Research, Education, and Action
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 academicâ€“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.
Nicolaidis, C., Raymaker, D., McDonald, K, Dem, S., Ashkenazy, E., Boisclair. W.C., Robertson, S, Baggs, A. "Collaboration strategies in non-traditional CBPR partnerships: Lessons from an academic-community partnership with autistic self-advocates." Progress in Community Health Partnerships: Research, Education, and Action. 2011:5(2); 143-150.