doing arts
continued on page 3

ASAT Executive staff member Marissa Bennett and son, Justin.

SCIENCE IN AUTISM TREATMENTSPRING 2000

ASAT BOARD OF DIRECTORS
Richard Foxx, PhD
Sigrid Glenn, PhD
Gina Green, PhD
John Jacobson, PhD
Lawrence Lee, MD
Suzanne Letso
Catherine Maurice, PhD
James Mulick, PhD
Lora Perry, MS
Gerald Shook, PhD
Bridget Taylor, PsyD
Dov Zaidman, CPA

EXECUTIVE STAFF
Kathy Mannion, Executive Director
Marissa Bennett

OFFICE MANAGER
Mary Neilsen

ASSOCIATION FOR SCIENCE IN AUTISM TREATMENT

PLEASE NOTE OUR NEW ADDRESS:

Association for Science inAutism Treatment
175 Great Neck Road
Suite 406
Great Neck, NY 11021
Phone: 516-466-4400
Fax: 516-466-4484

My twin sons Jason and Joshua are six years old. They have not recovered from autism.
Does that mean they never will? Maybe, but I’m not willing to call it yet. Here’s why:First of all, I have reason to seriously disagree withpeople who say recovery from autism is not possible.
The big news is that all
What is recovery from autism? At its most basic level, individuals with autism,
it is when the individual once met but no longer
meets the criteria for autism in the Diagnostic and regardless of age, can makeStatistical Manual of Mental Disorders, the DSM-IV. significant, meaningful
As a parent, I will not dignify the contention that if progress toward rich andthe child recovers, he was obviously once misdiagindependent lives using
nosed. The circular logic inherent to the idea thatscientifically validated
autism is by definition a life-long disorder will nevertreatment methods.
get us anywhere. Emerging data show we may needto change that definition.
Secondly, there is nothing wrong with pursuit of the ideal. People who say we should let
autistic individuals be autistic have never faced my sons’ self injurious and perilously aggressive behaviors. No one can convince me it is humane or ethical to accept that these behaviors
are simply part of my sons’ natures.
Thirdly, we know much more today about how individuals with autism can learn. I will
not look to the past as an indication of what the future will bring. If we decide recovery isunattainable after the age of six and we stop trying, it will be a self-fulfilling prophesy. I mightalso point out that one of the children in the original Lovaas study required six years oftreatment before he no longer met the diagnostic criteria for autism.
Am I in denial? No. I will love my children forever, autistic or not. I will also always help
them to reach their full potential until I draw my last breath. For more than 50% of individuals with autism, the big news is not that there is a “limited window of opportunity” forrecovery. The big news is that all individuals with autism, regardless of age, can make significant, meaningful progress toward rich and independent lives using scientifically validated
treatment methods. If recovery happens along the way, so much the better.
- Lora Perry, Editor

ASAT MISSION STATEMENT
THE ASSOCIATION FOR SCIENCE IN
AUTISM TREATMENT WILL:

Article submissions and letters to ASAT should
be sent to the above address. Submissions should
include the writer’s full name, address, home andwork telephone numbers. Submissions may beedited for clarity or space. To order back issues,
conference tapes or conference books, call ASAT
at 516-466-4400.

Disseminate accurate, scientifically sound information about autism and treatments for autism; andImprove access to effective, science-based treatments
for all people with autism, regardless of age, severityof condition, income, or place of residence.

All Rights Reserved©Association for Science in Autism Treatment.

The contents of this newsletter cannot be reproduced without permission from the Associationfor Science in Autism Treatment.

2

EDITORIAL
Is It All About Recovery?

E-mail: ASAT@autism-treatment.org

Articles in Science in Autism Treatment are theauthors’ intellectual property. They may be copied and disseminated, provided that a) they are
reprinted in their entirety; b) correct attribution(author name and ASAT affiliation) is cited; andc) written permission is obtained from ASAT.

SCIENCE IN AUTISM TREATMENTWE WILL FULFILL OUR MISSION BY:
Educating professionals and the public about stateof-the-art, valid treatments for people with autism;
Supporting certification, to ensure all individuals
with autism receive treatment from practitioners
who have met minimum standards of competency;
Forming interactive, supportive partnerships with
universities to develop accredited educational
programs for autism practitioners, andImproving standards of care for people with autism.

VALUES
STATEMENTASAT is committed to science as the most objective,
time-tested and reliable approach to discerning between safe, effective autism
treatments, and those thatare harmful or ineffective.
ASAT supports all scientifically sound research on theprevention, treatment andcure of autism, as well as alltreatments for autism thatare shown to be effective
through solid scientific research, regardless of discipline or domain.

SPRING 2000

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ASAT

Providing Accurate, Science-Based Information u Promoting Access To Effective Treatment

Providing Accurate, Science-Based Information u Promoting Access To Effective Treatment

15

SCIENCE IN AUTISM TREATMENTSPRING 2000

Framework for the Future:
Creating a System to Develop Effective
Treatment Practitioners for the New Millennium
SIGRID S. GLENN, Ph.D., BCBASHAHLA ALA’I-ROSALES, Ph.D., BCBA 20-ASAT-19
Behavorial Assessment and EmpiricallySupported Treatment of Feeding Disorders
in Children with Autism
WILLIAM H. AHEARN, Psy.D.
20-ASAT-20

Incorporating Peers in the Treatmentof Children with Autism:
Putting Research into Practice - Part II
BRIDGET A. TAYLOR, Psy.D.

20-ASAT-21

Immunogenetics: Hopes and Cautions
WILLIAM M. McMAHON, M.D..

20-ASAT-22

CONFERENCE SPECIAL: COMPLETE SET 22
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SCIENCE IN AUTISM TREATMENTSPRING 2000

and crafts. Justin’s discomfort with theschool environment and being separated
from me would cause hours of crying. As
the other children began to make progress,
it seemed that my son had not benefited fromintervention at all. I remember thinking that
I wished Justin needed such little help as wasavailable in his nursery program. It was very
apparent that Justin needed “something else”
that was “more intensive,” but I had no idea
what that something else was.
We continued researching autism andtreatments. We reviewed every autism program in our area and, later, the country. Unfortunately, the process became even more
complicated: every question we asked wasanswered differently by different people,
which led us down more paths to be explored. I felt the injustice of not only having to deal with the diagnosis of autism, butalso that we needed to become detectives aswell. There were no professionals or organizations to guide us. We were told things like,“You’re the expert when it comes to yourchild. You will know best as to what type ofintervention you feel is right for him andyour family.” I was aghast that the investigation and direction of treatment was being
placed so squarely on our shoulders. Surely
we were not the first family to deal with autism. I wondered: if our child had a terminal illness, would the recommendations forcourse of treatment be so subjective and elusive, or would professionals prescribe treatment proven to be effective? We were desperately looking for experts to guide us. This
child was our world, and we were willing tomove heaven and earth to help him, but noone could show us the way.
The literature I found was grim. Little
was known about autism as a disorder, except for the symptoms individuals displayed.
Outdated books and articles yielded even lessin the way of treatment breakthroughs; outcomes were expected to be institutionalization, and crippling, lifelong impairments. Inan effort to help evaluate early intervention
programs, I began to ask for statistics on how
many children with the diagnosis of autism
had been successfully mainstreamed into
public schools. I was told no such data werecompiled. How were we to judge a program’s
effectiveness in treating our son’s disability
if we had nothing more than the assurance
that the program was the appropriate placement? Even more serious, how were providers able to judge their own program’s effectiveness, and where was any measure of accountability?
Eventually, I came across an article abouta center-based program for children with au-

