Barriers to healthcare for autistic adults: Consequences & policy implications. A cross-sectional study

This publication is included in the Autistic Autism Scholarship Project. three 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

Doherty, M., Neilson, S., O’Sullivan, J., Carravallah, L., Johnson, M., Cullen, W., & Gallagher, L. (2020). Barriers to healthcare for autistic adults: Consequences & policy implications. A cross-sectional study [Preprint]. openRxiv. https://doi.org/10.1101/2020.04.01.20050336

Publication date: 6 Apr 2020 Added to AutiHub: 5 Jul 2026 Type: Preprint Article language: English
Publisher source (DOI) Full text OpenAlex source

This publication is integrated into AutiHub through:

Authors

Publication authors
7
Publication authors identified as autistic
3 / 7 (42.9%)
  1. Mary Doherty *
  2. Stuart Neilson
  3. Jane O’Sullivan
  4. Laura Carravallah *
  1. Mona Johnson *
  2. Walter Cullen
  3. Louise Gallagher

Abstract

Abstract Background Autistic people experience significantly poorer physical and mental health along with reduced life expectancy. Aim To identify self-reported barriers to primary care by autistic adults compared to parents of autistic children and non-autistic adults and link these barriers to self-reported adverse health consequences. Design and Setting Following consultation with the autistic community at an autistic conference, Autscape, a quantitative and qualitative survey was developed. Method The self-report survey was administered online through social media platforms. Results The 57-item online survey was completed by 507 autistic adults, 196 parents of autistic children and 157 control subjects. 79.7% of autistic adults, 52.8% of parents and 36.5% of controls reported difficulty visiting a GP. The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (72.2%), difficulty making appointments by telephone (61.9%), not feeling understood (55.8%), difficulty communicating with their doctor (53.1%) and the waiting room environment (50.5%). Autistic adults reported a preference for online or text based appointment booking, facility to email in advance the reason for consultation, first or last clinic appointment and a quiet place to wait. Increased adverse health outcomes reported by autistic adults correlated with difficulty attending, including untreated physical and mental health conditions, not attending specialist referral or screening programmes, requiring more extensive treatment or surgery due to late presentations, and untreated potentially life threatening conditions. Conclusion Reduction of healthcare inequalities for autistic people requires that healthcare providers understand autistic perspectives and communication needs. Adjustments for autism specific needs are as necessary as ramps for wheelchair users. How this fits in Adverse health outcomes are common among autistic people and so it is important to understand how we can promote access to primary care. This cross sectional study indicates that 79.7% of autistic patients (compared to 36.5% of controls) reported difficulty visiting a GP. Common barriers were: deciding if symptoms warrant a GP visit, difficulty using the telephone to book appointments, not feeling understood and difficulty communicating with their doctor. Common suggestions to promote access included: online or text based appointment booking facility, emailing in advance the reason for consultation, providing first or last clinic appointment and having a quiet place to wait.

Related publications

These links indicate preprints, protocols, published versions, or related records identified in AutiHub.

Published version

Confirmed Reliability level: High Crossref

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 11:54.

