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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.


Copyright 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. Supported in part by the National Institute of Mental Health grant (K23MH073008), Portland State University, Oregon Health and Science University, and the Oregon Clinical and Translational Research Institute (OCTRI), grant number UL1 RR024140 from the National Center for Research Resources (NCRR), a component of the National Institutes of Health (NIH) and NIH Roadmap for Medical Research.

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