tism that utilized the principles of applied
behavior analysis (ABA). The article went
on to quote the program’s statistics of successful transitions for some of the children
to less restrictive environments. At last we
felt that we had stumbled onto a promisingpath.
I gradually began to learn that ABA as ascience had been used to teach and treat children with autism for the past 30 years withsome very promising, documented results.
I also discovered that while the science of
ABA does not involve invasive procedures
like surgery, it requires as much academic
and clinical preparation of practitioners as
any specialty in the medical field. I didn’t
fully understand the science of ABA at thetime, but I realized it was the only treatmentthat could offer us scientifically valid outcome data and, because of that, we needed
to pursue it for our child.
By utilizing ABA, first privately and eventually in a center-based program, Justin finally began to flourish. As we became moreeducated about ABA, it made complete sense
to us that Justin was able to make such immediate and significant progress. His program was individualized to define goals designed to address his specific deficits, and tobuild new skills. Each goal was broken down
into incremental, measurable steps. As eachincrement was mastered and then combined,
it enabled him to master the “building
blocks” for each goal. By using daily data tochart his performance, accurate decisions
could be made regarding the direction of his
programs. ABA was an incredibly effective
way to teach Justin everything in his life, literally, aside from breathing.
Because nothing came “naturally” for Justin and he did not learn by watching others,
every skill needed to be taught to him. Since
he seemed to lack language comprehension(both verbal and non-verbal), Justin was unable to follow spoken directions. This alsomeant that before using ABA, we had no accurate way to measure how much of theworld Justin was able to comprehend. Byutilizing ABA programs, however, my son
was able to master goals like imitating others and following directions. He alsoachieved a marked increase in both his receptive and expressive language. He wastaught to utter sounds, then blends, thenwords, and finally sentences. This was donein conjunction with learning to comprehend
what he is saying, as well as what is being
said to him. In addition to academic goals
like reading, writing and mathematics, Justin also needed to be taught basic self-help
skills like using the bathroom, brushing his

teeth, going to sleep at night, remaining
asleep until morning, bathing and dressing.
As a parent, perhaps the most difficult thing
for me to accept was that my son had to learn

I am enabling my child,through effective, science-based
treatment, to reach his fullest
potential now, under ourpresent system of knowledge.
That is my peace of mind.
how to tolerate interaction with people, andto receive and reciprocate affection and love.
By using ABA as a teaching and treatment method, Justin continues to broaden
his life and that of our family in very constructive ways. Thanks to ABA, he is able totolerate getting his hair cut, and going to thedoctor and dentist. He is learning to swim,
and now enjoys outings to the movies, malland the homes of family and friends. My
son has learned how to learn.
Justin is now 9 years old and, unfortunately, remains a child acutely impaired byautism. He is a verbal child, able to express
his basic wants and needs, yet he is not what
one would consider conversational. My son
cannot tell me about his day, or if he feels ill.
We can’t talk about his fears or share ourhopes and dreams, but we do share an incredible love for each other and, despite autism, are able to enjoy a beautiful relationship. My son’s autism has not been cured,but he continues to make significant
progress. He has benefitted immensely fromthe course of intervention we have chosen
for him. While our life is by no means easy
or typical, we are not devastated by the obstacles that come our way. We know we candevelop a strategy to assess the situation, andto teach Justin whatever skills are necessary
to address and overcome the problem. We
feel Justin’s best chance of maximizing his
potential will come from letting science lead
us. By choosing science for Justin, we now
have the security of knowing that we aredoing everything we can to help him become
the best that he can possibly be.
As a mother who loves her child absolutely, and wishes only the best for him, I
support credible research into the possible
biological causes and cures of autism. However, I also need to know that I am enabling
my child, through effective, science-based
treatment, to reach his fullest potential now,under our present system of knowledge.
That is my peace of mind.

ASAT

ASAT

Providing Accurate, Science-Based Information u Promoting Access To Effective Treatment

Providing Accurate, Science-Based Information u Promoting Access To Effective Treatment

3

SCIENCE IN AUTISM TREATMENTSPRING 2000

What is Evidence-Based Practiceand Why Should We Care?
By Jeri A. Logemann
The following article is reprinted with permission from the March 14, 2000 issue of The
ASHA Leader, a journal of the American
Speech-Language-Hearing Association.
Professionals in a variety of disciplines
are talking about evidence-based practice. So
what is it?
Evidence-based practice means that clinicians use evaluation and treatment procedures for particular disorders and populations. Evidence-based practice also takes into
account current understanding of the pathophysiology of the disorder(s) being treated,clinical expertise, and the client’s preferences
for treatment.
Evidence-based practice means that clinicians are using procedures that have beenstudied carefully and whose result have beenreviewed and published. Even though our
education as speech-language pathologists
and audiologists has included the use of diagnostic and trial therapy, the latter does notmean that the evaluations and procedures we
use with patients should not be based in evidence indicating their efficacy.
Sometimes clients, parents, and others,
in desperation, “want to try anything.” Forexample, a patient approached me via email,desperate to return to eating after a severe
skiing accident. This young man had tried anumber of treatment approaches with goodefficacy that were unsuccessful for him andrequested my opinion about trying anotherprocedure. I indicated that I knew of no evidence that the procedure he named was successful with any patient group, let alone forhis problem as he had described it, since I
had not seen him in person. He emailed backin a month to say that he had requested permission from his insurance company to receive this treatment procedure, but was toldthat they would not pay for it as it was experimental and had no evidence of effectiveness in any population.
If we provide treatments that lack evidence to support their usefulness in a particular population of patients, we risk wasting patients’ time and money, increasing their4health risks, and not being paid for our services. In the educational setting, using procedures with no efficacy puts us at risk for slowing children’s progress and wasting time precious to their development and learning.
Some clinicians say, “I have good experience with a technique that has no efficacy data
published in peer-reviewed journals. What do
I do?” If you are using an unproven technique,you have a responsibility to collect and publish the data on its effectiveness. My advice is
to collect data systematically. Be sure to control for confounding factors, such as spontaneous recovery. If you are inexperienced indesigning and writing in a research mode,
contact a researcher in one of our university
programs who, I’m sure, would be interested
in working with you.
Our professions’ futures depend on the effectiveness of our treatments, not on our impressions of their effectiveness. When you go
to a workshop or continuing education experience or, better yet, before you go, it’s important to ask the presenter if data exist on
the techniques being described and in what
peer-reviewed journals you can read about thedata. It is irresponsible for presenters to discuss and advocate screening, diagnostic, or
treatment procedures that are not supported
by such evidence. It’s important that we as
clinicians question the kind of data available

to support the usefulness of a technique. It’s
critical our patients’ well-being and our professions.
Our professions are ahead of most in
ever-strengthening our evidence base. Although we still don’t have every bit of evidence we would like, we should be proud of
the evidence we do have available to support our procedures and should consider
these data as we care for patients. Each of us
has a contribution to make in this area. Consider how you can collect data in the ASHANOMS and Clinical Trials projects in yourown setting. It’s time to care about evidencebased practice.
To learn more about how you can participate in NOMS, contact ASHA’s National
Center for Treatment Effectiveness in Communications Disorders at 301-897-0101 or
look on ASHA’s Web site at www.asha.org/
ncteed/treatment outcomes.htm. Information on the Clinical Trials Project can be obtained by calling 301-897-5700, ext 4367.
REFERENCES
DeJong, G. Toward an Evidence-Based Rehabilitation Culture. (1999). Rehabilitation Outlook, 4,
10-11.
American Academy of Neurology. (1994). Reportof the Therapeutics and Technology Assessment
Subcommittee. Neurology, 44, 566-568.

