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Research, Education, and Action

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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


This article first appeared in Progress in Community Health Partnerships: Research, Education, and Action, Volume 5, Issue 2, Summer 2011, pages 143-150.



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