Co-design of an NHS primary care health check for autistic adults

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

Taylor, H., Ingham, B., Mason, D., Finch, T., Wilson, C., Scarlett, C., Moss, S., Buckley, C., Urbanowicz, A., Raymaker, D. M., Seiboth, C., Lees, R., Garland, D., Osborne, M., Lennox, N., Cooper, S. A., Nicolaidis, C., & Parr, J. R. (2022). Co-design of an NHS primary care health check for autistic adults. Autism, 27(4), 1079-1091. https://doi.org/10.1177/13623613221132921

Journal or book title
Autism
Publisher
SAGE Publications
Volume
27
Issue
4
Pages
1079-1091
Publication date: 21 Nov 2022 Added to AutiHub: 6 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
18
Publication authors identified as autistic
2 / 18 (11.1%)
  1. Helen Taylor
  2. Barry Ingham
  3. David Mason *
  4. Tracy Finch
  5. Colin Wilson
  6. Clare Scarlett
  1. Sebastian Moss
  2. Carole Buckley
  3. Anna Urbanowicz
  4. Dora M. Raymaker *
  5. Charlotte Seiboth
  6. Rhianna Lees
  1. Deborah Garland
  2. Malcolm Osborne
  3. Nicholas Lennox
  4. Sally-Ann Cooper
  5. Christina Nicolaidis
  6. Jeremy R. Parr

Abstract

Autistic people experience more health conditions and earlier mortality. This study investigated views about a primary care health check for autistic adults to inform its design. Fifty-one people participated in consultation groups and interviews, comprising autistic adults (some with co-occurring intellectual disabilities), adults with intellectual disabilities, supporters and health professionals. Participants wanted the health check to cover physical and mental health and social functioning. They emphasised the importance of sharing information about individual needs and associated adjustments before the health check. They highlighted the need to change the way healthcare services communicate with autistic people, such as reducing phone contact and booking appointments online. They wanted individual choice in how the health check was completed, with video call or email offered alongside face-to-face. Participants raised the need for further training of primary care staff on autism, to highlight the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently. Clinicians raised questions about the capacity of mental health and social care services to meet the additional needs potentially identified through the health check. This study represents a key step in the development and co-design of a UK primary care health check for autistic people. Lay abstract Autistic people are on average more likely to experience poor health than people who are not autistic. Health checks have been shown to improve access to effective healthcare. This study investigated people’s views about a primary care health check for autistic adults. We held discussion groups and interviewed autistic adults, adults with intellectual disabilities, supporters and health professionals. People wanted the health check to look at a person’s physical and mental health, and how they were doing socially. They thought people should be able to share information about their needs and the reasonable adjustments they would like before the health check. They wanted healthcare services to change the way they communicate with autistic people, such as being able to book appointments online rather than by telephone. They wanted a choice in how the health check was completed, with video call or email offered as well as face-to-face appointments. People thought further training of primary care staff on autism was needed, to increase awareness of the diversity of experiences of autistic people and ways in which difficulties, such as pain, may present differently to non-autistic people. Clinicians raised questions about whether mental health and social care services could meet the additional needs that might be identified through the health check. We used this information to design an NHS primary care health check for autistic people in collaboration with autistic people, supporters and health professionals.

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 17:07.

