The Encyclopedia of Autism Spectrum Disorders: Autism Spectrum Disorders (Facts on File Library of Health and Living)

337 Pages·2006·1.26 MB·English

by  Carol Turkington, Ruth Anan, Carol Turnkington

THE ENCYCLOPEDIA OF
AUTISM SPECTRUM
DISORDERS
Carol Turkington
Ruth Anan, Ph.D.
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The Encyclopedia of Autism Spectrum Disorders
Copyright © 2007 by Carol Turkington
All rights reserved. No part of this book may be reproduced or utilized in any form or by any means,
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Library of Congress Cataloging-in-Publication Data
Turkington, Carol.
The encyclopedia of autism spectrum disorders / Carol Turkington, Ruth Anan.
p. ; cm.
Includes bibliographical references and index.
ISBN 0-8160-6002-9 (hc : alk. paper)
1. Autism—Encyclopedias. I. Anan, Ruth. II. Title. III. Title: Autism spectrum disorders.
[DNLM: 1. Autistic Disorder—Encyclopedias—English. WM 13 T939e 2007]
RC553.A88T87 2007
616.85’882003—dc22 2005027227
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This book is printed on acid-free paper.
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CONTENTS
Foreword iv
Acknowledgments vi
Introduction viii
Entries A–Z 1
Appendixes 165
Glosary 284
Suggested Reading 286
Index 309
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FOREWORD
utism spectrum disorders are pervasive devel- with more advanced language skills may demon-
Aopmental disabilities in which the core impair- strate more subtle impairments. Their language
ments have a profound influence on children’s may be stilted, or they may carry on monologues
development. A relative or total absence of recipro- about topics of interest to them, without regard to
cal social interactive skills is the primary symptom whether or not anyone is following their discourse.
seen in young children with autism spectrum dis- Pretend play and nonvocal communication using
orders. Unlike typically developing toddlers, who gestures and facial expression are generally also
make almost nonstop bids for parental attention, delayed.
these children make less frequent eye contact and In contrast to these two “negative symptoms,”
direct fewer facial expressions toward their par- or absences of specific skills, the third symptom
ents. They also fail to share their interest in things of autistic spectrum disorders involves behav-
they see through pointing and holding up objects ioral excess. Children diagnosed with autism may
for their parents to see. Typically developing tod- engage in repetitive mannerisms, such as flapping
dlers usually accompany these actions with sounds their hands, flicking their fingers in front of their
(and, later, actual words) to draw their parents’ eyes, pacing back and forth, running on tiptoe,
attention. In addition, they usually alternate their and so on. Objects may be used in unusual ways,
gaze between an object of interest and a parent’s such as spinning or tapping them or repeatedly
face. This stands in stark contrast with the way flicking a doll’s eyes open and shut. Some children
that an autistic child has trouble initiating a shared demonstrate an excessive interest in unusual top-
focus of attention. Likewise, children with autism ics, becoming fascinated with sprinkler systems
have trouble responding to their parents’ bids for or vacuums. Children diagnosed with autism also
shared attention. may be rigid, insisting on following specific ritu-
A significant problem with communication is als, demanding to perform activities in an exact
another core symptom in autistic spectrum dis- order, or following the same route to a destination.
orders. Preschoolers diagnosed with autism may When unable to engage in these ritualistic behav-
demonstrate delays in spoken language or may be iors, they become highly anxious or upset.