SCIENCE IN AUTISM TREATMENTSPRING 2000

Were You Unable to Attend Conference 2000?
Do You Wish You Could Hear It All Again?
I N T E R N AT I O N A L C O N F E R E N C E O NSCIENCE IN AUTISM TREATMENTNEW YORK MARRIOT T MARQUIS - MARCH 9-10, 2000
Sponsored by The Association for Science for Autism Treatment- Conference Special Extended -AUDIO TAPES AVAI L ABLE!
THURSDAY - MARCH 9, 2000

Cost-Benefit of Behavioral and Fad Treatments
for Autism Spectrum Disorders:
What Have You Got to Lose?
JOHN W. JACOBSON, Ph.D., BCBAJAMES A. MULICK, Ph.D.
20-ASAT-09

WELCOME - Richard Foxx, Ph.D. & INTRODUCTION TO
ASAT - Catherine Maurice, Ph.D., President
Molecular Genetics of Autism
JOSEPH D. BUXBAUM, Ph.D.

20-ASAT-01

FEATURED SYMPOSIUM ON BRAIN PLASTICITY:
MAXIMIZING HUMAN POTENTIAL THROUGHEFFECTIVE AND APPLIEDLEARNING TECHNIQUES - PART I
Does Behavioral Intervention Change the Brain?
GINA GREEN, Ph.D., BCBA
Antagonizing Brain Damage in Adulthood by Learning
RICK TESSEL, Ph.D.
20-ASAT-02
GENERAL SESSION:FEATURED SYMPOSIUM - PART II
The Quality and Quantity of Experience
Needed for Brain Development:
Some Lessons From Animal Research
JAMES BLACK, M.D., Ph.D.
Reorganization of Brain Functioning
through Learning and Practice
GEORGE NIEMANN, Ph.D.
Clinical Practice Guidelines:
Methodology, Findings and Implications
STEPHEN R. ANDERSON, Ph.D.

20-ASAT-03

20-ASAT-04

20-ASAT-05

Applied Behavior Analysis:
The Critical Need for Focus on Analysis,
Not Technique
RAYMOND G. ROMANCZYK, Ph.D.

20-ASAT-10

Defining the Language, Communication
and Theory of Mind Deficits in Autism
HELEN TAGER-FLUSBERG, Ph.D.

20-ASAT-11

FRIDAY - MARCH 10, 2000
GENERAL SESSION:
Behind the Schoolhouse Door:
Eight Skills Every Teacher Should Have
GLENN I. LATHAM, Ph.D.

20-ASAT-12

Early Identification of Autism
DEBORAH FEIN, Ph.D.

20-ASAT-13

Naturalizing Language:
A Critical Review of Speech/Language
Research and its Implications
for Treatment Within a Behavioral Model
JOANNE E. GERENSER, MA, CCC-SLP

20-ASAT-14

The Social Brain: Building a Model
From Neuroimaging Studies of Autism
ROBERT SCHULTZ, Ph.D.

20-ASAT-15

Project Play: Using Play to Learn About Objects,
Events and Language in Social Contexts
KARIN LIFTER, Ph.D.
20-ASAT-06

Which Autism Treatments are Evidence-Based?
RONALD KALLEN, M.D.
20-ASAT-16

Fluency-Based Instruction:
A New Standard for Teaching Effectiveness
CARL BINDER, Ph.D.
20-ASAT-07

Strategies for Beginning an Augmentative
Communication System: Best Practice Guidelines
Derived from Recent Research
JOE REICHLE, Ph.D.
20-ASAT-17

Teaching Language to Children with Autism:
Scientific Foundations of Behavioral Language
Assessment and Intervention
JAMES W. PARTINGTON, Ph.D.
20-ASAT-08

Incorporating Peers in the Treatmentof Children with Autism:
Putting Research into Practice - Part I
BRIDGET A. TAYLOR, Psy.D.

20-ASAT-18

PLEASE FI LL OUT ORDER FORM ON BACK COMPLETELY“Grandpa Ron”, with Brian, son of ASAT Supporters Diane and Ray Olsen.

ASAT

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Providing Accurate, Science-Based Information u Promoting Access To Effective Treatment

13

SCIENCE IN AUTISM TREATMENTSPRING 2000

Catherine Maurice’s Opening Remarks at
Conference 2000: Science in Autism Treatment
In response to the numerous inquiries ASAT
has received since Conference 2000, Science inAutism Treatment is pleased to reproduce
Catherine Maurice’s opening remarks in full.
The Association for Science in Autism
treatment was formed by people who shared a
dream: That every family whose child received
a diagnosis of autism could have access to credible information and effective treatment.
Defining that dream meant that we had to
acknowledge a painful fact. Credible information and effective treatment has not been available to the vast majority of families. Instead,most of the families we knew had to wend their
way through conflicting claims, internet gossip, sensational fads and strong opinions,
whether grounded in facts, or not.
Treatment has for decades consisted of threemajor options: first we had a variety of psychoanalytic approaches, born of the assumption that autism was caused by emotional
abuse, neglect, or misunderstanding of a hurting child. Under this model, a therapist tried,
through play therapy or through psychoanalysis (which must have been a trick with a nonverbal child) to bond with the child, to become,in a sense, a surrogate parent. The only problem with this model, of course, is that it was
based on a mistaken premise. Autism is notcaused by emotional trauma or parental mishandling. The consensus, after decades of neurological research, is that it is a biological, genetic condition, that cuts across the spectrumof race, class, socioeconomic status, parenting
skill or style.
Starting around the late seventies, as thattype of approach began to go out of fashion (itis by no means eradicated yet), a second treatment option began to be explored. There wasa rush to identify the biological cause or causes
for autism, and a cure. While this is, of course,a critically important quest, it has so far resulted in a dizzying array of questionable interventions, levied on vulnerable children, sensationalized by the media, and marketed aggressively by their promoters. However, withthe formation of groups such as the National
Association for Autism Research, we may see
one day the results of more credible research,peer-reviewed and scientifically sound. If suchgroups keep their standards high, and are reasonably wary of each new Lorenzo’s oil breakthrough, they may very well keep alive our hopefor an effective biological treatment.
For the past few decades, a third treatment
option was being refined: behavioral interven-

12tion. This approach was very pragmatic. It basically said: We don’t know what the cause is,and we may be a long way from a cure. Let’s try
to teach the children whatever we can today. Thisapproach took all tasks, from learning to get
dressed to learning to talk, and broke down thattask into multiple tiny steps, helping each childto master those steps at his or her own pace.

We are dedicated to speaking thetruth about any treatment thathas shown it works, or thatshows true promise, according
to standards of reason
and science.
Unfortunately for all of us, behavioral intervention has been largely ignored by the psychiatric and special education establishment, who
tend to dismiss it as robot training, cruel, ineffective, etc. Now, of course, since research showsthat behavioral intervention can sometimes result in normal functioning for some kids, andmeaningful progress for most, some of thesesame folks who excoriated behavioral intervention are rushing in to claim expertise in thisdomain. This creates other complications:
namely, the publication of books that promotea superficial understanding of behavioral science,and public confusion about what constitutes
quality behavioral treatment.
But even when professionals are well-intentioned, when they wish to deliver intervention
that has been researched and tested, when they
are genuinely humble about what they know anddon’t know, many are expressing frustration thatthey cannot get the training they desire, andparents are anguished when they can’t find qualified help.
How to begin to address some of these problems? Our answer was to found an organization dedicated to disseminating research-based
information about treatments for autism, to support certification standards for treatment providers, and, eventually, to establish and supportmodel training programs for therapists – in short,
to do all we could to improve the standards ofcare for people with autism who are alive today.
Our founding members are professionals andparents. We knew that any group purportingto screen information needed professionals renowned for their high standards of scientific objectivity. We knew that any group purporting
to uphold the rights of people with autism

