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

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Benevides, T., 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

Publication date: 1 May 2020 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
OpenAlex source Publisher source (DOI) Full text

This publication is integrated into AutiHub through:

Authors

Publication authors
16
Publication authors identified as autistic
4 / 16 (25.0%)
  1. Teal Benevides
  2. Stephen M. 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 (Jeanette) 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.

Bibliography inclusion overview

These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
36
Total cited references integrated for this publication.
Cited references with an identified autistic author
2 / 36 (5.6%)
Cited author occurrences identified as autistic
6 / 160 (3.8%)
Among occurrences linked to AutiHub author records: 6 / 52 (11.5%). Distinct cited authors identified as autistic: 6 / 154 (3.9%).
Cited author occurrences linked to AutiHub author records
52 / 160 (32.5%)
Distinct linked cited authors: 47 / 154 (30.5%)
Linked cited-author occurrences not identified as autistic
46 / 52 (88.5%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 46 / 160 (28.7%). Distinct linked cited authors not identified as autistic: 41 / 47 (87.2%).
  1. Jonathan A. Weiss , M. Catherine Cappadocia , Ami Tint , Debra Pepler (2015). Bullying Victimization, Parenting Stress, and Anxiety among Adolescents and Young Adults with Autism Spectrum Disorder . Autism Research, 8(6), 727-737. Wiley.
    Type: Article DOI: 10.1002/aur.1488 OpenAlex: https://openalex.org/W1832487201
    Crossref OpenAlex OpenCitations
  2. Adi Aran , Hanoch Cassuto , Asael Lubotzky , Nadia Wattad , Esther Hazan (2019). Brief Report: Cannabidiol-Rich Cannabis in Children with Autism Spectrum Disorder and Severe Behavioral Problems—A Retrospective Feasibility Study . Journal of Autism and Developmental Disorders, 49(3), 1284-1288. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3808-2 OpenAlex: https://openalex.org/W2899228386
    Crossref OpenAlex OpenCitations
  3. Gary M Cooney , Kerry Dwan , Carolyn A Greig , Debbie A Lawlor , Jane Rimer , Fiona R Waugh et al. (2013). Exercise for depression . Cochrane Database of Systematic Reviews, 2013(9), CD004366-CD004366. Wiley.
    Type: Article DOI: 10.1002/14651858.cd004366.pub6 OpenAlex: https://openalex.org/W2995753449
    Crossref OpenAlex OpenCitations
  4. Ailsa Russell , Amita Jassi , Miguel A. Fullana , Hilary Mack , Kate Johnston , Isobel Heyman et al. (2013). COGNITIVE BEHAVIOR THERAPY FOR COMORBID OBSESSIVE-COMPULSIVE DISORDER IN HIGH-FUNCTIONING AUTISM SPECTRUM DISORDERS: A RANDOMIZED CONTROLLED TRIAL . Depression and Anxiety, 30(8), 697-708. Hindawi Limited.
    Type: Article DOI: 10.1002/da.22053 OpenAlex: https://openalex.org/W1896892849
    Crossref OpenAlex OpenCitations
  5. Lauren Bishop-Fitzpatrick , Carla A. Mazefsky , Shaun M Eack (2018). The combined impact of social support and perceived stress on quality of life in adults with autism spectrum disorder and without intellectual disability . Autism, 22(6), 703-711. SAGE Publications.
    Type: Article DOI: 10.1177/1362361317703090 OpenAlex: https://openalex.org/W2733243365
    Crossref OpenAlex OpenCitations
  6. Gagan Joshi , Janet Wozniak , Carter Petty , Mary Kate Martelon , Ronna Fried , Anela Bolfek et al. (2013). Psychiatric Comorbidity and Functioning in a Clinically Referred Population of Adults with Autism Spectrum Disorders: A Comparative Study . Journal of Autism and Developmental Disorders, 43(6), 1314-1325. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-012-1679-5 OpenAlex: https://openalex.org/W1993632475
    Crossref OpenAlex OpenCitations
  7. Katherine Gotham , Alison R Marvin , Julie Lounds Taylor , Zachary Warren , Connie M Anderson , Paul A Law et al. (2015). Characterizing the daily life, needs, and priorities of adults with autism spectrum disorder from Interactive Autism Network data . Autism, 19(7), 794-804. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315583818 OpenAlex: https://openalex.org/W1927816754
    Crossref OpenAlex OpenCitations
