The Autism Matrix E-Book

Gil Eyal

• Herausgeber: John Wiley & Sons
• Kategorie: Geisteswissenschaft
• Sprache: Englisch

Seitenzahl: 651

Veröffentlichungsjahr: 2013

Beschreibung

Today autism has become highly visible. Once you begin to look for it, you realize it is everywhere. Why? We all know the answer or think we do: there is an autism epidemic. And if it is an epidemic, then we know what must be done: lots of money must be thrown at it, detection centers must be established and explanations sought, so that the number of new cases can be brought down and the epidemic brought under control.

But can it really be so simple? This major new book offers a very different interpretation. The authors argue that the recent rise in autism should be understood an “aftershock” of the real earthquake, which was the deinstitutionalization of mental retardation in the mid-1970s. This entailed a radical transformation not only of the institutional matrix for dealing with developmental disorders of childhood, but also of the cultural lens through which we view them. It opened up a space for viewing and treating childhood disorders as neither mental illness nor mental retardation, neither curable nor incurable, but somewhere in-between. The authors show that where deinstitutionalization went the furthest, as in Scandinavia, UK and the “blue” states of the US, autism rates are also highest. Where it was absent or delayed, as in France, autism rates are low.

Combining a historical narrative with international comparison, The Autism Matrix offers a fresh and powerful analysis of a condition that affects many parents and children today.

Leseprobe

THE AUTISM MATRIX

THE AUTISM MATRIX

The Social Origins of the Autism Epidemic

GIL EYAL, BRENDAN HART,EMINE ONCULER, NETA OREN,AND NATASHA ROSSI

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Copyright © Gil Eyal, Brendan Hart, Emine Onculer, Neta Oren and Natasha Rossi, 2010

The right of Gil Eyal, Brendan Hart, Emine Onculer, Neta Oren and Natasha Rossi to be identified as Authors of this Work has been asserted in accordance with the UK Copyright, Designs and Patents Act 1988.

First published in 2010 by Polity Press

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Cambridge CB2 1UR, UK

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ISBN-13: 978-07456-5640-3

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CONTENTS

Acknowledgements

Introduction: The Autism Matrix

Why focus on therapies?

The genetics of autism

Diagnostic change

Between mental illness and mental retardation

1    The Puzzle of Variation in Autism Rates

Diagnostic substitution

Supply-side and demand-side explanations for diagnostic substitution

Deinstitutionalization as key to explaining diagnostic substitution

Deinstitutionalization and the variation in autism rates

2    The Feebleminded

3    The Surveillance of Childhood

The unification of mental deficiency and mental hygiene under child psychiatry

The role of the middle-class family

The institutionalization of children and the comprehensive surveillance system

4    Deinstitutionalization

A new look at the deinstitutionalization of the retarded

The middle-class family and the “valorization of retarded existence”

5    “An existence as close to the normal as possible”: Normalization

Normalization as therapeutic practice

Behavior modification and normalization

6    Childhood Schizophrenia

7    The Rise of the Therapies

Autism therapies in the 1950s and 1960s

Working on the child’s brain

Inculcating habits and building skills

Blurring the boundary between expert and layman

The space between fields

8    Bernard Rimland and the Formation of NSAC

The parent-activist-therapist-researcher as a new type of expert

The problem of credibility

Schopler and the new economy of blame and worth

Autism parenting as a vocation

The implications of behavioral therapy

Conclusion

9    The Atypical Children

The struggle over inclusion in the Developmental Disabilities Act

Autism as concurrent with mental retardation

Looping and the transformation of autism

10  Asperger and Neurodiversity

The riddle of simultaneous discovery dissolved

“Personality trait” vs. “psychotic process”