completely nonverbal. They may simply echo what Other behavioral excesses, although not part of
is said to them without meaning. Some children the core diagnostic symptoms of autism, also may
may be able to speak but demonstrate a lack of occur. Repetitive actions sometimes evolve into
pragmatic communication skills. In other words, self-injurious behaviors, such as head-banging,
they may be able to respond to direct questions but hand-biting, or face-slapping. Children unable to
cannot engage in back-and-forth conversations. effectively communicate their wants or needs may
They may recite pieces of dialogue from videos or scream, scratch, or hit. Parents, in their haste to
books, using these phrases out of context. Children end these disruptive actions, may attempt to placate
iv
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Foreword v
their children by offering desired objects or activi- Although experts widely agree that interven-
ties following aggression or self-injury, thereby tion should be both intensive and implemented at
inadvertently rewarding undesirable behaviors. an early age, there is a lack of consensus regarding
Effective treatment for autistic spectrum disorders exactly what form it should take. Of all treatment
must target these three core areas of impairment: options, intervention using principles of behavior
communication, reciprocal social interactions, and analysis has the strongest support from research. A
atypical behaviors. considerable number of studies have documented
Although the specific causes of autistic spec- substantial treatment gains in children receiving
trum disorders are still largely unknown, there is intensive, behaviorally based intervention. Fur-
consensus that autism is a biologically based, neu- thermore, there is evidence suggesting that treat-
rodevelopmental disorder with a strong genetic ment based on principles of behavior analysis is
component. In the last decade, symptoms of autism superior to equally time-intensive intervention
have been identified in younger and younger chil- using other methods.
dren, with diagnoses now being made as early as Treatment programs using behaviorally based
18–24 months of age. Parents of newly diagnosed techniques vary considerably in their emphasis on
preschoolers often retrospectively report that their formal discrete trial teaching versus more natu-
children showed negative symptoms, such as ralistic teaching strategies. Discrete-trial training
absent or impaired social and language skills much is highly directive, with the adult providing the
earlier. instruction and delivering the appropriate con-
As a result, routine screening for autism spec- sequence based on the child’s response. Discrete
trum disorders is now recommended by many pro- trials are typically conducted at a table, but can
fessional organizations, including the American be embedded within enjoyable play activities and
Academy of Pediatrics, the American Academy of daily routines. Sometimes criticized as an artificial
Neurology, and the National Research Council of manner of instruction, discrete trial teaching nev-
the National Academy of Science. Increasingly sen- ertheless has been shown to be an effective and
sitive screening instruments have been developed efficient way to teach skills. However, it is also
to identify children at risk, who are then referred essential to use systematic methods of generalizing
to interdisciplinary diagnostic centers. According these skills into natural settings in order to ensure
to current best-practice guidelines, comprehensive their effective use.
evaluation should include a combination of medi- Other behavioral teaching methods, such as
cal, developmental, and behavioral information. naturalistic environment training, emphasize a
A primary goal of early identification of autism child-initiated interaction in a less structured envi-
spectrum disorders is to implement interventions ronment. The common premise of naturalistic
as soon as possible—and the earlier treatment behavioral approaches to treatment is that targeted
begins, the more progress can be made. To date, skills should be taught in the child’s environment,
the most dramatic changes occur when children in a conversational or play context. Reinforcers
receive early and intensive behavioral intervention. should be related to the child’s current interest, and
The National Academy of Science recommends “a teaching trials should be interspersed with other
minimum of 25 hours per week, 12 months a year, enjoyable activities. For example, when used to
in which the child is engaged in systematically teach communication skills, the adult provides the
planned and developmentally appropriate educa- desired item only after the child uses a specific form
tional activity toward defined objectives” (National of communication. Children with limited ability to
Research Council, 2002, p. 6). Clinical guidelines imitate vocal sounds at first may learn functional
developed by the New York State Department of communication skills using either signs or pictures.
