When Autism Strikes: Families Cope with Childhood Disintegrative Disorder PDF
Preview When Autism Strikes: Families Cope with Childhood Disintegrative Disorder
WHEN AUTISM STRIKES Families Cope with Childhood Disintegrative Disorder WHEN AUTISM STRIKES Families Cope with Childhood Disintegrative Disorder Edited by ROBERT A. CATALANO, M.D. Foreword by FRED R. VOLKMAR, M.D. Springer Science+Business Media, LLC Library of Congress Cataloging-in-Publication Data file ISBN 978-0-306-45789-0 ISBN 978-1-4899-5964-5 (eBook) DOI 10.1007/978-1-4899-5964-5 © 1998 Springer Science+Business Media New York Originally published by Plenum Press, New York in 1998. http://www.plenum.com All rights reserved 10987654321 No part of this book may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, microfilming, recording, or otherwise, without written permission from the Publisher We dedicate this book in loving memory of Daniel George Kalmer, and to al1 children with disabilities and their families.May they find the happiness they deserve. Contents Foreword FredR. Volkmar, M.D. ix Preface xiii One Per'sPages KjellBerg 1 Two Pickle Sheila Brown 13 Three Searchingfor the Blue Fairy:Thomas'sTale Madeline Catalano 35 Four ComingHome MarieDay 69 Five Diary ofDavid JennyFairthorne 91 Six Laura'sStory Sue and Stephen Ferris 161 Seven Lookingfor Answers:Chronicles ofan Autistic Child Candice Goldstein 191 Eight TheRiver Jordan CraigSchulze 221 AuthorBiographies 237 Index 239 vii Foreword In his classic description of the autistic syndrome, Leo Kanner (1943) originallysuggestedthatchildrenwith autismwerebornwiththe disor der. Subsequent research has modified this impression. It is clear that most childrenwith autism do exhibitproblems in the first yearor year anda halfofIife,butasmallgroup ofchildrendevelop autism, orsome thingverysimilarto it,after whatappears to be 1 or even 2 years ofnor mal development (Volkmar, Klin, & Cohen, 1997). Of course, various factors might well act to advance or delaycase detection.Some parents are more aware ofwhatto expectfrom normallydevelopinginfants and note problemsthatotherparentsmiss. Insome cases,achildwho goeson tohavehigher-functioningautismmay speakon timebutasthe childde velops, more unusualsocialbehaviors or environmentalresponsiveness are seen.The available data do, on balance, suggest that classical autism almost neverdevelops after 3 years ofage.However,some childrenwho develop normallyforaperiodofseveralyears goon to developaclinical syndromevery similartoautism.Inconsideringhowbest toclassifysuch disorders, we must turn to the work of the special educator Theodore Heller. ix x WHENAUTISM STRIKES Working in Vienna in the early years of this century, Heller re ported on six children who exhibited severe developmental regression between 3 and 4 years ofage, following aperiod ofapparently normal development.This condition was initially termed dementia injantiJis and, subsequently, Heller'ssyndrome,DisintegrativePsychosis,or,most recently, Childhood Disintegrative Disorder (CDD). In the nearly 90 years since Heller's original report, over 100 cases have been reported in the literature and the syndrome has undoubtedly been underrecog nized (Volkmar & Rutter, 1995). The lack ofrecognition has reflected a presumptionthat the conditionrepresented "late-onset" autism or was the result ofthe insidious onset ofsome progressive neuropsychologi cal process.As a result,this condition is unfamiliar to clinicians and has onlyrecentlybeenrecognizedas an official diagnosis (APA,1994). Several lines of data have supported the recent recognition of CDD as a disorder apart from autism. The onset of the condition is highly distinctive andan essential feature ofthe diagnosis.Consistent with Heller's (1930) impression, the condition is usually observed af ter 3 years and before 5 years in children who previously appeared normal. The condition's onset may be abrupt (over days to weeks) or more gradual (weeks to months);sometimes there is aperiod ofnon specific agitationas the childbegins the dramaticregression that is the hallmark ofthis condition. The natural historyofthiscondition,once established,also differs from more classical autism in that the long-termoutcome is apparently worse than in autism.In about 75% ofthe cases the child's behavioral and developmental functioning deteriorates to amuchlowerlevelthan in autism and then plateaus. No further deterioration occurs, but sub sequentgains are minimal. In othercases, theremaybe some limitedre covery-s-for example,the child may regain the capacityto speaksingle words. In only a handful of either of these types of cases has a child been observed to make a major recovery of developmental skills.In a small number of cases, deterioration progresses with no plateau and may result in death. These are extreme cases where the condition is of late onset and clearly associated with some known progressive neuro logical disorder (Corbett, 1987). Life expectancy in all other cases ap pears tobe normal. Given the dramatic nature ofthe child'sregression,it is not sur prisingthatformanyyears the presumptionwas thatCDDwas the overt FOREWORD xi manifestation ofsameidentifiableneurologicalorothermedicalcondi tion and, therefore,did not deserve official recognition. Again this has turnedoutnottobe the case. Althoughsuchcases havebeenobserved, it usually is the case that exhaustive medical evaluations do not reveal a specific medical "cause" although nonspecific abnormalities consis tent with some as yet undiscovered neurobiological process or processesofseizuresorabnormalbrainwave activityaresometimes ob served. The lack ofrecognition ofthe condition has limited research, and only now are systematic studies being conducted.Studies ofepi demiology, Intervention, and, of course, neurobiology are very much needed. When Autism Strikes:Families Cope with Childhood Disinte grative Disorderwill increase awareness ofthis perplexing condition and, as such, can only facilitate efforts to find its causes. Thisvolumeis apoignanttestamentto the enormoustoll thatthis condition takes on afflicted children and their families. Their tremen doussufferingis intensifiedby theirexperience ofthe children'searlier normaldevelopment, often documentedin videotapesrecordedpriorto the regression. I applaud the courage of the families who,in this vol urne,eloquentlyprovidetheirown accounts ofcopingwiththe human tragedy that this conditionrepresents. FredR. Volkmar,M.D. HarrisAssociateProfessor Child StudyCenter Yale University References AmericanPsychiatrieAssociation (1994).Diagnostic andstatisticalmanualof mentaldisorders. (4th ed.). Washington,DC:Author. Corbett,J. (1987). Development,disintegrationanddementia.JournalofMental DeficiencyResearch,31(4), 349-356. Heller,T.(1930).UberDementiaInfantilis.ZeitschriftfuerKinderforschung, 37, 661-667. Kanner, L. (1943).Autistic disturbances ofaffectivecontact. Nervous Cbild,2, 217-250. Volkmar, ER., Klin A., & Cohen, D. (1997). Diagnosis and classification of autism and related issues: Consensus and issues.In D.J. Cohen & F.R. xii WHENAUTISM STRIKES Volkmar, (Eds.), Handbook0/autism andpervasive developmentaldis orders (znded.,pp. 5-59). New York:Wiley. Volkmar,F.R.,&Rutter,M.(1995).ChildhoodDisintegrativeDisorder:Resultsof the DSM-IV Autism Field Trial. Journal 0/the American Academy 0/ Child andAdolescentPsychiatry, 34, 1092-1095.
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