Cited references
44
With a DOI
31
Without a DOI, from raw bibliography text
13
7 / 44 (15.9%) cited references include at least one author identified as autistic.
References with data to complete
13 / 44 (29.5%)
References with detected author names
31 / 44 (70.5%)
Without detected author names
13
Without a structured title
13
Without a stable identifier
13
References with raw author names still to review
12
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
170
From DOI or external metadata
170
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
19
86 / 170 (50.6%) names are linked to an author already present in AutiHub. 84 / 170 (49.4%) names are not yet linked.
Names linked to a person identified as autistic
24 / 170 (14.1%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 24 / 86 (27.9%). Distinct people identified as autistic: 10 / 135 (7.4%).
  1. Ousseny Zerbo , Maria L Massolo , Yinge Qian , Lisa A. Croen (2015). A Study of Physician Knowledge and Experience with Autism in Adults in a Large Integrated Healthcare System . Journal of Autism and Developmental Disorders, 45(12), 4002-4014. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-015-2579-2 OpenAlex: https://openalex.org/W1258271155
    Crossref OpenAlex OpenCitations
  2. (n.d.). Data CD. Statistics. Autism Spectrum Disorder. Resource Document. [Last accessed on 2020 Oct 30].
    Type: Other
    Crossref
  3. 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
  4. Giuseppina Chiri , Marji Erickson Warfield (2012). Unmet Need and Problems Accessing Core Health Care Services for Children with Autism Spectrum Disorder . Maternal and Child Health Journal, 16(5), 1081-1091. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10995-011-0833-6 OpenAlex: https://openalex.org/W1964724464
    OpenAlex
  5. (n.d.). Royal College of Psychiatrists. The psychiatric management of autism in adults (CR228). [Last Accessed 2020 Oct 30]
    Type: Other
    Crossref
  6. Ye In (Jane) Hwang , Preeyaporn Srasuebkul , Kitty-Rose Foley , Samuel R. C. Arnold , Julian Trollor (2019). Mortality and cause of death of Australians on the autism spectrum . Autism Research, 12(5), 806-815. Wiley.
    Type: Article DOI: 10.1002/aur.2086 OpenAlex: https://openalex.org/W2917274387
    Crossref OpenAlex OpenCitations
  9. Nicholas Lennox , Mieke L. Van Driel , Kate van Dooren (2015). Supporting Primary Healthcare Professionals to Care for People with Intellectual Disability: A Research Agenda . Journal of Applied Research in Intellectual Disabilities, 28(1), 33-42. Wiley.
    Type: Article DOI: 10.1111/jar.12132 OpenAlex: https://openalex.org/W1969064042
    OpenAlex
  13. 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
  14. Rini Vohra , Suresh Madhavan , Usha Sambamoorthi (2016). Emergency Department Use Among Adults with Autism Spectrum Disorders (ASD) . Journal of Autism and Developmental Disorders, 46(4), 1441-1454. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-015-2692-2 OpenAlex: https://openalex.org/W2233466805
    Crossref OpenAlex OpenCitations
  15. Andrea N. Witwer , Luc Lecavalier (2008). Examining the Validity of Autism Spectrum Disorder Subtypes . Journal of Autism and Developmental Disorders, 38(9), 1611-1624. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-008-0541-2 OpenAlex: https://openalex.org/W2007014703
    OpenAlex
  16. 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
  17. Deborah Bilder , Elizabeth L. Botts , Ken R. Smith , Richard Pimentel , Megan Farley , Joseph Viskochil et al. (2013). Excess mortality and causes of death in autism spectrum disorders: A follow up of the 1980 Utah/UCLA autism epidemiologic study . Journal of Autism and Developmental Disorders, 43(5), 1196. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s10803-012-1664-z OpenAlex: https://openalex.org/W2096889758
    Crossref OpenAlex OpenCitations
  18. Xue Ming , Michael Brimacombe , Janti Chaaban , Barbie Zimmerman-Bier , George C. Wagner (2008). Autism Spectrum Disorders: Concurrent Clinical Disorders . Journal of Child Neurology, 23(1), 6-13. SAGE Publications.
    Type: Article DOI: 10.1177/0883073807307102 OpenAlex: https://openalex.org/W2014966922
    Crossref OpenAlex OpenCitations