needed parents, because the principle job of
all parents is to defend and protect their children. In short, we knew that parents and professionals needed each other, if we were to makea difference in the lives of people we treasure.
We are dedicated to speaking the truth
about any treatment that has shown it works,
or that shows true promise, according to standards of reason and science. We really do notcare if that promise comes from the biologicalor the behavioral realm; if autism will one day
be cured by eating apricot pits and chanting
poems, we will embrace that treatment – if it
stands up to rigorous scientific scrutiny.
And if it does not, we will not hesitate tosay so. We have seen too much time, money,and life wasted on silly fads and magic bullets,
in the “try anything” approach. After fifty yearsof this circularity of failed treatments and faulty
premises about autism, it is time to move on,
to create a new vision for the future, one
founded on science, and inspired by trust andcompassion. For after all, none of us would be
involved in this arduous task if we did not believe in three fundamental principles:
The principle of science, by which I meanthat all opinions about treatment, including ours, all hypotheses and all expertiseshould be challenged and tested, as we seek
to identify the best possible care for people
with autism.
The principle of trust, by which I mean ourassumption that people with autism are capable of learning, throughout their lives, aslong as we commit to teaching them well;
The principle of compassion, by which I
mean the assumption that people with autism deserve our unfailing devotion, however far they progress or not, as cherishedmembers of our families and our communities.
One final note: in these brief remarks, I
have attempted to outline our mission and our
dream. But if this mission is to thrive, it must
be embraced by all of us. It is our hope that by
the end of this conference, you and we will
become an “us” fighting together to raise thebar and improve the lot of all children andadults with autism. For it is the children, rather
than any one group, any abstract concept,
theory, or scientific rule, who must inspire andunite us. As the poet Stephen Spender has said:“No cause is just unless it guards the innocent
As sacred trust; No truth but that
Which reckons this child’s tears an argument.”

SCIENCE IN AUTISM TREATMENTSPRING 2000

VIEWPOINT:
Applied Behavior Analysis in Speech-Language Therapy
As a Speech-Language Pathologist (SLP),
my first reaction to the idea of applied behavior analysis (ABA) as a methodology withwhich to teach language to children with
autism was discomfort. My impression wasthat ABA was rigidly used to teach isolated
skills that are difficult to generalize, andApplied behavior analysis
has helped me to move towards
becoming a more effective andaccountable practitioner.
therefore did not become functional. This
went directly against the grain of the training that I had received in the 1970s. At thattime, open classrooms and whole language
instruction were in vogue. Phonics were considered obsolete. Some educators dispersed
rigid rows of desks into more relaxed clusters, and some schools did away with thewalls. The objective of this informal approach to education was to encourage selfexpression and creativity in both students
and teachers.
In 1979, I began work at Maine Medical
Center (MMC). In contrast to the more relaxed expectations of public schools, the outcome-based medical community at thisteaching institution emphasized evaluating
symptoms and determining diagnoses.
Data-based substantiation of patients’progress and of the efficacy of specific treatment strategies was required.
In 1989, I left MMC to enter private
practice. I had a particular interest in helping individuals who had little or no speech,
and who would benefit from the use of Alternative and Augmentative Communication
devices (AAC). In my private practice, I continued the work I had begun at MMC todevelop better services for individuals in needof AAC. Referrals started coming to mypractice for children with a variety of disabilities, including autism.
Teaching any non-verbal child to use
AAC presents unique challenges. To begin
with, AAC requires the use of symbols toconvey messages. The child has to learn totranslate communicative concepts into symbols, expressively and receptively. In the beginning, this is typically taught using adultmodeling of symbol use, dialogue boards, andsentence strips to “talk about” activities or
items that are enjoyable for the child. Oncethe child has mastered the concept of symbolic language, he is introduced to the technology. This presents its own complexities.
While I had had success teaching non-verbal children who did not have autism to use
AAC, teaching children with autism wasmuch more difficult. Many of the communicative strategies on which I depended formost children were not effective for children
with autism. These children did not initiate
communication in the conventional ways.
They were unresponsive to facial expressions
or other social cues. Many children with autism have few, if any, play skills, so it wasdifficult to engage them. Frequently, children
had little interest in playing with peers. These
children with autism seemed to require far
more repetition to master skills than children
who did not have autism.
Regardless of the diagnoses that children
presented with in my practice, by far one of
the most frustrating aspects of treatment waslack of consistent follow-through in theschools, institutions, or home settings. In thecase of children with autism, it was most critical that the follow-through was provided by
the caregivers on a day-to-day basis. This was
as important as the speech therapy that wasprovided for an hour twice a week. Communication strategies needed to be systematicallywoven into every aspect of the learner’s life.
This would provide the functional reason tocommunicate, which seems to enhance communication development for all children, regardless of disability.
My first exposure to comprehensive ABAintervention came in 1995 with a referral to achild in a center-based ABA program. Basedupon rumors and innuendo, I expected theprogram to be sterile. Behavior analysts teachchildren to be robots, I was told, and use punishment. They do nothing but discrete trials
at the desk. Children are in such intensive

programs that they don’t have time to be children.
After observing children at the center, I
realized that these impressions were grossly
misplaced. I saw that applied behavior analysis offers much to help me teach children tocommunicate. The staff at the center wererunning carefully detailed programs targeting specific communication skills one ormore times each day. Despite different staff
running the programs, the specificity of thesteps comprising programs ensured theywould be run the same way every time. Because the intervention was intensive, thelearner was presented with many learning opportunities throughout the day.
And then there were the data! Staff maintained notebooks for each child, which contained programs designed to meet thelearner’s unique goals and objectives, and thedata substantiating the child’s progress. By
reviewing these data, I could see exactly whatlevel of performance I could expect from thechild when I worked with him.
I also learned that the techniques used
in applied behavior analysis would complement as well as supplement the strategies that
I had learned to be effective in teaching com-Natalie, daughter of ASAT Supporters
Dennis and Alice Pelletier.

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5SCIENCE IN AUTISM TREATMENTSPRING 2000

munication to children. Many of the techniques used during discrete trials could also
be used during “teachable moments” and incidental learning opportunities. Modeling,
prompting, playing, and reinforcing weretools used consistently in both ABA andspeech therapy.
As time went on, I realized there can be
an almost symbiotic relationship between
speech therapy and applied behavior analysis. The gains children made in discrete trials prepared them to learn in more naturalistic environments during speech therapy.
From a clinical perspective, I now define
goals in much more objective and measurable terms, and devise systematic hierarchiesof learning based upon the child’s uniqueneeds. Reminiscent of my Maine Medical
Center days, I substantiate the efficacy oftreatment with solid data. I am now much
more inclined to include baseline and interobserver agreement as I deploy new ways toteach children communication. In the beginning, this seemed to take away some ofthe spontaneity of my interactions with thechildren. As time went on, however, I
learned to be spontaneous within the definedstructure of the child’s program and objectives.
Furthermore, the structure inherent to
ABA provides a high level of detail about thechild’s learning style and rate that is usefulto everyone on the intervention team. ABA
also imposes an intensity and consistency
that is so critical to effective speech-language
therapy for many children.
Another advantage that I discovered
about good ABA programs is that the staff
are very well trained. Staff consistently
implement programs to the letter once they
are established. Staff are also very insightfulwhen probing changes and adjustments. Initiatives to credential ABA practitioners willencourage an even higher level of professionalism, further improving outcomes for children with autism.
The requirement to collect data in ABA
programs ensures that the programs are run
regularly; follow-through of therapeutic recommendations is the expectation, not the
exception. The SLP can establish an important partnership with ABA professionals.
This partnership becomes even more important when the child is having difficulty acquiring a skill. Collaboration among professionals who know the child’s learning style
well is key to breaking through obstacles to6learning.
Another advantage of having ABA staff involved in speech therapy is that these professionals already know how to do their jobs.
The SLP can explain the outcome objective,
and ABA staff can adjust programs or appropriately begin to fade prompts based upon
analyses made possible by the emerging data.
Quite simply, applied behavior analysis hashelped me to move towards becoming a more
effective and accountable practitioner. I now
study the ABA literature, looking for new ways
to teach each and every child. I also use techniques inherent to ABA with individuals presenting with diagnoses other than autism.
But what does speech therapy bring to thediscipline of applied behavior analysis? Basedupon my experience, it brings much richness.
SLPs can help transfer communicative skills
learned in discrete trials, and other behavior
analytic teaching methodologies, to the realenvironment. We can show behavior analysts
ways to elicit communication in novel settings, perhaps by sabotaging the environment.
We can offer ways to teach commenting (“thebird is blue”), or giving directives (“look at
the boat!”). And we can help identify skills
that the child needs in the natural environment, which may need to be broken down
and taught in discrete trial or other systematic format.
At the risk of sounding psychodynamic,
I’ve learned there is opportunity to “let thechild lead” in speech therapy, but also to apply the methods of applied behavior analysis
to lead the child back to our stated objectives.

