All rights reserved. No part of this publication may be reproduced in any material form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright owner except in accordance with the provisions of the Copyright, Designs and Patents Act 1988 or under the terms of a licence issued by the Copyright Licensing Agency Ltd, 90 Tottenham Court Road, London, England W1P 9HE. Applications for the copyright owner s written permission to reproduce any part of this publication should be addressed to the publisher. Warning: The doing of an unauthorised act in relation to a copyright work may result in both a civil claim for damages and criminal prosecution. The right of the contributors to be identified as authors of this work has been asserted by them in accordance with the Copyright, Designs and Patents Act 1988 First published in the United Kingdom in 2002 by Jessica Kingsley Publishers Ltd 116 Pentonville Road London N1 9JB, England and 325 Chestnut Street Philadelphia, PA 19106, USA www.jkp.com Copyright Jessica Kingsley Publishers 2002 Library of Congress Cataloging-in-Publication Data Autism: from research to individualized practiced/edited by Robin L. Gabriels and Dina E. Hill p. cm. Includes bibliographical references and index. ISBN 1-84310-701-5 (alk. paper) 1. Autism in children. 2. Autism in children Research. 3. Autism Research. I. Gabriels, Robin L., 1962- II. Hill, Dina E., 1965- RJ506.A9 A9222 2002 618.92 8982 dc21 2002021876 British Library Cataloguing in Publication Data A CIP catalogue record for this book is available from the British Library ISBN 1 84310 701 5 Printed and Bound in Great Britain by Athenaeum Press, Gateshead, Tyne and Wear
CHAPTER 1 Introduction to Autism From Research to Individualized Practice Robin L. Gabriels and Dina E. Hill it would be a mistake to portray the picture as a one-way traffic from research to clinical practice. The reality is [a] more complex interplay, with each feeding into the other and each serving to correct the other s mistakes. (Rutter 1999, p.169) Michael Rutter (1999) offered this positive insight in his review of the history of the two-way interchange between research and clinical work in the field of autism. However, historically, the communication interchange between researchers and practitioners has been difficult and often unsuccessful. The National Advisory Mental Health Council Workgroup on Child and Adolescent Mental Health Intervention Development and Deployment (2001) released a report reviewing the problems involved in disseminating research information to effect changes in clinical practice. The report acknowledged that the scientific model used to drive the development, refinement, and testing of treatments does not mesh well with the exigencies of clinical community-based care (p.74), and that this has created delays of between 10 and 20 years in the understanding of the practical implications of research. Schopler (2001) described another level of communication gap and disruptions. He noted that parents could play a role in the research to practice communication gap by their urgency to find effective treatments for their child. Parents may become involved in a new, experimental technique on the basis of personal testimony or anecdotal accounts of remarkable improvement (Schopler 2001, p.9). At times, this has led to skepticism from professional consultants if scientific verification for this technique 13
14 AUTISM FROM RESEARCH TO INDIVIDUALIZED PRACTICE does not exist (p.9). Clearly, efficient communication interchange regarding autism has been hindered on a number of levels. It is the intent of this book to assist in the process of closing the research to practice gap in the field of autism by providing a synthesis of information from research, theory, and clinical practice outcomes. This book provides examples of how this process is translated into best clinical practice through a discussion of strategies, techniques, and clinical case examples, including vivid client artwork. The chapters in this book target critical aspects of assessment, diagnosis, and treatment, as well as offering ideas on the integration of research findings and clinical application to aid the professional in addressing the individual child and family s needs. Finally, it is the goal of this book to provide a resource guide for professionals in order to work competently and creatively with children who have autism and their families from initial diagnosis through treatment. Overview of autism Since the mid 1980s, the general public awareness of autism has increased as indicated by the number of television and radio press releases, published literature, and funded research projects. Given the increased rate of population occurrence, every healthcare or educational agency serving young children can expect to see children with autism (Filipek et al. 1999, p.440). Despite the media coverage and available literature on autism, families and professionals continue to struggle to understand causes and cures for autism. Autism can be quite puzzling because children vary in extremes in the degree of symptom and associated symptom presentation. Figure 1.1, titled Des Moines traffic light tries to hold back the flood, can be viewed as a metaphor for the overwhelming nature of autism and its impact on individuals, their families, and practitioners. Barbara Moran, an adult woman diagnosed with autism, created this artwork. Ms. Moran was misdiagnosed within the mental health system for 40 years of her life. She describes her lifelong interest in personifying objects as a means of connecting with the world (B. Moran, personal communication, April 3 2001).
INTRODUCTION TO AUTISM: FROM RESEARCH TO INDIVIDUALIZED PRACTICE 15 Figure 1.1 Traffic light holds back the flood The current conceptualization of autism is that this disorder is neurodevelopmental in nature with a strong genetic component. Prevalence rates have shifted over time. Autism is now thought to be relatively common, occurring in about four in a thousand individuals (Bertrand et al. 2001). Current estimates represent a dramatic change from early prevalence rates, which were approximately 1 in every 2000 people in the 1960s (Filipek et al.
