“I Knew She'd Get It, and Get Me”: Participants' Perspectives of a Participatory Autism Research Project

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Pellicano, E., Lawson, W., Hall, G., Mahony, J., Lilley, R., Heyworth, M., Clapham, H., & Yudell, M. (2021). “I Knew She'd Get It, and Get Me”: Participants' Perspectives of a Participatory Autism Research Project. Autism in Adulthood, 4(2), 120-129. https://doi.org/10.1089/aut.2021.0039

Publication date: 24 Nov 2021 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
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Authors

Publication authors
8
Publication authors identified as autistic
4 / 8 (50.0%)
  1. Elizabeth Pellicano
  2. Wenn Lawson *
  3. Gabrielle Hall *
  4. Joanne Mahony
  1. Rozanna Lilley
  2. Melanie Heyworth *
  3. Hayley Clapham *
  4. Michael Yudell

Abstract

Introduction: Autistic advocates and their supporters have long argued that conventional research practices provide too few opportunities for genuine engagement with autistic people, contributing to social disenfranchisement among autistic people. We recently described one attempt to develop and implement a participatory study in which a team of autistic and nonautistic researchers worked together to gather life histories from late-diagnosed autistic people. In the current study, we sought to understand the impact of this participatory approach on the participants themselves. Methods: We spoke to 25 Australian late-diagnosed autistic adults (aged 45–72 years), who had been interviewed by an autistic researcher using an oral history approach. We asked them about their experience of being involved in that project and the research process more broadly. We thematically analyzed participants' interviews. Results: Participants responded overwhelmingly positively to the opportunity to tell their life history, considering it illuminating and empowering. While recounting their life history was often described as “exhausting” and “draining,” participants also reported feeling “supported all the way” and agreed “it was made easier because I had an autistic researcher interviewing me.” One participant went so far as to say that they “probably would have dropped out [of the project] if it was run by people who weren't autistic.” Conclusions: These findings demonstrate that the benefits of coproduction to researchers and community partners extend to study participants and to the quality of the research itself. Involving autistic partners in the research process, especially in its implementation, can play a crucial role in enhancing autism research. Community brief Why is this an important issue? Autistic people are often left out of decisions that affect them, including in research. We wanted to change that. We, a group of autistic and nonautistic researchers, worked together to come up with a research project. In that project, we wanted to know more about autistic people who were diagnosed late in their lives. What was the purpose of this study? We wanted to know about their experiences of taking part in the research. We also wanted to understand what it was like for our study participants to tell their life story to another autistic person. What did we do? We spoke to 25 autistic people about their experiences of telling their life history. We asked questions like, “Can you tell me a bit about why you wanted to share your life history?” and “What was your overall experience of taking part in this research project?” We interviewed participants for about 25 minutes. What were the results of the study? We found that participants felt good about taking part in this project. They felt supported and were pleased that the project was being run by autistic people. They also told us that telling their story was often painful. However, it was made easier because they had an autistic researcher interviewing them. They also felt that they could share more with this person than with someone who was not an autistic person. What do these findings add to what was already known? This study shows that research that is done together by autistic and nonautistic researchers has a positive effect on participants. What are the potential weaknesses in the study? Most of our participants were well educated, White, and were in some form of work. We do not know if participants' positive experiences would also happen with other autistic people, including those from different cultural groups. This study was also unusual because it allowed participants to tell their own stories in their own way. That might have made participants more positive about it. How will these findings help autistic adults now or in the future? These findings show how important it is to include autistic people in research. It makes a real difference to the participants and to the quality of the research.

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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
72
Total cited references integrated for this publication.
Cited references with an identified autistic author
19 / 72 (26.4%)
Cited author occurrences identified as autistic
41 / 313 (13.1%)
Among occurrences linked to AutiHub author records: 41 / 148 (27.7%). Distinct cited authors identified as autistic: 28 / 266 (10.5%).
