Date of Degree
Patricia T. Clough
Autism is a growing social concern because of the epidemic-like growth in diagnoses among children. The lives and experiences of adults who have an autism diagnosis, however, are not as well documented. This dissertation project seeks to resolve that dearth of research. I conducted a year of participant observation at four locations of social, self-advocacy, and peer to peer support groups. I also conducted interviews with leaders and participants. I also participated (as a researcher) in an experiment in social skills acquisition led by participants from my ethnographic field work, fulfilling the planned participatory action research component of my original proposal. I found that many of the problems my participants experienced were both mundane and routine for individuals who are marginalized, but at the same time, made extraordinary by the presence of autism. I found that the affective and sensory components of the disorder were primary in the lives of my participants, though these issues are generally secondary to the social complications that typify the social construction of autism elsewhere. I also found that my participants struggled to control the very meaning of autism, especially as the diagnostic criteria were rewritten. Autism has implications for Western notions of citizenship and subjectivity, as well as identity politics and social movements, namely that capacity for rationality is not necessarily associated with capacity for social interaction or independent living. Autism presents as a spectrum and constellation of impairments and differences, and as such, contests the notion of a unified self.
Jenkins, Kate Suzanne, "Assembling Autism" (2014). CUNY Academic Works.