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. 2020 May;24(4):822-833.
doi: 10.1177/1362361320908410.

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

Teal W Benevides  1 , Stephen M Shore  2 , Kate Palmer  3 , Patricia Duncan  3 , Alex Plank  3 , May-Lynn Andresen  4 , Reid Caplan  3 , Barb Cook  5 , Dena Gassner  2 , Becca Lory Hector  3 , Lisa Morgan  3 , Lindsey Nebeker  3 , Yenn Purkis  3 , Brigid Rankowski  6 , Karl Wittig  3 , Steven S Coughlin  1
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Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project

Teal W Benevides et al. Autism. 2020 May.

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.

Keywords: autism; autistic; mental health; mental health outcomes; participatory action research; priorities; stakeholder.

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Conflict of interest statement

Declaration of conflicting interests: The author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: The authors declare that the funder did not play a role in the design, data analysis, or interpretation of this study. The grant program officer participated in the Year 2 meeting as a panelist, but did not participate in the implementation or analyses of any project activity, nor did Patient-Centered Outcomes Research Institute (PCORI) or the grant officer participate in the interpretation of the data.

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