Cited author occurrences linked to AutiHub author records
148 / 313 (47.3%)
Distinct linked cited authors: 102 / 266 (38.3%)
Linked cited-author occurrences not identified as autistic
107 / 148 (72.3%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 107 / 313 (34.2%). Distinct linked cited authors not identified as autistic: 74 / 102 (72.5%).
  1. Melanie Nind (2014). What is inclusive research? Bloomsbury Publishing Plc.
    Type: Book DOI: 10.5040/9781849668149 OpenAlex: https://openalex.org/W1497181087
    Crossref OpenAlex OpenCitations
  2. 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
  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. (n.d.). Office of Autism Research Coordination National Institute of Mental Health on behalf of the Interagency Autism Coordinating Committee. 2016 IACC autism spectrum disorder research: Portfolio analysis report. 2019. https://iacc.hhs.gov/publications/portfolio-analysis/2016/ Accessed October29 2021.
    Type: Other
    Crossref
  6. Alessandro Portelli (1981). The Peculiarities of Oral History* . History Workshop Journal, 12(1), 96-107. Oxford University Press (OUP).
    Type: Article DOI: 10.1093/hwj/12.1.96 OpenAlex: https://openalex.org/W2007365779
    OpenAlex OpenCitations
  7. Damian Milton * (2012). On the ontological status of autism: the ‘double empathy problem’ . Disability & Society, 27(6), 883-887. Informa UK Limited.
    Type: Article DOI: 10.1080/09687599.2012.710008 OpenAlex: https://openalex.org/W1968949608
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  8. (n.d.). Pellicano E Dinsmore A Charman T. A future made together: Shaping autism research in the UK. 2013. http://discovery.ucl.ac.uk/10017703/1/A_Future_Made_Together_1 . 2_LR.pdf Accessed October29 2021.
    Type: Other
    Crossref
  10. 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
  11. Géraldine Dawson (2013). Dramatic Increase in Autism Prevalence Parallels Explosion of Research Into Its Biology and Causes . JAMA Psychiatry, 70(1), 9. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamapsychiatry.2013.488 OpenAlex: https://openalex.org/W2119714091
    Crossref OpenAlex OpenCitations
  14. Bevin Croft , Laysha Ostrow , Linda Italia , Adrian Camp-Bernard , Yana Jacobs (2016). Peer interviewers in mental health services research . The Journal of Mental Health Training, Education and Practice, 11(4), 234-243. Emerald.
    Type: Article DOI: 10.1108/jmhtep-02-2016-0012 OpenAlex: https://openalex.org/W2518667228
    Crossref OpenAlex OpenCitations
  15. Robin Stryker (2009). Disrupting Science: Social Movements, American Scientists and the Politics of the Military, 1945–1975 . Contemporary Sociology: A Journal of Reviews, 38(3), 280-281. SAGE Publications.
    Type: Article DOI: 10.1177/009430610903800346 OpenAlex: https://openalex.org/W2012785080
    OpenAlex
  16. Patricia Howlin , Iliana Magiati (2017). Autism spectrum disorder . Current Opinion in Psychiatry, 30(2), 69-76. Ovid Technologies (Wolters Kluwer Health).
    Type: Article DOI: 10.1097/yco.0000000000000308 OpenAlex: https://openalex.org/W2569059432
    Crossref OpenAlex OpenCitations
  17. A. Bengtsson-Tops , B. Svensson (2010). Mental health users' experiences of being interviewed by another user in a research project. A qualitative study . Journal of Mental Health, 19(3), 234-242. Informa UK Limited.
    Type: Article DOI: 10.3109/09638230903531084 OpenAlex: https://openalex.org/W2020258888
    Crossref OpenAlex OpenCitations
  18. David Moher , Paul Glasziou , Iain Chalmers , Mona Nasser , Patrick M M Bossuyt , Daniël A Korevaar et al. (2016). Increasing value and reducing waste in biomedical research: who's listening? The Lancet, 387(10027), 1573-1586. Elsevier BV.
