Innocent Machines

Drawing on school-based ethnography in classrooms serving students with Asperger’s syndrome and related autism spectrum conditions in a district on the East Coast of the United States, this chapter analyzes how the meanings of these conditions are defined, negotiated, and deployed in consequential ways in contexts of everyday practice. The chapter begins by tracing schisms between “developmental disability” and “mental illness.” Through what Ian Hacking calls a “looping effect of human kinds,” students diagnosed with Asperger’s syndrome and related developmental disabilities come to exemplify a form of “brainhood,” a cerebral identity associated with replicable, quantified, and high-tech brain science. This schema is contrasted with local understandings of students classified with emotional or behavioral disturbance as changeable, morally culpable, and interpersonally engaged—thus exemplifying theories of mental illness as rooted in fluid brain chemistry and family dysfunction. The association of students with Asperger’s syndrome with a brain science seen as value-producing, mechanistic, and estranged from sociality wins them both a protected space and scarce material resources; however, this vision of Asperger’s students as “innocent machines” cannot effectively conceptualize the moral agency of their robustly social lives.

The Division of a Syndrome

This chapter provides an ethnographic case study of divided medicalization—the process through which multivalent, identitarian conditions get produced and then reduced to fit within a preexisting, disease-oriented clinical paradigm. The chapter is a clinical ethnography of a clinic located within a university medical center in an East Coast city, serving children diagnosed with Asperger’s syndrome. As medical categorizations and classifications expanded beyond the borders of the body to examine and remedy disorders of social life in the world, the staff shifted their own practice, exploring interventions that were playful and social, determined by pleasures as well as pathologies, and driven by the goal of expanding relationships rather than containing contagion. These interventions, however, crossed and complicated the clinic's carefully maintained boundaries between the inside and the outside of both the building and the body. In the end, the elements of autism that least fit within the existing medical paradigm were not incorporated into that paradigm but instead came to be extruded from it. Interpersonal, aesthetic, and identitarian elements of the condition were at first invited into but then gradually banished from the clinic, leaving behind an incomplete representation of complex social phenomena as diseases to be eliminated from individuals.

Bowling Together

The Conclusion ends this clinical ethnography with recommendations, suggesting that interventions for autism attend not only to individual bodies but also to the repair of strained social ties and the rebuilding of social capital. Drawing on follow-up interviews with the youth on the spectrum whose experiences inform the rest of the book, as they now move into young adulthood, the chapter describes the places where they have successfully found and maintained a sense of connection and community. Using literacy scholar James Gee’s concept of an “affinity space” as a starting point, this chapter identifies characteristics shared by the communities favored by these youth. Such spaces tend to be organized around a shared interest, activity, or affinity, characterized by an ethic and aesthetic of connection and repair, and motivated by an accessible notion of virtue that can be cultivated through practical action. As such, they may provide advantages not offered by traditional social skills groups. Through such work to maintain local connections, the social disorder arising from Asperger’s syndrome, autism, and other forms of neurodevelopmental difference can be addressed where it takes place: not only within individuals but between us as well.

Searching for a Place

This chapter explores the challenges faced by youth diagnosed with Asperger’s syndrome and their families as they struggle to find a place for themselves in their school system. Through school-based ethnography of a district on the East Coast of the United States, this chapter argues that the experiences of these students in the special education system is an example of what sociologist Ulrich Beck calls “institutionalized individualism”: People are compelled, through large and geographically dispersed bureaucratic systems, to think of themselves as decontextualized individuals rather than members of consistent communities bound by social ties. The students’ creative attempts to create consistency in their environments are repeatedly uprooted, leading to a worsening cycle of social estrangement and brittle emotional volatility. For many of them, the Asperger’s syndrome diagnosis provided a refuge: access to Asperger’s-specific classrooms that provided a sense of safety and a shared culture, characterized by the inventive repair of broken connections both material and social.

The Pathogen and the Package

This chapter charts a “neurodevelopmental turn” in psychiatric diagnosis away from an understanding of mental illnesses as discrete disease categories and toward the assessment and remediation of capacities, assumed to be both neural and universal and arrayed along a spectrum, for perception, memory, attention, learning, and sociality. In this time of paradigm shift, multiple diagnostic entities are produced that coexist under the same name. Different traditions in contemporary biomedicine—one focused on detecting and eliminating discrete disease entities and the other seeking to map and modulate comprehensive “connectomic” systems—produce different but overlapping “autisms”: a “pathogen model” of autism as separable, exclusively negative, and damaging to the self, on one hand, and a “package model” of autism that is an inseparable and constitutive element of personhood with both valued and troubling aspects, on the other. Through a process referred to here as “divided medicalization,” the former is misrepresented as the latter: complex, multivalent neurodevelopmental conditions are produced and then reduced to fit within a preexisting, disease-oriented clinical paradigm. Through divided medicalization, the former comes to stand in for the latter, allowing for the occlusion and potentially the suppression of autism’s multivalent, aesthetic, and identitarian dimensions.

