The Codesign and Initial Evaluation of a Peer Support Program for Autistic Young Adults

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

Davies, J., Redmayne, B., Allain, L., Portway, L., Mandy, W., Cooper, K., & Crane, L. (2024). The Codesign and Initial Evaluation of a Peer Support Program for Autistic Young Adults. Autism in Adulthood, 7(5), 650-662. https://doi.org/10.1089/aut.2023.0153

Publication date: 10 May 2024 Added to AutiHub: 27 Sep 2026 Type: Article Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
7
Publication authors identified as autistic
1 / 7 (14.3%)

Abstract

UNLABELLED: Postdiagnostic support can be useful for any autistic person, but it may be especially important for young adults (16-25 years) who may be negotiating their autistic identity while also navigating the transition to adulthood. Yet there is a lack of tailored support for this group. In this study, we document the process of codesigning a six-session online peer support program aiming to support young people to navigate their autistic identity in the transition to adulthood. Through documenting discussions within our research team, we provide three key reflections underpinning the success of our codesign process as follows: (1) maximizing success through preparation; (2) facilitating effective, respectful communication; and (3) empowering meaningful collaboration. We also collected qualitative feedback from program attendees, which we analyzed using reflexive thematic analysis. This feedback highlighted how attendees appreciated the opportunity for self-discovery and to develop their understanding of autism. They also valued the social connections formed during the program. Finally, they said they benefited from the practical strategies they developed. Overall, these insights contribute to the growing body of knowledge on participatory autism research and highlight good practices when meaningfully involving autistic people in shaping the support programs that directly impact their lives. The peer support program, Understanding You, Discovering You, warrants further, more rigorous evaluation in future studies. COMMUNITY BRIEF: Why was this program developed?: It is important to design and test support groups that aim to improve the well-being of autistic young adults (ages 16-25) during the transition to adulthood.If support groups are not codesigned, they are less likely to be considered acceptable by autistic people. By codesign, we mean different groups of people (e.g., autistic people, clinicians, researchers) working together to create something.In this study, our team of autistic young adults, clinicians, researchers, and an autism charity representative codesigned a program to support autistic young adults during the transition to adulthood. The program was developed because a UK charity-Ambitious about Autism-identified that there was a need for specific support for autistic young adults.What does the program do?: The program-called Understanding You, Discovering You-is designed to help autistic young adults embrace and understand their autistic identity. The program is designed to be delivered by two facilitators, one of whom is autistic, and includes up to 10 autistic young people at a time. Autistic young adults decided the content of the program, and how it was organized.How did the researchers evaluate the development of the new program?: In this article, we report our team's reflections about involving autistic young adults in the program's design, to guide the creation of similar projects in the future. We also gathered initial feedback about the program from program attendees to understand their experience and learn how to make the program better in the future.What were the early findings?: We identified the following three main things that were important when involving autistic young adults in the codesign of our program: good preparation, effective and respectful communication, and making sure the collaboration is meaningful. Program attendees reported that they liked learning about autism, found value in the social connections they made, and gained practical skills from the program. These findings tell us that codesigning programs with autistic people is a good way to make sure they are useful.What were the weaknesses of this project?: One weakness of this project was that only a small number of people filled out our postprogram evaluation, which meant that we did not get as much feedback as we would have liked.What are the next steps?: Our next steps will involve adjusting the program based on participant feedback before doing a larger and more rigorous evaluation of the program.How will this work help autistic adults now or in the future?: This work provides a valuable example of how diverse teams (which include autistic young adults) can work collaboratively to codesign support programs for autistic people.

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 02:39.

