‘Nothing About Us, Without Us’: Research Priorities for Autistic Girls, Women and Gender Diverse People in Australia

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Grove, R., Clapham, H., Moodie, T., Gurrin, S., & Hall, G. (2024). ‘Nothing About Us, Without Us’: Research Priorities for Autistic Girls, Women and Gender Diverse People in Australia. Journal of Autism and Developmental Disorders, 55(7), 2522-2538. https://doi.org/10.1007/s10803-024-06330-5

Publication date: 6 May 2024 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
5
Publication authors identified as autistic
4 / 5 (80.0%)
  1. Rachel Grove
  2. Hayley Clapham *
  3. Tess Moodie *
  4. Sarah Gurrin *
  5. Gabrielle Hall *

Abstract

Autistic girls, women and gender diverse people have specific needs that are underrepresented in research. Research priorities are often established by funding bodies, researchers, parents, carers and health professionals and may not meet the needs of the diverse Autistic community. This co-produced project aimed to identify what research would benefit the lives of Autistic girls, women and gender diverse people in Australia. We interviewed 47 Autistic girls, women and gender diverse people aged seven and above and obtained feedback from an additional 411 Autistic people through an online survey. Autistic young people identified six key research priorities including (1) better understanding and support at school, (2) understanding our experiences, strengths and challenges, (3) autism specific mental health support, (4) Autistic friendships and relationships, (5) experiences of gender diversity and (6) accommodations to make life easier for us. Eight key research priority areas were identified by Autistic adults including (1) understanding and supporting specific needs in adulthood, (2) experiences of trauma, abuse and sexual violence, (3) supporting mental health and wellbeing, (4) addressing barriers in healthcare, (5) understanding and supporting physical health needs, (6) addressing barriers in education and the workplace, (7) understanding the role of society, embracing neurodiversity and the importance of Autistic identity and (8) co-designing research and supports with Autistic people. We provide a discussion around the importance of focusing on these research priority areas in future autism research in Australia.

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
52
Total cited references integrated for this publication.
Cited references with an identified autistic author
11 / 52 (21.2%)
Cited author occurrences identified as autistic
16 / 164 (9.8%)
Among occurrences linked to AutiHub author records: 16 / 98 (16.3%). Distinct cited authors identified as autistic: 10 / 142 (7.0%).
Cited author occurrences linked to AutiHub author records
98 / 164 (59.8%)
Distinct linked cited authors: 76 / 142 (53.5%)
Linked cited-author occurrences not identified as autistic
82 / 98 (83.7%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 82 / 164 (50.0%). Distinct linked cited authors not identified as autistic: 66 / 76 (86.8%).
  1. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Type: Article DOI: 10.1191/1478088706qp063oa OpenAlex: https://openalex.org/W1979290264
    Crossref OpenAlex OpenCitations
  2. Australian Institute of Health and Welfare (2021). Australia’s youth: Mental illness. https://www.aihw.gov.au/reports/children-youth/mental-illness#references
    Type: Other
    Crossref
  3. Yunhe Huang , Samuel R. C. Arnold , Kitty‐Rose Foley , Julian N Trollor (2020). Diagnosis of autism in adulthood: A scoping review . Autism, 24(6), 1311-1327. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320903128 OpenAlex: https://openalex.org/W3008810253
    Crossref OpenAlex OpenCitations
  5. Australian Bureau of Statistics (2020). National Study of Mental Health and Wellbeing. ABS. https://www.abs.gov.au/statistics/health/mental-health/national-study-mental-health-and-wellbeing/latest-release
    Type: Other
    Crossref
  7. Kenneth R. McLeroy , Daniel Bibeau , Allan Steckler , Karen Glanz (1988). An Ecological Perspective on Health Promotion Programs . Health Education Quarterly, 15(4), 351-377. SAGE Publications.
