Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults

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

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Crane, L., Hearst, C., Ashworth, M., & Davies, J. (2023). Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults. Autism & Developmental Language Impairments, 8, 23969415231189608-23969415231189608. https://doi.org/10.1177/23969415231189608

Journal or book title
Autism & Developmental Language Impairments
Publisher
SAGE Publications
Volume
8
Pages
23969415231189608-23969415231189608
Article number
23969415231189608
Publication date: 1 Jan 2023 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
4
Publication authors identified as autistic
1 / 4 (25.0%)
  1. Laura Crane
  2. Caroline Hearst *
  3. Maria Ashworth
  4. Jade Davies

Abstract

Background & aims: Exploring Being Autistic is an autistic-led group-based programme providing psychoeducation and peer support to newly identified/diagnosed autistic adults. In 2020, due to social distancing measures implemented following the coronavirus pandemic, Exploring Being Autistic was adapted for online delivery. Here, we aimed to replicate previous research into the in-person delivery of Exploring Being Autistic, to determine whether similar results were obtained when the programme was delivered online. Further, we aimed to identify the unique opportunities and challenges that online delivery afforded. Methods: We used a community-based participatory research (CBPR) approach, whereby the autistic developer and facilitator of Exploring Being Autistic worked collaboratively with a team of academic researchers throughout the research process. Together, we evaluated two iterations of the online Exploring Being Autistic programme, involving 16 attendees. Attendees completed questionnaires before, during and after the programme. Attendees were also invited to participate in two post-programme (group or individual) interviews: one following the completion of the programme (time one) and another 6-8 months later (time two). Attendees were included in the research if they completed at least one questionnaire or interview. Data were analysed qualitatively, using reflexive thematic analysis. Results: Experiences of participating in the programme tended to be positive. Participants appreciated the autistic-led nature of the programme, found unity in the diversity of the group, and developed a positive and practical outlook as a result of the programme. Further analyses of our data revealed mixed views regarding the online delivery of the programme. Opportunities of online delivery were noted, such as this mode of participation reducing cognitive load, enabling the programme to be accessible to more participants, and fostering meaningful social connections among participants. However, technology and practical issues were felt to cause barriers, and some human aspects of participation were felt to be 'lost in translation' (e.g., in breakout groups). Conclusions: The online delivery of the Exploring Being Autistic programme yielded similar results to previous, in-person evaluations of the programme. While we identified positive aspects of online delivery, this mode did not entirely suit everyone's needs. Implications: From the current findings, we can make several recommendations to develop online support for autistic people. First, flexibility is key. To make support accessible and inclusive to a broad range of autistic people, the option for attendees to engage in-person, online or in hybrid formats should be considered. Second, if delivering support online, the use of breakout rooms should be carefully considered. While participants appreciated the opportunity to meet different people, some participants found the unpredictability and lack of scaffolding associated with breakout rooms challenging. To mitigate these challenges, groups could be pre-determined and shared with the attendees in advance (although consideration should be given to how the groups 'fit' together, and whether groupings should be changed at set intervals). Gentle warnings should also be given to those in breakout rooms, to alert them of the need to re-join the main group. Finally, support with technological aspects relating to engagement should be prioritised.

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: 3 Oct 2026 01:00.

Cited references
18
With a DOI
18
Without a DOI, from raw bibliography text
0
9 / 18 (50.0%) cited references include at least one author identified as autistic.
References with data to complete
0 / 18 (0.0%)
References with detected author names
18 / 18 (100.0%)
Without detected author names
0
Without a structured title
0
Without a stable identifier
0
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
87
From DOI or external metadata
87
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
63 / 87 (72.4%) names are linked to an author already present in AutiHub. 24 / 87 (27.6%) names are not yet linked.
Names linked to a person identified as autistic
22 / 87 (25.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 22 / 63 (34.9%). Distinct people identified as autistic: 18 / 73 (24.7%).
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  2. Virginia Braun , Victoria Clarke (2019). Reflecting on reflexive thematic analysis . Qualitative Research in Sport, Exercise and Health, 11(4), 589-597. Informa UK Limited.
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    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.
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  6. Damian Milton * (2020). From tokenism to full participation . In The Routledge Handbook of Service User Involvement in Human Services Research and Education (pp. 440-445). Routledge.
    Type: Book chapter DOI: 10.4324/9780429433306-45 OpenAlex: https://openalex.org/W3044244701
    AutiHub · Autistic Autism Scholarship Project AutiHub · Documentation center Crossref OpenAlex OpenCitations
  7. Laura Foran Lewis (2016). Exploring the Experience of Self-Diagnosis of Autism Spectrum Disorder in Adults . Archives of Psychiatric Nursing, 30(5), 575-580. Elsevier BV.
    Type: Article DOI: 10.1016/j.apnu.2016.03.009 OpenAlex: https://openalex.org/W2326293265
    Crossref OpenAlex OpenCitations
  8. Lorelli S. Nowell , Jill M. Norris , Deborah E. White , Nancy J. Moules (2017). Thematic Analysis . International Journal of Qualitative Methods, 16(1), 1. SAGE Publications.
    Type: Article DOI: 10.1177/1609406917733847 OpenAlex: https://openalex.org/W2763766763
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  11. Lauren Harris , Daniel Gilmore , Christopher Hanks , Daniel Coury , Susan Moffatt-Bruce , Jennifer H Garvin et al. (2022). “It was surprisingly equivalent to the appointment I had in person”: Advantages and disadvantages of synchronous telehealth for delivering primary care for autistic adults . Autism, 26(6), 1573-1580. SAGE Publications.
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    Crossref OpenAlex OpenCitations
  12. 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. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319853442 OpenAlex: https://openalex.org/W2947577397
    Crossref OpenAlex OpenCitations
  15. Anke Scheeren , Laura Crane , Melanie Heyworth * , Elizabeth Pellicano (2023). Impact of the COVID-19 Pandemic on Autistic Adults: a Scoping Review . Current Developmental Disorders Reports, 10(1), 92-122. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40474-023-00268-6 OpenAlex: https://openalex.org/W4318594639
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  17. Hadar Nesher Shoshan , Wilken Wehrt (2022). Understanding “Zoom fatigue”: A mixed‐method approach . Applied Psychology, 71(3), 827-852. Wiley.
    Type: Article DOI: 10.1111/apps.12360 OpenAlex: https://openalex.org/W3211265755
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  18. Sarah Wigham , Barry Ingham , Ann Le Couteur , Colin Wilson , Ian Ensum , Jeremy R. Parr (2023). Consensus statements on optimal adult post-autism diagnosis support and services: Delphi process following a UK survey of autistic adults, relatives and clinicians . Autism, 27(2), 344-355. SAGE Publications.
    Type: Article DOI: 10.1177/13623613221097502 OpenAlex: https://openalex.org/W4282038751
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