For example, I tried to get a child to utter
specific vowels and phonemes. He preferred
to “speak” words using his communication
device. We compromised: once the child uttered an approximation, I allowed him to also
say a word with that sound in it with his“talk box.”
Another thing SLPs can bring to an autistic child’s communication plan is perspective on the mode of communication a child
can use. Many children with autism have thecognitive ability to understand and form
complex communicative concepts. Somecannot articulate these concepts verbally. We
do not want to wait for a child to be verbal
to teach communication, or we will hold him
back developmentally and behaviorally. SLPs
can offer a range of modes to augment communication, and identify the best one for theindividual child.
Today when I work with teachers, aides,
and families outside the ABA practitioner
community, I frequently get comments suchas, “He can do it if he wants to.” Now, my
response is “Where’s the data?”
When I hear, “He does it most of thetime,” I simply can ask, “Where’s the data?”
After a rocky start, I have become committed to the importance and value of applied
behavior analysis. The data will prove it.
Mark R. Hammond, MA, CCC-SLP
Speech-Language Pathologist
Mark R. Hammond Associates, Inc.
Portland, MaineSCIENCE IN AUTISM TREATMENTSPRING 2000

opment Consultant. Attendees were provided with in-depth information about
how to develop an agency, its mission,
goals and program design, as well as specifics on determining staffing needs, qualifications, recruitment and training of staff,
fiscal management, public relations,fundraising, site, space and materials selection, and curriculum development.
Both workshops proved extremely helpful to all in attendance.
Conference 2000: Science in Autism
Treatment was a tremendous success for
ASAT. We do not judge our success by
how well the conference was executed,
but rather by how much our attendees
benefited from it. As one educator wrote,“I thank you for giving me the opportunity to learn so much in two days. As an
educator in an ever-changing field, it is soessential to the children that I teach to keep
up on the valuable information out there,

and you have made that possible . . . . . thankyou, thank you, thank you for your muchneeded efforts.” And finally, another educator wrote “the conference was excellent, and
ASAT ‘s mission is amazingly on target. So
much is happening to move us in the right
direction – now it’s time for us to go homeand use it! Where is the conference next year?”. . . . . Stay tuned.
Conference tapes can beordered by using the attached form.
Conference books containing handouts

PLEASE NOTE OUR
NEW ADDRESS:
Association for Science inAutism Treatment
175 Great Neck Road
Suite 406
Great Neck, NY 11021
Phone: 516-466-4400
Fax: 516-466-4484
E-mail: ASAT@autism-treatment.org

and biosketches of all presenters areavailable. For more information,please call the ASAT office at
516-466-4400.

ASSOCIATION FOR SCIENCE IN AUTISM TREATMENT

Green Receives Psychology THANK YOU!
Today Mental Health Award
Gina Green, PhD, BCBA, a member of the ASAT Board of Directors,
is one of eight men and women selected to receive Psychology Today’s First
Annual Mental Health Awards. The
awards announced in the May/June
issue of the magazine recognize “courageous people who have helped us
feel and function better” through theirexemplary work in mental health.
Green was the winner in the categoryof mental health professional.
Currently the Director of Researchat the New England Center for Children and Associate Scientist at the
E.K. Shriver Center in Massachusetts,
Dr. Green has worked with people
with autism and other developmental
disabilities for the better part of 20
years. She has made significant contributions to the field of behavior
analysis, including serving as this year’s
president of the Association for Behavior Analysis. Dr. Green has been atireless advocate for effective, science-

based treatment for people with autism,
and others with special needs.
Other Psychology Today honorees include David Satcher, MD, PhD, UnitedStates Surgeon General; Donald O.
Clifton, PhD, Chairman, Gallup International Research and Education Center;
Ann Landers, syndicated advice columnist; Judy Weber, Tobinworld Executive
Director; Herbert Benson, MD, Harvard
Medical School Associate Professor of
Medicine; Tipper Gore, Mental Health
Policy Advisor to President Clinton; andCelinda Jungheim, a survivor of mental
illness.
“I’m flabbergasted but deeply honored,” Green said of the award. “It’s especially gratifying that our efforts to promote a science-based approach to autism
are being recognized in a national publication. My colleagues from the New England Center, the Shriver Center, ASAT,
and ABA who support and share in thoseefforts also share in this award.”

Jason, son of ASAT Board Member Lora Perry and her husband Steve.

Conference 2000: Science in Autism Treatment
was successful due to the generous support of oursponsors, and through a tremendous volunteer
effort. Sincere thanks to:
Merrill Lynch & Co., for sponsorship of theconference manual
Pro-Ed, Inc., for sponsorship of the conference brochure
The Marriott Marquis Hotel, for theirgracious attention to ASAT and ourconference attendees
Mike Kostel, for his support and guidance
throughout the planning and implementationof the conference, and for his unwavering
support of ASAT
Bobby Newman, PhD for arranging for CEU
credits for Behavior Analysts
Andrew R. Adesman, MD, for serving as
CME Course Director
The Long Island Jewish Medical Center/Long
Island Campus for the Albert Einstein
College of Medicine Office of Continuing
Medical Education, for their efforts withadvance and onsite registration, and theadministration of CME accreditation
Melissa Andretta, Bill and Nancy Donlon,
Nanette Jacobs, Anita, Bonnie and Shelly
Levyns, Megan McGinn, Deborah Molloy, Ray
and Diane Olsen, Marianne Simoni and Nicole
Weidenbaum for volunteering their time andendless energy to the conference, and for theircommitment to ASAT’s mission
ASAT would also like to thank Richard Kobel,
for his assistance in the relocation of the ASAT
office.

ASAT

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11

SCIENCE IN AUTISM TREATMENTSPRING 2000

CONFERENCE 2000:
Science in Autism Treatment An Overwhelming Success“As a pediatrician and parent of an autistic child, it was truly a pleasure and a welcome change to sit in the presence of so many
interested, dedicated and knowledgeable professionals. My faith has been renewed. I havenewfound energy to go home, to continue
providing our daughter with the environment and tools for her to be happy and productive. The information I received at theconference will also be very helpful in my
advocacy work for my patients, as well as in
the educational and political arenas.”“What a wonderful conference! You dida tremendous job – the program was excellent, the speakers were uniformly superb, andeverything went like clockwork! . . . You
can enjoy a real sense of accomplishment
knowing you’ve made an impact on the livesof hundreds of children and their families.”
Conference 2000’s impact on improving
the lives of individuals with autism was celebrated by the over 800 attendees at ASAT’s
First Annual Conference on Science in Autism Treatment. Over two days in March,
parents, professionals, physicians, educatorsand grandparents gathered at the Marriott
Marquis Hotel in New York City to hearscientifically sound information about autism and treatment options from biologicaland behavioral experts. People came from 40
states and 8 foreign countries including Austria, Saudi Arabia, Brazil, Australia, Canada,
Mexico, Puerto Rico and the United Kingdom.
The comprehensive presentations at
Conference 2000 covered the most current,
state-of-the-art, scientific investigation andfindings on the causes and treatment of autism. Biomedical topics included Molecular Genetics of Autism, Brain Plasticity, Evidence-Based Treatments of Autism, Psychopharmacological Treatments for People with
Autism, Neuroimaging Studies of Autism,
and Immunogenetics. Presentations on effective, science-based treatments of autism
included the topics of Brain Plasticity, Fluency, Toilet Training, Applied Behavior
Analysis, Incorporating Peers, Teaching Language to Children with Autism, Naturalizing Language, Augmentative Communication, Feeding Disorders, Using Play to Learn
about Objects, Events and Language in Social Contexts, and the Language, Commu10

