Autism Transition to Adulthood Groups (ATAG): protocol for a feasibility RCT of a new peer-group intervention to promote successful transition to adulthood for autistic young people
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 markerCooper, K., Burnley, A., Allain, L., Beresford, B., Crane, L., Vazquez Morales, M., Portway, L., Redmayne, B., Russell, A., & Mandy, W. (2024). Autism Transition to Adulthood Groups (ATAG): protocol for a feasibility RCT of a new peer-group intervention to promote successful transition to adulthood for autistic young people. BMJ Open, 14(11), e089802. https://doi.org/10.1136/bmjopen-2024-089802
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Authors
Abstract
Introduction Autism is a lifelong neurodevelopmental condition diagnosed on the basis of differences in social communication, interaction and repetitive behaviours, including sensory sensitivities. Autistic individuals without intellectual disabilities often face barriers to positive adult outcomes and are at high risk for poor health, including mental health issues, which could be mitigated by improving well-being. Young people should receive support to increase their well-being during the transition to adulthood, when social and family support often reduces. This is the protocol for a feasibility randomised controlled trial (RCT) of an online peer-group intervention, ‘Understanding You, Discovering You’ (UYDY). Objectives included assessing recruitment and retention rates, acceptability of procedures, characterising usual care, assessing the acceptability of UYDY and care as usual (CAU) and calculating outcome measure variances for a full trial. Methods and analysis This two-arm parallel feasibility RCT includes a nested qualitative evaluation. Seventy participants aged 16–25 years old with a clinical autism diagnosis will be randomised on a 1:1 basis to UYDY or CAU. Exclusion criteria include risk of harm to self or others, receipt of postdiagnostic support in the past 12 months, and literacy levels such that the written session materials are not accessible. UYDY, a 6-week online peer-group intervention, will cover topics such as understanding autism, problem-solving and accessing services, and is facilitated by an autistic person and social care professionals. The main outcomes from the feasibility trial will be collecting data on (1) recruitment and retention rates; (2) the acceptability of randomisation and outcome measurement procedures; (3) CAU accessed by participants; (4) acceptability of the interventions; (5) clinical outcome measure variances (see below). See the Statistical methods section below for how this will be assessed in the current study. Clinical outcomes will be measured at baseline, and 8, 16 and 24 weeks post-randomisation. The primary clinical outcome is well-being, assessed using the Warwick Edinburgh Mental Wellbeing Scale. Secondary clinical outcomes include autism social identification, quality of life, social support and loneliness. Adverse events will be monitored and reported. Carer impact will also be measured. Participants will be recruited from England and Wales via charities and NHS services. Qualitative interviews will be conducted to explore the acceptability of trial participation including randomisation and the interventions. Ethics and dissemination Ethical approval has been obtained from the HRA and NHS REC (23/WA/0113). Informed consent will be collected from all participants (see online supplemental material for an example consent form). Results will inform the design of a full RCT and will be disseminated through peer-reviewed journals, conferences, and stakeholder events. Trial registration number ISRCTN10513626.
Bibliography cited by this reference
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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 11:55.
- With a DOI
- 35
- Without a DOI, from raw bibliography text
- 6
- References with detected author names
- 35 / 41 (85.4%)
- Without detected author names
- 6
- Without a structured title
- 6
- Without a stable identifier
- 6
- References with raw author names still to review
- 6
- References with external metadata lookup issues
- 0
- From DOI or external metadata
- 236
- From validated raw bibliography text
- 0
- Raw names already validated
- 0
- Raw names still to review
- 12
-
Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.Crossref OpenAlex OpenCitations
-
(n.d.). American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 2013. Available: https://psychiatryonline.org/doi/book/10 . 1176/appi.books. 9780890425596Type: OtherCrossref
-
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
-
Patricia Howlin , Philippa Moss , Sarah Savage , Michael Rutter (2013). Social Outcomes in Mid- to Later Adulthood Among Individuals Diagnosed With Autism and Average Nonverbal IQ as Children . Journal of the American Academy of Child & Adolescent Psychiatry, 52(6), 572-581.e1. Elsevier BV.Crossref OpenAlex OpenCitations
-
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
-
Aparna Nadig , Tara Flanagan , Keeley White , Sahir Bhatnagar (2018). Results of a RCT on a Transition Support Program for Adults with ASD: Effects on Self‐Determination and Quality of Life . Autism Research, 11(12), 1712-1728. Wiley.Crossref OpenAlex OpenCitations
-
Sheldon Cohen , Robin Mermelstein , Tom Kamarck , Harry M. Hoberman (1985). Measuring the Functional Components of Social Support . In Social Support: Theory, Research and Applications (pp. 73-94). Springer Netherlands.Crossref OpenAlex OpenCitations
-
