Views about primary care health checks for autistic adults: UK survey findings

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

Mason, D., Taylor, H., Ingham, B., Finch, T., Wilson, C., Scarlett, C., Urbanowicz, A., Nicolaidis, C., Lennox, N., Moss, S., Buckley, C., Cooper, S. A., Osborne, M., Garland, D., Raymaker, D. M., & Parr, J. R. (2022). Views about primary care health checks for autistic adults: UK survey findings. BJGP Open, 6(4), BJGPO.2022.0067. https://doi.org/10.3399/bjgpo.2022.0067

Publication date: 26 May 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
16
Publication authors identified as autistic
2 / 16 (12.5%)
  1. David Mason *
  2. Helen Taylor
  3. Barry Ingham
  4. Tracy Finch
  5. Colin Wilson
  6. Clare Scarlett
  1. Anna Urbanowicz
  2. Christina Nicolaidis
  3. Nicholas Lennox
  4. Sebastian Moss
  5. Carole Buckley
  6. Sally-Ann Cooper
  1. Malcolm Osborne
  2. Deborah Garland
  3. Dora M. Raymaker *
  4. Jeremy R. Parr

Abstract

Background: Compared with the general population, autistic adults experience higher rates of physical and mental health conditions, premature morbidity and mortality, and barriers to health care. A health check for autistic people may improve their health outcomes. Aim: To establish the views of autistic people towards a primary care health check for autistic people. Design & setting: Cross-sectional questionnaire study in England and Wales. Method: A questionnaire was sent to autistic adults with physical health conditions in England and Wales. A total of 458 people (441 autistic adults and 17 proxy responders) completed the questionnaire. Results: Most responders (73.4%, n = 336) thought a health check is needed for all autistic people. Around half of the participants thought a health check should be offered from childhood and the health check appointment should last between 15 and 30 minutes. Autistic people were positive about providing primary care staff with contextual information regarding their health and the reasonable adjustments they would like before their health check appointment. Training about autism and the health check was considered important, alongside adequate time for discussions in the health check appointment (all by over 70% of responders). The clinician’s autism knowledge, seeing a familiar clinician, environmental adaptations, appropriate information, and accessible appointments were considered particularly important in making a health check accessible. Conclusion: Autistic people and relatives were supportive of a primary care health check for autistic people. Information gathered was used to support the design of a primary care health check for autistic adults.

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 13:58.

