Abstract
In Living on the Spectrum, anthropologist and clinical psychologist Elizabeth Fein deftly navigates an exploration of autistic cultures that simultaneously “[flirts] with the risk of reifying biological difference” (p. 9) and embraces the “lines of continuity between phenomena . . . that have been explicitly labeled with autism and those that have not” (p. 9). This latter embrace goes beyond the concept of an autism spectrum and its attendant normalizing possibilities to a reframing of autism as a fundamentally social phenomenon that lives in “the spaces between us” (p. 19). Bypassing so many of the pitfalls of person-first versus disease-first debates prevalent in disability studies, Fein proposes: “although I am not an autistic person, I am a person with autism, as autism has been with me for lo these many years” (p. 23). With Fein as our capable guide, we too, as readers, embark on a journey with autism.
Following a helpful introduction, Fein begins the ethnography by drawing readers into a fantastical scene that anthropologist Povinelli (2011) might refer to as an “otherwise”—an ephemeral space that haunts those who encounter it with just-beyond-reach modes of being. In Fein’s case, this otherwise takes the form of a live-action role-playing summer camp for youth on the autism spectrum. Through some of the ethnography’s most evocative writing, Fein lets us glimpse a vision of reality in which “Aspie” styles of cognition, rather than signifying estrangement from the social world, are “woven into a set of cultural practices and celebrated as sources of pleasure, affiliation, and pride” (p. 39). The “Summer of Adventure,” while not without its share of tensions and meltdowns, is a realization of Fein’s claims that medicalized notions of Asperger’s syndrome/autism as a disease to be cured have more in common with identity-based conceptualizations of Asperger’s/autism as a valued aspect of the self than one might suppose; that what these two seemingly opposed perspectives share is a problematic model of personhood abstracted from social context; and that an ethical response to autism calls for a radical rethinking of the parameters of personhood itself.
The six chapters that follow take readers on a messy tour of the bureaucratic procedures and institutional arrangements through which an array of conceptualizations of autism spectrum phenomena are produced and reinscribed. Along the way, Fein makes a number of interventions into ongoing theoretical conversations within medical and psychological anthropology, some of which may be of greater relevance to a particular subset of the ethnography’s readers. In Chapter 2, Fein demonstrates how, in and through the labyrinth of special education services, youth on the autism spectrum learn to identify with certain cognitive classifications. Fein argues that the educational classificatory apparatus works to facilitate a tenuous sense of autistic identity and belonging largely by teaching diagnosed students to define themselves in opposition to adjacent categories such as “emotional disturbance” and “mental illness.”
Subsequent chapters chart “the expansion of the category of neurodevelopmental disability into new arenas of sociality and interaction” (p. 57). In Chapter 3, Fein considers the implications for moral personhood and agency of the prevailing model of Asperger’s kids as “innocent machines” with difference hardwired in their brains. Contrasting the local discourses surrounding students in an Asperger’s classroom with those applied to “psychiatrically identified” students housed separately within the same school building, Fein observes that whereas the maladaptive behaviors of members of the former group are attributed to uncontrollable brain reactions to sensory input, behaviors of students in the psychiatric group are seen as intentional and morally defective. Modifying Fernando Vidal’s concept, Fein argues that these opposing models of Aspie and psychiatric moral personhood point to two distinct brainhoods or “representations of the brain as a symbol of the self” that individuals living under differing diagnoses are enrolled into and inhabit (p. 87): autistic brains are understood to be fixed, closed systems, impervious to interpersonal influences; psychiatric brains, on the other hand, are understood to be unpredictable, malleable, and subject to social forces. Because of these differing brainhoods, Fein concludes, students on the autism spectrum are less stigmatized than those diagnosed with mental illnesses, but they are effectively stripped of their capacity for socially meaningful communication. By drawing out the divergent moral and subjective endpoints of these two brainhoods, Fein productively complicates scholarly characterizations of biomedical selfhood (Luhrmann, 2000) and the “cerebral subject” (Vidal & Ortega, 2017).
