Participatory Research With Autistic Students in Higher Education: Experiences and Recommendations From Developing a Training Programme

This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.

About the autistic author marker

Metadata sources used for this reference

OpenAlex Crossref OpenCitations
Learn more about the sources used

Jenks, E., Selman, F., Harmens, M., Graham, R., Boon, S., Tran, T., Hobson, H., Eagle, S., & Sedgewick, F. (2025). Participatory Research With Autistic Students in Higher Education: Experiences and Recommendations From Developing a Training Programme. Journal of Participatory Research Methods, 6(3). https://doi.org/10.35844/001c.137307

Publication date: 21 Aug 2025 Added to AutiHub: 10 Sep 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
9
Publication authors identified as autistic
1 / 9 (11.1%)
  1. Emma Jenks
  2. Freya Selman
  3. Miriam Harmens
  4. Robert Graham
  5. Sarah Boon *
  1. Trang Tran
  2. Hannah Hobson
  3. Sarah Eagle
  4. Felicity Sedgewick

Abstract

Participatory approaches, which seek to involve affected community members in the research process, remain uncommon within autism research despite numerous potential advantages. The current work describes the process of co-designing autism training for university staff with an advisory group of autistic students and other stakeholders. The advisory group were involved in the project from the outset, including contributing to the funding application, training design, evaluation, and research dissemination. Here, we demonstrate the feasibility of participatory research in a higher education context, detail the approach taken, and provide recommendations for researchers seeking to undertake this kind of work. It is hoped that this example will encourage the uptake of similar practices in future projects.

Bibliography cited by this reference

Cited references are imported from external metadata sources when they are available. The list may be partial.

Cited bibliography overview

These indicators describe the bibliography cited by this publication. An author name is counted each time it appears in one cited reference, so the same person can be counted more than once. Names not yet linked to an author already present in AutiHub are treated as unknown, not as non-autistic. Last computed: 12 Sep 2026 17:55.

