Collaboration Strategies in Nontraditional Community-Based Participatory Research Partnerships: Lessons From an Academic–Community Partnership With Autistic Self-Advocates

TLDR

Community‑based participatory research typically engages local communities defined by race, ethnicity, geography, or occupation, but autistic self‑advocates—a geographically dispersed disability group— encounter comparable research barriers. The study aimed to establish an academic–community partnership using CBPR to enhance the lives of individuals on the autistic spectrum. The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) brings together academic, self‑advocate, family, and professional representatives and is conducting studies on autistic adults’ health‑care experiences and well‑being. The partnership identified technology‑ and process‑based strategies that equalize power and accommodate diverse communication needs, demonstrating that CBPR can succeed with autistic self‑advocates and offering guidance for other remote or communication‑diverse CBPR collaborations.

Abstract

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.