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

337 Pages·2006·1.26 MB·English
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THE ENCYCLOPEDIA OF AUTISM SPECTRUM DISORDERS Carol Turkington Ruth Anan, Ph.D. i-xii_Autism-fm.indd i 9/25/06 9:31:22 PM 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, electronic or mechanical, including photocopying, recording, or by any information storage or retrieval systems, without permission in writing from the publisher. For information contact: Facts On File, Inc. An imprint of Infobase Publishing 132 West 31st Street New York NY 10001 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 Facts On File books are available at special discounts when purchased in bulk quantities for businesses, associations, institutions, or sales promotions. Please call our Special Sales Department in New York at (212) 967-8800 or (800) 322-8755. You can fi nd Facts On File on the World Wide Web at http://www.factsonfi le.com Text and cover design by Cathy Rincon Printed in the United States of America VB Hermitage 10 9 8 7 6 5 4 3 2 1 This book is printed on acid-free paper. i-xii_Autism-fm.indd ii 9/25/06 9:31:22 PM CONTENTS Foreword iv Acknowledgments vi Introduction viii Entries A–Z 1 Appendixes 165 Glosary 284 Suggested Reading 286 Index 309 i-xii_Autism-fm.indd iii 9/25/06 9:31:23 PM 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 i-xii_Autism-fm.indd iv 9/25/06 9:31:23 PM 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 i-xii_Autism-fm.indd v 9/25/06 9:31:23 PM 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 i-xii_Autism-fm.indd vi 9/25/06 9:31:23 PM 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 i-xii_Autism-fm.indd vii 9/25/06 9:31:23 PM 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 i-xii_Autism-fm.indd viii 9/25/06 9:31:23 PM 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. i-xii_Autism-fm.indd ix 9/25/06 9:31:23 PM

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