Twins reunited 223 Loops of self-advocacy

11  The Space of Autism Therapies and the Making and Remaking of the Spectrum

The return of Rimland

The agonistic network

Blurring the boundary between medicine and alternative medicine

The space of autism therapies

Conclusion

Notes

References

Index

ACKNOWLEDGEMENTS

Many individuals provided us with useful comments after reading drafts of the manuscript or attending presentations of its main argument and findings, others have helped us through various stages of the research that led to this book. Thanks are due to: Peter Bearman, Dalia Ben-Rabi from JDC-Brookdale Institute (Israel), Douwe Draaisma, Vivian Ducat, Dani Eshet, Dahava Eyal, Ayelet Fischer, Marion Fourcade, Gyorgy Gergely, Kim Gilbert, Robin Gurley and Marguerite Kirst Colston at The Autism Society of America, Ian Hacking, Barbara Harmon, Haim Hazan, Noa Herling and Dafna Erlich from ALUT (Israel), Dagmar Herzog, Marissa King, Eric Klinenberg, Andrew Lakoff, Tanya Luhrmann, Carol Markowitz, Xue Ming, Anne Montgomery, Dan Navon, Ari Ne’eman, Molly Ola Pinney, Beatrice Renault, David Schelly, Chloe Silverman, Regina Skyer, Kathy Small, Michael Staub, Rachel Tait, Zsuzsanna Vargha, Lynn Waterhouse, Juliette de Wolfe, participants in Gil Eyal’s Sociology of Expertise seminar at Columbia University, and the many parents who graciously took the time to share their stories and opinions with us. Thanks are also due to the editorial team at Polity Press. John Thompson shepherded the whole process with a sure hand and sage advice, and Ann Klefstad read the whole text and made useful corrections designed to make the book more communicative. Part of the research for this book was conducted with the generous support of the National Science Foundation under Grant No. 0719823. Any opinions, findings, and conclusions or recommendations expressed in this book are those of the authors and do not necessarily reflect the views of the National Science Foundation. Some of the manuscript was written while Gil Eyal was resident fellow at the Center for Advanced Studies in Stanford, California. Our thanks to the Center’s director Claude Steele and deputy director Anne Petersen for their generous support.

INTRODUCTION: THE AUTISM MATRIX

Autism has become highly visible. Once you begin to look for it, you see it everywhere. Search the archived pages of major newspapers, and you will find countless reports on scientific advances in the detection, understanding, and treatment of autism; letters to the editors protesting insurers’ miserly reimbursement for treatment options; dispatches from the battlefronts of special education; stories of parents’ love and determination in the face of tragedy, of their dogged advocacy for their children. Type the keyword “autism” into Yahoo! Groups and you will get 3,072 entries, from “Texas-Autism-Advocacy” to HBO (hyperbaric oxygen) therapy for autism. Many of these sites contain lively discussions among parents, professionals, and other interested parties who have banded together virtually for this purpose and are communicating across county and state lines, across national borders. Sort through your mail or take a walk in your neighborhood reading car stickers, and you will surely discover that April is International Autism Awareness Month, that not far from you there is a special preschool or after-hours program dedicated to autism. Stroll into your local library or bookstore and you will discover whole shelves dedicated to autism sourcebooks, advice to the parents of autistic children, memoirs of individuals with autism or of their parents. Then start talking to somebody who is also browsing through these titles.

A few clicks away, a simple question addressed to a stranger, and you will be introduced to a host of strange terms that, you recognize, you had heard mentioned before but preferred to ignore: most important, you will learn about “the spectrum,” about “high functioning” and “low functioning,” about “Asperger’s syndrome.” You will hear talk about GFCF diets, chelation and mercury in vaccines. You will encounter numerous references to therapies going by various acronyms such as ABA, DIR, RDI, RPM, PRT. You will learn to refer to children as being “very sensory,” having “OT (occupational therapy) issues,” and, most alarming of all, you will begin to look at your own children, or any other children around you, differently: Do they make eye contact? How long and how well? Do they walk around on their tiptoes and like to flap their hands? Do they know how to make friends? Do they like to run their hands over the soft fabric of toys rather than play with them? Autism has not only become highly visible, it’s become the center of a social world, a universe of discourse complete with its own idioms, modes of seeing and judging, its own objects and devices. Wait but a little time, and you will begin to scrutinize not only children’s behavior, but your own, your parents and siblings, your childhood memories, for the telltale signs.

