“It Was a Completely Different Lens”: Autistic Adult and Parent Perceptions of Autistic-Led Autism Information Workshops

This publication is included in the Autistic Autism Scholarship Project. two authors of this publication are 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

Waddington, H., Minnell, H., Wallace, H., Patrick, L., Moriah, C., Noble, B., & Wallace-Watkin, C. (2025). “It Was a Completely Different Lens”: Autistic Adult and Parent Perceptions of Autistic-Led Autism Information Workshops. Autism in Adulthood. https://doi.org/10.1089/aut.2024.0337

Publication date: 10 Jun 2025 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
Publisher source (DOI) OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
7
Publication authors identified as autistic
2 / 7 (28.6%)
  1. Hannah Waddington
  2. Hannah Minnell
  3. H.R. Wallace
  4. Lee Patrick *
  1. Chanelle Moriah
  2. Beth Noble *
  3. Carla Wallace-Watkin

Abstract

Research shows that when autistic people mentor and share information about autism with other autistic individuals, it provides benefits. However, researchers are yet to determine whether parents of autistic children benefit from learning about autism directly from autistic people. Autistic people leading information workshops for parents of autistic children are an emerging practice. In this coproduced study, researchers used a mixed-methods approach to examine the perceptions of 12 parents of young autistic children and 7 autistic adults who participated in, or facilitated, three 2-hour autism information workshops. Quantitative survey results showed that parents were generally satisfied with the workshops, but some would have liked more time. The qualitative findings suggest that the workshops fostered a more positive narrative around autism. The workshops helped build connections both within and across groups for the autistic adults, the parents, and their autistic children. The workshop’s “cosy” nature helped participants to feel comfortable in sharing their experiences and questions. Participants expressed a preference or desire for a diverse range of facilitators. These results highlight the important role that autistic adults could play in supporting and sharing information with parents of young autistic children. Community Brief Why was this program developed? It can be helpful for autistic people to provide support and information about autism to other autistic people. It might also be helpful for parents of autistic children to learn about autism directly from autistic people. We developed this program to explore the potential benefits of autistic-led workshops for parents of autistic children, as well as for the autistic individuals delivering the workshop. Research is needed to understand how such workshops can impact both groups. What does this program do? Autistic-led information workshops for parents of autistic children may improve parental understanding of neurodiversity and autistic people. These workshops provide a safe and open space where autistic people deliver content and share their personal experiences of being autistic. The workshops include a presentation about autism, opportunities for sharing experiences, and time for parents to engage directly with autistic facilitators. How did the researchers evaluate the new program? In this study, autistic and non-autistic researchers worked together to understand what people think about the workshops. Twelve parents of young autistic children participated as workshop attendees, and seven autistic adults participated as workshop facilitators. The research used surveys and interviews to gather feedback. What were the early findings? Parents and autistic adults generally liked the workshops, though some thought they were too short. They shared that the workshops helped parents to think more positively about autism. Autistic people and parents liked the connections that they made in the workshop and appreciated the “cosy” environment. They also cared about whether the autistic facilitators resembled the children of the parents attending the workshops. What were the weaknesses of this project? The study involved only 12 parents and 7 autistic adults. This means we don’t know if the findings are applicable to other autistic people and parents. What are the next steps? The next steps are to evaluate the workshops with more autistic adults and parents/families of autistic children. It would also be helpful to evaluate perceptions of workshops that are longer or a series of workshops. How will this work help autistic adults now or in the future? Our findings suggest that autistic adults liked delivering the workshops and that these workshops could be helpful for parents of autistic children. In the future, such workshops could become more widely available, empowering autistic adults to continue to share their knowledge and lived experience.

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: 2 Oct 2026 08:04.

