Supporting Newly Identified or Diagnosed Autistic Adults: An Initial Evaluation of an Autistic-Led Programme

Crane, L., Hearst, C., Ashworth, M., Davies, J., & Hill, E. L. (2020). Supporting Newly Identified or Diagnosed Autistic Adults: An Initial Evaluation of an Autistic-Led Programme. Journal of Autism and Developmental Disorders, 51(3), 892-905. https://doi.org/10.1007/s10803-020-04486-4

Publication date: 7 Apr 2020 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English

This publication is integrated into AutiHub through:

Authors

Publication authors
5
Publication authors identified as autistic
1 / 5 (20.0%)

Abstract

Sixteen adults (diagnosed or self-identified as autistic) participated in one of two iterations of a ten-week autistic-led programme, aimed at helping autistic adults learn more about autism within a peer group context. Motivations for taking part in the programme included a desire for: (1) exploration of autism; (2) empowerment; and (3) the development of practical strategies and coping mechanisms. Interviews were conducted upon completion of the programme and again 6 months later. Using thematic analysis, three themes were identified: (1) appreciation of the autistic-led nature of the programme; (2) unity in diversity; and (3) developing a positive, practical outlook on autism. These promising initial results highlight the value of autistic-led peer support for those recently diagnosed/identified as autistic.