Why is autism so visible now? We all know the answer. There is an epidemic. In the U.S., the Center for Disease Control estimates that the prevalence of autism has increased from 4 per 10,000 in 1989 to 66 per 10,000 in 2002; that is, from 1 in 2,500 to about 1 in 150 children.1 A recent article in Pediatrics provided an estimate of 110 in 10,000 (1 in 91) based on parental reports (Kogan et al. 2009). Likewise, data from California show that between 1987 and 2003 the number of autism cases handled by the California Department of Developmental Services increased 634 percent. Around the globe, the incidence of autism is estimated to be rising – to 1 in 100 in the U.K., 1 in 250 in India, 1 in 1,000 in China – though the reliability of these estimates is very uneven.2 We all know what an epidemic is – a public health emergency. A serious and devastating illness is spreading rapidly in the population. We all know what needs to be done about epidemics. It’s a call for action. Detection centers must be established so new cases are rapidly identified, isolated, and treated. Money, lots of money, must be “thrown” at the scientists so they will come up with an explanation and a solution. The number of new cases must be brought down, the trend reversed.

But can this really be the answer? There are many who think it was exactly the other way around: it was not the epidemic that made autism visible, but the visibility of autism that made the epidemic. They say that changed diagnostic criteria, greater awareness, and better detection services have increased the frequency with which autism is diagnosed. We will address this argument in more detail in a few pages, but for the moment we note that from this point of view, we can think about claims of an epidemic as attempts to establish a discursive link, to throw an improvised rope bridge across from the autism social world to the worlds where decisions are made, resources allocated, and actions taken – the worlds of politics, economics, medicine and science. In these worlds, what do they care if children make eye contact? But they do care about epidemics; that is their business. The claim of an epidemic is salutary if it makes visible the plight of suffering children and their parents, but we think that on balance, it does more harm than good. It raises the alarm, and we must admit that we ourselves initially became interested in autism because we heard talk about an “epidemic.” We asked: why are the numbers of diagnoses rising? What are the processes and causes leading to the current autism epidemic? Only slowly and painfully did we come to realize that this was a simplistic question. The search for the epidemic’s cause was as good a place as any to start, but ultimately blinkered our vision. The claim that there is an epidemic constrains the communication between the autism world and these other worlds where decisions are made. As a discursive link it is self-defeating. It provokes a futile and barren debate about whether there is an epidemic or not (Shattuck and Durkin 2007), whether it is “socially constructed” or real. Are new cases evidence of children poisoned by vaccines or of an overzealous psychiatric profession?

In this book, we would like to change the terms of the debate. We would like to provide a different interpretation for the rise in the number of autism diagnoses and a different way of establishing a discursive link between the autism world and its interlocutors. The current rise in autism diagnoses, we argue, should be understood as an aftershock of the real earthquake, which was the deinstitutionalization of mental retardation that began in the late 1960s. The deinstitutionalization of mental retardation was a massive change, not only materially – large institutions emptied, some razed to the ground, some converted into more humane service centers – but also symbolically. Deinstitutionalization acted as a sort of “moral blender” into which disappeared the old categories that reflected the needs of custodial institutions (moron, imbecile, idiot, feebleminded, mentally deficient, mentally retarded – whether deemed educable or trainable, or neither – emotionally disturbed, psychotic, schizophrenic child, and so on). The moral blender of deinstitutionalization scrambled these categories, giving rise to a great undifferentiated mass of “atypical children” (we will explain later why we are using this term). Then, gradually, new categories began to be differentiated within a new institutional matrix that replaced custodial institutions – community treatment, special education, and early intervention programs. It is this institutional matrix and the therapies that populate it which gave rise to our current notion of a spectrum of autistic disorders running the whole gamut from children with severe disabilities who speak little and require round-the-clock care to semi-genius teenagers with Asperger’s disorder. Beginning in Chapter 2, after we have laid the necessary groundwork of the book’s argument, we will give a historical account of this matrix and how it was assembled.