Cited references
48
With a DOI
47
Without a DOI, from raw bibliography text
1
19 / 48 (39.6%) cited references include at least one author identified as autistic.
References with data to complete
0 / 48 (0.0%)
References with detected author names
48 / 48 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
1
References with raw author names still to review
0
References with external metadata lookup issues
0
These indicators apply to cited references displayed on this page, after technical duplicates have been merged. A reference without a DOI can still support author statistics when a title and author names are available.
Author names detected in the cited bibliography
248
From DOI or external metadata
248
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
148 / 248 (59.7%) names are linked to an author already present in AutiHub. 100 / 248 (40.3%) names are not yet linked.
Names linked to a person identified as autistic
47 / 248 (19.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 47 / 148 (31.8%). Distinct people identified as autistic: 38 / 218 (17.4%).
  1. Ru Ying Cai , Amanda Richdale (2016). Educational Experiences and Needs of Higher Education Students with Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 46(1), 31-41. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-015-2535-1 OpenAlex: https://openalex.org/W1457101468
    Crossref OpenAlex OpenCitations
  2. Nura O. Aabe , Fiona Fox , Dheeraj Rai , Sabi Redwood (2019). Inside, outside and in‐between: The process and impact of co‐producing knowledge about autism in a UK Somali community . Health Expectations, 22(4), 752-760. Wiley.
    Type: Article DOI: 10.1111/hex.12939 OpenAlex: https://openalex.org/W2950932694
    Crossref OpenAlex OpenCitations
  3. Keren Coney (2023). Autistic students as partners in the design of tailored employability provision . Journal of Teaching and Learning for Graduate Employability, 14(2), 16-32. Deakin University.
    Type: Article DOI: 10.21153/jtlge2023vol14no2art1793 OpenAlex: https://openalex.org/W4387454928
    Crossref OpenAlex OpenCitations
  4. Barbara A. Israel , Edith A. Parker , Zachary Rowe , Alicia Salvatore , Meredith Minkler , Jesús López et al. (2005). Community-Based Participatory Research: Lessons Learned from the Centers for Children’s Environmental Health and Disease Prevention Research . Environmental Health Perspectives, 113(10), 1463-1471. American Chemical Society (ACS).
    Type: Article DOI: 10.1289/ehp.7675 OpenAlex: https://openalex.org/W1968759223
    Crossref OpenAlex OpenCitations
  5. González Moreno, Andrés Santiago (2013). Diagnostic and Statistical Manual of Mental Disorders . American Psychiatric Association.
    Type: Book DOI: 10.1176/appi.books.9780890425596 OpenAlex: https://openalex.org/W4247665917
    Crossref OpenAlex OpenCitations
  6. Sean A. Kidd , Michael J. Kral (2005). Practicing participatory action research. Journal of Counseling Psychology, 52(2), 187-195. American Psychological Association (APA).
    Type: Article DOI: 10.1037/0022-0167.52.2.187 OpenAlex: https://openalex.org/W2031193590
    Crossref OpenAlex OpenCitations
  7. Sofie Areljung , Lotta Leden , Jonna Wiblom (2021). Expanding the notion of ‘ownership’ in participatory research involving teachers and researchers . International Journal of Research & Method in Education, 44(5), 463-473. Informa UK Limited.
    Type: Article DOI: 10.1080/1743727x.2021.1892060 OpenAlex: https://openalex.org/W3133693787
    Crossref OpenAlex OpenCitations
  9. Valérie Van Hees , Tinneke Moyson , Herbert Roeyers (2015). Higher Education Experiences of Students with Autism Spectrum Disorder: Challenges, Benefits and Support Needs . Journal of Autism and Developmental Disorders, 45(6), 1673-1688. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-014-2324-2 OpenAlex: https://openalex.org/W2031696817
    Crossref OpenAlex OpenCitations
  10. Autism Rights Group Highland (n.d.). ARGH – Autism Rights Group Highland. Who Are ARGH?
    Type: Other
    Crossref
  11. Connor Tom Keating (2021). Participatory Autism Research: How Consultation Benefits Everyone . Frontiers in Psychology, 12, 713982-713982. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2021.713982 OpenAlex: https://openalex.org/W3193937630
    Crossref OpenAlex OpenCitations
  12. DS Main , G Ware , PG Iwasaki , M Burry , E Steiner , K Fedde et al. (2011). Taking Neighborhood Health to Heart (TNH2H): Building a Community-Based Participatory Data System . Preventing Chronic Disease, 9, E41. Centers for Disease Control and Prevention - Preventing Chronic Disease.
    Type: Article DOI: 10.5888/pcd9.110058 OpenAlex: https://openalex.org/W2067361151
    Crossref OpenAlex
  13. Teal Benevides , Stephen Shore (2020). Engagement and Compensation: Developing Guidelines for Researchers to Inform Authentic Research With Autistic Adults . American Journal of Occupational Therapy, 74(1_suppl), NA. SAGE Publications.
    Type: Article DOI: 10.5014/ajot.2020.74s1-rp103c OpenAlex: https://openalex.org/W3045555190
    Crossref OpenAlex OpenCitations
  18. Nicole Brown (2022). Scope and continuum of participatory research . International Journal of Research & Method in Education, 45(2), 200-211. Informa UK Limited.
    Type: Article DOI: 10.1080/1743727x.2021.1902980 OpenAlex: https://openalex.org/W3121798214
    Crossref OpenAlex OpenCitations
  20. Suzanne B. Cashman , Sarah Adeky , Alex J. Allen , Jason Corburn , Barbara A. Israel , Jaime Montaño et al. (2008). The Power and the Promise: Working With Communities to Analyze Data, Interpret Findings, and Get to Outcomes . American Journal of Public Health, 98(8), 1407-1417. American Public Health Association.