Cited references
59
With a DOI
54
Without a DOI, from raw bibliography text
5
15 / 59 (25.4%) cited references include at least one author identified as autistic.
References with data to complete
4 / 59 (6.8%)
References with detected author names
58 / 59 (98.3%)
Without detected author names
1
Without a structured title
3
Without a stable identifier
5
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
242
From DOI or external metadata
242
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
157 / 242 (64.9%) names are linked to an author already present in AutiHub. 85 / 242 (35.1%) names are not yet linked.
Names linked to a person identified as autistic
34 / 242 (14.0%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 34 / 157 (21.7%). Distinct people identified as autistic: 31 / 184 (16.8%).
  1. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  2. Laura Crane , James W Chester , Lorna Goddard , Lucy A Henry , Elisabeth L. Hill (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom . Autism, 20(2), 153-162. SAGE Publications.
    Crossref OpenAlex OpenCitations
  3. Jeffrey Jensen Arnett (2014). Emerging Adulthood . Oxford University PressNew York.
    Crossref OpenAlex OpenCitations
  4. Karola Dillenburger , Lyn McKerr , Julie-Ann Jordan (2014). Lost in Translation: Public Policies, Evidence-based Practice, and Autism Spectrum Disorder . International Journal of Disability, Development and Education, 61(2), 134-151. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  5. Laura Crane , Richard Batty , Hanna Adeyinka , Lorna Goddard , Lucy A. Henry , Elisabeth L. Hill (2018). Autism diagnosis in the United Kingdom: perspectives of autistic adults, parents and professionals . J. Autism Dev. Disord., 48(11), 3761. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  6. Hannah McLinden , Felicity Sedgewick (2023). ‘The girls are out there’: professional perspectives on potential changes in the diagnostic process for, and recognition of, autistic females in the UK . British Journal of Special Education, 50(1), 63-82. Wiley.
    Crossref OpenAlex OpenCitations
  7. Lydia Jones , Lorna Goddard , Elisabeth L. Hill , Lucy A. Henry , Laura Crane (2014). Experiences of Receiving a Diagnosis of Autism Spectrum Disorder: A Survey of Adults in the United Kingdom . Journal of Autism and Developmental Disorders, 44(12), 3033-3044. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  8. Yunhe Huang , Samuel R. C. Arnold , Kitty-Rose Foley , Julian Trollor (2022). Choose your Own Adventure: Pathways to Adulthood Autism Diagnosis in Australia . Journal of Autism and Developmental Disorders, 52(7), 2984-2996. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  9. Phillipa Raymond-Barker , Gemma Maria Griffith , Richard P. Hastings (2018). Biographical disruption: Experiences of mothers of adults assessed for autism spectrum disorder . Journal of Intellectual & Developmental Disability, 43(1), 83-92. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  10. Shilpa Aggarwal , Beth Angus (2015). Misdiagnosis versus missed diagnosis: diagnosing autism spectrum disorder in adolescents . Australasian Psychiatry, 23(2), 120-123. SAGE Publications.
    Crossref OpenAlex OpenCitations
  11. Bryony Beresford , Suzanne Mukherjee , Emese Mayhew , Emily Heavey , A‐La Park , Lucy Stuttard et al. (2020). Evaluating specialist autism teams’ provision of care and support for autistic adults without learning disabilities: the SHAPE mixed-methods study . Health Services and Delivery Research, 8(48), 1-200. National Institute for Health and Care Research.
    Crossref OpenAlex OpenCitations
  12. James E. Marcia (1966). Development and validation of ego-identity status. Journal of Personality and Social Psychology, 3(5), 551-558. American Psychological Association (APA).
    Type: Article DOI: 10.1037/h0023281 OpenAlex: https://openalex.org/W2117009621
    Crossref OpenAlex OpenCitations
  13. 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.
    Crossref OpenAlex OpenCitations
  14. Kathryn A. Smith , Jean-G. Gehricke , Suzannah Iadarola , Audrey Wolfe , Karen A. Kuhlthau (2020). Disparities in Service Use Among Children With Autism: A Systematic Review . Pediatrics, 145(Supplement_1), S35-S46. American Academy of Pediatrics (AAP).
    Crossref OpenAlex OpenCitations
  15. Samuel Tromans , Verity Chester , Eli Gemegah , Kristian Roberts , Zoe Morgan , Guiqing Lily Yao et al. (2021). Autism identification across ethnic groups: a narrative review . Advances in Autism, 7(3), 241-255. Emerald.
    Crossref OpenAlex OpenCitations
  16. Elizabeth B.-N. Sanders , Pieter Jan Stappers (2008). Co-creation and the new landscapes of design . CoDesign, 4(1), 5-18. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  17. Alexandra Leedham , Andrew R. Thompson , Richard Smith , Megan Freeth (2020). ‘I was exhausted trying to figure it out’: The experiences of females receiving an autism diagnosis in middle to late adulthood . Autism, 24(1), 135-146. SAGE Publications.
    Crossref OpenAlex OpenCitations
  18. Jeffrey Jensen Arnett (2007). Emerging Adulthood: What Is It, and What Is It Good For? Child Development Perspectives, 1(2), 68-73. Oxford University Press (OUP).
    Crossref OpenAlex OpenCitations
  19. Josephine Shenouda , Emily Barrett , Amy L. Davidow , Kate Sidwell , Cara Lescott , William Halperin et al. (2023). Prevalence and Disparities in the Detection of Autism Without Intellectual Disability . Pediatrics, 151(2). American Academy of Pediatrics (AAP).
    Crossref OpenAlex OpenCitations