Althea Z Valentine , Sophie S Hall , Emma Young , Beverley J Brown , Madeleine J Groom , Chris Hollis et al. (2021). Implementation of Telehealth Services to Assess, Monitor, and Treat Neurodevelopmental Disorders: Systematic Review . Journal of Medical Internet Research, 23(1), e22619. JMIR Publications Inc..Crossref OpenAlex OpenCitations
-
Alissa Levy , Adrienne Perry (2011). Outcomes in adolescents and adults with autism: A review of the literature . Research in Autism Spectrum Disorders, 5(4), 1271-1282. Elsevier BV.Crossref OpenAlex OpenCitations
-
Meng-Chuan Lai , Caroline Kassee , Richard Besney , Sarah Bonato , Laura Hull , Will Mandy et al. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis . Lancet Psychiatry, 6(10), 819. Elsevier BV.Crossref OpenAlex OpenCitations
-
Lindsay Shea , Mi-Yeet Wong , Wei Song , Katy Kaplan , Disha Uppal , Mark S. Salzer (2024). Autistic-Delivered Peer Support: A Feasibility Study . Journal of Autism and Developmental Disorders, 54(2), 409-422. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
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).Crossref OpenAlex OpenCitations
-
Ewelina Rydzewska , Laura A Hughes-McCormack , Christopher Gillberg , Angela Henderson , Cecilia MacIntyre , Julie Rintoul et al. (2019). Prevalence of sensory impairments, physical and intellectual disabilities, and mental health in children and young people with self/proxy-reported autism: Observational study of a whole country population . Autism, 23(5), 1201-1209. SAGE Publications.Crossref OpenAlex OpenCitations
-
Stacey E. Rand , Juliette N. Malley , Ann P. Netten , Julien E. Forder (2015). Factor structure and construct validity of the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer) . Quality of Life Research, 24(11), 2601-2614. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Joep van Agteren , Matthew Iasiello , Laura Lo , Jonathan Bartholomaeus , Zoe Kopsaftis , Marissa Carey et al. (2021). A systematic review and meta-analysis of psychological interventions to improve mental wellbeing . Nature Human Behaviour, 5(5), 631-652. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Matthew Iasiello , Joseph van Agteren , Corey L.M. Keyes , Eimear Muir Cochrane (2019). Positive mental health as a predictor of recovery from mental illness . Journal of Affective Disorders, 251, 227-230. Elsevier BV.Crossref OpenAlex OpenCitations
-
Colin Wayne Leach , Martijn van Zomeren , Sven Zebel , Michael L. W. Vliek , Sjoerd F. Pennekamp , Bertjan Doosje et al. (2008). Group-level self-definition and self-investment: A hierarchical (multicomponent) model of in-group identification. Journal of Personality and Social Psychology, 95(1), 144-165. American Psychological Association (APA).Crossref OpenAlex OpenCitations
-
Fábio Tremea Cichelero , Denis Martinez , Sandra Costa Fuchs , Miguel Gus , Leila Beltrami Moreira , Flávio Danni Fuchs (2014). The effect of antihypertensive agents on sleep apnea: protocol for a randomized controlled trial . Trials, 15(1), 1-1. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Susan M Sawyer , Peter S Azzopardi , Dakshitha Wickremarathne , George C Patton (2018). The age of adolescence . The Lancet Child & Adolescent Health, 2(3), 223-228. Elsevier BV.Crossref OpenAlex OpenCitations
-
Jade Davies , Kate Cooper , Estelle Killick , Evelyn Sam , Molly Healy *Autistic author. Learn more… , Grace Thompson *Autistic author. Learn more… et al. (2023). Autistic identity: A systematic review of quantitative research . Autism Research, 1. Center for Open Science.Crossref OpenAlex OpenCitations
-
Carly Moser , Leann Smith DaWalt , Meghan M Burke , Julie Lounds Taylor (2024). Emerging adulthood in autism: Striving for independence or interdependence? Autism, 28(6), 1325-1327. SAGE Publications.Crossref OpenAlex OpenCitations
-
Cameron A Maitland , Sinead Rhodes , Anne O’Hare , Mary E. Stewart (2021). Social identities and mental well-being in autistic adults . Autism, 25(6), 1771-1783. SAGE Publications.Crossref OpenAlex OpenCitations
-
A.-W. Chan , J. M. Tetzlaff , P. C. Gotzsche , Doug Altman , H. Mann , J. A. Berlin et al. (2013). SPIRIT 2013 explanation and elaboration: guidance for protocols of clinical trials . BMJ, 346(jan08 15), e7586-e7586. BMJ.Crossref OpenAlex OpenCitations
-
Marion Trousselard , Dominique Steiler , Frédéric Dutheil , Damien Claverie , Frédéric Canini , Fabien Fenouillet et al. (2016). Validation of the Warwick-Edinburgh Mental Well-Being Scale (WEMWBS) in French psychiatric and general populations . Psychiatry Research, 245, 282-290. Elsevier BV.Crossref OpenAlex OpenCitations
-
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
-
Anna Backman , Are Mellblom , Elisabet Norman-Claesson , Gunilla Keith-Bodros , Maj Frostvittra , Sven Bölte et al. (2018). Internet-delivered psychoeducation for older adolescents and young adults with autism spectrum disorder (SCOPE): An open feasibility study . Research in Autism Spectrum Disorders, 54, 51-64. Elsevier BV.Crossref OpenAlex OpenCitations
-
Kate Cooper , Laura G. E. Smith , Ailsa Russell (2017). Social identity, self‐esteem, and mental health in autism . European Journal of Social Psychology, 47(7), 844-854. Wiley.Crossref OpenAlex OpenCitations
-
(n.d.). Scatting ML, Micai M, Ciaramella A, et al. Real-world experiences in autistic adult diagnostic services and post-diagnostic support and alignment with services guidelines: Results from the ASDEU study. J Autism Dev Disord 2021;1–18.Type: OtherCrossref
-
Laura Crane , Caroline Hearst *Autistic author. Learn more… , Maria Ashworth , Jade Davies (2023). Evaluating the online delivery of an autistic-led programme to support newly diagnosed or identified autistic adults . Autism & Developmental Language Impairments, 8, 23969415231189608. SAGE Publications.