Cited references
51
With a DOI
45
Without a DOI, from raw bibliography text
6
16 / 51 (31.4%) cited references include at least one author identified as autistic.
References with data to complete
4 / 51 (7.8%)
References with detected author names
47 / 51 (92.2%)
Without detected author names
4
Without a structured title
4
Without a stable identifier
6
References with raw author names still to review
4
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
200
From DOI or external metadata
200
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
4
117 / 200 (58.5%) names are linked to an author already present in AutiHub. 83 / 200 (41.5%) names are not yet linked.
Names linked to a person identified as autistic
23 / 200 (11.5%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 23 / 117 (19.7%). Distinct people identified as autistic: 19 / 183 (10.4%).
  1. Galletta, Anne , Cross, William E. Jr. 1940- (2014). Mastering the semi-structured interview and beyond: from research design to analysis and publication . Choice Reviews Online, 51(05), 51-2430-51-2430. American Library Association.
    Type: Article DOI: 10.5860/choice.51-2430 OpenAlex: https://openalex.org/W644893764
    OpenAlex
  4. Joanna Brooks , Serena McCluskey , Emma Turley , Nigel King (2015). The Utility of Template Analysis in Qualitative Psychology Research . Qualitative Research in Psychology, 12(2), 202-222. Informa UK Limited.
    Type: Article DOI: 10.1080/14780887.2014.955224 OpenAlex: https://openalex.org/W1513859721
    Crossref OpenAlex OpenCitations
  6. Catherine Lord , Tony Charman , Alexandra Havdahl , Paul Carbone , Evdokia Anagnostou , Brian Boyd et al. (2022). The Lancet Commission on the future of care and clinical research in autism . The Lancet, 399(10321), 271-334. Elsevier BV.
    Type: Article DOI: 10.1016/s0140-6736(21)01541-5 OpenAlex: https://openalex.org/W4200099564
    Crossref OpenAlex OpenCitations
  7. Judy Farmer , Andrea Reupert (2013). Understanding A utism and understanding my child with A utism: An evaluation of a group parent education program in rural A ustralia . Australian Journal of Rural Health, 21(1), 20-27. Wiley.
    Type: Article DOI: 10.1111/ajr.12004 OpenAlex: https://openalex.org/W1521022167
    Crossref OpenAlex OpenCitations
  8. Steven K. Kapp * , Kristen Gillespie-Lynch , Lauren E. Sherman , Ted Hutman (2013). Deficit, difference, or both? Autism and neurodiversity. Developmental Psychology, 49(1), 59-71. American Psychological Association (APA).
    Type: Article DOI: 10.1037/a0028353 OpenAlex: https://openalex.org/W2124715426
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  9. Mary Banach , John Iudice , Lindsay Conway , Leslie J. Couse (2010). Family Support and Empowerment: Post Autism Diagnosis Support Group for Parents . Social Work With Groups, 33(1), 69-83. Informa UK Limited.
    Type: Article DOI: 10.1080/01609510903437383 OpenAlex: https://openalex.org/W2006345995
    Crossref OpenAlex OpenCitations
  12. Kerrianne E Morrison , Kilee M. DeBrabander , Desiree R Jones , Daniel J Faso , Robert A. Ackerman , Noah Sasson (2020). Outcomes of real-world social interaction for autistic adults paired with autistic compared to typically developing partners . Autism, 24(5), 1067-1080. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319892701 OpenAlex: https://openalex.org/W2996531634
    Crossref OpenAlex OpenCitations
  13. Melissa E. Mitchell , Lillian T. Eby , Belle Rose Ragins (2015). My Mentor, My Self: Antecedents and Outcomes of Perceived Similarity in Mentoring Relationships . Journal of Vocational Behavior, 89, 1-9. Elsevier BV.
    Type: Article DOI: 10.1016/j.jvb.2015.04.008 OpenAlex: https://openalex.org/W1987504789
    Crossref OpenAlex OpenCitations
  16. Lauren Brookman-Frazee , Aubyn C. Stahmer , Nicole Stadnick , Colby Chlebowski , Amy Herschell , Ann F. Garland (2016). Characterizing the Use of Research-Community Partnerships in Studies of Evidence-Based Interventions in Children’s Community Services . Administration and Policy in Mental Health and Mental Health Services Research, 43(1), 93-104. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10488-014-0622-9 OpenAlex: https://openalex.org/W1989069101
    Crossref OpenAlex OpenCitations
