"They Really Save Us From Ourselves" : Autism Researchers' Insights on Community Engagement and Ethics.

Abstract

Autism research depends on the participation of autistic children and adults as well as their families, but researchers have not routinely involved autistic people in the planning or execution of research. Community-engaged research practices, standard in other fields such as areas of public health, are gaining acceptance in autism research, although some researchers and other stakeholders remain concerned about their appropriateness, feasibility, or utility. This study, part of a larger project on stakeholder views on the ethics of community engagement practices in autism research, examines researchers' ethical beliefs about community engagement. We find that the researchers with whom we spoke cite multiple specific ethical and epistemological benefits of these practices and relatively few risks. Barriers to community engagement are, in their view, often institutional and practical, including the longer timelines of community-engaged research, resistance or lack of comprehension on the part of funding organizations and grant reviewers, the need for additional resources to support appropriate compensation, and ensuring that community stakeholders and researchers have a shared understanding of terminology.