A disorder of affect: Love, tragedy, biomedicine, and citizenship in American autism research, 1943–2003

This dissertation is a social history and ethnography of the biology of affect, and of affect in the practice of biology during the second half of the twentieth century and in the present. I argue throughout the affective dimensions of practice are a crucial aspect of the production of citizenship via biomedical techniques and knowledge. These affective dimensions of love and loss, moreover, provide a way of opening up biomedical practice to scrutiny in ways consistent with the project of feminist science studies, while remaining in conversation with literatures in the social studies of science and science policy studies. I use autism, a severe neurodevelopmental disorder commonly diagnosed in childhood, as a lens through which to examine the ways that affect structures practices of knowledge-production in various communities, including schools, gene banks, professional associations, government committees, and treatment conferences. Because of the contested nature of the autism diagnosis, the possibility of an increase in incidence, and concerns about environmental risks, autism presents an important case of what will prove to be an increasingly common form of participation in politics using the language and practices of biomedicine, risk assessment, and concepts of vulnerability and genetic variability. Autism as a diagnostic entity has changed dramatically over the course of the past sixty years. I track these changes to demonstrate the ways that autism has been constituted through research, treatment, parent groups, and educational systems, paying attention to the functional utility of the diagnosis and the desires and interests driving these changes. Where autism was historically conceptualized in terms of an affective deficit, it is now understood among some communities as a metabolic disorder, and among other communities as the product of mutations in a set of yet-to-be identified genes. Nevertheless, discourses of affect, ruminations on its cognitive correlates, and speculations on the role of love and of deficits of love have informed the history of research on autism. This historical context lends a unique reflexivity to contemporary discussions. Autism research is both a framework for understanding the ways that emotions have been examined and manipulated in the course of medical research and therapeutic attempts, and a remarkable case study of the importance of emotion in producing, stabilizing, and certifying scientific facts, expertise, and ideologies in the context of the deeply—and necessarily, integrally—pluralistic culture of American biomedicine