Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project

This publication is included in the Autistic Autism Scholarship Project. 10 authors of this publication are identified as autistic in the project.

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Benevides, T. W., Shore, S. M., Palmer, K., Duncan, P., Plank, A., Andresen, M. L., Caplan, R., Cook, B., Gassner, D. L., Hector, B. L., Morgan, L., Nebeker, L., Purkis, Y., Rankowski, B., Wittig, K., & Coughlin, S. S. (2020). Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project. Autism, 24(4), 822-833. https://doi.org/10.1177/1362361320908410

Journal or book title
Autism
Publisher
SAGE Publications
Volume
24
Issue
4
Pages
822-833
Publication date: 1 May 2020 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
16
Publication authors identified as autistic
10 / 16 (62.5%)
  1. Teal W. Benevides
  2. Stephen Mark Shore *
  3. Kate Palmer
  4. Patricia Duncan
  5. Alex Plank *
  6. May-Lynn Andresen
  1. Reid Caplan *
  2. Barb Cook *
  3. Dena L. Gassner *
  4. Becca Lory Hector *
  5. Lisa Morgan *
  6. Lindsey Nebeker *
  1. Yenn Purkis *
  2. Brigid Rankowski *
  3. Karl Wittig
  4. Steven S. Coughlin

Abstract

Autistic adults are significantly more likely to experience co-occurring mental health conditions such as depression and anxiety. Although intervention studies are beginning to be implemented with autistic adults to address mental health outcomes, little is known about what research autistic adults feel is needed, or what mental health outcomes are of value to them. The purpose of this article is to describe a project that involved more than 350 autistic adults and other stakeholders as coproducers of research priorities on mental health. Through a variety of methods including a large online survey, two large stakeholder meetings, and three face-to-face focus groups, the project team identified five top priorities for mental health research which should be incorporated by researchers and practitioners in their work with autistic adults. These included research to inform trauma-informed care approaches; societal approaches for inclusion and acceptance of autistic individuals; community-available approaches for self-management of mental health; evaluation of adverse mental health outcomes of existing interventions; and improvements in measurement of quality of life, social well-being, and other preferred outcomes in autistic adults. Lay Abstract Autistic adults commonly experience mental health conditions. However, research rarely involves autistic adults in deciding priorities for research on mental healthcare approaches that might work for them. The purpose of this article is to describe a stakeholder-driven project that involved autistic adults in co-leading and designing research about priorities to address mental health needs. Through a large online survey, two large meetings, and three face-to-face focus group discussions involving over 350 stakeholders, we identified five priorities for mental health research desired by autistic adults. These priorities and preferred outcomes should be used to guide research and practice for autistic adults.

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 16:12.

Cited references
36
With a DOI
32
Without a DOI, from raw bibliography text
4
3 / 36 (8.3%) cited references include at least one author identified as autistic.
References with data to complete
2 / 36 (5.6%)
References with detected author names
34 / 36 (94.4%)
Without detected author names
2
Without a structured title
2
Without a stable identifier
4
References with raw author names still to review
2
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
160
From DOI or external metadata
160
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
7
63 / 160 (39.4%) names are linked to an author already present in AutiHub. 97 / 160 (60.6%) names are not yet linked.
Names linked to a person identified as autistic
10 / 160 (6.2%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 10 / 63 (15.9%). Distinct people identified as autistic: 10 / 154 (6.5%).
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