Reviewed Book
Living on the Spectrum: Autism and Youth in Community, Elizabeth Fein, New York: NYU Press, 2020, 293 pp.
Ellen Badone
McMaster University
Based on two years of participant–observation ethnography in multiple sites on the east coast of the United States, Fein’s humane and insightful book explores the fundamental controversy in current debates about autism: Is this condition a “disease to be cured” or “an identity to be respected” (p. 3)? Fein, who received her PhD from the Department of Comparative Human Development at the University of Chicago, is also trained in psychodynamic psychotherapy and neurodevelopmental assessment. She thus brings both ethnographic and clinical perspectives to her research, which took place in rural and urban settings, in schools, summer camps, support groups, and science fiction conventions as well as in research labs and medical school clinics.
Fein’s goal is to explore the diverse ways that people on the autism spectrum, their family members, teachers, and clinical practitioners seek to construct and interpret the meanings of autism as a contested condition. She emphasizes that autism is a moving target, whose clinical definitions and public image are continuously in flux, partly because of Hacking’s “looping effect,” whereby the experience of living under a social scientific classification changes the self-understandings, social interactions, and behavior of the people classified by that label. Fein’s fieldwork, return visits to field sites, and writing of this book spanned an important period of transformation in the official definition of autism according to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM). In the fifth version of the DSM, published in 2013, the conditions previously termed “pervasive developmental disorder” with five categories, including autistic disorder and Asperger’s syndrome, were re-formulated as a single entity, Autism Spectrum Disorder (ASD), on the assumption that all these conditions stem from a single pathophysiological substrate. Technically, therefore, the diagnosis of Asperger’s Syndrome, which differed from autistic disorder by virtue of the absence of verbal and cognitive impairments, disappeared. Thus, while Fein began her research focusing on people living with Asperger’s Syndrome, their sense of identity and clinical diagnosis shifted to the broader concept of autism over the course of her study.
As Fein points out, autism is at the leading edge of a shift in American psychiatry, spurred by the NIMH’s Research Domain Criteria Project (RDoC), away from viewing mental disorders as discrete disease entities with negative symptoms that can be separated from the individual, to a view of mental conditions as the product of a total package of neurobiological phenomena that include both positive and negative attributes. Yet, as she observes, through a process she terms “divided medicalization,” in clinical settings the former view of autism predominates over the latter. As a result, the creativity, verbal virtuosity, and intellectual acuity of autistic individuals is overlooked, since clinicians focus instead on eradicating autism’s social and behavioral deficits. Medical research seeking targeted biological treatments for autism or susceptibility genes that could be identified in utero with a view to prevention, risks obliterating the whole package of autistic strengths and vulnerabilities. Fein calls for a “different way of doing science,” that would appreciate the “richly symbolic, aesthetic, collaboratively co-created spaces” of autism, its pleasures and power as well as its suffering (p. 238).
Ethnography, with its methodology of researcher immersion in the life-worlds of those researched, offers a privileged avenue toward this new way of doing science, as Fein so clearly illustrates. Significantly, the ethnographer is enjoined to take the perspective of the other, which is precisely what autistic people are thought by some researchers to be unable to do, lacking capacity for Theory of Mind. Yet Fein shows that contrary to stereotypes, the autistic young people in the summer camps and support groups she participated in can be social, empathize with one another, and create communities in which they flourish. They do so, in part, through engagement in fantasy games, storytelling, and live action role playing in which they take on the identities of characters with magical powers and enact mythological themes. Such activities enable autistic people to imaginatively re-construct their identity, emphasizing their positive attributes and coming to terms with their challenges. Fein’s ethnography calls attention to the healing powers of play, narrative, art, and creativity, which heal not by taking the autism out of the person, but by enabling the person to integrate all of their strengths and struggles and to find their own way to fulfilment.
Unfortunately, spaces that promote this type of healing have a hard time flourishing in medical clinics and mainstream educational institutions. The kids at the hospital-based support group are too noisy for the medical environment, and there is too much concern about HIPAA restrictions on information sharing to facilitate community building outside the confines of clinic. Private schools and parent-run programs, like the Aspie Camp in which Fein was involved, struggle with funding and organizational difficulties and cannot always be sustained over time, leaving both parents and autistic youth frustrated and isolated.
Fein’s ethnography is richly textured and she makes skillful use of quotations from her recorded conversations with interlocuters that bring these encounters to life. The suffering and the triumphs of autistic young people, their parents, teachers, and camp leaders are vividly portrayed. Throughout, Fein argues that autism is a social condition, not bounded within individuals. Paradoxically, although autism is defined as a disorder involving social isolation, as she points out, “one cannot be autistic in a vacuum” (p. 6). The very criteria used to define the disorder involve relationships with other people, activities and objects. Thus, autism happens at “the troubled intersection between the individual and their social surroundings” (p. 5). In line with the social model of disability, Fein suggests that it is at this intersection that change needs to occur. Poignantly, the book ends with the story of Phillip, a brilliant but lonely man who excels at partial differential equations and devotes himself to the project of citizen-driven lunar settlement. While Phillip has the determination, bravery, and intellectual ability to push the boundaries of human experience and reach for the moon, Fein powerfully advocates that “there needs to be a place for him on Earth” (p. 254). Moreover, it is not just the Phillips of the world, but society at large that would benefit from such a change in social perspectives.
Living on the Spectrum is written in an engaging, readable, and sometimes poetic style, which enhances its ability to reach a diverse audience beyond medical anthropologists interested in autism. Although Fein is not autistic, her affinity for the autistic community and her appreciation for autistic potentialities renders her interpretations consonant with the concerns of autistic readers. Parents of young people on the autism spectrum will recognize themselves in the words, experiences, and ambivalent emotions of the parents who Fein interviewed. Fein’s position as both a clinician and ethnographer make her analysis deeply reflexive, since she simultaneously applies a critical gaze to neuropsychology while using its principles to help people in distress. As a result, psychologists and other therapists working with people on the autism spectrum will benefit from reading this book. Finally, Fein’s lively ethnographic vignettes and her clear explanations of theoretical concepts like the cerebral subject make Living on the Spectrum accessible as a text for upper-level undergraduate and graduate courses in medical anthropology, disability studies, psychology, and sociology.