Community Engagement in Deafness and Autism Research: Organizer Experiences

Background: Research with marginalized groups increasingly aims to include representatives from the groups studied not just as data-generators, but as key contributors in developing and executing the research. The scientific community is shifting in kind: 1) with improvements in access to education, researchers who study neurodiverse populations are more often themselves members of those communities; 2) an understanding that research should respect the needs of stakeholders; 3) a recognition that research requires extensive community collaboration. Certainly, the process of scientific inquiry requires training and expertise; but what is the role of researchers who are not members of the community they research? Community engagement is particularly complex when the very nature of human interaction is under investigation, with studies involving consent and the emergence and use of conventional communication skills.

Scientific research with deaf people and autistic people (and people who are both deaf and autistic) exemplifies the challenge of navigating community, culture, and marginalization. Over the past sixty years, research on Deafness has led to watershed advances in our understanding of the fundamental building blocks of human language. Deaf researchers have made strides in persuading the scientific community to jettison the “medical model” in which deafness was construed as something that needed to be fixed rather than accepted as part of the diverse spectrum of humanity. These changes came about primarily because non-researcher and researcher members of the Deaf community were engaged as partners in the research enterprise.

Objectives: To present lessons learned from a 2018 workshop.

Methods: Drawing on our collective expertise (personal and scientific), and on the experiences of autism community organizations (e.g., ASAN), a team of scientist and non-scientist Deaf, Autistic, and neurotypical (i.e., individuals who are not autistic) people gathered in October, 2018 to discuss the challenges of engaging non-scientist Deaf and autistic communities in research. Steve Silberman, author of Neurotribes, was an invited speaker. Facilitated discussions and shared meals created spaces for exchanging ideas. The planning process was itself challenging, as Organizing Committee members struggled with difficulties in communication, differing expectations about how to accommodate individual needs, and with shifting and differing goals.

Results: Important similarities and differences characterize the Deaf and Autistic communities, including questions about who speaks for the community, the importance of labels, and the utility of community members raising their voices to affect public policy. We also learned firsthand that Deaf individuals with autism are grossly underserved; the rapidly growing number of Deaf autistic individuals in the US have very limited access to services, research, and a community.

Conclusions: Given that many others may wish to include non-scientist community members in a group enterprise, we share the collective wisdom that our group takes away from this meeting. While many others have engaged in a similar process, the historical and experiential parallels between the Deaf and Autistic communities provide a unique foundation for improving on the process; with others, we will build on this momentum in planning future meetings.