    Type: Article DOI: 10.1016/s0140-6736(15)00307-4 OpenAlex: https://openalex.org/W2129167322
    Crossref OpenAlex OpenCitations
  19. (2018). The best research is produced when researchers and communities work together . Nature, 562(7725), 7-7. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/d41586-018-06855-7 OpenAlex: https://openalex.org/W4251215610
    AutiHub · Documentation center Crossref OpenAlex OpenCitations
  20. Damian Milton * , Richard Mills , Elizabeth Pellicano (2014). Ethics and Autism: Where is the Autistic Voice? Commentary on Post et al. Journal of Autism and Developmental Disorders, 44(10), 2650-2651. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-012-1739-x OpenAlex: https://openalex.org/W2032225339
    AutiHub · Autistic Scholars Crossref OpenAlex
  23. Jo Brett , Sophie Staniszewska , Carole Mockford , Sandra Herron‐Marx , John Hughes , Colin Tysall et al. (2014). Mapping the impact of patient and public involvement on health and social care research: a systematic review . Health Expectations, 17(5), 637-650. Wiley.
    Type: Article DOI: 10.1111/j.1369-7625.2012.00795.x OpenAlex: https://openalex.org/W2049504028
    Crossref OpenAlex OpenCitations
  24. Ana Bracic (2018). For Better Science: The Benefits of Community Engagement in Research . PS: Political Science & Politics, 51(03), 550-553. Cambridge University Press (CUP).
    Type: Article DOI: 10.1017/s1049096518000446 OpenAlex: https://openalex.org/W2809511472
    Crossref OpenAlex OpenCitations
  25. Thomas W. Concannon , Melissa Fuster , Tully Saunders , Kamal Patel , John B. Wong , Laurel K. Leslie et al. (2014). A Systematic Review of Stakeholder Engagement in Comparative Effectiveness and Patient-Centered Outcomes Research . Journal of General Internal Medicine, 29(12), 1692-1701. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11606-014-2878-x OpenAlex: https://openalex.org/W2055243789
    Crossref OpenAlex OpenCitations
  26. Andrea Cornwall , Rachel Jewkes (1995). What is participatory research? Social Science & Medicine, 41(12), 1667-1676. Elsevier BV.
    Type: Article DOI: 10.1016/0277-9536(95)00127-s OpenAlex: https://openalex.org/W2140960626
    Crossref OpenAlex OpenCitations
  28. Saara Greene , Amrita Ahluwalia , James Watson , Ruthann Tucker , Sean B. Rourke , Jay Koornstra et al. (2009). Between skepticism and empowerment: the experiences of peer research assistants in HIV/AIDS, housing and homelessness community‐based research . International Journal of Social Research Methodology, 12(4), 361-373. Informa UK Limited.
    Type: Article DOI: 10.1080/13645570802553780 OpenAlex: https://openalex.org/W2070964483
    Crossref OpenAlex OpenCitations
  29. Epstein S (1997). Impure science: AIDS, activism, and the politics of knowledge . Choice Reviews Online, 34(07), 34-3895-34-3895. American Library Association.
    Type: Article DOI: 10.5860/choice.34-3895 OpenAlex: https://openalex.org/W4300777287
    Crossref OpenAlex
  31. Moore K (2008). Disrupting science: social movements, American scientists, and the politics of the military, 1945-1975 . Choice Reviews Online, 45(12), 45-6753-45-6753. American Library Association.
    Type: Article DOI: 10.5860/choice.45-6753 OpenAlex: https://openalex.org/W1940560567
    Crossref
  32. Felicity Callard , Diana Rose , Til Wykes (2012). Close to the bench as well as at the bedside: involving service users in all phases of translational research . Health Expectations, 15(4), 389-400. Wiley.
    Type: Article DOI: 10.1111/j.1369-7625.2011.00681.x OpenAlex: https://openalex.org/W2099790691
    Crossref OpenAlex OpenCitations
  33. National Health , Medical Research Council (n.d.). Guidelines on Ethical Matters in Aboriginal and Torres Strait Islander Research . Guidelines on Ethical Matters in Aboriginal and Torres Strait Islander Research.