    Type: Article DOI: 10.1177/109019818801500401 OpenAlex: https://openalex.org/W2158089900
    Crossref OpenAlex OpenCitations
  8. Australian Autism Research Council (2021). Australian Autism Research Council: 2020-21 research priority update.
    Type: Other
    Crossref
  9. Michael Oliver (1983). Social Work with Disabled People . Macmillan Education UK.
    Type: Book DOI: 10.1007/978-1-349-86058-6 OpenAlex: https://openalex.org/W4299557921
    Crossref OpenAlex OpenCitations
  10. Adam F. Yerke , Jennifer DeFeo (2016). Redefining Intimate Partner Violence Beyond the Binary to Include Transgender People . Journal of Family Violence, 31(8), 975-979. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10896-016-9887-y OpenAlex: https://openalex.org/W2529309771
    Crossref OpenAlex OpenCitations
  11. Australian Autism Research Council (2019). Research Priorities. https://www.autismcrc.com.au/aarc
    Type: Other
    Crossref
  13. Monique Botha * , Bridget Dibb , David M. Frost (2021). “It’s being a part of a grand tradition, a grand counter-culture which involves communities”: A qualitative investigation of autistic community connectedness . Center for Open Science.
    Type: Preprint DOI: 10.31219/osf.io/atd69 OpenAlex: https://openalex.org/W4231625652
    Crossref OpenAlex OpenCitations
  14. Ami Tint , Hannah Chung , Meng-Chuan Lai , Robert Balogh , Elizabeth Lin , Anna Durbin et al. (2023). Health conditions and service use of autistic women and men: A retrospective population-based case–control study . Autism, 27(6), 1641-1657. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221144353 OpenAlex: https://openalex.org/W4313424008
    Crossref OpenAlex OpenCitations
  15. Laura Foran Lewis (2017). A Mixed Methods Study of Barriers to Formal Diagnosis of Autism Spectrum Disorder in Adults . Journal of Autism and Developmental Disorders, 47(8), 2410-2424. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3168-3 OpenAlex: https://openalex.org/W2615871753
    Crossref OpenAlex OpenCitations
  16. Rita George , Mark A. Stokes (2018). A Quantitative Analysis of Mental Health Among Sexual and Gender Minority Groups in ASD . Journal of Autism and Developmental Disorders, 48(6), 2052-2063. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3469-1 OpenAlex: https://openalex.org/W2785158416
    Crossref OpenAlex OpenCitations
  17. Virginia Braun , Victoria Clarke (2019). Reflecting on reflexive thematic analysis . Qualitative Research in Sport, Exercise and Health, 11(4), 589-597. Informa UK Limited.
    Type: Article DOI: 10.1080/2159676x.2019.1628806 OpenAlex: https://openalex.org/W2950504429
    Crossref OpenAlex OpenCitations
  18. Thomas Frazier , Géraldine Dawson , Donna S. Murray , Andy Shih , Jessica Snyder Sachs , Angela Geiger (2018). Brief Report: A Survey of Autism Research Priorities Across a Diverse Community of Stakeholders . Journal of Autism and Developmental Disorders, 48(11), 3965-3971. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-018-3642-6 OpenAlex: https://openalex.org/W2807852720
    AutiHub · Documentation center Crossref OpenAlex OpenCitations
  19. Bronfenbrenner, U. (1989). Ecological systems theory. In R. Vasta (Ed.), Annals of Child Development (pp. 187–249). Jessica Kingsley.
    Type: Other
    Crossref
  20. Jacquiline den Houting * (2019). Neurodiversity: An insider’s perspective . Autism, 23(2), 271-273. SAGE Publications.
    Type: Article DOI: 10.1177/1362361318820762 OpenAlex: https://openalex.org/W2905135405
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  22. Callander, D., Wiggins, J., Rosenberg, S., Cornelisse, V. J., Duck-Chong, E., Holt, M., Pony, M., Vlahakis, E., MacGibbon, J., & Cook, T. (2019). The 2018 Australian Trans and Gender Diverse Sexual Health Survey: Report of Findings.
    Type: Other
    Crossref
  23. Elisabeth Garratt , Jan Flaherty (2023). ‘There’s nothing I can do to stop it’: homelessness among autistic people in a British city . Disability & Society, 38(9), 1558-1584. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2021.2004881 OpenAlex: https://openalex.org/W3216208737
    Crossref OpenAlex OpenCitations
  24. Jacquiline den Houting * , Elizabeth Pellicano (2019). A Portfolio Analysis of Autism Research Funding in Australia, 2008–2017 . Journal of Autism and Developmental Disorders, 49(11), 4400-4408. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-019-04155-1 OpenAlex: https://openalex.org/W2966196890
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  25. Fabienne Cazalis , Elisabeth Reyes , Séverine Leduc , David Gourion (2022). Evidence That Nine Autistic Women Out of Ten Have Been Victims of Sexual Violence . Frontiers in Behavioral Neuroscience, 16, 852203-852203. Frontiers Media SA.
