- Autism spectrum disorders -- Treatment,
- Autistic people -- Services for,
- Public health -- Research -- Methodology,
- Public health -- Research -- United States -- Citizen participation,
- Social medicine,
- Community health services
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.
© 2011 The Johns Hopkins University Press