The Autism Spectrum Disorders/vaccine link debate: A health social movement

Over the past ten years, the parents and loved ones of thousands of individuals afflicted with Autism Spectrum Disorders (ASD) have mobilized around the idea that vaccines play a causative role in ASDs. The US Federal government and Western mainstream medicine refute this, claiming evidence refutes any causal link between vaccines and ASD. The result has been a heated dispute between ASD/vaccine link (ASD/VL) activists and mainstream medicine, both claiming legitimacy based on their own scientific research. To examine this controversy and why ASD/VL activists continue to mobilize around a scientific hypothesis that has been largely disproved, I surveyed and conducted in-depth interviews with ASD/VL activists and examined artifacts from the movement.;Utilizing the theoretical framework on Health Social Movements (HSM) developed by Phil Brown and theories on boundary work developed by Thomas Gieryn I examined how and why ASD/VL activists, in collaboration with politicians and scientists, organized a movement to prove there is significant evidence showing a causative link between vaccines and ASDs. I explored how mobilization occurred around several key events including the US Congressional hearings on vaccine safety, the Immunization Safety Review Committee hearings, reports published by the Institute of Medicine, and the release of the Simpsonwood Retreat transcript. I found that while ASD/VL activists became lay experts and used scientific evidence to build their argument, they depended on their own experiential knowledge to inform their personal beliefs on ASD causation and treatment. My findings have significant impact for the study of health social movements and the study of contested illnesses.