Health and Early Intervention advocate a mini- Current trends in treatment emphasize the
mum of about 20 hours per week of individualized necessity of intervention based on valid research.
behavioral intervention using applied behavioral Therefore, based on currently available research,
analysis techniques. effective intervention for children with autism
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vi The Encyclopedia of Autism Spectrum Disorders
should come from the field of applied behavior For children with autism, this often translates
analysis. Furthermore, it should provide the spe- into more than 20 hours of weekly one-on-one
cific blend of behavioral strategies best suited for intervention. While expensive, cost-benefit analy-
each individual child at each particular stage of ses demonstrate that “front-loading” expenses (in
learning. Such intervention must be of suitable other words, providing the highest intensity of
intensity to be effective. In addition, treatment intervention during the preschool years) actually
must begin as soon as it is recognized that a child saves money in the long run.
has an autism spectrum disorder, with the goal of —Ruth Anan, Ph.D.
improving each child’s eventual level of function- Director, Early Childhood Program
ing as much as possible. Center for Human Development
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ACKNOWLEDGMENTS
he creation of this encyclopedia involved the Technology and Disabilities, Family Education
Thelp and guidance of a wide range of experts, Network, Federation for Children with Special
without whom it could not have been possible. Needs, Federation of Families for Children’s Men-
Thanks to the staffs of the National Institutes of tal Health, the Food and Drug Administration,
Health; the American Academy of Pediatrics; Learning Disabilities Association, National ADD
American Academy of Allergy, Asthma & Immu- Association, National Adoption Center, National
nology; American Academy of Child and Adoles- Alliance for Autism Research, National Aphasia
cent Psychiatry; American Association of People Association, National Association for the Educa-
with Disabilities; American Occupational Therapy tion of Young Children, National Association of
Association; American Psychiatric Association; the Deaf, National Center for Learning Disabili-
American Psychological Association; American ties, National Health Information Center, National
Speech-Language-Hearing Association; Autism Information Center for Children and Youth with
Network International; Autism Research Insti- Disabilities, National Institute of Child Health and
tute; Autism Society of America; Childhood Human Development, National Institute of Men-
Apraxia of Speech Association of North America; tal Health, National Vaccine Information Center,
and Children and Adults with Attention Deficit and the Obsessive-Compulsive Foundation.
Disorder. Also the Children’s Health Informa- Thanks to my agents, Gene Brissie and Ed Claf-
tion Network, Council for Exceptional Children, lin; to my editor, James Chambers; to Sarah Fog-
Council for Learning Disabilities, Dana Alliance arty, Grace Persico, and Vanessa Nittoli at Facts On
for Brain Initiatives, ERIC Clearinghouse on Dis- File; and to Kara and Michael. And a very special
abilities and Gifted Education, Family Center for thank you to the entire staff at Luciano’s!
vii
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INTRODUCTION
ot until the middle of the 20th century was communication and social skills and impairing
Nthere a name for a disorder that now appears the child’s ability to play, speak, and relate to
to affect at least one of every 500 children in Amer- the world. Parents are usually the first to notice
ica—a disorder that disrupts families and leads to unusual behaviors in their child. In some cases,
unfulfilled lives for many children. In 1943, Dr. the baby seems “different” from birth, unrespon-
Leo Kanner of the Johns Hopkins Hospital studied sive to people or focusing intently on one item for a
a group of 11 children with baffling symptoms and long time. The first signs of an ASD can sometimes
came up with the label “early infantile autism.” At appear in children who seem to have been develop-
the same time, German scientist Dr. Hans Asperger ing normally. When an engaging, babbling toddler
described a milder form of the same disorder that suddenly becomes silent, withdrawn, self-abusive,
today bears his name: Asperger’s syndrome. or indifferent to social overtures, parents know
Today, these disorders are listed in the Diagnostic immediately that something is wrong. Research
and Statistical Manual of Mental Disorders (fourth edi- has shown that parents are usually correct about
tion, text revision; DSM-IV-TR) as two of the five noticing developmental problems, although they
pervasive developmental disorders, more often may not realize the specific nature or degree of the
referred to today as autism spectrum disorders problem.