Cited references
34
With a DOI
31
Without a DOI, from raw bibliography text
3
9 / 34 (26.5%) cited references include at least one author identified as autistic.
References with data to complete
4 / 34 (11.8%)
References with detected author names
31 / 34 (91.2%)
Without detected author names
3
Without a structured title
3
Without a stable identifier
3
References with raw author names still to review
2
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
212
From DOI or external metadata
212
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
2
103 / 212 (48.6%) names are linked to an author already present in AutiHub. 109 / 212 (51.4%) names are not yet linked.
Names linked to a person identified as autistic
24 / 212 (11.3%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 24 / 103 (23.3%). Distinct people identified as autistic: 9 / 153 (5.9%).
  1. Virginia Braun , Victoria Clarke (2006). Using thematic analysis in psychology . Qualitative Research in Psychology, 3(2), 77-101. Informa UK Limited.
    Type: Article DOI: 10.1191/1478088706qp063oa OpenAlex: https://openalex.org/W1979290264
    Crossref OpenAlex OpenCitations
  2. Nicholas Lennox , Chris Bain , Therese Rey‐Conde , Miriam Taylor , Frances M. Boyle , David M. Purdie et al. (2010). Cluster Randomized‐Controlled Trial of Interventions to Improve Health for Adults with Intellectual Disability Who Live in Private Dwellings . Journal of Applied Research in Intellectual Disabilities, 23(4), 303-311. Wiley.
    Type: Article DOI: 10.1111/j.1468-3148.2009.00533.x OpenAlex: https://openalex.org/W2076362598
    Crossref OpenAlex OpenCitations
  4. 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
  5. 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.
    Type: Article DOI: 10.1192/bjp.bp.114.160192 OpenAlex: https://openalex.org/W2168424072
    Crossref OpenAlex OpenCitations
  6. Susan L. Morrow (2005). Quality and trustworthiness in qualitative research in counseling psychology . Journal of Counseling Psychology, 52(2), 250. American Psychological Association (APA).
    Type: Article DOI: 10.1037/0022-0167.52.2.250 OpenAlex: https://openalex.org/W2017532745
    Crossref OpenAlex OpenCitations
  8. on behalf of the GrandStand, Safe Step and Teenage Girls on the Move Research Groups , Calum F. Leask , Marlene Sandlund , Dawn A. Skelton , Teatske M. Altenburg , Greet Cardon et al. (2019). Framework, principles and recommendations for utilising participatory methodologies in the co-creation and evaluation of public health interventions . Research Involvement and Engagement, 5(1), 2-2. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1186/s40900-018-0136-9 OpenAlex: https://openalex.org/W2920129527
    Crossref OpenAlex OpenCitations
  9. Sally-Ann Cooper , Jill Morrison , Linda M Allan , Alex McConnachie , Nicola Greenlaw , Craig A Melville et al. (2014). Practice nurse health checks for adults with intellectual disabilities: a cluster-design, randomised controlled trial . The Lancet Psychiatry, 1(7), 511-521. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(14)00078-9 OpenAlex: https://openalex.org/W2106906578
    Crossref OpenAlex OpenCitations
  11. Lisa A. Croen , Ousseny Zerbo , Yinge Qian , Maria L Massolo , Steve Rich , Stephen Sidney et al. (2015). The health status of adults on the autism spectrum . Autism, 19(7), 814-823. SAGE Publications.
    Type: Article DOI: 10.1177/1362361315577517 OpenAlex: https://openalex.org/W2108322879
    Crossref OpenAlex OpenCitations
  12. Whitney Schott , Stacy Nonnemacher , Lindsay Shea (2021). Service Use and Unmet Needs Among Adults with Autism Awaiting Home- and Community-Based Medicaid Services . Journal of Autism and Developmental Disorders, 51(4), 1188-1200. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-020-04593-2 OpenAlex: https://openalex.org/W3042466321
    Crossref OpenAlex OpenCitations
  13. Alison Jayne Doherty , Helen Atherton , Paul Boland , Richard P. Hastings , Lucy Hives , Kerry Hood et al. (2020). Barriers and facilitators to primary health care for people with intellectual disabilities and/or autism: an integrative review . BJGP Open, 4(3), bjgpopen20X101030. Royal College of General Practitioners.
    Type: Article DOI: 10.3399/bjgpopen20x101030 OpenAlex: https://openalex.org/W2989625113
    Crossref OpenAlex OpenCitations
  14. Nicholas Lennox , Lyn McPherson , Chris Bain , Michael O'Callaghan , Suzanne Carrington , Robert S Ware (2016). A health advocacy intervention for adolescents with intellectual disability: a cluster randomized controlled trial . Developmental Medicine & Child Neurology, 58(12), 1265-1272. Wiley.
    Type: Article DOI: 10.1111/dmcn.13174 OpenAlex: https://openalex.org/W2462246544
    Crossref OpenAlex OpenCitations