Cited references
35
With a DOI
29
Without a DOI, from raw bibliography text
6
11 / 35 (31.4%) cited references include at least one author identified as autistic.
References with data to complete
5 / 35 (14.3%)
References with detected author names
30 / 35 (85.7%)
Without detected author names
5
Without a structured title
5
Without a stable identifier
5
References with raw author names still to review
4
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
207
From DOI or external metadata
207
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
4
127 / 207 (61.4%) names are linked to an author already present in AutiHub. 80 / 207 (38.6%) names are not yet linked.
Names linked to a person identified as autistic
28 / 207 (13.5%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 28 / 127 (22.0%). Distinct people identified as autistic: 9 / 139 (6.5%).
  1. Michael D Cabana , Sandra H Jee (2004). Does continuity of care improve patient outcomes . The Journal of Family Practice, 53(12), 974.
    Type: Article OpenAlex: https://openalex.org/W959483631
    Crossref OpenAlex
  2. Lauren Bishop-Fitzpatrick , Amy J. H. Kind (2017). A Scoping Review of Health Disparities in Autism Spectrum Disorder . Journal of Autism and Developmental Disorders, 47(11), 3380-3391. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3251-9 OpenAlex: https://openalex.org/W2740425314
    Crossref OpenAlex OpenCitations
  3. 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. Robert J. Fortuna , Laura Robinson , TRISTRAM SMITH , Jon Meccarello , Beth Bullen , Kathryn Nobis et al. (2016). Health Conditions and Functional Status in Adults with Autism: A Cross-Sectional Evaluation . Journal of General Internal Medicine, 31(1), 77-84. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11606-015-3509-x OpenAlex: https://openalex.org/W1650072402
    Crossref OpenAlex OpenCitations
  5. Andrew Cashin , Thomas Buckley , Julian Trollor , Nicholas Lennox (2018). A scoping review of what is known of the physical health of adults with autism spectrum disorder . Journal of Intellectual Disabilities, 22(1), 96-108. SAGE Publications.
    Type: Article DOI: 10.1177/1744629516665242 OpenAlex: https://openalex.org/W2519892621
    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.
    Type: Article DOI: 10.1192/bjp.bp.114.160192 OpenAlex: https://openalex.org/W2168424072
    Crossref OpenAlex OpenCitations
  7. E. B. Mukaetova‐Ladinska , E. Perry , M. Baron , Carol Povey , on behalf of the Autism Ageing Writing Group (2012). Ageing in people with autistic spectrum disorder . International Journal of Geriatric Psychiatry, 27(2), 109-118. Wiley.
    Type: Article DOI: 10.1002/gps.2711 OpenAlex: https://openalex.org/W1957259892
    Crossref OpenAlex OpenCitations
  8. 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
  9. Ewelina Rydzewska , Laura Anne Hughes-McCormack , Christopher Gillberg , Angela Henderson , Cecilia MacIntyre , Julie Rintoul et al. (2018). Prevalence of long-term health conditions in adults with autism: observational study of a whole country population . BMJ Open, 8(8), e023945. BMJ.
    Type: Article DOI: 10.1136/bmjopen-2018-023945 OpenAlex: https://openalex.org/W2888934327
    Crossref OpenAlex OpenCitations
  11. Ewelina Rydzewska , Laura A. Hughes-McCormack , Christopher Gillberg , Angela Henderson , Cecilia MacIntyre , Julie Rintoul et al. (2019). General health of adults with autism spectrum disorders – A whole country population cross-sectional study . Research in Autism Spectrum Disorders, 60(April 2019), 59-66. Elsevier BV.
    Type: Article DOI: 10.1016/j.rasd.2019.01.004 OpenAlex: https://openalex.org/W2912237256
    Crossref OpenAlex OpenCitations
  13. Janet Robertson , Chris Hatton , Eric Emerson , Susannah Baines (2014). The impact of health checks for people with intellectual disabilities: An updated systematic review of evidence . Research in Developmental Disabilities, 35(10), 2450-2462. Elsevier BV.
    Type: Article DOI: 10.1016/j.ridd.2014.06.007 OpenAlex: https://openalex.org/W2044154256
    Crossref OpenAlex OpenCitations
  14. 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
  15. 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
  17. Leann Smith DaWalt , Jinkuk Hong , Jan S Greenberg , Marsha R Mailick (2019). Mortality in individuals with autism spectrum disorder: Predictors over a 20-year period . Autism, 23(7), 1732-1739. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319827412 OpenAlex: https://openalex.org/W2919551617
    Crossref OpenAlex OpenCitations
  21. Youssra Saqr , Erika Braun , Kyle Porter , Debra Barnette , Christopher Hanks (2018). Addressing medical needs of adolescents and adults with autism spectrum disorders in a primary care setting . Autism, 22(1), 51-61. SAGE Publications.
    Type: Article DOI: 10.1177/1362361317709970 OpenAlex: https://openalex.org/W2740604847
    Crossref OpenAlex OpenCitations
  22. 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.
    Type: Article DOI: 10.3399/bjgp17x690449 OpenAlex: https://openalex.org/W2614102167
    Crossref OpenAlex OpenCitations
  23. Pia Bradshaw , Elizabeth Pellicano , Mieke van Driel , Anna Urbanowicz (2019). How Can We Support the Healthcare Needs of Autistic Adults Without Intellectual Disability? Current Developmental Disorders Reports, 6(2), 45-56. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40474-019-00159-9 OpenAlex: https://openalex.org/W2944177211
    Crossref OpenAlex OpenCitations
  24. Helen McConachie , David Mason * , Jeremy R. Parr , Deborah Garland , Colin Wilson , Jacqui Rodgers (2018). Enhancing the validity of a quality of life measure for Autistic people . Journal of Autism and Developmental Disorders, 48(5), 1596. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-017-3402-z OpenAlex: https://openalex.org/W2768942203
    AutiHub · Autistic Autism Scholarship Project Crossref OpenAlex OpenCitations
  25. 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
  28. Department of Health and Social Care Department of Education (2021) National Strategy for Autistic Children, Young People and Adults: 2021 to 2026. accessed. https://www.gov.uk/government/publications/national-strategy-for-autistic-children-young-people-and-adults-2021-to-2026 . 30 May 2022.
    Type: Other
    Crossref
  29. NHS England (2019) The NHS long term plan (section 3. 31). accessed. www.longtermplan.nhs.uk/publication/nhs-long-term-plan. 30 May 2022.
    Type: Other
    Crossref
  31. Scott D. Wright , Cheryl A. Wright , Valerie D’Astous , Amy Maida Wadsworth (2019). Autism aging . Gerontology & Geriatrics Education, 40(3), 322-338. Informa UK Limited.
    Type: Article DOI: 10.1080/02701960.2016.1247073 OpenAlex: https://openalex.org/W4211023613
    Crossref OpenAlex OpenCitations
  32. Qualtrics (2005) Qualtrics (Provo, Utah).
    Type: Other
    Crossref
  33. Krippendorff K (2013) Content Analysis: An Introduction to its Methodology (Sage Publications, Thousand Oaks, CA), 3rd edn.
    Type: Other
    Crossref
  35. (n.d.). Taylor H Ingham B Mason D et al Co-design of a NHS primary care health check for autistic adults. n.d.
    Type: Other
    Crossref