  20. Jennifer Jones , Kami L. Gallus , Kacey L. Viering , Lauren M. Oseland (2015). ‘Are you by chance on the spectrum?’ Adolescents with autism spectrum disorder making sense of their diagnoses . Disability & Society, 30(10), 1490-1504. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  21. Matthew de Broize , Kiah Evans , Andrew Whitehouse , John Wray , Valsamma Eapen , Anna Urbanowicz (2022). Exploring the Experience of Seeking an Autism Diagnosis as an Adult . Autism in Adulthood, 4(2), 130-140. SAGE Publications.
    Crossref OpenAlex OpenCitations
  22. Bryony Beresford , Suzanne Mukherjee (2023). Providing psychoeducation after an autism diagnosis: findings from an evidence-based consultation project . University of York.
    Crossref OpenAlex OpenCitations
  23. Kristy A. Anderson , Collette Sosnowy , Alice A. Kuo , Paul Shattuck (2018). Transition of Individuals With Autism to Adulthood: A Review of Qualitative Studies . Pediatrics, 141(Supplement_4), S318-S327. American Academy of Pediatrics (AAP).
    Crossref OpenAlex OpenCitations
  24. Emeline Han , Katrina Scior , Katerina Avramides , Laura Crane (2022). A systematic review on autistic people's experiences of stigma and coping strategies . Autism Research, 15(1), 12-26. Wiley.
    Type: Article DOI: 10.1002/aur.2652 OpenAlex: https://openalex.org/W4200200179
    Crossref OpenAlex OpenCitations
  25. Rosemarie B Wilson , Andrew R. Thompson , Georgina Rowse , Richard Smith , Amber-Sophie Dugdale , Megan Freeth (2023). Autistic women’s experiences of self-compassion after receiving their diagnosis in adulthood . Autism, 27(5), 1336-1347. SAGE Publications.
    Crossref OpenAlex OpenCitations
  26. Samuel R. C. Arnold , Yunhe Huang , Ye In (Jane) Hwang , Amanda Richdale , Julian Trollor , Lauren P Lawson (2020). “The Single Most Important Thing That Has Happened to Me in My Life”: Development of the Impact of Diagnosis Scale—Preliminary Revision . Autism in Adulthood, 2(1), 34-41. SAGE Publications.
    Crossref OpenAlex OpenCitations
  27. Serena Cribb , Lorcan Kenny , Elizabeth Pellicano (2019). ‘I definitely feel more in control of my life’: The perspectives of young autistic people and their parents on emerging adulthood . Autism, 23(7), 1765-1781. SAGE Publications.
    Crossref OpenAlex OpenCitations
  28. Yunhe Huang , Samuel R. C. Arnold , Kitty-Rose Foley , Julian Trollor (2020). Diagnosis of autism in adulthood: A scoping review . Autism, 24(6), 1311-1327. SAGE Publications.
    Crossref OpenAlex OpenCitations
  29. Yunhe Huang , Samuel R. C. Arnold , Kitty-Rose Foley , Julian Trollor (2024). A Qualitative Study of Adults’ and Support Persons’ Experiences of Support After Autism Diagnosis . Journal of Autism and Developmental Disorders, 54(3), 1157-1170. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  30. Yunhe Huang , Samuel R. C. Arnold , Kitty-Rose Foley , Julian Trollor (2024). Experiences of Support Following Autism Diagnosis in Adulthood . Journal of Autism and Developmental Disorders, 54(2), 518-531. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  31. Victoria Clarke , Virginia Braun (2014). Thematic Analysis . In Encyclopedia of Critical Psychology (pp. 1947-1952). Springer New York.
    OpenCitations
  32. Rachel Marie Tindall , Melissa Ferris , Meredith Townsend , Gayle Boschert , Steven Moylan (2021). A first‐hand experience of co‐design in mental health service design: Opportunities, challenges, and lessons . International Journal of Mental Health Nursing, 30(6), 1693-1702. Wiley.
    Crossref OpenAlex OpenCitations
  33. Lise Mogensen , Jan Mason (2015). The meaning of a label for teenagers negotiating identity: experiences with autism spectrum disorder . In Children, Health and Well-Being (pp. 83). Wiley.
    Crossref OpenAlex OpenCitations
  34. Kristen Bottema-Beutel , Shannon Crowley LaPoint , So Yoon Kim , Sarah Mohiuddin , Qun Yu , Rachael McKinnon (2023). An evaluation of intervention research for transition-age autistic youth . Autism, 27(4), 890-904. SAGE Publications.
    Crossref OpenAlex OpenCitations
  35. (2021). International Journal of Design . International Journal of Design. Universitas Komputer Indonesia.
    OpenAlex
  36. McKercher K (2020). Beyond Sticky Notes: Co-Design for Real: Mindsets, Methods and Movements . Beyond Sticky Notes: Co-Design for Real: Mindsets, Methods and Movements.
    Type: Other
    Crossref
  37. Connolly M (2023). B38 Dublin Simon Community.
    Type: Other
    Crossref
  38. Steen M (2011). B40 International Journal of Design, 5(2), 53.
    Type: Other
    Crossref
  39. Jade Davies , Labeebah Islaam *Autistic author. Learn more… , Susannah Carter *Autistic author. Learn more… , Ben Redmayne , Kate Cooper , Will Mandy et al. (2023). Examining the support experiences of autistic young people with multiple marginalized identities in the United Kingdom . Center for Open Science.
    Crossref OpenAlex OpenCitations
  40. Virginia Braun , Victoria Clarke (2022). Thematic analysis: a practical guide . In Thematic analysis: a practical guide (pp. 1-7). Springer International Publishing.
    Crossref OpenAlex
  41. John Jamieson , Virginia Braun , Victoria Clarke (2014). Successful Qualitative Research: A practical guide for beginners . QMiP Bulletin, 1(18), 39-41. British Psychological Society.
    OpenAlex
  42. Niner E (2019). B50 Ambitious about Autism. Published online.
    Type: Other
    Crossref
  43. Braun V. (2013). Successful qualitative research: A practical guide for beginners . Successful qualitative research: A practical guide for beginners, 173.
    Type: Other
    Crossref