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

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

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...

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Bibliographic Details
Published in:Autism : the international journal of research and practice Vol. 24; no. 4; pp. 822 - 833
Main Authors: Benevides, Teal W, Shore, Stephen M, Palmer, Kate, Duncan, Patricia, Plank, Alex, Andresen, May-Lynn, Caplan, Reid, Cook, Barb, Gassner, Dena, Hector, Becca Lory, Morgan, Lisa, Nebeker, Lindsey, Purkis, Yenn, Rankowski, Brigid, Wittig, Karl, Coughlin, Steven S
Format: Journal Article
Language:English
Published: London, England SAGE Publications 01-05-2020
SAGE PUBLICATIONS, INC
Subjects:
Action Research
Adults
Anxiety
Autism
Autistic adults
Clinical outcomes
College professors
Comorbidity
Focus groups
Gorillas
Health Needs
Health research
Health services
Health status
Intervention
Listening
Measurement
Medical research
Mental depression
Mental Disorders
Mental Health
Mental Health Across the Lifespan
Mental health services
Participatory Research
Pervasive Developmental Disorders
Polls & surveys
Priorities
Quality of life
Research Design
Research Needs
Selfmanagement
Social well being
Stakeholders
Teams
Trauma
Well being
participatory action research
priorities
mental health
mental health outcomes
stakeholder
autistic
autism
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Summary: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.
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ISSN:1362-3613
1461-7005
DOI:10.1177/1362361320908410