nication and Theory of Mind Deficits In Autism.
Parents and professionals also benefited
from the critical information that was presented about the early identification of autism, and the cost-benefit of behavioral vs. fad
autism treatments. A highlight of the conference was an entertaining and enlightening
presentation by Dr. Glenn Latham entitled
Behind the Schoolhouse Door: Eight Skills
Every Teacher Should Have. Dr. Latham’s
amusing anecdotes, extensive knowledge, wisdom, compassion, and personal experience as
grandfather of a 5-year-old boy with autism
touched all who heard him.
The Association for Science in Autism
Treatment was pleased to honor Marie BristolPower, PhD, Director of the Program for Behavioral and Biobehavioral Research in Mental Retardation and Developmental Disabilities. Dr. Bristol-Power is also Coordinator of
the National Institute of Child Health andHuman Development/National Institute of
Deafness and Other Communication Disorders (NICHD/NIDCD) Network on the
Neurobiological and Genetics of Autism, andCollaborative Programs of Excellence in Autism. Before her invited address “Autism:
Beginning the New Millennium,” ASAT recognized Dr. Bristol-Power’s tireless efforts toimprove awareness of and increase researchfunding for autism. “Without change there
can be no breakthroughs; without breakthroughs there can be no future,” Gina Green,
PhD said in presenting the award. “We arepleased to present Dr. Bristol-Power with thisaward in recognition of her lifelong commitment to science, and of her support of individuals with autism.”
Attendees overwhelmingly embraced theconvenience of having access to importantbiological and behavioral presentations under
one roof. “Overall, the conference provided
us with ample opportunity to increase ourknowledge of autism. I was personally impressed with the highly sophisticated, documented research, reflecting the level of commitment of professionals in the field.” “Thetwo-day conference was very informative andeye opening. I learned a great deal. Excellent
speakers and a great variety of topics. Thankyou.” “ I was impressed with the highly professional nature of the conference. Well or-

ganized, knowledgeable and accomplishedpresenters, wide variety of interests and needs
represented.” “Thank you – you are helping so many families.”
Continuing Medical Education Credits
were sponsored by the Long Island Jewish
Medical Center. Their support and recognition of the conference is greatly appreciated, and it played an important role in helping to attract more physicians to learn aboutautism.
ASAT would also like to gratefully acknowledge the Doug Flutie, Jr. Foundation
for their support of the conference. Througha scholarship grant awarded to ASAT, 33
families of children with autism were able toattend and benefit from the conference. As
one parent wrote, “This has been an incredible experience with lots of great learning opportunities. I am very thankful to the Doug
Flutie, Jr. Foundation for the opportunity
to be here.” Another wrote, “I am so thankful that I was able to come to this conference. I am recharged to go back home andhelp my son with the problems he has been
facing in his kindergarten class.” Yet anotherparent wrote “What more can I say than...WOW!! I LOVED the conference! It completely validated my program for my son,and gave me hope up the wahzoo!! ASAT
and the scholarship recipients wish to extend
sincere thanks to the Doug Flutie, Jr. Foundation for their support of and commitment
to families of individuals with autism.”
The conference was complemented by
two post-conference workshops. Over 100
people attended a workshop on Effective
Advocacy: Protecting the Rights of Individuals with Autism given by Charles Jelley, Esq.
and Richard O’Meara, Esq. Both attorneys
shared valuable information about meetingthe current and future needs of individuals
with autism. The second workshop, How to
Establish a Behaviorally Based Education
Program for Individuals with Autism, waspresented by the Connecticut Center forChild Development (CCCD). CCCD’s Executive Director Suzanne Letso was joined
by Patricia Fitzsimons, MS, CBA, Early Intervention Coordinator, and Jodi Mazaleski,
MS, CBA, Elementary Education Director.
Assisting the CCCD executives were Michael
Solakian, CPA and Paul Grimmer, Devel-

SCIENCE IN AUTISM TREATMENTSPRING 2000

DISTANCE-LEARNINGOPPORTUNITY

The Department of Behavior Analysis
at the University of North Texas (UNT)
offers a distance-learning graduate courseon basic behavioral principles. The course
was designed by ASAT board member Dr.
Sigrid Glenn, UNT Professor of Behavior
Analysis. It is the first in a sequence of fourcourses that will cover all the content required by Behavior Analysis Certification
Board (BACB) as part of their requirements for certification. The course is conducted via the Internet and CD-Rom, costs$850, and is open to anyone with abachelor’s degree in any subject. The next
course will begin in Fall, 2000. For more
information, log onto the following web
site: http://webct.courses.unt.edu/public/
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iGive.com Purchases
Help Support ASAT
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There is no fee to become a member of iGive.com, and sign-up is easy at
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ASAT is entirely donor supported. A single print run of this newsletter costs
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To continue to do that, we need your help. Please take advantage of the savingsand convenience of on-line shopping at iGive.com, and designate ASAT as yourpreferred charity.
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139. Maps.com 3.5%
49. Cheapest Hotels.com 2.0%
94. GourmetGiftmail 7.5%
140. McAfee.com 5.0%
50. Chef's Catalog 4.0%
95. GourmetMarket 12.5%
141. MicroWarehouse 1.0%
51. ChipShot.com 10.0%
96. GreatCoffee.com 5.0%
142. MoMA 4.0%
52. Chocolate Source 5.0%
97. GreatFlowers.com 5.0%
143. more.com 7.5%
53. Collectibles Today 6.0%
98. GreatFood.com 5.0%
144. Mother Nature 10.0%
54. Computers4sure 1.5%
99. GreenMarketplace.com 5.0%
145. MountainZone.com 7.5%
55. Cooking.com 10.0%
100. Guiding Light Video 4.5%
146. MP3.com 2.5%
56. Crucial Technology 3.5%
101. Hallmark.com 8.0%
147. MUSE Body Mind Spirit, Inc. 5.0%
57. dELiAs.com 4.0%
102. HammacherSchlemmer 5.0%
148. MVP.com 5.0%
58. Dell 0.5%
103. Hardware.com 8.0%
149. NeoComputers 1.5%
59. DiscountNutrition.com 13.0% 104. Health4Her 10.0%
150. Nettoy.com 4.0%
60. Disney Store 2.5%
105. HearthSong 5.0%
151. NextMonet 3.0%
61. DogToys.com 7.5%
106. Hershey's Gift Store 2.5%
152. NextPlanetOver 5.0%
62. Drugstore.com 7.5%
107. Hickory Farms 3.5%
153. Nirvana Chocolates 5.0%
63. eBags.com 7.5%
108. Hifi.com 2.5%
154. Omaha Steaks 3.5%
64. eDelights.com 5.0%
109. Hollywood.com 3.0%
155. Online Office Supplies 6.0%
65. eHobbies.com 5.0%
110. HomeWarehouse.com 5.0%
156. Optical Site 5.0%
66. eMerchandise.com 11.0%
111. HookedonPhonics.com 6.0%
157. Orvis 7.5%
67. eNutrition.com 10.0%
112. iBaby 5.0%
158. OshKosh B'Gosh 5.0%
68. ESPRIT 3.5%
113. ibeauty.com 7.5%
159. Ourhouse.com 2.5%
69. EthicalShopper.com 4.0%
114. IBM.com 0.5%
160. OutdoorDecor.com 7.5%
70. Eve.com 4.0%
115. iGive Event Store 4.5%
161. Outpost.com 1.5%
71. EverythingWireless.com 5.0% 116. iGo.com 7.5%
162. Patagonia.com 2.5%
72. First Jewelry 5.0%
117. Illuminations.com 3.0%
163. Paul Fredrick Men 4.5%
73. Flooz.com 7.5%
118. ImmuneSupport.com 7.5%
164. PC Connection 1.5%
74. Flower Farm 5.0%
119. Impulse Buy Network 4.0%
75. Fogdog 5.0%
120. Intel AnyPoint Home Network 2.5% 165. PeakHealth 15.0%
166. Personal Creations 7.5%
76. Fossil Watches 7.5%
121. Intl Golf Outlet 5.0%
167. Pets.com 6.5%
77. FragranceNet.com 4.0%
122. J Crew 2.5%
168. PetsMart 6.0%
78. Franklin Mint 3.0%
123. JCPenney 2.0%
169. petstore.com 5.0%
79. FranklinCovey 7.5%
124. JCWhitney 3.0%
170. PhotoAlley, Inc. 2.5%
80. Frenchtoast.com 3.5%
125. Jewelry Spotlight 5.0%
171. PlanetRx 7.5%
81. FultonStreet.com 4.5%
126. Jos. A Bank 2.5%
172. PocketScience 11.5%
82. Furniture.com 2.5%
127. JustBalls.com 5.0%
173. Powells 5.0%
83. FurnitureFind 3.0%
128. KbKids.com 5.0%
174. Pro-Se-Sports 6.0%
84. GameFever 3.0%
129. Lands' End 2.5%
175. proflowers.com 5.0%
85. Gameprosuperstore.com 3.5% 130. LandscapeUSA 4.0%
176. ProTeam.com 4.0%
86. Games2Learn 5.0%
131. LearnandPlay 6.0%
177. Reader's Digest 33.0%
87. Gap.com 2.5%
132. LensExpress.com 2.5%
178. Recorded Books 4.0%
88. Garden.com 2.5%
133. Luxury Finder 2.5%
179. Reel.com 4.0%
89. Gazoontite.com 10.0%
134. MagazineOutlet.com 15.0%
180. REI 2.5%
90. Gear.com 4.0%
135. Magazines.com 12.5%