    Type: Article DOI: 10.3389/fnbeh.2022.852203 OpenAlex: https://openalex.org/W4225009262
    Crossref OpenAlex OpenCitations
  26. Blythe A. Corbett , Rachael A Muscatello , Mark E Klemencic , Millicent West , Ahra Kim , John F. Strang (2023). Greater gender diversity among autistic children by self-report and parent-report . Autism, 27(1), 158-172. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221085337 OpenAlex: https://openalex.org/W4220850985
    Crossref OpenAlex OpenCitations
  27. Anna Wallisch , Brian A. Boyd , Jean P. Hall , Noelle K. Kurth , Carl G. Streed Jr , Abigail Mulcahy et al. (2023). Health Care Disparities Among Autistic LGBTQ+ People . Autism in Adulthood, 5(2), 165-174. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2022.0006 OpenAlex: https://openalex.org/W4321783387
    Crossref OpenAlex OpenCitations
  28. Rosalind Cooper , Kate Cooper , Ailsa Russell , Laura G. E. Smith (2021). “I’m Proud to be a Little Bit Different”: The Effects of Autistic Individuals’ Perceptions of Autism and Autism Social Identity on Their Collective Self-esteem . Journal of Autism and Developmental Disorders, 51(2), 704-714. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-020-04575-4 OpenAlex: https://openalex.org/W3036418460
    Crossref OpenAlex OpenCitations
  29. Nicholas Chown * , Luke Beardon , Shona Louise Murphy , Elsa Suckle , Joanna Baker-Rogers (2023). Autism Community Research Priorities: The Potential of Future Research to Benefit Autistics . Canadian Journal of Educational and Social Studies, 3(2), 15. MATIS Translation Services.
    Type: Article DOI: 10.53103/cjess.v3i2.118 OpenAlex: https://openalex.org/W4362686181
    Crossref OpenAlex OpenCitations
  30. Amy Kim (2021). Intersectionality, The Social Model of Disability, and Identity . Canadian Journal of Autism Equity, 1(1), 28-31. McMaster University Library.
    Type: Article DOI: 10.15173/cjae.v1i1.4990 OpenAlex: https://openalex.org/W3212382218
    Crossref OpenAlex OpenCitations
  31. Caroline Kassee , Stephanie Babinski , Ami Tint , Yona Lunsky , Hilary K. Brown , Stephanie H. Ameis et al. (2020). Physical health of autistic girls and women: a scoping review . Molecular Autism, 11(1), 84-84. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s13229-020-00380-z OpenAlex: https://openalex.org/W3094995723
    Crossref OpenAlex OpenCitations
  32. Clark, T., Pellicano, L., Haas, K., Gibbs, V., Robinson, A., Al Ansari, M., Merrington, H., Gallagher, E., & Kuzma, T. (2022). Research Priorities and Agenda: What matters to Autistic people, so they can lead a good life?.
    Type: Other
    Crossref
  33. Penelope Strauss , Angus Cook , Vanessa Watson , Sam Winter , Andrew Whitehouse , Nicole Albrecht et al. (2021). Mental health difficulties among trans and gender diverse young people with an autism spectrum disorder (ASD): Findings from Trans Pathways . Journal of Psychiatric Research, 137, 360-367. Elsevier BV.
    Type: Article DOI: 10.1016/j.jpsychires.2021.03.005 OpenAlex: https://openalex.org/W3138305906
    Crossref OpenAlex OpenCitations
  34. Vicki Gibbs , Jennie Hudson , Ye In Hwang , Samuel R. C. Arnold , Julian N Trollor , Elizabeth Pellicano (2021). Experiences of physical and sexual violence as reported by autistic adults without intellectual disability: Rate, gender patterns and clinical correlates . Research in Autism Spectrum Disorders, 89, 101866. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2021.101866 OpenAlex: https://openalex.org/W3204452424
    Crossref OpenAlex OpenCitations
  36. Cusack, J., & Sterry, R. (2016). Your questions: Shaping future autism research.
    Type: Other
    Crossref
  38. den Houting, J. (2021). Participatory and Inclusive Autism Research Practice Guides.
