Autism Epidemic?

According to the most recent epidemiological data, the incidence of autistic syndrome has skyrocketed over the last two decades. In the U.S., for instance, 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. Several questions naturally follow. In particular, why autism appears so evident today? Are we witnessing an epidemic comparable to that of plague, cholera, or Spanish fever? How can make sense of such a sudden increase of diagnoses? These questions represent the entry point of the book The Autism Matrix: The Social Origins of the Autism Epidemic (2010) written by a group of five sociologists formerly based at Columbia University.

Mainly concerned with the North American context from the 1920s until 1990s, this work focuses on the historical conditions that transformed autism into a major concern for today’s public health.  The main point of the book is that the recent rise in autism diagnoses does not represent an epidemic, but a change in the institutional framework under which Western societies perceive and treat childhood disorders. Central to this point is the authors’ conception of “autism” understood neither as a natural entity nor as a constructed label, but as a broad domain of intervention. After an introductory analysis of the sociological motifs of the alleged epidemic, the book proceeds with a series of chapters examining the coming into being of several variables constituting what the authors call the «autism matrix», i. e. an array of conditions determining how cases are detected, identified, named, and treated (Eyal et al. 2010, p. 24). In particular, the authors focus on the history of four entries of such matrix, namely deinstitutionalization, classification, therapies, and parent advocacy groups.

First, the book starts with a discussion about the reasons why the practice of institutionalizing children became common by the end of the nineteenth century and beginning of the twentieth. Chapter 2 focuses on the period of the so-called «menace of the feeble-minded» (1920–1950) while chapter 3 deals with the emergence of child surveillance of the 1950s and 1960s.

At this point, the authors introduce one of the major variables of the autism matrix: deinstitutionalization. Chapter 4, in fact, tells the story of deinstitutionalization during the 1970s and 1980s and revises existing interpretations of this phenomenon. Particularly, it points out that the deinstitutionalization of the “mentally retarded” differed from deinstitutionalization in other fields as it was accomplished by preventing confinement rather than increasing discharges (ibid., p. 46). Chapter 5, moreover, considers the idea of normalization and its purpose of giving children with disabilities a life as normal as possible. The second element of the autism matrix considered by the authors is that of classification. Chapter 6, in particular, examines the remaking of the classificatory horizon during the 1940s and the 1960s given the temporary success of the notion of childhood schizophrenia (ibid., p. 74). Intimately connected with classificatory systems are therapeutic ideas. Indeed, a discussion of therapies is the third important variable of the autism matrix. In chapter 7 the authors consider the trajectories of perceptual-motor therapy and behavioural therapy showing how they created a large indeterminate zone of intervention (ibid., p. 132). Ultimately, the last factor of the autism matrix concerns the role of parent advocacy groups. Chapter 8 is thus dedicated to the establishment of National Society for Autistic Children (NSAC) in New Jersey during the 1960s (ibid., p. 178). This group, as well as many others, gradually acquired an important voice in the definition and treatment of autism. Particularly, parents of autistic children gained credibility as experts on their own children and built alliances with therapeutic practitioners and researchers (ibid., p. 221).

In the final three chapters, the authors focus mostly on the changes that took place in deinstitutionalization’s aftermath concerning classification and therapies. Chapter 9 reviews changes in diagnostic criteria and special education legislation during the 1970s and 1980s. Chapter 10 tells the story of how Asperger’s disorder became connected to the autism spectrum. Finally, chapter 11 offers a deeper look at some of the most common contemporary therapies for autism.

Amidst the many interesting arguments presented in this book, a remarkable point to highlight concerns the authors’ peculiar style of inquiry. According to Eyal and colleagues, in fact, the incredible visibility of autism should be understood from a genealogical perspective. Without bothering Marx and his critique of the capitalistic modes of production, this line of inquiry clearly resembles Michel Foucault’s investigation of epistemic structures (Foucault, 1967). Following this genealogical framework, therefore, one could virtually see all contemporary issues in terms of their origins, looking at the historical emergence of their conditions of possibility. In this book, the authors demonstrate the potential of this style of inquiry inviting the reader to question his/her own assumptions and to embrace a critical perspective.