Hardwired

Sociologist Nikolas Rose has posited the emergence of a “neurochemical self” organized around the assumption that our personal characteristics, moods and desires arise from our brain chemicals, and are amenable to molecular modulation through psychiatric drugs. Drawing on clinical ethnography of a series of support groups run by and for individuals diagnosed with Asperger’s syndrome and other autism spectrum conditions, this chapter charts the emergence of a contrasting model of the “neurostructural” self, oriented around the concept of developmental disability and its presumption of fixed innateness and lifelong course. In rejecting the demands for flexibility and adaptation entailed in neurochemical selfhood, this counterdiscourse of hardwired genetic and synaptic brain structure functions as a form of resistance against the demand for constant fluidity and change that characterizes late modernity. However, its core assumptions of a self that is fixed and inalterable are increasingly threatened by the ascendance of neural plasticity as a new mode of both conceptualizing and intervening on the self.

The Sword in the Soul

This chapter focuses on how youth diagnosed with Asperger’s syndrome and related autism spectrum conditions make sense of their own condition and its contradictions. Drawing on clinical ethnography in spaces where youth on the spectrum engage in shared creative practices, the chapter argues that medicalized discourses of autism as either a pathogen-like disease or a value-neutral form of neurogenetic hardwiring are insufficient to conceptualize the experiences of these youth. Autism, as they describe it, feels both intimate and alien, brings both cherished strength and terrifying vulnerability, and constitutes their sense of identity while also profoundly disrupting it. But the dominant ways of talking about autism, grounded in medical understandings of the self as sharply bounded and continuous, separate these aspects of lived experience from each other, casting them as radically incompatible. Instead, these youth playfully reinvent their autobiographies through an alternative shared mythology of mutant antiheroes with permeable selves, drawn from fantasy media, video games, comic books and other speculative fiction. In doing so, they generate new ways of coming to terms with the complexities of their condition.

The Summer of Adventure

This chapter chronicles a summer of clinical ethnography at a camp for youth with Asperger’s syndrome and related autism spectrum conditions, run by a close-knit community of live-action role-playing (LARP) gamers aiming to be inclusive of neurodiversity. Within this alternative culture with its alternative norms, the neurodevelopmental differences associated with Asperger’s took on new and valued meanings and manifestations. The chapter reviews predominant theories about cognition in autism (theory of mind, executive function, and weak central coherence), depicting these attributes not as individual deficits but as collaborative engagements with the physical, cultural, and symbolic materials of the surrounding world. Autism, the chapter proposes, is characterized by a heightened reliance on external systems of organization to create a sense of experiential coherence and to fend off existential threats of meaninglessness and chaos. LARP games offer one such system of organization through their framework of stable, shared narratives, and genre conventions. These resources support interpersonal coordination, bringing together people who share relevant cognitive characteristics into a tenuous but deeply valued community.

Introduction

Autism is like this. It’s like someone sneaks into your house, in the middle of the night, and takes your precious baby’s mind, and personality—and leaves their bewildered body behind. —Cure Autism Now, “Kidnapped” Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person. …...

The Dilemma of Cure

This chapter examines the ethical questions surrounding the cure and prevention of autism as they are negotiated by families affected by Asperger’s syndrome and related autism spectrum conditions. Through interviews with youth on the autism spectrum and their families, as part of a clinical ethnography of these families at home, in school, and within their communities, the chapter argues that the seemingly insoluble quality of ethical conflicts around neurodiversity is underpinned by individualization: a model of the self as sharply bounded and defined exclusively by internal traits. Within many of these families, autism was understood to shape the motivations, desires, interests, and daily activities that constituted the identities of these youth, making the removal of autism feel like an erasure of their personhood. At the same time, in a context where they are expected to win their social roles through such individual attributes, the lack of social support available to these youth put them at high risk for social abandonment and invisibility as adults, especially outside of their parental households. Prevention and cure thus come to feel like both a profound violation and an ethical necessity.