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

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Nicolaidis, C., Raymaker, D. M., McDonald, K., Dern, S., Ashkenazy, E., Boisclair, W. C., Robertson, S., & Baggs, A. (2011). Collaboration Strategies in Nontraditional Community-Based Participatory Research Partnerships: Lessons From an Academic–Community Partnership With Autistic Self-Advocates. Progress in Community Health Partnerships: Research, Education, and Action, 5(2), 143-150. https://doi.org/10.1353/cpr.2011.0022

Publication date: 1 Jun 2011 Added to AutiHub: 4 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
8
Publication authors identified as autistic
4 / 8 (50.0%)
  1. Christina Nicolaidis
  2. Dora M Raymaker *
  3. Katherine McDonald
  4. Sebastian Dern
  1. Elesia Ashkenazy *
  2. W. Cody Boisclair *
  3. Scott Robertson *
  4. Amanda Baggs

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.

Bibliography cited by this reference

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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
60
Total cited references integrated for this publication.
Cited references with an identified autistic author
2 / 60 (3.3%)
Cited author occurrences identified as autistic
3 / 86 (3.5%)
Among occurrences linked to AutiHub author records: 3 / 8 (37.5%). Distinct cited authors identified as autistic: 3 / 81 (3.7%).
Cited author occurrences linked to AutiHub author records
8 / 86 (9.3%)
Distinct linked cited authors: 8 / 81 (9.9%)
Linked cited-author occurrences not identified as autistic
5 / 8 (62.5%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 5 / 86 (5.8%). Distinct linked cited authors not identified as autistic: 5 / 8 (62.5%).
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