    Type: Other
    Crossref
  41. Laura Graham Holmes , Jennifer Ames , Maria L Massolo , Denise M. Nunez , Lisa A. Croen (2022). Improving the Sexual and Reproductive Health and Health Care of Autistic People . Pediatrics, 149(Supplement 4). American Academy of Pediatrics (AAP).
    Type: Article DOI: 10.1542/peds.2020-049437j OpenAlex: https://openalex.org/W4223987997
    Crossref OpenAlex OpenCitations
  42. Kinga Ferenc , Mateusz Płatos , Katarzyna Byrka , Magdalena Ewa Król (2023). Looking through rainbow-rimmed glasses: Taking neurodiversity perspective is related to subjective well-being of autistic adults . Autism, 27(5), 1348-1361. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221135818 OpenAlex: https://openalex.org/W4308957609
    Crossref OpenAlex OpenCitations
  43. Katherine Gore , Susan Hayward , Rebecca L. Flower , Melissa Gilbert , Josephine Barbaro (2024). “Maybe No One Knows We Need Help”: Understanding the Experiences of Autistic Working Mothers in Australia . Autism in Adulthood, 6(1), 47-59. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2022.0089 OpenAlex: https://openalex.org/W4376637938
    Crossref OpenAlex OpenCitations
  44. Gatfield, O., Mangan, M. C., Haar, M. T., Kinniburgh, M. A., & Rodger, S. (2016). Autism Research Priorities Survey Report.
    Type: Other
    Crossref
  45. Vicki Gibbs , Elizabeth Pellicano (2023). ‘Maybe we just seem like easy targets’: A qualitative analysis of autistic adults’ experiences of interpersonal violence . Autism, 27(7), 2021-2034. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221150375 OpenAlex: https://openalex.org/W4317868786
    Crossref OpenAlex OpenCitations
  46. Meredith R. Maroney , Sharon G. Horne (2022). “Tuned into a different channel”: Autistic transgender adults’ experiences of intersectional stigma. Journal of Counseling Psychology, 69(6), 761-774. American Psychological Association (APA).
    Type: Article DOI: 10.1037/cou0000639 OpenAlex: https://openalex.org/W4294128129
    Crossref OpenAlex OpenCitations
  47. Grove, R., Clapham, H., Moodie, T., Hall, G., & Gurrin, S. (2022). Research priorities for autistic girls, women and gender diverse people in Australia. University of Technology Sydney. https://www.uts.edu.au/autistic-women-and-girls-research-priorities
    Type: Other
    Crossref
  48. Hill, A. O., Bourne, A., McNair, R., Carman, M., & Lyons, A. (2020). Private Lives 3: The health and wellbeing of LGBTIQ people in Australia (ARCSHS Monograph Series No. 122., Issue.
    Type: Other
    Crossref
  49. Denton Callander , Jeremy Wiggins , Shoshana Rosenberg , Vincent Cornelisse , Liz Duck-Chong , Martin Holt et al. (2019). The 2018 Australian Trans and Gender Diverse Sexual Health Survey: Report of Findings . Open MIND. Unpublished.
    Type: Article DOI: 10.13140/rg.2.2.15975.68005 OpenAlex: https://openalex.org/W6885025282
    OpenAlex
  50. Reframing Autism (2021). Annual Report.
    Type: Other
    Crossref
  51. United Nations Office of the High Commissioner for Human Rights (2023). The struggle of trans and gender-diverse persons: Independent Expert on sexual orientation and gender identity. United Nations. https://www.ohchr.org/en/special-procedures/ie-sexual-orientation-and-gender-identity/struggle-trans-and-gender-diverse-persons
    Type: Other
    Crossref
  52. Victorian Government (2021). LGBTIQ + Inclusive Language Guide. https://www.vic.gov.au/inclusive-language-guide
    Type: Other
    Crossref