  8. Eilidh Cage , Jessica Di Monaco , Victoria Newell (2018). Experiences of Autism Acceptance and Mental Health in Autistic Adults . Journal of Autism and Developmental Disorders, 48(2), 473-484. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3342-7 OpenAlex: https://openalex.org/W2766434912
    Crossref OpenAlex OpenCitations
  9. Melanie G. Jones , Simon M. Rice , Susan M. Cotton (2019). Incorporating animal-assisted therapy in mental health treatments for adolescents: A systematic review of canine assisted psychotherapy . PLOS ONE, 14(1), e0210761. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pone.0210761 OpenAlex: https://openalex.org/W2909527518
    Crossref OpenAlex OpenCitations
  10. Annelies A. Spek , Nadia C. van Ham , Ivan Nyklíček (2013). Mindfulness-based therapy in adults with an autism spectrum disorder: A randomized controlled trial . Research in Developmental Disabilities, 34(1), 246-253. Elsevier BV.
    Type: Article DOI: 10.1016/j.ridd.2012.08.009 OpenAlex: https://openalex.org/W1964450263
    Crossref OpenAlex OpenCitations
  11. Eilidh Cage , Zoe Troxell-Whitman (2019). Understanding the Reasons, Contexts and Costs of Camouflaging for Autistic Adults . Journal of Autism and Developmental Disorders, 49(5), 1899-1911. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-03878-x OpenAlex: https://openalex.org/W2909219349
    Crossref OpenAlex OpenCitations
  12. Bram B. Sizoo , Erik Kuiper (2017). Cognitive behavioural therapy and mindfulness based stress reduction may be equally effective in reducing anxiety and depression in adults with autism spectrum disorders . Research in Developmental Disabilities, 64, 47-55. Elsevier BV.
    Type: Article DOI: 10.1016/j.ridd.2017.03.004 OpenAlex: https://openalex.org/W2601014375
    Crossref OpenAlex OpenCitations
  13. Paul R. Sterzing , Paul Shattuck , Sarah C. Narendorf , Mary Wagner , Benjamin P. Cooper (2012). Bullying Involvement and Autism Spectrum Disorders . Archives of Pediatrics & Adolescent Medicine, 166(11), 1058. American Medical Association (AMA).
    Type: Article DOI: 10.1001/archpediatrics.2012.790 OpenAlex: https://openalex.org/W1968761390
    Crossref OpenAlex OpenCitations
  14. Qizheng Cai , Lei Feng , Kai Zhen Yap (2018). Systematic review and meta‐analysis of reported adverse events of long‐term intranasal oxytocin treatment for autism spectrum disorder . Psychiatry and Clinical Neurosciences, 72(3), 140-151. Wiley.
    Type: Article DOI: 10.1111/pcn.12627 OpenAlex: https://openalex.org/W2775424805
    Crossref OpenAlex OpenCitations
  15. So Yoon Kim (2019). The experiences of adults with autism spectrum disorder: Self-determination and quality of life . Research in Autism Spectrum Disorders, 60, 1-15. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2018.12.002 OpenAlex: https://openalex.org/W2910526802
    Crossref OpenAlex OpenCitations
  16. Sarah Cassidy , Louise Bradley , Rebecca Shaw , Simon Baron-Cohen (2018). Risk markers for suicidality in autistic adults . Molecular Autism, 9(1), 42. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-018-0226-4 OpenAlex: https://openalex.org/W2887488849
    Crossref OpenAlex OpenCitations
  17. Judith Hebron , Jeremy Oldfield , Neil Humphrey (2017). Cumulative risk effects in the bullying of children and young people with autism spectrum conditions . Autism, 21(3), 291-300. SAGE Publications.
    Type: Article DOI: 10.1177/1362361316636761 OpenAlex: https://openalex.org/W2338682775
    Crossref OpenAlex OpenCitations
  18. Connor M. Kerns , Craig J. Newschaffer , Steven J. Berkowitz (2015). Traumatic Childhood Events and Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 45(11), 3475-3486. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-015-2392-y OpenAlex: https://openalex.org/W2081445626
    Crossref OpenAlex OpenCitations
  19. (n.d.). Cassidy S. A., Robertson A., Cogger-Ward H., Goodwin J., Rodgers J. (unpublished). Autism community priorities for suicide prevention. https://sites.google.com/view/mentalhealthinautism/projects/insar-policy-briefing?authuser=0 (accessed 13 January 2020).
    Type: Other
    Crossref
  20. Lisa A. Croen , Ousseny Zerbo , Yinge Qian , Maria L Massolo , Steve Rich , Stephen Sidney et al. (2015). The health status of adults on the autism spectrum . Autism, 19(7), 814-823. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315577517 OpenAlex: https://openalex.org/W2108322879
