Understanding the Nature of Autism and Asperger’s Disorder of related interest The Development of Autism A Self-Regulatory Perspective Thomas L. Whitman ISBN 1 84310 735 X Autism – From Research to Individualized Practice Edited by Robin L. Gabriels and Dina E. Hill ISBN1843107015 Asperger’s Syndrome A Guide for Parents and Professionals Tony Attwood Foreword by Lorna Wing ISBN 1 85302 577 1 Autism – The Search for Coherence Edited by John Richer and Shiela Coates ISBN 1 85302 888 6 Children, Youth and Adults with Asperger Syndrome Integrating Multiple Perspectives Edited by Kevin P. Stoddart Hardback ISBN 1 84310 268 4 Paperback ISBN 1 84310 319 2 Kids with a Syndrome Mix of ADHD, LD, Asperger’s, Tourette’s and More! The one stop guide for parents, teachers, and other professionals Martin Kutscher With contributions from Tony Attwood and Robert R. Wolff Hardback ISBN 1 84310 810 0 Paperback ISBN 1 84310 811 9 Understanding the Nature of Autism and Asperger’s Disorder Forty Years of Clinical Practice and Pioneering Research Edward R. Ritvo, MD Foreword by Tony Attwood Jessica Kingsley Publishers London and Philadelphia First published in 2006 by Jessica Kingsley Publishers 116 Pentonville Road London N1 9JB, UK and 400 Market Street, Suite 400 Philadelphia, PA 19106, USA www.jkp.com Copyright © Edward R. Ritvo 2006 Foreword copyright © Tony Attwood 2006 The right ofEdward R. Ritvo to be identified as author ofthis work has been asserted by him in accordance with the Copyright, Designs and Patents Act 1988. Diagnostic criteria for autistic disorder and Asperger’s disorder reprinted with permission from theDiagnostic and Statistical Manual ofMental Disorders, Fourth Edition, Text Revision, (Copyright 2000). American Psychiatric Association. All rights reserved. No part ofthis 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 ofthis publication) without the written permission ofthe copyright owner except in accordance with the provisions ofthe Copy- right, Designs and Patents Act 1988 or under the terms ofa licence issued by the Copyright Licensing Agency Ltd, 90 Tottenham Court Road, London, England W1T 4LP. Applications for the copyright owner’s written permission to reproduce any part ofthis publication should be addressed to the publisher. Warning: The doing ofan unauthorised act in relation to a copyright work may result in both a civil claim for damages and criminal prosecution. Library ofCongress Cataloging in Publication Data Ritvo, Edward, 1930- Understanding the nature ofautism and Asperger’s disorder : forty years ofclinical practice and pioneering research / Edward R. Ritvo ; foreword by Tony Attwood. p. cm. Includes index. ISBN-13: 978-1-84310-814-6 (pbk. : alk. paper) ISBN-10: 1-84310-814-3 (pbk. : alk. paper) 1. Autism. 2. Asperger’s syndrome. I. Title. RC553.A88R58 2005 616.85’8832—dc22 2005018076 British Library Cataloguing in Publication Data A CIP catalogue record for this book is available from the British Library ISBN-13: 978 1 84310 814 6 ISBN-10: 1 84310 814 3 ISBN pdfeBook: 1 84642 453 4 Printed and bound in Great Britain by Athenaeum Press, Gateshead, Tyne and Wear I wish to dedicate this book to Riva Ariella Ritvo, and to our three wonderful children, Victoria, Skye, and Max. Also, I respectfully dedicate this book to the memory of a young man who died in an automobile accident in April 1999, and to his courageous parents who donated his organs so others could live. I received his heart and treasure the gift of life they provided for me. If this volume helps but one person or family with autism or Asperger’s disorder, or one professional, or one student, then they too owe him and his family a similar debt of gratitude. Lastly, I wish to honor the memory of two men who shaped my early life and guided my professional career, my father, Max Ritvo MD, and my uncle, Joseph Weinreb MD. “The quest to understanding others begins at the end of the road to self-acceptance.” Max Joseph Ritvo, age 13 (2004) Contents Foreword by Tony Attwood 9 Acknowledgements 11 Introduction 13 Why I’m writing this book 13 What this book is not 15 An apology to my readers who have autism or Asperger’s disorder 15 1. Understanding How to Understand a Disease 17 The medical model of disease 17 What did the Romans think? 