Asperger’s Syndrome, Biomedicine & Identity

Med Anth-SciStud - Elizabeth Fein2

A review of The Machine Within: An Ethnography of Asperger’s Syndrome, Biomedicine, and The Paradoxes of Identity and Technology in the Late Modern United States, by Elizabeth Fein.

There is much to say about autism, and the last decade or so has seen a steady surge of literature from social scientists and humanities scholars concerned with challenging dominant constructions of the condition that have been advanced in biomedical or therapeutic contexts. Elizabeth Fein’s dissertation is a welcome and exciting contribution to this burgeoning literature, which includes recent work by Dana Lee Baker (2010), Richard Grinker (2007), Chloe Silverman (2008, 2011), Gil Eyal (2010), Stuart Murray (2012), Majia Nadesan (2005), Mark Osteen (2008), and Davidson and Orsini (2013), among others.

Autism might be appropriately described as an “an epidemic of signification.” In her definitive cultural history of an alternative but similarly momentous health “crisis,” Paula Treichler (1999) uses the term to describe AIDS as both a “transmissible lethal disease and an epidemic of meanings or signification” (Treichler 1999, p. 11). Emerging during particular historical periods, evoking specific political, social, cultural and emotional responses, epidemics of signification reveal crises of meaning. Autism, as revealed in this rich empirical treatment, is marked by struggles of meaning-making – is autism a disabling condition, a way of life, a biomedical problem, a disorder of affect – that are difficult to reconcile, especially in the epidemic language that is summoned in popular and media discourses.

Elizabeth Fein brings a distinctive set of analytical skills to this study, drawing on her training as both an ethnographer and clinical psychologist, certainly a rare combination indeed. And the reader is the better for it. One is immediately struck by the interdisciplinary heft of this dissertation, and Fein’s deft use of a range of literatures that, in less capable hands, would feel patched together in a fit of forced interdisciplinarity. Fein is careful to draw on concepts, ideas and frameworks that allow her to explore the complexity of this rich terrain, rather than hitching autism to her preferred theoretical framework. In this way, Fein’s work most closely resembles that of Ian Hacking – the scholar who has arguably done the most to advance our understanding of autism in the social sciences and humanities. Hacking first advanced the idea of autism as an “interactive kind,” and has been cited widely in a range of international and interdisciplinary contexts for his idea of “looping,” which suggests that the classifications and categories we use to define populations – in this case, autistic people – transform not only the categories but also the populations so defined.

Clinical ethnography is the term used by Fein to describe her fieldwork. As she explains, clinical ethnography “attends to the specific impact of the of cognitive, emotional, phenomenological, and perceptual differences that get classified under particular diagnoses and evoke particular regimes of care, examining the particulars of these differences and regimes as well as their relationship to broader discourses around difference, disability and medicine” (p. 34). Her most important contribution to the field of “critical autism studies” (see Davidson and Orsini 2013) is her close, sustained attention to the “interaction between the particularities of autism and the particularities of micro, meso, and macro-level social forces” (p. 32).

The dissertation is also marked by the depth and breadth of her empirical legwork, which included 120 interviews, as well as months of participant observation in a number of different contexts/environments where she met with people on the spectrum, family members, and professionals in the autism field. A seasoned ethnographic observer, Fein mines her countless hours in the field to describe the many worlds of autism in which we inhabit, whether in autistic self-advocacy communities (Chapter 3) that view autism as an essential feature of their personhood to the therapeutic settings where parents work to assist their children to “pass” as normal, or in schools (Chapter 4). On each occasion, Fein does an excellent job of treating autism with the seriousness it deserves. The author is to be commended for avoiding the tendency to drift into stereotypical depictions of autistic difference that often essentialize the divide between autistic and non-autistic personhood, as she explores when dealing with the notion of “brainhood.”