As well as giving rise to the new institutional matrix, and intimately connected to it, the deinstitutionalization of mental retardation signaled a massive change in the social organization of expertise. It was pushed forward by challenges to psychiatry from relatively marginal groups – special educators, occupational therapists, behavioral psychologists, activist social scientists identified with the anti-psychiatry movement – and parents. In the U.S., the National Association for Retarded Children (NARC) played a crucial role, and as we shall see in later chapters, so did the National Society for Autistic Children (NSAC) – both parents’ groups. They all sought to undermine the dominance of the psychiatric profession, which had in the past ignored or belittled their expertise. Rather than unseating or replacing psychiatry, the challengers maneuvered around and beneath it, so to speak. In doing so, they opened up a vast contested space between professional jurisdictions into which entered all sorts of entrepreneurs from adjacent fields – psychiatrists, no doubt, but also academic psychologists, occupational therapists, speech therapists, special educators, activists, and parents – each peddling a different typically low-tech therapy tailored to suit the needs of the new institutional matrix. In the past, psychiatrists used to rule the roost by virtue of their monopoly over the directorship of large state institutions for the mentally retarded. The new institutional matrix of community treatment, special education, and early intervention, however, acts as a great leveler, putting the psychiatrist on equal footing with occupational therapists and special educators, since all must appeal to and strike an alliance with parents. In the custodial matrix, the psychiatrist acted in loco parentis, absolved the parents of their responsibility and expropriated their knowledge.3 To succeed in the new institutional matrix, on the other hand, one must pay homage to its ointnrepeated mantra that “parents are experts on their own children” and make room for meaningful interchanges between their expertise and one’s own. Psychiatrists were the least prepared to adapt to such changes. No surprise, then, that they were outmaneuvered by swifter opponents.

To substantiate these arguments, we will first analyze, in Chapter 1, the international variation in autism prevalence rates, as well as between U.S. states, and show that it systematically correlates with indices of deinstitutionalization and parent activism. The bulk of what follows through Chapter 11 is historical analysis of how the autism spectrum became the preferred way to represent and intervene in childhood disorders, showing the contribution to this process of deinstitutionalization, parental activism, and the reorganization of expertise. The analysis in this book is based mostly on texts: articles, published interviews, reports, and manuals. We also conducted interviews with parents, therapists, and advocates, and participant observations at therapy and diagnostic centers. We will analyze this data in depth in our second book, which will focus on the moral career of the autistic child. Occasionally, however, we will use data from interviews and observations to illustrate some of the arguments in this book.

So what does the deinstitutionalization of mental retardation have to do with autism after all? One can imagine the psychiatrists being relieved by no longer having custody over mental retardation. There was never much profit or prestige in it anyway, only trouble. The mentally retarded were severely underfunded and highly stigmatized, and the stigma infected whoever was in charge of them. Mental retardation was uninteresting for psychiatrists since there was very little to do about it. It should not have been the charge of psychiatry – whose role is to treat mental illness – to begin with. Isn’t autism mental illness? Doesn’t its story begin in 1943, before the deinstitutionalization of mental retardation, when the leading child psychiatrist Leo Kanner discovered it? Shouldn’t we trace autism’s origin back to the moment Kanner wrote his landmark article “Autistic Disturbances of Affective Contact” and introduced the world to a curious group of eleven children he had seen in his Baltimore practice, the first eleven people diagnosed as autistic in history? Unlike mental retardation, autism was always exciting for the psychiatrists, a mysterious disorder through which they hoped to catch a glimpse of how the normal mind/brain works (Rimland 1964, 3). They fumbled around for a while, no doubt, misled by psychoanalytic dogmatism and charlatanism. But as psychiatry became more scientific, more securely founded in neurochemistry, genetics, and brain imaging, it took up again Kanner’s sound empirical observations, followed the thread untangled by his clinical wisdom, and is now hard on the heels of an explanation. Soon it will identify the genes and brain mechanisms involved and will devise a treatment. In the meantime, it has reiteratively modified diagnostic criteria to reflect its better understanding of the disorder, thereby producing the rise in the number of diagnoses.

One notes, of course, that it is not at all clear or self-evident why a better scientific understanding of autism should produce a dramatic rise in the number of diagnoses unless one assumes that the condition has been misdiagnosed in the past and was hiding under some other designation. This leads one back to mental retardation and to the mounting evidence – discussed in Chapter 1 – that a great deal of the rise in the number of autism diagnoses was caused by diagnostic substitution from mental retardation. So we are back to square one, to the deinstitutionalization of mental retardation. It created the institutional conditions of possibility for this diagnostic substitution, the ground upon which our current mode of representing and intervening in autism took shape. We have grave doubts whether psychiatry or a better scientific understanding had very much to do with this transformation.

