The Sword in the Soul: Meanings of Autism Spectrum Conditions Among Diagnosed Adolescents

Background: As the rate of autism diagnosis continues to increase, a growing number of youth are coming of age diagnosed with autism spectrum conditions. Little is known about how the diagnosis affects the developing identities of these youth as they grow into adulthood (Petalas et al, 2013). Meanwhile, the kinds of meanings that the diagnoses hold for individuals affected have become increasingly diverse and contentious (Ortega, 2009; Bumiller, 2008; Bascom, 2012). Ethnographic research can reveal how the meanings of autism spectrum conditions are negotiated in particular contexts of daily life, and show some consequences of those meaning-making practices for those affected by autism (Solomon and Bagatell, 2010; Grinker and Cho, 2013). 

Objectives: This study investigated how adolescents diagnosed with Asperger’s Syndrome and related autism spectrum conditions define what autism is, and how it should be treated. In particular, the study foregrounded two popular models of autism in contentious conflict: the model of autism as a disease separate from the affected person, and the model of autism as a fundamental and often valued element of the affected person’s neurogenetic identity (Sinclair, 1999; Solomon, 2008). How do youth coming of age with an autism spectrum diagnosis reconcile these seemingly incompatible understandings of autism and the self? 

Methods: The research consisted of two years of ethnographic fieldwork at sites where the meanings of autism spectrum conditions were being negotiated and put into practice in consequential ways: a public and a private school, a psychiatric clinic, and a community center/summer camp, all serving adolescents with Asperger’s  Syndrome and related ASC’s. I also conducted 130 semi-structured interviews with people diagnosed with ASC's, their family members, and the professionals working with them. 

Results: Youth on the spectrum who participated in this study tended to see autism as (as one participant put it) “a double-edged sword”. It gives them cherished strengths, unique perceptual experiences, and terrifying vulnerabilities. It isolates them socially while also bringing them into fellowship and a sense of community with affected others. It helps make them who they are, but also profoundly disrupts their sense of self. In this presentation, I will describe how these youth often look outside of medicalized models of autism-as-disease and autism-as-identity to make sense of this experience, drawing instead on a folk mythology of embodied difference from roleplaying games, Japanese animation films, and other fantastical popular media. In their games, their art, and other informal creative practices, they playfully depict themselves as hybrid creatures: mutant antiheroes who are half human and half demon, pierced by shards of evil swords, or possessed by powerful ancestors. In doing so, they reconcile the valued and troubling elements of their experience. 

Conclusions: Through a shared mythology that transcends the limitations of medical models, youth on the spectrum are better able to articulate the complexities and ambiguities of their condition. Attention to the subjective experience of autism in cultural context can help illuminate such unexpected and productive practices.