-
(n.d.). SUPPORT surrounding diagnosis an inquiry into pre-and post- support for the autism diagnosis pathway. 2024. Available: https://irp.cdn-website.com/79f83829/files/uploaded/westminster-commission-on-autism-report-support-surrounding-diagnosis.pdfType: OtherCrossref
-
Tori Haar *Autistic author. Learn more… , Charlotte Brownlow , Gabrielle Hall *Autistic author. Learn more… , Melanie Heyworth *Autistic author. Learn more… , Wenn Lawson *Autistic author. Learn more… , Rebecca E. Poulsen *Autistic author. Learn more… et al. (2025). ‘We have so much to offer’: Community members’ perspectives on autism research . Autism, 29(9), 2254. SAGE Publications.AutiHub · Autistic Autism Scholarship Project AutiHub · Documentation center Crossref OpenAlex OpenCitations
-
Laura Crane , Caroline Hearst *Autistic author. Learn more… , Maria Ashworth , Jade Davies , Elisabeth L. Hill (2021). 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. Springer Science and Business Media LLC.
-
Laura Hull , Will Mandy , Meng-Chuan Lai , Simon Baron-Cohen , Carrie T. Allison , P. Smith et al. (2019). Development and Validation of the Camouflaging Autistic Traits Questionnaire (CAT-Q) . Journal of Autism and Developmental Disorders, 49(3), 819-833. Springer Science and Business Media LLC.Crossref OpenAlex OpenCitations
-
Ailsa Russell , Daisy M Gaunt , Kate Cooper , Stephen Barton , Jeremy Horwood , David Kessler et al. (2020). The feasibility of low-intensity psychological therapy for depression co-occurring with autism in adults: The Autism Depression Trial (ADEPT) – a pilot randomised controlled trial . Autism, 24(6), 1360-1372. SAGE Publications.Crossref OpenAlex OpenCitations
-
(n.d.). Erikson EH. Childhood and Society 1st ed. Norton & Company, 1950.Type: OtherCrossref
-
Shawna M. Gray , Carly A. McMorris , Tanya E. Mudry , Adam W. McCrimmon (2024). An exploration of diagnostic identity for autistic individuals: A systematic review of existing literature . Research in Autism Spectrum Disorders, 114, 102394. Elsevier BV.Crossref OpenAlex OpenCitations
-
Maria Luisa Scattoni , Martina Micai , Antonio Ciaramella , Tommaso Salvitti , Francesca Fulceri , Laura Maria Fatta et al. (2021). Real-World Experiences in Autistic Adult Diagnostic Services and Post-diagnostic Support and Alignment with Services Guidelines: Results from the ASDEU Study . Journal of Autism and Developmental Disorders, 51(11), 4129-4146. Springer Science and Business Media LLC.OpenAlex
-
(n.d.). Davies J, Redmayne B, Allain L, et al. n.d. The co-design and initial evaluation of a peer support program for autistic young adults. Autism Adulthood.Type: OtherCrossref
-
Dan Russell , Letitia A. Peplau , Carolyn E. Cutrona (1980). The revised UCLA Loneliness Scale: Concurrent and discriminant validity evidence. Journal of Personality and Social Psychology, 39(3), 472-480. American Psychological Association (APA).Crossref OpenAlex OpenCitations
-
Jade Davies , Ben Redmayne , Leon Allain , Lucy Portway *Autistic author. Learn more… , Will Mandy , Kate Cooper et al. (2023). The Codesign and Initial Evaluation of a Peer Support Program for Autistic Young Adults . Center for Open Science.OpenAlex
-
(n.d.). Beecham J, Knapp M. The Client Service Receipt Inventory. Discussion Paper 1492. University of Kent at Canterbury: Personal Social Services Research Unit, 1995.Type: OtherCrossref