    Crossref OpenAlex OpenCitations
  22. Eva Hesselmark , Stephanie Plenty , Susanne Bejerot (2014). Group cognitive behavioural therapy and group recreational activity for adults with autism spectrum disorders: A preliminary randomized controlled trial . Autism, 18(6), 672-683. SAGE Publications.
    Type: Article DOI: 10.1177/1362361313493681 OpenAlex: https://openalex.org/W2111548096
    Crossref OpenAlex OpenCitations
  23. Laura Crane , Fern Adams , Georgia Harper , Jack Welch , Elizabeth Pellicano (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England . Autism, 23(2), 477-493. SAGE Publications.
    Type: Article DOI: 10.1177/1362361318757048 OpenAlex: https://openalex.org/W2787370458
    Crossref OpenAlex OpenCitations
  24. Matthew J Hollocks , Jian Wei Lerh , Iliana Magiati , Richard Meiser-Stedman , Traolach Brugha (2019). Anxiety and depression in adults with autism spectrum disorder: a systematic review and meta-analysis . Psychological Medicine, 49(4), 559-572. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s0033291718002283 OpenAlex: https://openalex.org/W2889987209
    Crossref OpenAlex OpenCitations
  25. Nirit Karni-Vizer , Mark S. Salzer (2016). Verbal violence experiences of adults with serious mental illnesses. Psychiatric Rehabilitation Journal, 39(4), 299-304. American Psychological Association (APA).
    Type: Article DOI: 10.1037/prj0000214 OpenAlex: https://openalex.org/W2510092420
    Crossref OpenAlex OpenCitations
  26. Barbara FC van Heijst , Hilde M. Geurts (2015). Quality of life in autism across the lifespan: A meta-analysis . Autism, 19(2), 158-167. SAGE Publications.
    Type: Article DOI: 10.1177/1362361313517053 OpenAlex: https://openalex.org/W2150681219
    Crossref OpenAlex OpenCitations
  27. (n.d.). Cusack J., Sterry R. (2019, December). Autistica’s top 10 research priorities. https://www.autistica.org.uk/downloads/files/Autism-Top-10-Your-Priorities-for-Autism-Research.pdf
    Type: Other
    Crossref
  30. Ailsa Russell , Clodagh M Murphy , Ellie Wilson , Nicola Gillan , Cordelia Brown , Dene M Robertson et al. (2016). The mental health of individuals referred for assessment of autism spectrum disorder in adulthood: A clinic report . Autism, 20(5), 623-627. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315604271 OpenAlex: https://openalex.org/W2255438920
    Crossref OpenAlex OpenCitations
  31. Anne M. Roux , Paul Shattuck , Jessica E. Rast , Kristy A. Anderson (2017). National Autism Indicators Report: Developmental Disability Services and Outcomes in Adult . A.J. Drexel Autism Institute.
    Type: Report DOI: 10.17918/nairdevelopdisability2017 OpenAlex: https://openalex.org/W4320302945
    Crossref OpenAlex OpenCitations
  32. Shin Ho Park , Yun Ju C Song , Eleni A Demetriou , Karen L Pepper , Alice Norton , Emma E Thomas et al. (2019). Disability, functioning, and quality of life among treatment-seeking young autistic adults and its relation to depression, anxiety, and stress . Autism, 23(7), 1675-1686. SAGE Publications.
    Type: Article DOI: 10.1177/1362361318823925 OpenAlex: https://openalex.org/W2911184325
    Crossref OpenAlex OpenCitations
  34. Lihi Bar-Lev Schleider , Raphael Mechoulam , Naama Saban , Gal Meiri , Victor Novack (2019). Real life Experience of Medical Cannabis Treatment in Autism: Analysis of Safety and Efficacy . Scientific Reports, 9(1), 200-200. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/s41598-018-37570-y OpenAlex: https://openalex.org/W2910459199
    Crossref OpenAlex OpenCitations
  35. Saldana J. (2015). The coding manual for qualitative researchers . The coding manual for qualitative researchers.
    Type: Other
    Crossref
  36. Yee S. (2016). National Academies of Sciences, Engineering and Medicine Commissioned Paper presented at the Roundtable workshop on the Intersections Among Health Disparities, Health Equity, and Health Literacy . National Academies of Sciences, Engineering and Medicine Commissioned Paper presented at the Roundtable workshop on the Intersections Among Health Disparities, Health Equity, and Health Literacy.
    Type: Other
    Crossref