Progress in Community Health Partnerships: Research, Education, and Action
Volume 5, Issue 2, Summer 2011
pp. 143-150 | 10.1353/cpr.2011.0022
Background: Most community-based participatory research (CBPR) projects involve local communities defined by race, ethnicity, geography, or occupation. Autistic self-advocates, a geographically dispersed community defined by disability, experience issues in research similar to those expressed by more traditional minorities.
Objectives: We sought to build an academic–community partnership that uses CBPR to improve the lives of people on the autistic spectrum.
Methods: The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) includes representatives from academic, self-advocate, family, and professional communities. We are currently conducting several studies about the health care experiences and well-being of autistic adults.
Lessons Learned: We have learned a number of strategies that integrate technology and process to successfully equalize power and accommodate diverse communication and collaboration needs.
Conclusions: CBPR can be conducted successfully with autistic self-advocates. Our strategies may be useful to other CBPR partnerships, especially ones that cannot meet in person or that include people with diverse communication needs.