While this research addresses an audience already familiar with autism studies, it might also engage with a broader public. In particular, The Autism Matrix will certainly be an interesting reading for mental health researchers, professionals, and historians. Today’s researchers – including epidemiologists and neuroscientists amongst others – will encounter in this book a potential critique of the dominating biological view of mental disorders and they might be challenged towards a revision of their assumptions (for similar discussions Dyer, 2015; Miller, 2010; Kirmayer & Crafa, 2014; Verhoeff, 2010). Likewise, mental health professionals will benefit by putting their therapeutic approach into context and, furthermore, they might want to discuss the authors’ final suggestion of creating a «prosthetic environment» as the final goal of all therapies for autism (Baker, McFall, & Shoham, 2008; Dragioti et al., 2017; Leichsenring, & Steinert 2017). Ultimately, historians of psychiatry and medicine at large, might appreciate the authors’ effort in providing a complex history involving several layers of inquiry, including institutional, intellectual, and social narratives (Silverman, 2011; Vicedo, 2018). Personally, as a junior member of this latter group, I found particularly intriguing how the authors distinguished the deinstitutionalization of the “mentally retarded” from that of other fields and how the idea of the normal acted as a sort of cornerstone first for the confinement of children (in order to save the normal family) and secondly, for their discharge (in order to give them a normal life).

In conclusion, The Autism Matrix offers a rich and thought-provoking account of the socio-historical origins of the autism epidemic. One question can be raised in order to stimulate further discussion. Is it possible to trace a similar matrix for other mental or physical disorders?

 

References

Eyal, G., Hart, B., Onculer, E., Oren, N., & Rossi, N. (2010). The autism matrix: The social origins of the autism epidemic. Cambridge: Polity Press.

Baker, T. B., McFall, R. M., & Shoham, V. (2008). Current Status and Future Prospects of Clinical Psychology. Psychological Science in the Public Interest, 9(2), 67–103.

Dyer, O. (2015). Rise in US autism cases is mostly due to changes in diagnosis, study claims. BMJ, 4209(August), h4209.

Dragioti, E., Karathanos, V., Gerdle, B., & Evangelou, E. (2017). Does psychotherapy work? An umbrella review of meta-analyses of randomized controlled trials. Acta Psychiatrica Scandinavica, 136(3), 236–246.

Leichsenring, F., & Steinert, C. (2017). Is Cognitive Behavioral Therapy the Gold Standard for Psychotherapy? JAMA, 318(14), 1323.

Marx, K. (1867). Das Kapital: Kritik der politischen Oekonomie. Hamburg: Verlag von O. Meissner.

Miller, G. (2012). Why Is Mental Illness So Hard to Treat? Science, 338(6103), 32–33.

Foucault, M. (1967). Les Mots et les Choses. Paris: Baillère.

Kirmayer, L. J., & Crafa, D. (2014). What kind of science for psychiatry? Frontiers in Human Neuroscience, 20(1).

Silverman, C. (2011). Understanding Autism: Parents, Doctors, and the History of a Disorder. Princeton: Princeton University Press.

Verhoeff, B. (2010). Drawing borders of mental disorders: An interview with David Kupfer.BioSocieties, 5(4), 467–475.

Vicedo, M. (2018). The ‘Disadapted’ Animal: Niko Tinbergen on Human Nature and the Human Predicament. Journal of the History of Biology, 51(2), 191–221.

3 thoughts on “Autism Epidemic?”

  1. Hi Fillippo,

    This is a nicely done review.

    I suggest you send it to Marga – unless you think she’s has already seen it.

    Cheers,

    Mark

    ________________________________

    Liked by 1 person

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