    Type: Other
    Crossref
  35. Juan Pablo Domecq , Gabriela Prutsky , Tarig Elraiyah , Zhen Wang , Mohammed Nabhan , Nathan Shippee et al. (2014). Patient engagement in research: a systematic review . BMC Health Services Research, 14(1), 89-89. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/1472-6963-14-89 OpenAlex: https://openalex.org/W2100905299
    Crossref OpenAlex OpenCitations
  36. Caroline José , Patricia George-Zwicker , Louise Tardif , Aaron Bouma , Darlene Pugsley , Luke Pugsley et al. (2020). “We are the stakeholders with the most at stake”: scientific and autism community co-researchers reflect on their collaborative experience in the CONNECT project . Research Involvement and Engagement, 6(1), 58-58. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s40900-020-00233-2 OpenAlex: https://openalex.org/W3089139100
    Crossref OpenAlex OpenCitations
  37. Shawn M. Kneipp , Barbara J. Lutz , Deirdra Means (2009). Reasons for Enrollment, the Informed Consent Process, and Trust Among Low‐Income Women Participating in a Community‐Based Participatory Research Study . Public Health Nursing, 26(4), 362-369. Wiley.
    Type: Article DOI: 10.1111/j.1525-1446.2009.00791.x OpenAlex: https://openalex.org/W2108701397
    Crossref OpenAlex OpenCitations
  38. Stephen G. Post , John Pomeroy , Carla C. Keirns , Virginia Isaacs Cover , Michael Leverett Dorn , Louis Boroson et al. (2013). Brief Report: Stony Brook Guidelines on the Ethics of the Care of People with Autism and Their Families . Journal of Autism and Developmental Disorders, 43(6), 1473-1476. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-012-1680-z OpenAlex: https://openalex.org/W2109367597
    OpenAlex
  39. Federica Fregonese (2018). Community involvement in biomedical research conducted in the global health context; what can be done to make it really matter? BMC Medical Ethics, 19(S1), 44-44. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s12910-018-0283-4 OpenAlex: https://openalex.org/W2806865181
    Crossref OpenAlex OpenCitations
  42. Becca Lory (2019). For the Love of Science? Autism in Adulthood, 1(1), 12-14. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2018.0005 OpenAlex: https://openalex.org/W2801676297
    Crossref OpenAlex OpenCitations
  44. Phoebe Friesen , Sapfo Lignou , Mark Sheehan , Ilina Singh (2021). Measuring the impact of participatory research in psychiatry: How the search for epistemic justifications obscures ethical considerations . Health Expectations, 24(S1), 54-61. Wiley.
    Type: Article DOI: 10.1111/hex.12988 OpenAlex: https://openalex.org/W2996436255
    Crossref OpenAlex OpenCitations
  46. Meng-Chuan Lai , Simon Baron-Cohen (2015). Identifying the lost generation of adults with autism spectrum conditions . The Lancet Psychiatry, 2(11), 1013-1027. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(15)00277-1 OpenAlex: https://openalex.org/W2128937542
    Crossref OpenAlex
  47. 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
  48. 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
  49. Kristina Staley , Sarah A. Buckland , Helen Hayes , Maryrose Tarpey (2014). ‘The missing links’: understanding how context and mechanism influence the impact of public involvement in research . Health Expectations, 17(6), 755-764. Wiley.
    Type: Article DOI: 10.1111/hex.12017 OpenAlex: https://openalex.org/W2147115701
    Crossref OpenAlex OpenCitations
  50. Eloise Stark , Dorota Ali , Annalise Ayre , Naomi Schneider , Sophia Parveen , Keith Marais et al. (2021). Coproduction with Autistic Adults: Reflections from the Authentistic Research Collective . Autism in Adulthood, 3(2), 195-203. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2020.0050 OpenAlex: https://openalex.org/W3112143438
    Crossref OpenAlex OpenCitations
  52. S Epstein (1997). Impure Science: AIDS, Activism, and the Politics of Knowledge . Nature Medicine, 3(2), 242-243. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1038/nm0297-242 OpenAlex: https://openalex.org/W2147671322
    OpenAlex
  54. 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
  57. Laura P. Forsythe , Kristin L. Carman , Victoria Szydlowski , Lauren Fayish , Laurie Davidson , David H. Hickam et al. (2019). Patient Engagement In Research: Early Findings From The Patient-Centered Outcomes Research Institute . Health Affairs, 38(3), 359-367. Health Affairs Publishing, LLC.