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181. REI - Outlet 2.5%
182. ScentWarehouse 5.0%
183. Seattle's Coffee 10.0%
184. SelfCare 7.5%
185. Shades.com 5.0%
186. Sharper Image 5.0%
187. Shop Sports 7.5%
188. ShopMattel.com 7.5%
189. SmarterKids 5.0%
190. SmashBox 5.0%
191. Software Buyline 1.5%
192. Sparks.com 10.0%
193. SpaWish 3.0%
194. SpencerGifts.com 3.0%
195. Spiegel 3.0%
196. StacksandStacks.com 3.5%
197. Stress Less 6.0%
198. SwissArmyDepot 5.0%
199. Tavolo 5.0%
200. Textbooks.com 2.5%
201. The Company Store 2.5%
202. The Scholar's Bookshelf 5.0%
203. Thousand Cranes Tea 5.0%
204. TieMaster 6.0%
205. TotallyFunToys 6.0%
206. Toys-R-Us 6.5%
207. Toysmart 5.0%
208. Travelnow.com 5.0%
209. TSI Soccer 2.5%
210. TurboPrice 1.0%
211. Tutorials.com 7.5%
212. uBid.com 1.0%
213. Ultimate Outlet 3.0%
214. Underneath.com 5.0%
215. USAopoly 5.0%
216. VarsityBooks.com 3.5%
217. Warner Bros. Studio Store 3.0%
218. We Behave 5.0%
219. WearGuard.com 5.0%
220. WholePeople.com 4.0%
221. Wickers 7.5%
222. World of Science 5.0%
223. Yak Pak 7.5%
224. Zones.com 1.5%

7

SCIENCE IN AUTISM TREATMENTSPRING 2000

Is Autism on the Rise?
From Congress to popular media, speculation is increasing that more children haveautism than ever before. Call it what you’d
like: autism, pervasive developmental disorder (PDD), autism spectrum disorders (ASD)or Asperger syndrome (AS). While there areclinical distinctions between these terms, they
all mean the same thing to parents: “some-

Before seeking answers tothese questions, it’s importantto understand the difference
between “prevalence”
and “incidence.”
thing is wrong with my child.” And parents
want to know why.
But is it true? Are there really more kids
with autism today than in generations past?
Or do other factors give this impression? Are
we just better at diagnosing children with autism? Are professionals more willing to makethis diagnosis? Are more children referred andreported simply because more services areavailable? “More” children have autism relative to what?
Before seeking answers to these questions,it’s important to understand the difference between “prevalence” and “incidence.” Prevalence is the number of people at a point intime or over a period of time who have a particular identified condition. This is usually
expressed as a number of people per 10,000of the general population. Incidence refers to
the number of people who are newly identified or acquire a condition over a period oftime, often over a year or a longer period.
For example, in a population of 100,000
people, perhaps 300 have measles at any one
time (“point prevalence”) and 1,200 have it
during the course of a year. The point (oftime) prevalence is 300/100,000, and theannual (yearly) prevalence is 1,200/100,000.
Assuming 300 cases at the beginning of a year,that means there are 900 new cases of measles
in a year. The annual incidence rate of measles(in this purely hypothetical example) is therefore 900/100,000.
So, the prevalence of ASD can be thenumber of people with ASD at a point in
time, and the number of new cases increases
the prevalence at any point. There are othermathematical relationships between incidence
and prevalence, beyond the scope of this report. Confounding things even further, theautism literature sometimes uses varied, or in-