16 AUTISM FROM RESEARCH TO INDIVIDUALIZED PRACTICE 1999). The core features of autism, including impairments in social interactions, delayed, absent, or impaired language skills, and stereotyped behaviors, have stood the test of time. Initial accounts of individuals with autism identified these same features (Kanner 1943), with the diagnostic criteria undergoing changes to increase specificity and clarify subtype distinctions. As noted by Bristol et al. (1996, p.123), the clinical diagnosis of autism remains one of the most reliable diagnoses in psychiatric or developmental research. This suggests that the core deficits are relatively universally observed, although to varying degrees of impairment, and that they are readily identified by clinicians. Treatment approaches have drawn from behavior-learning theory and developmental theory, and integrated research findings into clinical practice. Many of the interventions practiced today incorporate behavior-learning theory, to some degree, within a developmental framework. Strategies advocated by the TEACCH (Treatment and Education of Autistic and Related Communication Handicapped Children) program (Schopler, Mesibov and Hearsey 1995) capitalize on the visual strengths of individuals with autism, strengths well defined by research. The success of treatment approaches has varied, as has the prognosis of individuals with autism. Evidence suggests that early intervention, specifically during the preschool years, leads to better prognosis, although as previously mentioned, factors such as intellectual functioning and language skills play a role in both treatment success and long-term outcome (Filipek et al. 1999). Asperger syndrome is defined as a separate syndrome from autism, a distinction under considerable debate. The controversy arises from the uncertainty of how Asperger syndrome differs from higher-functioning autism (i.e. autism without mental retardation: Manjiviona and Prior 1999). Asperger syndrome was named after Hans Asperger, who in 1944, one year after Kanner, identified a similar set of behaviors in older children and adolescents (Wing 1997). The DSM-IV (American Psychiatric Assocation (APA) 1994) currently distinguishes Asperger syndrome from autism by the criteria of normal language development and no significant delays in cognitive development, including self-help skills. Similarities to autism include impairments in social interaction and stereotyped movements, restrictive interests, and repetitive behavior patterns. In addition, although these children do not have developmental language delays, communication and language problems may be evident in the use of pedantic speech and unusual words, along with a tendency to interpret language literally (Eisenmajer et al. 1996).
INTRODUCTION TO AUTISM: FROM RESEARCH TO INDIVIDUALIZED PRACTICE 17 Historical influences of research and practice Rutter (1999) presented a historical overview of the interplay between research and clinical work for the Emanuel Miller Memorial Lecture in 1998. His review covered four time periods: the 1950s and 1960s, the 1970s through the mid-1980s, the late 1980s and early 1990s, and the late 1990s. Below is a brief synopsis of his review article. Kanner first introduced the syndrome of autism in 1943. Immediately following his now seminal paper, researchers began to differentiate autism from other diagnostic categories, particularly childhood psychosis. As early as the 1950s, key behavioral characteristics, including failure to develop social relationships, impaired language abilities, and stereotyped behaviors, were identified as differentiating children with autism from children with other psychiatric disorders. Research in the 1950s and 1960s focused primarily on further describing the nature of autism, including behavioral characteristics, cognitive functioning, and prognosis. Treatment initially focused on psychoanalytic intervention, with some early studies of the effectiveness of operant learning techniques. Investigation into the etiology of autism focused on its relationship to other medical disorders, such as congenital rubella. During the second time period, the 1970s through mid-1980s, Rutter noted that the diagnostic criteria of autism were further defined and that standardized diagnostic tools became available. Researchers and clinicians alike became increasingly aware of the heterogeneity of symptom presentation in children with autism. In conjunction with this, the diagnosis of autism was differentiated from other diagnoses including Rett s syndrome, fragile X syndrome, and Asperger syndrome. During this time period, researchers delved further into possible medical etiologies of autism. Genetic studies were also underway, with the first clear evidence of the strong genetic influence in this disorder identified through sibling studies. It was also during this time period that the neuropsychological correlates of autism were investigated. Cognitive deficits, and their relationship to social deficits, were investigated and led to the development of the theory of mind hypothesis (see Chapter 3). The development of intervention programs was the most striking advancement during this time period. Educational programs, such as TEACCH (see Chapters 5 and 10), were developed and implemented, and psychoanalytic interventions were discarded. The third time period, from the late 1980s to the early 1990s, was characterized by continued gains in our understanding of the etiology of autism. In particular, the genetic underpinnings of autism were further elucidated
18 AUTISM FROM RESEARCH TO INDIVIDUALIZED PRACTICE through sibling and twin studies. It was also during this time period that neuroimaging techniques were utilized to gain an understanding of the neuroanatomy and neurophysiology of individuals with this disorder. Diagnostic research focused on clarification of the behaviors and symptoms associated with milder forms of autism and Asperger syndrome. Additionally, researchers and clinicians attempted to characterize autism across the lifespan, including recognition of very early symptoms and behaviors. Neuropsychological studies continued to offer insights into the cognitive deficits associated with autism, and developed theories to explain these deficits. Intervention programs during this period shifted emphasis to include home-based programming and behavioral interventions, such as the program advocated by O. Ivar Lovaas (see Chapter 5). Although some researchers and clinicians began to evaluate interventions programs empirically, this was not the norm. The final time period reviewed by Rutter is the late 1990s. Rutter noted the continued influence of molecular genetics in developing our understanding of the etiology of autism. After a review of genetic studies, Rutter (1999, p.181) summed up the research as follows: What will emerge, however, is not the gene for autism but rather several genes that, in combination, give rise to an increased vulnerability to autism. Rutter also noted that neuroimaging, specifically functional neuroimaging, has provided useful insights into brain functioning of individuals with autism through comparisons with typical individuals (see Chapter 3). This area is very new, and the ultimate usefulness of the information to the individual with autism has yet to be determined. Rutter concluded his review of this time period by delineating the developments in the area of intervention. Specifically, he noted that treatment approaches have expanded to include the lifespan and the diagnostic spectrum of individuals with autism. For example, treatment approaches are now being implemented to aid individuals with autism in job attainment. In conclusion, Rutter s review of the history of autism demonstrates the interplay between research and clinical practice. The gains made in our understanding of the etiology of this disorder and successful interventions are the direct result of the interaction between the two fields. However, it is still the case that many practitioners do not have easy access to the latest research developments and that many researchers are far removed from the hands-on work of clinical intervention.