    Type: Article DOI: 10.1377/hlthaff.2018.05067 OpenAlex: https://openalex.org/W2918656572
    Crossref OpenAlex OpenCitations
  58. Clara R. Jørgensen , Nanna B. Eskildsen , Thora G. Thomsen , Inger D. Nielsen , Anna T. Johnsen (2018). The impact of using peer interviewers in a study of patient empowerment amongst people in cancer follow‐up . Health Expectations, 21(3), 620-627. Wiley.
    Type: Article DOI: 10.1111/hex.12655 OpenAlex: https://openalex.org/W2775569639
    Crossref OpenAlex OpenCitations
  59. M. Ariel Cascio , Éric Racine (2018). Person-oriented research ethics: integrating relational and everyday ethics in research . Accountability in Research, 25(3), 170-197. Informa UK Limited.
    Type: Article DOI: 10.1080/08989621.2018.1442218 OpenAlex: https://openalex.org/W2792860328
    Crossref OpenAlex OpenCitations
  62. Lilley R (n.d.). Lilley R,, Lawson W,, Hall G, et al. “A way to be me”: autobiographical reflections of late-diagnosed autistic adults. Autism. DOI: 10. 1177/13623613211050694. Autism.
    Type: Other
    Crossref
  63. M. Ariel Cascio , Jonathan A. Weiss , Éric Racine , and the Autism Research Ethics Task Force (2020). Person-oriented ethics for autism research: Creating best practices through engagement with autism and autistic communities . Autism, 24(7), 1676-1690. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320918763 OpenAlex: https://openalex.org/W3036990083
    Crossref OpenAlex OpenCitations
  64. Uta Frith (2020). Fast Lane to Slow Science . Trends in Cognitive Sciences, 24(1), 1-2. Elsevier BV.
    Type: Article DOI: 10.1016/j.tics.2019.10.007 OpenAlex: https://openalex.org/W2987779552
    Crossref OpenAlex OpenCitations
  65. Jennifer L. Stevenson , Bev Harp , Morton Ann Gernsbacher (2011). Infantilizing Autism . Disability Studies Quarterly, 31(3), dsq-sds.org/art. The Ohio State University Libraries.
    Type: Article DOI: 10.18061/dsq.v31i3.1675 OpenAlex: https://openalex.org/W4246781226
    Crossref OpenAlex OpenCitations
  67. (n.d.). Autistic Adults and other Stakeholders Engage Together (AASET). Engagement and compensation guide. https://www.pcori.org/sites/default/files/Engagement-Guide-as-of-122018-2 . 1.pdf
    Type: Other
    Crossref
  68. Fine M (1994). Handbook of Qualitative Research . Handbook of Qualitative Research, 70.
    Type: Other
    Crossref
  69. Marjorie L. DeVault , Norman Denzin , Yvonna Lincoln (1995). Handbook of Qualitative Research. Contemporary Sociology, 24(3), 418. SAGE Publications.
    Type: Article DOI: 10.2307/2076551 OpenAlex: https://openalex.org/W4238732959
    OpenAlex
  70. Ward PR (2009). Critical perspectives on ‘consumer involvement’ in health research . Epistemological dissonance and the know-do gap. J Sociol., 46(1), 63.
    Type: Other
    Crossref
  71. Markauskaite L. (2016). Epistemic Fluency and Professional Education: Innovation, Knowledgeable Action and Actionable Knowledge . Epistemic fluency and professional education: Innovation, knowledgeable action and actionable knowledge.
    Type: Other
    Crossref
  72. Portelli A. (n.d.). Portelli A. The peculiarities of oral history. Hist Workshop. 1981;12(1):96–107. Hist Workshop.
    Type: Other
    Crossref