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

This publication is included in the Autistic Autism Scholarship Project. seven authors of this publication are identified as autistic in the project.

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Nicolaidis, C., Raymaker, D. M., Kapp, S. K., Baggs, M., 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
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
10
Publication authors identified as autistic
7 / 10 (70.0%)
  1. Christina Nicolaidis
  2. Dora M. Raymaker *
  3. Steven K. Kapp *
  4. Mel 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.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 2 Oct 2026 07:53.

Cited references
47
With a DOI
37
Without a DOI, from raw bibliography text
7
21 / 47 (44.7%) cited references include at least one author identified as autistic.
References with data to complete
4 / 47 (8.5%)
References with detected author names
44 / 47 (93.6%)
Without detected author names
3
Without a structured title
4
Without a stable identifier
7
References with raw author names still to review
3
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
269
From DOI or external metadata
269
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
3
185 / 269 (68.8%) names are linked to an author already present in AutiHub. 84 / 269 (31.2%) names are not yet linked.
Names linked to a person identified as autistic
54 / 269 (20.1%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 54 / 185 (29.2%). Distinct people identified as autistic: 15 / 135 (11.1%).
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