Brief Report: A Survey of Autism Research Priorities Across a Diverse Community of Stakeholders
Abstract
Inclusion of stakeholder voices in the allocation of research funding can increase the relevance of results and improve community engagement in research. We describe the results of an online survey that gathered input from community stakeholders regarding autism research priorities. A demographically diverse sample of respondents (N = 6004; 79.1% female; 72.5% ages 30-59; 86.4% USA) completed the survey. Results indicated a preference for applied relative to basic science topics, though both basic and applied science areas were rated as important. Respondents gave their highest ratings to research focused on co-occurring conditions, health and well-being, adult transition, and lifespan issues. These results can guide decision-making by public and private funders when developing science funding priorities and engaging in science dissemination activities.
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A James Lind Alliance survey in 2018 by Autistica, and a similar large survey in North America, found that mental health was a top priority research area identified by autistic adults.
“A James Lind Alliance survey in 2018 by research charity Autistica, and a similar large survey of stakeholders in North America (Frazier et al, 2018), found that mental health was a top priority research area identified by autistic adults.”
From Annual Research Review: Looking back to look forward – changes in the concept of autism and implications for future research (2020) · cites this paper as Frazier et al, 2018
This focus is in sharp contrast to the stated research priorities of community members - autistic people, their family members, educators, clinicians and other professionals - who have consistently called for research on areas that are of more immediate, practical concern or for basic science research that may be more straightforwardly translated into applications.
“This focus is in sharp contrast to the stated research priorities of community members – autistic people, their family members, educators, clinicians and other professionals – who have consistently called for research on areas that are of more immediate, practical concern or for basic science research that may be more straightforwardly translated into applications (Frazier et al., 2018; Jose et al”
From Annual Research Review: Shifting from ‘normal science’ to neurodiversity in autism science (2022) · cites this paper as Frazier et al., 2018
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Neurogenetics of Autism Spectrum Conditions in Individuals Assigned Female at Birth
Jack, A., McQuaid, G. A., & Gupta, A. R. (2024) · Springer eBooks · doi:10.1007/978-3-031-62072-0_5 · Cited by 1 · see citing works
Describing Multidomain Health Outcomes in Autistic Children in the ECHO Program
Kaplan‐Kahn, E. A., Rando, J., Ames, J., Bekelman, T. A., Camargo, C. A., Croen, L., Dager, S. R., Dickerson, A. S., Dunlop, A. L., Elliott, A. J., et al. (2024) · JAACAP Open · doi:10.1016/j.jaacop.2024.05.005
Differentiation of autistic adults’ perceptions of research by gender: a mixed methods exploration
Wolpe, S., Tien, I. S., Lee, N., & Sozeri, S. (2025) · Advances in Autism · doi:10.1108/aia-03-2024-0021
Sugden, N., Barna, L. S., Foor, K., Kee, J., & Gunter, C. (2025) · Autism · doi:10.1177/13623613251365979
Dickson, K. S., Kennedy, S. M., Safer‐Lichtenstein, J., Brookman-Frazee, L. I., Roesch, S. C., & Anthony, L. G. (2025) · Implementation Science Communications · doi:10.1186/s43058-025-00799-6
Dwyer, P. (2025) · Psychological Inquiry · doi:10.1080/1047840x.2025.2605591
Matson, J. L. (2026) · Autism and child psychopathology series · doi:10.1007/978-3-032-11802-8_12
Brice, S., Petrou, A., Hamilton, J., McConachie, H., Couteur, A. S. L., Ingham, B., Wilson, C., Hardy, R., Berney, T., Mason, D., et al. (2026) · Research in Autism · doi:10.1016/j.reia.2026.202963
Gisbert-Gustemps, L., Martínez-Ramírez, M., Setién-Ramos, I., Restoy, D., Ramos-Quiroga, J., & Lugo-Marín, J. (2026) · Autism · doi:10.1177/13623613261483298
Evaluating Partnership Quality and Outcomes Within an Autism Community Collaborative
Hendrix, N. M., Ransom, L., Chatson, E., Zambrano, T., & Pickard, K. E. (2026) · Journal of Autism and Developmental Disorders · doi:10.1007/s10803-026-07512-z
Neurodiversity-Affirmative Psychoeducation: Co-creating Psychoeducation Through Community Materials
Plas, L. V. D., Tilkin-Franssens, E., Vannieuwenhuysen, L.-E., & Noens, I. L. J. (2026) · Springer eBooks · doi:10.1007/978-3-032-18034-6_15
- Authors
- Frazier, T. W., Dawson, G., Murray, D., Shih, A., Sachs, J. S., & Geiger, A.
- Affiliations
- Autism Speaks (US)
- Corresponding author
- Frazier, Thomas W.
- Venue
- Journal of Autism and Developmental Disorders
- Published
- 2018-06-15
- Volume
- 48
- Issue
- 11
- Pages
- 3965-3971
- ISSN
- 0162-3257 (ISSN-L)
- 1573-3432
- OpenAlex
- W2807852720
- Cited by
- 97
- References
- 12
- Citations by year
- 2026: 9 · 2025: 10 · 2024: 23 · 2023: 21 · 2022: 6 · 2021: 7 · 2020: 14 · 2019: 5 · 2018: 2
- FWCI
- 4.10
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Journal of Autism and Developmental Disorders (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Life Sciences › Neuroscience › Cognitive Neuroscience › Autism Spectrum Disorder Research
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Social Sciences › Psychology › Clinical Psychology › Family and Disability Support Research
- Keywords
- stakeholder engagement, research funding allocation, co-occurring conditions, adult transition, health and well-being, science dissemination, community-engaged research
- MeSH terms
- Stakeholder Participation, Adult, Attitude, Autistic Disorder, Female, Humans, Male, Middle Aged, Biomedical Research
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
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