    Type: Article DOI: 10.2105/ajph.2007.113571 OpenAlex: https://openalex.org/W2124136357
    Crossref OpenAlex OpenCitations
  21. Eilidh Cage , Maria De Andres , Paige Mahoney (2020). Understanding the factors that affect university completion for autistic people . Research in Autism Spectrum Disorders, 72, 101519. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2020.101519 OpenAlex: https://openalex.org/W3003953106
    Crossref OpenAlex OpenCitations
  23. Melanie Nind (2011). Participatory data analysis: a step too far? Qualitative Research, 11(4), 349-363. SAGE Publications.
    Type: Article DOI: 10.1177/1468794111404310 OpenAlex: https://openalex.org/W2132517259
    Crossref OpenAlex OpenCitations
  25. Jonathan Quetzal Tritter , Alison McCallum (2006). The snakes and ladders of user involvement: Moving beyond Arnstein . Health Policy, 76(2), 156-168. Elsevier BV.
    Type: Article DOI: 10.1016/j.healthpol.2005.05.008 OpenAlex: https://openalex.org/W2161436779
    Crossref OpenAlex OpenCitations
  26. Susan E. Collins , Seema L. Clifasefi , Joey Stanton , The LEAP Advisory Board , Kee J. E. Straits , Eleanor Gil-Kashiwabara et al. (2018). Community-based participatory research (CBPR): Towards equitable involvement of community in psychology research. American Psychologist, 73(7), 884-898. American Psychological Association (APA).
    Type: Article DOI: 10.1037/amp0000167 OpenAlex: https://openalex.org/W2790208997
    Crossref OpenAlex OpenCitations
  27. Jonathan Vincent , Megan Potts , Daniel Fletcher , Simon Hodges , Jenny Howells , Alex Mitchell et al. (2017). ‘I think autism is like running on Windows while everyone else is a Mac’: using a participatory action research approach with students on the autistic spectrum to rearticulate autism and the lived experience of university . Educational Action Research, 25(2), 300-315. Informa UK Limited.
    Type: Article DOI: 10.1080/09650792.2016.1153978 OpenAlex: https://openalex.org/W2322046973
    Crossref OpenAlex OpenCitations
  30. 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
  31. Bronwyn Cumbo , Neil Selwyn (2022). Using participatory design approaches in educational research . International Journal of Research & Method in Education, 45(1), 60-72. Informa UK Limited.
    Type: Article DOI: 10.1080/1743727x.2021.1902981 OpenAlex: https://openalex.org/W3136603085
    Crossref OpenAlex OpenCitations
  32. Ashley J. Harrison , Laine P. Bradshaw , Nilofer C. Naqvi , Madison L. Paff , Jonathan M. Campbell (2017). Development and Psychometric Evaluation of the Autism Stigma and Knowledge Questionnaire (ASK-Q) . Journal of Autism and Developmental Disorders, 47(10), 3281-3295. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3242-x OpenAlex: https://openalex.org/W2736484290
    Crossref OpenAlex OpenCitations
  34. Helen Goddard , Anna Cook (2022). “I Spent Most of Freshers in my Room”—A Qualitative Study of the Social Experiences of University Students on the Autistic Spectrum . Journal of Autism and Developmental Disorders, 52(6), 2701-2716. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-021-05125-2 OpenAlex: https://openalex.org/W3174443091
    Crossref OpenAlex OpenCitations
  35. Emily Hotez , Christina Shane‐Simpson , Rita Obeid , Danielle DeNigris , Michael Siller , Corinna Costikas et al. (2018). Designing a Summer Transition Program for Incoming and Current College Students on the Autism Spectrum: A Participatory Approach . Frontiers in Psychology, 9(1), 46. Frontiers Media SA.
    Type: Article DOI: 10.3389/fpsyg.2018.00046 OpenAlex: https://openalex.org/W2790883928
    Crossref OpenAlex OpenCitations
  38. Kristen Gillespie-Lynch , Jennifer B Bisson , Sabine Saade , Rita Obeid , Bella Kofner , Ashley Johnson Harrison et al. (2022). If you want to develop an effective autism training, ask autistic students to help you . Autism, 26(5), 1082-1094. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211041006 OpenAlex: https://openalex.org/W3198012637
    Crossref OpenAlex OpenCitations
  40. Cos Michael * (2021). Is Being Othered a Co-Occurring Condition of Autism? Autism in Adulthood, 3(2), 118-119. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2021.0019 OpenAlex: https://openalex.org/W3153775139
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  43. Sandra Thom-Jones * (2021). Let's Talk About Autistic Autism Researchers . Autism in Adulthood, 3(3), 206-208. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2021.29012.scj OpenAlex: https://openalex.org/W3193667021
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  44. Patricia Rodriguez Espinosa , Steven P. Verney (2021). The Underutilization of Community‐based Participatory Research in Psychology: A Systematic Review . American Journal of Community Psychology, 67(3-4), 312-326. Wiley.
    Type: Article DOI: 10.1002/ajcp.12469 OpenAlex: https://openalex.org/W3103243229
    Crossref OpenAlex OpenCitations
  45. Philippa L Howard , Felicity Sedgewick (2021). ‘Anything but the phone!’: Communication mode preferences in the autism community . Autism, 25(8), 2265-2278. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211014995 OpenAlex: https://openalex.org/W3176767872
    Crossref OpenAlex OpenCitations
  46. Matthew Scott , Felicity Sedgewick (2021). ‘I have more control over my life’: A qualitative exploration of challenges, opportunities, and support needs among autistic university students . Autism & Developmental Language Impairments, 6, 239694152110104. SAGE Publications.
    Type: Article DOI: 10.1177/23969415211010419 OpenAlex: https://openalex.org/W3161714707
    Crossref OpenAlex OpenCitations