Bibliography cited by this reference

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

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
39
Total cited references integrated for this publication.
Cited references with an identified autistic author
4 / 39 (10.3%)
Cited author occurrences identified as autistic
7 / 160 (4.4%)
Among occurrences linked to AutiHub author records: 7 / 81 (8.6%). Distinct cited authors identified as autistic: 7 / 127 (5.5%).
Cited author occurrences linked to AutiHub author records
81 / 160 (50.6%)
Distinct linked cited authors: 55 / 127 (43.3%)
Linked cited-author occurrences not identified as autistic
74 / 81 (91.4%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 74 / 160 (46.2%). Distinct linked cited authors not identified as autistic: 48 / 55 (87.3%).
  1. Philippa Moss , Patricia Howlin , Sarah Savage , Patrick Bolton , Michael Rutter (2015). Self and informant reports of mental health difficulties among adults with autism findings from a long-term follow-up study . Autism, 19(7), 832-841. SAGE Publications.
    Crossref OpenAlex OpenCitations
  2. Gail A. Alvares , Keely Bebbington , Dominique Cleary , Kiah Evans , Emma J Glasson , Murray T. Maybery et al. (2020). The misnomer of ‘high functioning autism’: Intelligence is an imprecise predictor of functional abilities at diagnosis . Autism, 24(1), 221-232. SAGE Publications.
    Crossref OpenAlex OpenCitations
  3. Sue Fletcher‐Watson , Francesca Happé (2019). Autism . Routledge.
    Crossref OpenAlex OpenCitations
  4. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  5. Michael Ayres , Jeremy R. Parr , Jacqui Rodgers , David Mason , Leah Avery , Darren Flynn (2018). A systematic review of quality of life of adults on the autism spectrum . Autism, 22(7), 774-783. SAGE Publications.
    Crossref OpenAlex OpenCitations
  6. Tatja Hirvikoski , Ellenor Mittendorfer-Rutz , Marcus Boman , Henrik Larsson , Paul Lichtenstein , Sven Bölte (2016). Premature mortality in autism spectrum disorder . British Journal of Psychiatry, 208(3), 232-238. Royal College of Psychiatrists.
    Crossref OpenAlex OpenCitations
  7. Kate Gordon , Marianna Murin , Ozlem Baykaner , Laura Roughan , Vaan Livermore‐Hardy , David Skuse et al. (2015). A randomised controlled trial of PEGASUS, a psychoeducational programme for young people with high‐functioning autism spectrum disorder . Journal of Child Psychology and Psychiatry, 56(4), 468-476. Wiley.
    Crossref OpenAlex OpenCitations
  8. Sarah Bargiela , Robyn Steward *Autistic author. Learn more… , Will Mandy (2016). The Experiences of Late-diagnosed Women with Autism Spectrum Conditions: An Investigation of the Female Autism Phenotype . Journal of Autism and Developmental Disorders, 46(10), 3281-3294. Springer Science and Business Media LLC.
    AutiHub · Autistic Scholars Crossref OpenAlex OpenCitations
  9. Claire L Rogers , Lorna Goddard , Elisabeth L. Hill , Lucy A Henry , Laura Crane (2016). Experiences of diagnosing autism spectrum disorder: A survey of professionals in the United Kingdom . Autism, 20(7), 820-831. SAGE Publications.
    Crossref OpenAlex OpenCitations
  10. 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
  11. Steven D. Stagg , Hannah Belcher (2019). Living with autism without knowing: receiving a diagnosis in later life . Health Psychology and Behavioral Medicine, 7(1), 348-361. Informa UK Limited.
    Crossref OpenAlex OpenCitations
  12. 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.
    Crossref OpenAlex OpenCitations
  13. Stefan N. Hansen , Diana E. Schendel , Erik T. Parner (2015). Explaining the Increase in the Prevalence of Autism Spectrum Disorders . JAMA Pediatrics, 169(1), 56. American Medical Association (AMA).
    Crossref OpenAlex OpenCitations
  14. 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 . Journal of Autism and Developmental Disorders, 48(11), 3761-3772. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  15. 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
  16. Gael I. Orsmond , Paul Shattuck , Benjamin P. Cooper , Paul R. Sterzing , Kristy A. Anderson (2013). Social Participation Among Young Adults with an Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 43(11), 2710-2719. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  17. 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
  18. John-Joe Dawson-Squibb , Eugene Lee Davids , Petrus J. de Vries (2019). Scoping the evidence for EarlyBird and EarlyBird Plus, two United Kingdom-developed parent education training programmes for autism spectrum disorder . Autism, 23(3), 542-555. SAGE Publications.
    Crossref OpenAlex OpenCitations
  19. Katharine E. Zuckerman , Brianna Sinche , Angie Mejia , Martiza Cobian , Thomas Becker , Christina Nicolaidis (2014). Latino Parents' Perspectives on Barriers to Autism Diagnosis . Academic Pediatrics, 14(3), 301-308. Elsevier BV.
    Crossref OpenAlex OpenCitations
  20. Laura Crane , I. A. Davidson , Rachel Prosser , Elizabeth Pellicano (2019). Understanding psychiatrists' knowledge, attitudes and experiences in identifying and supporting their patients on the autism spectrum: online survey . BJPsych Open, 5(3), e33-e33. Royal College of Psychiatrists.
    Crossref OpenAlex OpenCitations
  21. Catherine J. Crompton , Sue Fletcher‐Watson , Danielle Ropar (2019). Autistic peer to peer information transfer is highly effective. Center for Open Science.
    Crossref OpenAlex OpenCitations
  22. Paul Shattuck , Sarah Carter Narendorf , Benjamin Cooper , Paul R. Sterzing , Mary Wagner , Julie Lounds Taylor (2012). Postsecondary Education and Employment Among Youth With an Autism Spectrum Disorder . Pediatrics, 129(6), 1042-1049. American Academy of Pediatrics (AAP).
    Crossref OpenAlex OpenCitations
  23. Lorcan Kenny , Caroline Hattersley , Bonnie Molins , Carole Buckley , Carol Povey , Elizabeth Pellicano (2016). Which terms should be used to describe autism? Perspectives from the UK autism community . Autism, 20(4), 442-462. SAGE Publications.
    Crossref OpenAlex OpenCitations
  24. Léo Kanner (1943). Autistic disturbances of affective contact . Nervous Child, 2(3), 217.
    Type: Article OpenAlex: https://openalex.org/W2255119171
    OpenAlex
  25. J Gould (2011). Gould, J., & Ashton-Smith, J. (2011). Missed diagnosis or misdiagnosis? Girls and women on the autism spectrum. Good Autism Practice (GAP), 12(1), 34–41. Good Autism Practice (GAP), 12(1), 34.
    Type: Other
    Crossref
  26. Ginny Russell , Will Mandy , Daisy Elliott , Rhianna White , Tom Pittwood , Tamsin Ford (2019). Selection bias on intellectual ability in autism research: a cross-sectional review and meta-analysis . Molecular Autism, 10(1), 9. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  27. Francesca Happé , Hassan Mansour , Pippa Barrett , Tony Brown , Patricia Abbott , Rebecca A. Charlton (2016). Demographic and Cognitive Profile of Individuals Seeking a Diagnosis of Autism Spectrum Disorder in Adulthood . Journal of Autism and Developmental Disorders, 46(11), 3469-3480. Springer Science and Business Media LLC.
    Crossref OpenAlex OpenCitations
  28. Silvana Unigwe , Carole Buckley , Laura Crane , Lorcan Kenny , Anna Remington , Elizabeth Pellicano (2017). GPs’ confidence in caring for their patients on the autism spectrum: an online self-report study . British Journal of General Practice, 67(659), e445-e452. Royal College of General Practitioners.
    Crossref OpenAlex OpenCitations
  29. Brett Heasman , Alex Gillespie (2019). Neurodivergent intersubjectivity: Distinctive features of how autistic people create shared understanding . Autism, 23(4), 910-921. SAGE Publications.
    Crossref OpenAlex OpenCitations
  30. 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
  31. L Kanner (1943). Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child: Journal of Psychopathology, Psychotherapy, Mental Hygiene, and Guidance of the Child, 2(3), 217–250. Nervous Child: Journal of Psychopathology, Psychotherapy, Mental Hygiene, and Guidance of the Child, 2(3), 217.
    Type: Other
    Crossref
  32. Susan Fletcher-Watson , Francesca Happé (2019). Autism: A New Introduction to Psychological Theory and Current Debate .
    Type: Book OpenAlex: https://openalex.org/W2914599441
    OpenAlex
  33. NICE. (2012). Autism spectrum disorder in adults: Diagnosis and management. London: National Institute of Clinical Excellence. https://www.nice.org.uk/guidance/cg142
    Type: Other
    Crossref
  34. Shapiro, J. P. (1994). No Pity. Times Books.
    Type: Other
    Crossref
  35. Sinclair J (1999) Why I Dislike ‘Person-first’ Language: Jim Sinclair’s website. https://web.archive.org/web/20090210190652/ https://web.syr.edu/~jisincla/person_first.htm .
    Type: Other
    Crossref
  36. L Williams (2019). Being Autistic: Nine adults share their journeys from discovery to acceptance . Being Autistic: nine adults share their journeys from discovery to acceptance, 11.
    Type: Other
    Crossref