19 The Dark Ages ofchild psychiatry – before 1940 20 Professor Leo Kanner (1894–1981) 20 Professor Hans Asperger (1906–1980) 23 2. The Clinical Symptoms: From Severe Autism to Asperger’s Disorder 25 Some general points 25 Symptoms due to developmental delays 28 Autism and intelligence 50 3. The Life Course of Autism and Asperger’s Disorder 53 The life course ofsevere autism 54 The life course ofmild/high-functioning autism 57 The life course ofAsperger’s disorder 61 4. Searching the Brain for Clues 67 A model to guide the search for abnormal brain development 68 Studying brain wave activity 70 Spinning chairs, movie cameras, and microscopes 74 Neurotransmitters and “Nervous Mice” 78 Some concluding comments 86 5. Searching for Causes 87 Searching medical histories for possible causes 87 Our “Rolls Royce” study in Utah 88 Questions ofgenetics 95 6. Supportive Treatments: Which Ones, When, and for Whom 101 Some general points 101 Specific supportive programs and support systems 104 Unproven theories about the causes ofautism, and treatments to avoid 118 7. My Casebook 121 Children and adults with autism or Asperger’s disorder 122 Autistic parents ofautistic children 138 8. The Importance of Obtaining a Diagnosis 149 On diagnosis 149 9. The “Official Diagnostic Criteria” 157 Diagnostic criteria for autistic disorder 158 Diagnostic criteria for Asperger’s disorder 160 Epilogue 163 Suggestions for Gathering Further Information 167 Index 169 List of Tables 1 The life course ofautism and Asperger’s disorder 55 2 A detailed medical model of autism and Asperger’s disorder 166 List of Figures 1 The medical model of disease 18 2 Comparison ofdevelopmental pathways in normal development, autism and Asperger’s disorder 29 3 A computer model ofthe brain 69 Foreword Over the last forty years, Edward Ritvo, MD has conducted many of the seminal research studies examining the medical aspects of autism. He observed and contributed to the dawn of our scientific knowledge on autismandAsperger’sdisorderthatbeganinthelate1960s.Today,youn- ger scientists and clinicians tend to focus on contemporary research and overlooksomeoftheoriginalstudies.Butnewlightcanshinethroughold windows. As Edward Ritvo, MD describes the context for his original researchandinterpretstheresults,thereaderbecomesawarethatthestud- iesconductedtwentyorthirtyyearsagoarestillcontributingtoourunder- standing of autism and our current theoretical models and treatments. Therearefewpeopleintheworldthatcanuseanhistoricalperspective overmanydecadestoperceivethechangingconceptualizationandtreat- mentstrategiesofautismspectrumdisorders.Weneedthewisecouncilof EdwardRitvo,MD insuchdiverseareasasdiagnosis,aetiology,treatment andespeciallyprognosis.Whatautismisandwhatareitscausesandtreat- ments along with how children with autism can develop, are the central themes of this book. Parents will be delighted to read the advice of an extremely experi- encedclinician,arealistandoptimist,basedonthepersonalexperienceof diagnosing,studyingandtreatingthousandsofchildrenandadultswhose expressionofautismhasrangedfromseveretorelativelymild.Ofparticu- lar interest is the seminal description of adults with autism or Asperger’s disorder who are parents. Clinicians first thought that someone with autism could never marry and have children. Over ten years ago, Edward Ritvo,MDdocumentedandprovedthatsomeonewithautismcanexperi- enceanintimateandlovingrelationshipwithapartnerandhavechildren. 9