The author is equally comfortable discussing social theory (e.g. Anthony Giddens and Ulrich Beck) as she is addressing the particularities associated with diagnostic tools for autism. Moreover, it is when she wears both hats that Fein’s scholarship stands out. In Chapter 1, where she discusses the Autism Diagnostic Observation Schedule (ADOS), the so-called gold standard for determining whether someone is on the spectrum, Fein reveals how these instruments shape the subjectivities of participants. For the individual being observed, the process of “being oneself,” Fein explains, “means following minutely prescribed behavioral imperatives while simultaneously making those imperatives seem to disappear” (p. 58). She adds: “The process of ‘pretending you are not pretending’ in such a way as to allow rigid behavioral expectations to masquerade as nonexistent is at the heart of successful (i.e. not autistic) performance on Modules 3 and 4 of the ADOS” (p. 58).

The remaining chapters of this thesis focus on some of the flashpoints in the so-called autism wars, including Chapter 2’s discussion of emerging advocacy around biomedical treatments for autism, and views of the condition that liken it to a toxic assault on the body. While Fein might be skeptical of some of the claims made by the biomedical movement’s most ardent proponents, she instead chooses to engage a more thoughtful discussion of how a focus on the individual body presupposes a “natural state” in which individuals are “unaffected by a toxic, modern industrialized world” (p. 119). Ultimately, she explains, this stance “compromises its potential for the kind of radical critique that might contribute to making the kind of changes they want to see in the world” (p. 119)

One noteworthy aspect of this brilliant dissertation relates to the author’s engagement with and link to conditions of individualization under conditions of neoliberalism. “There is something going deeply wrong with competitive capitalism as it is manifesting in the current moment,” she notes. “When we have become so deeply subdivided that we are no longer able even to develop into autonomous, self-actualized individuals, the individualist assumptions under which our sociopolitical system has been able to function begin to founder. I do not have any suggestions for how we fix this. But I suggest we listen closely to some of the emerging forms of social organization and action that are posing challenges to the hard individualist agenda…” (p. 291).

Elizabeth Fein’s work deserves to be widely read, in academic circles, of course, but more broadly by autistic individuals and the communities of people who care for individuals on the spectrum. As she rightly concludes, “The seemingly intractable conflicts that are tearing apart the autism community are conflicts faced by all of us, wherever we fall on the spectrum of neurodiversity. To heal autism, we will need to heal not only ourselves, but the spaces we share” (p. 292).

Michael Orsini
School of Political Studies/Institute of Women’s Studies
University of Ottawa
morsini@uottawa.ca

Literature Cited

Dana Lee Baker, The Politics of Neurodiversity: Why Public Policy Matters (Boulder: Lynne Rienner Publishers, 2011).
Joyce Davidson and Michael Orsini, eds. Worlds of Autism: Across the Spectrum of Neurological Difference (Minneapolis: University of Minnesota Press, 2013).
Gil Eyal et al. The Autism Matrix: The Social Origins of the Autism Epidemic (Cambridge: Polity Press, 2010).
R. Richard Grinker, Unstrange Minds: Remapping the World of Autism (New York: Basic Books, 2007).
Stuart Murray, Autism (New York and London: Routledge, 2012).
Majia H. Nadesan, Constructing Autism: Unravelling the “Truth” and Understanding the Social (New York: Routledge, 2005).
Mark Osteen, ed. Autism and Representation (New York and London: Routledge, 2008).
Chloe Silverman, “Fieldwork on Another Planet: Social Science Perspectives on the Autism Spectrum,” BioSocieties 3 (2008), pp. 325-341.
Chloe Silverman, Understanding Autism: Parents, Doctors, and the History of a Disorder (Princeton: Princeton University Press, 2011).
Paula Treichler, How to Have Theory in an Epidemic (Durham, NC: Duke University Press, 1999).

Sources

Interviews and participation observation, in a rural community on the Northeast coast of the United States and in a nearby major city, including fieldwork at classrooms in the public school system and in private schools, summer camps, support groups, local service providers, psychiatric clinics and university medical centers, research teams conducting clinical trials.

Dissertation Information

University of Chicago. 2012. 306+ix pp. Primary Advisor: Tanya Luhrmann.

 

Image: Stock photo, “Regard Vert.”

Leave a Reply