  20. Riley Buijsman , Sander Begeer , Anke Scheeren (2023). ‘Autistic person’ or ‘person with autism’? Person-first language preference in Dutch adults with autism and parents . Autism, 27(3), 788-795. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221117914 OpenAlex: https://openalex.org/W4291165536
    Crossref OpenAlex OpenCitations
  21. Sherry R. Arnstein (1969). A Ladder Of Citizen Participation . Journal of the American Institute of Planners, 35(4), 216-224. Informa UK Limited.
    Type: Article DOI: 10.1080/01944366908977225 OpenAlex: https://openalex.org/W2008251417
    Crossref OpenAlex OpenCitations
  22. Lindsey M. Weiler , Annie K. Goerdt , Kalli B. Kremer , Emily Goldberg , Rebekah L. Hudock (2022). Social Validity and Preliminary Outcomes of a Mentoring Intervention for Adolescents and Adults With Autism . Focus on Autism and Other Developmental Disabilities, 37(4), 215-226. SAGE Publications.
    Type: Article DOI: 10.1177/10883576211073687 OpenAlex: https://openalex.org/W4207031498
    Crossref OpenAlex OpenCitations
  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. Rebecca Lucas , Alana I. James (2018). An Evaluation of Specialist Mentoring for University Students with Autism Spectrum Disorders and Mental Health Conditions . Journal of Autism and Developmental Disorders, 48(3), 694-707. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3303-1 OpenAlex: https://openalex.org/W2754595412
    Crossref OpenAlex OpenCitations
  25. Kyle M. Frost , Kathryn M. Bailey , Brooke R. Ingersoll (2019). “I Just Want Them to See Me As…Me”: Identity, Community, and Disclosure Practices Among College Students on the Autism Spectrum . Autism in Adulthood, 1(4), 268-275. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2018.0057 OpenAlex: https://openalex.org/W2976484598
    Crossref OpenAlex OpenCitations
  26. Sarah J. Tracy (2010). Qualitative Quality: Eight “Big-Tent” Criteria for Excellent Qualitative Research . Qualitative Inquiry, 16(10), 837-851. SAGE Publications.
    Type: Article DOI: 10.1177/1077800410383121 OpenAlex: https://openalex.org/W2103879113
    Crossref OpenAlex OpenCitations
  27. C. Thompson * , J. McDonald , T. Kidd , T. Falkmer , Sven Bölte , Sonya Girdler (2020). “I don’t want to be a patient”: Peer mentoring partnership fosters communication for autistic university students . Scandinavian Journal of Occupational Therapy, 27(8), 625-640. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1080/11038128.2020.1738545 OpenAlex: https://openalex.org/W3011578114
    Crossref OpenAlex OpenCitations
  29. Jennifer C. Greene , Valerie J. Caracelli , Wendy F. Graham (1989). Toward a Conceptual Framework for Mixed-Method Evaluation Designs . Educational Evaluation and Policy Analysis, 11(3), 255-274. American Educational Research Association (AERA).
    Type: Article DOI: 10.3102/01623737011003255 OpenAlex: https://openalex.org/W2109685530
    Crossref OpenAlex OpenCitations
  30. Dominic A. Trevisan , Suzanne Leach , Grace Iarocci , Elina Birmingham (2021). Evaluation of a Peer Mentorship Program for Autistic College Students . Autism in Adulthood, 3(2), 187-194. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2019.0087 OpenAlex: https://openalex.org/W3027870216
    Crossref OpenAlex OpenCitations
  32. Meiju Zhao , Wangqian Fu , Jun Ai (2021). The Mediating Role of Social Support in the Relationship Between Parenting Stress and Resilience Among Chinese Parents of Children with Disability . Journal of Autism and Developmental Disorders, 51(10), 3412-3422. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-020-04806-8 OpenAlex: https://openalex.org/W3116649655
    Crossref OpenAlex OpenCitations
  33. Ryan Bradley (2016). ‘Why single me out?’ Peer mentoring, autism and inclusion in mainstream secondary schools . British Journal of Special Education, 43(3), 272-288. Wiley.
    Type: Article DOI: 10.1111/1467-8578.12136 OpenAlex: https://openalex.org/W2528766118
    Crossref OpenAlex OpenCitations
  34. Ellen A. Ensher , Susan E. Murphy (1997). Effects of Race, Gender, Perceived Similarity, and Contact on Mentor Relationships . Journal of Vocational Behavior, 50(3), 460-481. Elsevier BV.
    Type: Article DOI: 10.1006/jvbe.1996.1547 OpenAlex: https://openalex.org/W2153106115
    Crossref OpenAlex OpenCitations
  35. Micah Mazurek (2014). Loneliness, friendship, and well-being in adults with autism spectrum disorders . Autism, 18(3), 223-232. SAGE Publications.
