Collaboration strategies in nontraditional community-based participatory research partnerships: lessons from an academic–community partnership with autistic self-advocates

Added on 08/12/2024

Type de contenu

Journal article of the type Scientific research ( ; english)

Christina Nicolaidis , Dora Raymaker * , Katherine McDonald , Sebastian Dern , Elesia Ashkenazy * , Cody Boisclair * , Scott Robertson * , Mel Baggs *
Collaboration strategies in nontraditional community-based participatory research partnerships: lessons from an academic–community partnership with autistic self-advocates published in the journal "Progress in community health partnerships" n°5, vol.2, 7 pages , doi: 10.1353/cpr.2011.0022

*Five co-authors had publicly identified as autistic. [Learn more about this mention]

Summary/Presentation

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. 

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