Understanding the Use of Community Advisory Boards in Autism Research: A Scoping Review

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Janse van Rensburg, M., Niunin, E., Ostrolenk, A., Arsenault, S., Wilson, A., Weaver, C., Courchesne, V., & Hock, R. M. (2026). Understanding the Use of Community Advisory Boards in Autism Research: A Scoping Review. Review Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s40489-026-00590-w

Publication date: 10 Sep 2026 Added to AutiHub: 4 Oct 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
8
Publication authors identified as autistic
1 / 8 (12.5%)
  1. Margaret Janse van Rensburg
  2. Elisa Niunin
  3. Alexia Ostrolenk
  4. Sydney Arsenault
  1. Anja Wilson
  2. Courtney Weaver *
  3. Valérie Courchesne
  4. Robert M. Hock

Abstract

Abstract Community engagement is increasingly promoted as a good practice in autism research, yet little is known about how Community Advisory Boards are used. This scoping review mapped the extent and nature of empirical literature on Community Advisory Boards in autism research. Five databases were searched, supplemented by reference list searching. Twenty-two studies met inclusion criteria. Most were published recently, conducted in the United States, and used mixed methods. Community Advisory Boards were rarely formally defined and were typically described functionally rather than conceptually. Most operated in consultative roles, with inconsistent reporting of recruitment, compensation, onboarding, communication, and influence on decision-making. Findings suggest that use of Community Advisory Boards in autism research is expanding but remains conceptually and methodologically underdeveloped.

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: 23 Oct 2026 07:45.

Cited references
74
With a DOI
66
Without a DOI, from raw bibliography text
8
18 / 74 (24.3%) cited references include at least one author identified as autistic.
References with data to complete
9 / 74 (12.2%)
References with detected author names
67 / 74 (90.5%)
Without detected author names
7
Without a structured title
9
Without a stable identifier
8
References with raw author names still to review
7
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
475
From DOI or external metadata
475
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
12
196 / 475 (41.3%) names are linked to an author already present in AutiHub. 279 / 475 (58.7%) names are not yet linked.
Names linked to a person identified as autistic
54 / 475 (11.4%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 54 / 196 (27.6%). Distinct people identified as autistic: 50 / 446 (11.2%).
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