  15. Daniel Gilmore , Morgan Krantz , Lindy Weaver , Brittany N. Hand (2022). Healthcare service use patterns among autistic adults: A systematic review with narrative synthesis . Autism, 26(2), 317-331. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211060906 OpenAlex: https://openalex.org/W4200018858
    Crossref OpenAlex OpenCitations
  16. Nicholas Lennox , Christopher Bain , Therese Rey-Conde , David Purdie , Robert Bush , Nirmala Pandeya (2007). Effects of a comprehensive health assessment programme for Australian adults with intellectual disability: a cluster randomized trial . International Journal of Epidemiology, 36(1), 139-146. Oxford University Press (OUP).
    Type: Article DOI: 10.1093/ije/dyl254 OpenAlex: https://openalex.org/W2124727073
    Crossref OpenAlex OpenCitations
  17. GOV. UK. (2021). National strategy for autistic children, young people and adults: 2021 to 2026. https://www.gov.uk/government/publications/national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026
    Type: Other
    Crossref
  18. Diana E. Schendel , Morten Overgaard , Jakob Christensen , Lene Hjort , Meta Jørgensen , Mogens Vestergaard et al. (2016). Association of Psychiatric and Neurologic Comorbidity With Mortality Among Persons With Autism Spectrum Disorder in a Danish Population . JAMA Pediatrics, 170(3), 243. American Medical Association (AMA).
    Type: Article DOI: 10.1001/jamapediatrics.2015.3935 OpenAlex: https://openalex.org/W2238708434
    Crossref OpenAlex OpenCitations
  19. Brittany N. Hand , Amber Angell , Lauren Harris , Laura Arnstein Carpenter (2020). Prevalence of physical and mental health conditions in Medicare-enrolled, autistic older adults . Autism, 24(3), 755-764. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319890793 OpenAlex: https://openalex.org/W2990129335
    Crossref OpenAlex OpenCitations
  21. Helene Joffe (2011). Thematic Analysis . In Qualitative Research Methods in Mental Health and Psychotherapy (pp. 209-223). Wiley.
    Type: Book chapter DOI: 10.1002/9781119973249.ch15 OpenAlex: https://openalex.org/W2911758050
    Crossref OpenAlex OpenCitations
  23. Oliver T. Mytton , Christopher Jackson , Arno Steinacher , Anna Goodman , Claudia Langenberg , Simon Griffin et al. (2018). The current and potential health benefits of the National Health Service Health Check cardiovascular disease prevention programme in England: A microsimulation study . PLOS Medicine, 15(3), e1002517. Public Library of Science (PLoS).
    Type: Article DOI: 10.1371/journal.pmed.1002517 OpenAlex: https://openalex.org/W2792615715
    Crossref OpenAlex OpenCitations
  26. Ousseny Zerbo , Yinge Qian , Thomas Ray , Steve Sidney , Steve Rich , Maria L Massolo et al. (2019). Health Care Service Utilization and Cost Among Adults with Autism Spectrum Disorders in a U.S. Integrated Health Care System . Autism in Adulthood, 1(1), 27-36. SAGE Publications.
    Type: Article DOI: 10.1089/aut.2018.0004 OpenAlex: https://openalex.org/W2802980590
    Crossref OpenAlex OpenCitations
  27. Nicholas Lennox (2016). bibr16-13623613221132921 Journal of Intellectual Disability Research, 60(7), 695.
    Type: Other
    Crossref
  28. Ewelina Rydzewska , Kirsty Dunn , Sally-Ann Cooper (2021). Umbrella systematic review of systematic reviews and meta-analyses on comorbid physical conditions in people with autism spectrum disorder . The British Journal of Psychiatry, 218(1), 10. Royal College of Psychiatrists.
    Type: Article DOI: 10.1192/bjp.2020.167 OpenAlex: https://openalex.org/W3099831020
    Crossref OpenAlex OpenCitations
  29. Marie E. Ward , Aoife De Brún , Deirdre Beirne , Clare Conway , Una Cunningham , Alan English et al. (2018). Using Co-Design to Develop a Collective Leadership Intervention for Healthcare Teams to Improve Safety Culture . International Journal of Environmental Research and Public Health, 15(6), 1182. MDPI AG.
    Type: Article DOI: 10.3390/ijerph15061182 OpenAlex: https://openalex.org/W2806038830
    Crossref OpenAlex OpenCitations
  32. NHS. (2019). The NHS Long Term Plan (section 3. 31). www.longtermplan.nhs.uk/publication/nhs-long-term-plan
    Type: Other
    Crossref
  33. Cliodhna O’Connor , Helene Joffe (2020). Intercoder Reliability in Qualitative Research: Debates and Practical Guidelines . International Journal of Qualitative Methods, 19. SAGE Publications.
    Type: Article DOI: 10.1177/1609406919899220 OpenAlex: https://openalex.org/W3001362559
    Crossref OpenAlex OpenCitations
  34. (1998). Journal of Intellectual Disability Research . Journal of Intellectual Disability Research, 42(4), 263-263. Wiley.
    Type: Article DOI: 10.1046/j.1365-2788.1998.00140.x OpenAlex: https://openalex.org/W4241201155
    OpenAlex