    Type: Article DOI: 10.1177/1362361312474121 OpenAlex: https://openalex.org/W2161515436
    Crossref OpenAlex OpenCitations
  36. 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
  37. den Houting J (2021). Participatory and Inclusive Autism Research Practice Guides . Participatory and Inclusive Autism Research Practice Guides, 192236536X.
    Type: Other
    Crossref
  38. Carol Sankey , Sophie Girard , Emilie Cappe (2021). Evaluation of the social validity and implementation process of a psychoeducational program for parents of a child with Autism Spectrum Disorder . International Journal of Developmental Disabilities, 67(2), 101-111. Informa UK Limited.
    Type: Article DOI: 10.1080/20473869.2019.1598721 OpenAlex: https://openalex.org/W2940340224
    Crossref OpenAlex OpenCitations
  39. Sinéad L. Mullally , Cherice C. Edwards , Alice Wood , Sophie E. Connolly , Hannah Constable , Stuart Watson et al. (2024). “I like being autistic”: Assessing the benefit of autistic-led psychoeducation for autistic children . medRxiv. openRxiv.
    Type: Preprint DOI: 10.1101/2024.07.12.24310317 OpenAlex: https://openalex.org/W4400663628
    Crossref
  42. Anne Galletta (2020). Mastering the Semi-Structured Interview and Beyond . New York University Press.
    Type: Book DOI: 10.18574/nyu/9780814732939.001.0001 OpenAlex: https://openalex.org/W2339721090
    Crossref
  43. Virginia Braun , Victoria Clarke (2021). One size fits all? What counts as quality practice in (reflexive) thematic analysis? Qualitative Research in Psychology, 18(3), 328-352. Informa UK Limited.
    Type: Article DOI: 10.1080/14780887.2020.1769238 OpenAlex: https://openalex.org/W3048560297
    Crossref OpenAlex OpenCitations
  44. David Byrne (2022). A worked example of Braun and Clarke’s approach to reflexive thematic analysis . Quality & Quantity, 56(3), 1391-1412. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11135-021-01182-y OpenAlex: https://openalex.org/W3175998072
    Crossref OpenAlex OpenCitations
  45. Monk R (2022). Autism terminology guidance from the Autistic community of Aotearoa New Zealand: A living resource created by Autistic people with the support of Autism New Zealand . Autism terminology guidance from the Autistic community of Aotearoa New Zealand: A living resource created by Autistic people with the support of Autism New Zealand.
    Type: Other
    Crossref
  46. Simon Bury , Rachel Jellett , Alexandra Haschek , Michael Wenzel , Darren Hedley , Jennifer R. Spoor (2023). Understanding language preference: Autism knowledge, experience of stigma and autism identity . Autism, 27(6), 1588-1600. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221142383 OpenAlex: https://openalex.org/W4311280578
    Crossref OpenAlex OpenCitations
  47. Lucie Jurek , Kathy Leadbitter , Bruno Falissard , Cyrille Colin , Sandrine Touzet , Marie-Maude Geoffray (2023). Parental experience of parent-mediated intervention for children with ASD: A systematic review and qualitative evidence synthesis . Autism, 27(3), 647-666. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221112204 OpenAlex: https://openalex.org/W4288084639
    Crossref OpenAlex OpenCitations
  48. (n.d.). 45. Jones SR. Do you believe in your children? We are your child blog. February 3 2015. https://wearelikeyourchild.blogspot.com/2015/02/do-you-believe-in-your-children.html [Last accessed: February2025].
    Type: Other
    Crossref
  49. (n.d.). 46. Rose K. An autistic frequency (stimming). The Autistic Advocate blog. August 4 2018. https://theautisticadvocate.com/an-autistic-frequency/ [Last accessed: February17 2025].
    Type: Other
    Crossref
  50. (n.d.). 47. National Development Team for Inclusion (NDTi). Evaluation of the Oliver McGowan mandatory training trial: Final report. NDTi. June 2022. https://www.ndti.org.uk/assets/files/OMMT-final-report.pdf [Last accessed: 17February2025].
    Type: Other
    Crossref
  51. (n.d.). 48. National Development Team for Inclusion (NDTi). The Oliver McGowan mandatory training evaluation: Learning about involvement of experts by experience in design and delivery of training. NDTi. December 2022. https://www.hee.nhs.uk/sites/default/files/documents/Final%20Expert%20by%20experience%20final%20report%20-%20December%202022.pdf [Last accessed: 21February2025].
    Type: Other
    Crossref