In Chapter 4, Fein further analyzes the implications of these two brainhoods, expanding out from the small school district of Brookfield to the major metropolitan area of Park City. Drawing on observations of an Asperger’s support group (ASPNET) and interviews with support group participants, Fein documents the ways in which her informants lay claim to what she terms a “neurostructural self.” Through their mobilization of metaphors of hard wiring and alternative computer operating systems, Fein argues, ASPNET meeting participants insist on a construal of Asperger’s syndrome as immutable, value-neural, and constitutive of the self. Furthermore, the politics of neurostructural selfhood enable ASPNET members to resist the expectations of infinite flexibility and adaptability to change—ultimately, to resist the very notions of “disease” and “cure”—associated with psychiatric brainhoods. Fein situates this chapter’s analysis within theoretical debates regarding the affordances and the pitfalls of neurochemical understandings of the self, which foreground the brain’s plasticity in ways that place responsibility for self-transformation in the hands of the diagnosed individual. Fein shows how members of ASPNET articulate alternative pathways to self-change and growth rooted in their own discourses of hardwired brains and their shared affinity for structural fixedness. Lest we become too enthused by the radical potentialities of neurostructural selfhood, however, Fein closes the chapter with concern that this model’s vision of the self is ultimately circumscribed by the very clinical science agendas of separation and elimination that it aims to resist.
In Chapters 5 and 6, Fein turns to an exploration of the ways in which the confluence of older and newer clinical understandings of autism lead to a process of “divided medicalization,” in which some of autism’s aesthetic, identitarian, and phenomenological dimensions are evoked but then occluded in the course of medical intervention. Through an analysis of recent autism science, Fein traces how psychiatry’s newfound interest in the neurodevelopmental paradigm has laid the groundwork for a clinical dilemma: psychiatric science has begun to produce multivalent, “whole package”-like diagnostic constructs such as “autism spectrum disorders,” but its technologies of intervention lag behind, still aiming to identify, contain, and eliminate pathogen-like problems. Fein argues that this dilemma is not resolved by deliberate attempts to keep valued autistic attributes outside of the purview of medical intervention; instead, such attempts at boundary maintenance render nonpathological qualities of autism vulnerable. These claims are illustrated, in Chapter 6, by Fein’s heartbreaking case study of the creation and eventual failure of an Asperger’s syndrome clinic located within a medical center. With its recreational outings and Drama Group, the Asperger’s Center proves too alienating to survive in a medical school that is beholden to a pathogen model of psychiatric treatment.
Chapter 7 is the culmination of Fein’s critique of a binary that falsely suggests that our available options for conceptualizing autism are bounded by the image of an isolated person held hostage by disease at one extreme, and an individual whose identity is defined by a set of fixed internal characteristics at the other. We hear the pain in parents’ words as they grapple with Fein’s most difficult of interview questions: If you could somehow make your child’s Asperger’s syndrome/autism go away, would you? Responses stake out a set of deeply held ideological positions vis-à-vis the meanings of autism and selfhood. There are those who insist that they would never cure or prevent their child’s autism if given the opportunity, because doing so would mean that their child would no longer be the same person. And there are those parents who would take the cure—not because they themselves would prefer a more “normal” child, or because they fail to see value in their child’s quirky talents and dispositions, but because they cannot envision a future for their child that includes self-sufficiency and social belonging. Fein argues persuasively, but perhaps controversially, that the same faulty model of personhood that defines identity solely in connection with individual attributes of the atomized self—thereby equating the notion of a cure for autism with an act of annihilation—erases alternative understandings of selfhood (as always already intertwined with broader social networks and communities) that could render autistic lives livable and imaginable.
Fein closes the book in much the same spirit as it opens—with a celebration of autistic presence in the form of shared folk mythologies and speculative fictional play. Only now, instead of feeling like a receding horizon of possibility, Fein explicitly calls on readers to treat the fantastical stories of mutation, hybridity, permeability, interconnectivity, and antiheroism voiced by youth on the autism spectrum as resources for radically rethinking the parameters of personhood and our modes of intervention on the social disorder at the center of struggles around neurodevelopmental difference.