Digression: On terminology

Why are we using this offensive term “mental retardation”? Hasn’t it been replaced by a more sensitive vocabulary?4 Throughout this book we refer to “mental retardation,” “mentally retarded” children, “the mentally retarded” and, worse still, to “retardates,” “morons,” “imbeciles,” and “idiots” (we further explain the latter three terms in Chapter 9). Where it is historically accurate, we also employ the term “intellectual disability,” as well as other terminology now in fashion. Words like “mentally retarded” may be unpalatable to many readers. These labels might have been used to deprive a loved one of services, or to devalue the richness of his or her experience. Our use of them is purely historical. In other words, we use the terms as they were used by researchers and physicians at particular historical moments. There are sharp differences in the moral images and ethical responses associated with these different terms and the sense conveyed by each has shifted dramatically over time. This book considers how these categories – autism and mental retardation in particular – have rearranged in relation to one another over the span of little more than half a century.

Let us be clear here. We are not claiming that people who are really mentally retarded have secretly infiltrated the autism spectrum. Nor are we suggesting that people who were truly autistic were mislabeled as mentally retarded in the past. We are arguing, rather, that the ways in which we think about and deal with childhood and developmental disorders, the very distinctions that we make, are what have changed. In the wake of deinstitutionalization, mental retardation sat at the center of the emergent domain of “developmental disabilities” (see Chapter 9) as the prototypical form of developmental disability. We argue, however, that it has lost this centrality in favor of autism, which is gradually coming to occupy the bulk of this domain as a multidimensional spectrum of pervasive developmental disorders. Mental retardation qua intellectual disability is now on the margins of this domain.

Today we grimace at the term “mental retardation,” and prefer euphemisms such as “intellectual disability” or “developmental disability.” Yet, when the term “mental retardation” was first used it was itself introduced as a euphemism. It was originally invented to denote those with only a mild deficit, those who were merely retarded rather than “idiots” or “imbeciles.” In fact, it took over from terms such as “mental deficiency” or “feeblemindedness,” each of which in their turn went through the same cycle. Each began as a euphemistic term for those slightly below “normal,” then extended in a benevolent gesture to cover the whole realm of “mental defect,” by virtue of which each gradually acquired a pejorative and ugly connotation which made it less and less useful. Then a new euphemism would be invented and the whole cycle would begin again (Wallin 1949, 5–6).

Before ending this digression, we must mention one other point of contention. Some readers may feel we should use “person-first” language. We refer at times to “autistic children” and even “autistics.” Some disability studies scholars and advocates have argued that we ought to put the person first, before the label. We should refer to “people with disabilities” or more specifically in our case “a child (or adult) with autism.” However, in deviating from person-first language at certain points, we are following autism advocates and accentuating a point about the novelty of autism.5 Parent-activist-researchers, like Bernard Rimland (1993), have argued against person-first language because they think “autistic child” conveys how much autism pervades every aspect of their child’s experience better than “child with autism.” Jim Sinclair, a leading self-advocate, has also eloquently described why he himself does not use person-first language. “Saying ‘person with autism,’” he writes, “suggests that the autism can be separated from the person. But this is not the case . . . If I did not have an autistic brain, the person that I am would not exist. I am autistic because autism is an essential feature of me as a person” (1999). Finally, we follow this use of terminology because it expresses a key aspect of the autism discourse we are describing: autism, on this view, is not something added to a person, like a disease that you can catch and later cure; it is a way of being that pervades every aspect of one’s experience in the world.

We became interested in the deinstitutionalization of mental retardation because we noted two simple facts about autism. First, since there is still no medical treatment for autism, the bulk of the work in this field is done by paraprofessionals deploying behavioral, speech, occupational, or other therapies. Psychiatrists diagnose autism and (increasingly) prescribe medications, but these are merely meant to control mood or undesired behaviors, not to treat the core of the disorder. The bulk of therapeutic work – even though some of it is characterized as “biomedical” – escapes the jurisdiction of psychiatrists, though they may endorse it or even undertake to provide it themselves.