The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants

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Nicolaidis, C., Raymaker, D. M., Kapp, S. K., Baggs, A. E., Ashkenazy, E., McDonald, K., Weiner, M., Maslak, J., Hunter, M., & Joyce, A. (2019). The AASPIRE practice-based guidelines for the inclusion of autistic adults in research as co-researchers and study participants. Autism, 23(8), 2007-2019. https://doi.org/10.1177/1362361319830523

Publication date: 3 Apr 2019 Added to AutiHub: 4 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
10
Publication authors identified as autistic
5 / 10 (50.0%)
  1. Christina Nicolaidis
  2. Dora M Raymaker *
  3. Steven K. Kapp *
  4. Amelia E.V. Baggs
  5. Elesia Ashkenazy *
  1. Katherine McDonald
  2. Michael Weiner
  3. Joelle Maslak *
  4. Morrigan Hunter *
  5. Andrea Joyce

Abstract

As interest in autism in adulthood grows, so does the need for methods to promote the inclusion of autistic adults in research. Our objective was to create practice-based guidelines for the inclusion of autistic adults, both as research team members and as study participants. We conducted an institutional ethnography of three closely related research partnerships that used participatory methods with autistic adults over the years 2006-2018. We used an iterative approach which combined discussions with community and academic partners and artifact review. Guidelines to promote the inclusion of autistic adults as co-researchers focus on being transparent about partnership goals, clearly defining roles and choosing partners, creating processes for effective communication and power-sharing, building and maintaining trust, disseminating findings, encouraging community capacitation, and fairly compensating partners. Guidelines to promote the inclusion of autistic adults as study participants focus on maximizing autonomy and inclusion, creating an accessible consent process, offering multiple modes of participation, adapting survey instruments for use with autistic adults, creating accessible qualitative interview guides, and handling data from proxy reporters. Although these practice-based guidelines may not apply to all research teams, we hope that other researchers can capitalize on these practical lessons when including autistic adults in research.

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Cited references
47
Total cited references integrated for this publication.
Cited references with an identified autistic author
19 / 47 (40.4%)
Cited author occurrences identified as autistic
43 / 269 (16.0%)
Among occurrences linked to AutiHub author records: 43 / 178 (24.2%). Distinct cited authors identified as autistic: 10 / 136 (7.4%).
Cited author occurrences linked to AutiHub author records
178 / 269 (66.2%)
Distinct linked cited authors: 60 / 136 (44.1%)
Linked cited-author occurrences not identified as autistic
135 / 178 (75.8%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 135 / 269 (50.2%). Distinct linked cited authors not identified as autistic: 50 / 60 (83.3%).
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