Boundary Battles in the Autism Field: Genetics, RCTs and Undone Science

• In Event: 1452 - Genetics, Identity, and Other Controversies

Abstract

Autism is arguably one of the 21st century’s most contested illnesses, and early controversies around vaccine harm and autism causation have irrevocably structured the field of autism science. Analyzing data from the NIMH’s Interagency Autism Coordinating Committee and the Omnibus Autism Proceedings, this paper analyzes the ways in which dominant members of the field have doubled down on genetic causation in the wake of the vaccine controversy and used randomized clinical trials as a means of policing the boundaries of “normal” science to stave off the critiques of the alternative autism movement. The alternative autism movement, which occupies a heterodox position in the field of autism, suggests autism is caused by a series of environmental insults (vaccines, the overuse of antibiotics, toxic pollution, electromagnetic rays, radiation, etc.). I argue in this paper that orthodoxy has been restructured over time, slowly incorporating certain environmental causal factors into the genome. Such a move gives rhetorical space to environmental explanations without providing them any substantive causal weight, a discursive turn that renders particular autism knowledges and causal explanations (like vaccines) impossible. Drawing on parental capital and situated knowledge, heterodox members of the field still suggest that the science of autism remains “undone” and that research into environmental causal factors will lead to a better understanding of the ontology of autism and possible biomedical therapies. This paper traces both historical and contemporary battles between orthodox and heterodox members of the field to unpack the complicated epistemic politics of autism.

Author

• Claire Laurier Decoteau, University of Illinois-Chicago