(ASDs). All five of these disorders on the autism While autism was always one of the most com-
continuum are characterized by varying degrees of mon developmental disabilities, in the past sev-
impairment in communication skills, social inter- eral years an apparent increase in the number of
actions, and restricted, repetitive, and stereotyped children diagnosed with the disorder has schools
patterns of behavior. The ASDs range from a severe straining to provide services and health officials
form, called autistic disorder (more commonly urgently seeking the cause of the condition.
known as the classic “autism”), to a milder form— The U.S. Department of Education reports a 173
Asperger’s syndrome. If a child has symptoms of percent increase in autistic children served under
either of these disorders but does not meet the the Individuals with Disabilities Education Act
specific criteria for either, the diagnosis is called between the 1992–93 school year (when 15,580
pervasive developmental disorder–not otherwise children were counted) and 1997–98, when the
specified (PDD-NOS). Other rare, very severe dis- figure jumped to 42,500. The situation appears
orders that are included in the autism spectrum to be particularly acute in California, where a
disorders are Rett disorder and childhood disinte- 273 percent increase was recorded in the number
grative disorder. of autistic children entering various state treat-
Autism is a baffling brain disease usually ment centers between 1987 and 1998. Critics have
appearing before a child’s third birthday—some- argued that the increase is due to a change in the
times as early as 18 months—profoundly affecting definition of autism (it is now much more broadly
viii
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Introduction ix
defined) or better or earlier diagnostic techniques. The book includes topics in three key areas:
Opponents insist the increase is real and occurs for
some as-yet-unknown reasons. The debate con-
Autism spectrum disorders
tinues, and research is ongoing. In the meantime,
thousands of very real families struggle every day
• autistic disorder (autism) (both low- and high-
with the challenges inherent in this heart-break-
functioning)
ing condition that seems to isolate children in a
remote, unreachable world. • Asperger’s syndrome
Much about autism is debatable and often con- • Rett disorder
troversial, including the varied theories for its
• pervasive developmental disorder–not otherwise
cause (vaccines, viruses, environmental toxins,
specified (PDD-NOS)
faulty genes, diet) and potential treatments (drugs,
• childhood disintegrative disorder
hug therapy, aversive therapy, behavioral therapy,
squeeze boxes, psychotherapy, vitamin therapy, or
special diets). Even the terminology used in the
Legal discussions of relevant topics
area of autism spectrum disorders has undergone
dramatic change. The ways that experts describe
• Disabilities Education Act
individuals and their symptoms have grown more
• Americans with Disabilities Act
diagnostically accurate, and ongoing refinement of
• Rehabilitation Act of 1973
legislation better protects the rights of those with
autism and other severe disabilities. Clearly, there • special needs trusts
is an enormous amount of information desperately
• estate planning
needed by people with autism and their families,
teachers, and doctors.
In The Encyclopedia of Autism, we have tried to School-related entries
present this information in a clear, balanced,
concise format easily understood by the general • independent education evaluations
reader, containing the latest findings, treatments, • individualized education programs
and methods of managing symptoms. Where there
• individualized transition plans
is controversy, we have tried to present both sides.
• assessments and screening tools
Where there is ongoing research, we have pointed
out the directions it may take.
Readers should keep in mind, however, that
This book has been designed as a guide and
changes occur rapidly in this field. A bibliography
reference to a wide range of issues in the field of
has been provided for readers who seek additional
autism and contains entries discussing the various
sources of information. Information in this book
types and subtypes of autism, symptoms, suggested
comes from the most up-to-date sources available
causes and treatments, leading scientists, lifestyle
and includes some of the most recent research in
and estate planning issues, and the latest research.
the field of learning disabilities, culled from leading
Appendixes include major autism-related organi-
textbooks and professional journals, in addition to
zations, a “Read More about It” section featuring
the personal experience of the expert coauthor. It
special books with autism information written for
is not a substitute for prompt assessment and treat-
patients and their families, a list of ongoing cur-
ment by experts trained in the diagnosis of autism
rent clinical trials into autism spectrum disorders,
spectrum disorders.
and lists of state autism-related resources. A glos-
—Carol Turkington
sary of basic medical terms and an index are also
Cymru, Pennsylvania
included.
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