This project examines the ways in which individuals and communities come to understand illness and how their explanations impact their health behavior and health care choices. It contributes to current sociological research which explores how laypeople get involved in and change the course of scientific research and policy. There is growing statistical evidence that Somali refugee populations have higher prevalence rates of autism spectrum disorder than all other ethnic/racial groups. This project examines the ways that groups of Somali parents of children with autism in two national contexts (Minneapolis, MN and Toronto, Canada) have forged movements to understand and address their health experiences. Groups in each location have developed divergent approaches to treatment and vaccine uptake. This is the first study to examine the ways in which minority groups make sense of their experiences with autism.
In this research, the investigator develops the concept of "epistemic communities" through a cross-national comparison, which has both theoretical and practical implications. This project has four specific aims: 1) to describe and explain the causal theories parents have about the development of autism; 2) to describe the health experiences of parents of children with autism (from the discovery of the disorder, through securing diagnosis, accessing benefits and resources, and seeking treatment) in Toronto and Minneapolis; 3) to explain when/if parents get involved in or forge a health social movement; and 4) to examine the causal links between these three previous dynamics. The PI will accomplish these aims through two years of qualitative research of Somali families in Minneapolis and Toronto. This research into the formation of epistemic communities on autism has profound implications for understanding health behavior and the interaction of laypeople with scientific expertise. Such information could lead to better and more accurate policy initiatives on health care and support for those with autism, not to mention better information on vaccine skepticism and refusal. Further, racial minorities have been underrepresented in the research on autism, and this project seeks to address this bias.