8

consistent, denominators for these estimates.
An important nuance about prevalence isthat its accuracy is only as good as the degree
to which each individual who actually has thecondition is counted (the numerator or top
number of the fraction), and the completenesswith which the “general” or other population
has been counted (the denominator or bottom
number of the fraction.) Accuracy in these two
figures can be hard to achieve. In fact, there
are no scientifically based epidemiologicalprevalence estimates for ASD in the UnitedStates at this time. Federal agencies have, however, called upon researchers to submit proposals that will develop better prevalence rates.
Until research in the United States resultsin more accurate figures, the National Institutes of Health (NIH) have suggested the following prevalence rates for ASD based upon
research in other Westernized, developing nations:
10/10,000 people with “classic” autism
20/10,000 people with ASD,
including PDD
50/10,000 people with ASD, including
PDD and Asperger syndrome.
These estimates are inclusive; that is, thethird estimate includes people in the first twogroups. This means that in a given large population, on average 0.5%, one-half percent of
the population, could be diagnosed with an
ASD.
To put this in perspective, the best estimatesof the prevalence of mental retardation is about
1.45% to 1.50%, or 145/10,000 to 150/
10,000. This makes mental retardation about
three times more common than autism. But
the 0.5% rate for ASD is high enough to constitute a public health concern, as is the 0.2%
rate for classic autism and PDD combined.
Despite the existence of these estimates,
there are problems with relying upon them.
First, the estimates are not from the UnitedStates, where the prevalence may be different.
Second, people are diagnosed in very different
ways, based on different clinical procedures,and using different diagnostic tools. There ispresently no biological marker, no distinctiveor particular biological signature, that serves
as a benchmark for autism diagnosis. People
are diagnosed at different ages and possibly bydifferent criteria. Clinics or practitioners may
use local norms; some children diagnosed according to these norms in one place or nation
may not meet criteria used in another.
Numbers can be skewed because children
living in some areas are more likely to be seenby specialists than are others, and children
with some health plans are more likely to havecoverage for specialists than others. Specialists are more likely to practice in urban areas,
but poor children, who are more common in
urban areas, are less likely than are more affluent children to be seen for specialist diagnosis and treatment.
Also noteworthy is that ASD is not agroup of conditions that is automatically included in public health databases. This means
children with ASD often become recognized
in research studies only because the child enrolls in some sort of service that does contribute to databases, or where there is other,ongoing research.
But some factors contribute to the likelihood that children with autism will be identified in some manner. Today, physicians andpsychologists may be more informed about
ASD. They may report more children moreaccurately, because of better diagnostic standards. Rules for diagnosis have been more
specific since about 1980, and throughout the
1990s there has been increased research on
Asperger Syndrome.
Consumers may have better access to professionals who can make informed diagnosis
of ASDs. The numbers of developmental pediatricians and child psychologists have increased modestly, and there has been continuing federal funding through the amended Maternal and Child Health Act for institutions
like children’s hospitals, where these professionals work.
Heightened awareness of ASD and better
practitioner skills among physicians and psychologists mean that the child who might
have been diagnosed with some form of learning disability or developmental delay in thepast is now more likely to be diagnosed with
ASD. Screening tools and rating scales unavailable in the past help today’s physicians
and psychologists to better detect an ASD.
Taken individually or together, these factors do not make it more likely that children
will be incorrectly diagnosed with ASD,
thereby inflating the reported number of children. However, researchers are attempting todevelop tools and scales that will assist even
earlier diagnosis of ASD, and this might increase or decrease the prevalence of children
with mild cases in the future.
However, there are at least two factors that
may be inflating the reported numbers of children with ASD. The first is the advent of theAsperger syndrome (AS) diagnosis. Diagnostic criteria for AS require less severe problems

SCIENCE IN AUTISM TREATMENTSPRING 2000

in living and learning than those for other
ASDs. As a result, there may be some people
with the very mildest apparent forms of AS
who are now diagnosed but would not have

The scientific foundationfor estimating the prevalenceof autism among preschoolers,
school age children, andadults is presently not verystrong in the U.S.
been in the past, and there may be some individuals diagnosed when it is not warranted.
AS diagnoses add considerably to the estimated prevalence of ASD. A good numberof the AS diagnoses are made of adults, inthe absence of detailed, solid information
about the person’s early childhood development. Questions can be raised about whether
this represents sound diagnostic practice.
The second factor which may be inflating ASD prevalence is practitioners’ desire tohelp children get needed services. After all,the purpose of diagnosis is to identify problems in specific terms that lead to well-defined, promising treatment. As scientifically
based treatments for ASD are recognized,
ASD diagnosis may be key to getting a child
more intensive early services. These services
hold the promise of significant therapeutic
benefit, if the child has problems similar to
those common in an ASD. This means thatsome children will be diagnosed with an ASD

even though they have more mild or relateddelays in development, or if they have behavioral problems often found in ASD. Although
this practice raises some grave questions, pediatricians or psychologists may view it as ameans of advocating for a child. Regardless ofwell-meaning intentions, this form of advocacy could inflate the rate at which ASDs are
identified and reported.
The scientific foundation for estimating theprevalence of autism among preschoolers,
school age children, and adults is presently notvery strong in the U.S. Some may point to a1999 report by the State of California on increased enrollments of people with ASD in Department of Developmental Services (DDS)
programs (Department of Developmental Services, 1999), or the high local rate of ASD reported in a New Jersey town (Kolata, 1999),
as evidence of increased numbers of children
with autism. However, because of its nature,
the DDS report can show only that more children are being referred and enrolled. Similarly,
the New Jersey township news story may show
only that the prevalence of ASD can vary
greatly in small population groups, such as aparticular city or town, from that of the general population. However, these limitations in
no way diminish the importance of serving
children and adults with ASD who have been
identified and referred for services.
Until there is a “gold standard,” either abiological marker or rating scale, it is hard to
estimate the accuracy of the tentative NIH
prevalence rates. Many of the studies on whichcurrent estimates rely were reviewed in a 1993

PLEASE
PLE
ASE HELP!
1999 was an outstanding year for ASAT.
More than 40,000 copies of Science in Autism
Treatment were distributed to parents, grandparents, teachers, psychologists, physicians,
special education directors, hearing officers, attorneys, therapists, government officials, students and others, throughout the world. Our
distribution continues to grow as more andmore individuals touched by autism recognize
Science In Autism Treatment as an effective tool
for advocacy, and as an essential resource forscience-based information on autism and treatment. The ASAT office receives requests for
Science in Autism Treatment via phone, fax ande-mail daily. We also receive compelling testimonials from individuals directly benefitingfrom the newsletter’s content.
Conference 2000: Science in Autism
Treatment drew more than 800 people, earning praise and recognition for this premiere
event. Attendees commented on the validityof the information presented, as well as its subsequent usefulness in practical application in

home, school, community andclinic settings. ASAT is overwhelmed with requests for annual conferences, and plans are already underway
for next year. ASAT conferences will continue toprovide state-of-the-art information on current research and best practice treatment guidelines to parents and professionals.
ASAT supported the efforts of the Behavior
Analysis Certification Board (BACB) to ensure
minimum levels of competency among ABA practitioners. To increase the labor pool of qualified
ABA professionals, ASAT has been developing a
graduate-level university-based training model,
including autism-specific curriculum and supervised internship requirements for graduate programs. These initiatives will help to significantly
increase the availability of qualified service providers using science-based methods to help individuals with autism.
Professionals on the Board of ASAT participate on the National Institute of Health’s Autism
Coordinating Committee, to advocate for sciencebased research and treatment protocols. Membersof our Board of Directors have also provided testimony to government committees, to convey thearticle by Dr. Lorna Wing. These used very
different methods to identify children, andvarying diagnostic criteria (Wing, 1993).
As noted before, epidemiological studies
from other nations suggest it is certainly possible that the prevalence of autism has been
underestimated in the past, and that PDD
and AS have not been broadly and representatively studied. An apparent increase may
simply be the result of better knowledge of
ASDs. From the standpoint of advocacy, there
are some incentives for suggesting that theprevalence of autism is increasing. However,
it is very difficult to support this assertion
with scientific, epidemiological evidence.
- John W. Jacobson, Ph.D.

REFERENCES
Department of Developmental Services. (1999,
March 1). Changes in the population of persons
with autism and pervasive developmental disorders in California’s developmental services system:
1987 through 1998. Sacramento, CA: Author.
Department of Education (1999). Digest of education statistics, 1998. Washington, DC: Author(GPO No. 065-000-01174-3, NCES No. NCES
1999036).
Kolata, G. (1999, January 31). Probing disease
clusters: easier to spot than to prove. New YorkTimes. (electronic format article fromwww.nytimes.com).
Wing, L. (1993). The definition and prevalenceof autism: A review. European Child and Adolescent Psychiatry, 2(2), 61-74.

acute need for good, ethical, scientificallysound autism research in the behavioral andbiomedical domains.
But much remains to be done. Over the
next year, ASAT will continue to produce anddistribute at least two issues of Science in Autism Treatment. The university-based training model will be piloted at carefully selected
universities. Our website, currently underconstruction, will go online shortly, making
it easier than ever to access science-based information about autism and treatment.
With your volunteer help and financial
support, ASAT will continue to work tirelessly on behalf of persons with autism. Please
help us to accomplish our shared vision andgoal of significantly improving the lives of
the individuals with autism who have touched
us so deeply, and the lives of those yet to beborn with this disorder.

Please give generously.
THANK YOU!

ASAT

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Providing Accurate, Science-Based Information u Promoting Access To Effective Treatment

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9