  19. C. Gillberg and , E. Billstedt (2000). Autism and Asperger syndrome: coexistence with other clinical disorders . Acta Psychiatrica Scandinavica, 102(5), 321-330. Wiley.
    Type: Article DOI: 10.1034/j.1600-0447.2000.102005321.x OpenAlex: https://openalex.org/W2030493454
    OpenAlex
  20. E. Flygare Wallén , G. Ljunggren , A. C. Carlsson , D. Pettersson , P. Wändell (2018). High prevalence of diabetes mellitus, hypertension and obesity among persons with a recorded diagnosis of intellectual disability or autism spectrum disorder . Journal of Intellectual Disability Research, 62(4), 269-280. Wiley.
    Type: Article DOI: 10.1111/jir.12462 OpenAlex: https://openalex.org/W2779075543
    Crossref OpenAlex OpenCitations
  22. Julian Abel , Helen Kingston , Andrew Scally , Jenny Hartnoll , Gareth Hannam , Alexandra Thomson-Moore et al. (2018). Reducing emergency hospital admissions: a population health complex intervention of an enhanced model of primary care and compassionate communities . British Journal of General Practice, 68(676), e803-e810. Royal College of General Practitioners.
    Type: Article DOI: 10.3399/bjgp18x699437 OpenAlex: https://openalex.org/W2888419336
    Crossref OpenAlex OpenCitations
  23. Blythe Corbett , Laura J. Constantine , Robert L. Hendren , David Rocke , Sally Ozonoff (2009). Examining executive functioning in children with autism spectrum disorder, attention deficit hyperactivity disorder and typical development . Psychiatry Research, 166(2-3), 210-222. Elsevier BV.
    Type: Article DOI: 10.1016/j.psychres.2008.02.005 OpenAlex: https://openalex.org/W2128815365
    OpenAlex
  24. Ilhom Akobirshoev , Monika Mitra , Robbie Dembo , Emily Lauer (2020). In-hospital mortality among adults with autism spectrum disorder in the United States: A retrospective analysis of US hospital discharge data . Autism, 24(1), 177-189. SAGE Publications.
    Type: Article DOI: 10.1177/1362361319855795 OpenAlex: https://openalex.org/W2952614592
    Crossref OpenAlex OpenCitations
  25. 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
  26. Meng-Chuan Lai , Simon Baron-Cohen (2015). Identifying the lost generation of adults with autism spectrum conditions . The Lancet Psychiatry, 2(11), 1013. Elsevier BV.
    Type: Article DOI: 10.1016/s2215-0366(15)00277-1 OpenAlex: https://openalex.org/W2128937542
    OpenAlex
  27. Traolach Brugha , Sally McManus , John Bankart , Fiona Scott , Susan Purdon , Jane Smith et al. (2011). Epidemiology of Autism Spectrum Disorders in Adults in the Community in England . Archives of General Psychiatry, 68(5), 459. American Medical Association (AMA).
    Type: Article DOI: 10.1001/archgenpsychiatry.2011.38 OpenAlex: https://openalex.org/W2138372369
    OpenAlex
  28. 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
  29. Chloe Walsh , Sinéad Lydon , Emily O’Dowd , Paul O’Connor (2020). Barriers to Healthcare for Persons with Autism: A Systematic Review of the Literature and Development of A Taxonomy . Developmental Neurorehabilitation, 23(7), 413-430. Informa UK Limited.
    Type: Article DOI: 10.1080/17518423.2020.1716868 OpenAlex: https://openalex.org/W3004472967
    Crossref OpenAlex
  31. 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
  32. (n.d.). Act A. Autism Act UK. Hm Government (ed). 2009.
    Type: Other
    Crossref
  33. Carole Buckley (2017). Making your practice autism friendly . InnovAiT: Education and inspiration for general practice, 10(6), 327-331. SAGE Publications.
    Type: Article DOI: 10.1177/1755738017692002 OpenAlex: https://openalex.org/W2736420411
    Crossref OpenAlex OpenCitations
  34. (n.d.). Department of Health, 2010. “Implementing fulfilling and rewarding lives”. Statutory guidance for local authorities and NHS organisation to support implementation of the autism strategy. Department of Health, London
    Type: Other
    Crossref
  35. L. Dijkstra-de Neijs , P. J. M. Leenen , J. P. Hays , E. S. van der Valk , R. Kraaij , E. F. C. van Rossum et al. (2020). Biological Consequences of Psychological Distress in Caregivers of Children with Autism Spectrum Disorder and its Potential Relevance to Other Chronic Diseases Including Cancer . Current Epidemiology Reports, 7(3), 139-148. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40471-020-00237-2 OpenAlex: https://openalex.org/W3040056041
    Crossref OpenAlex
  36. (n.d.). The Autscape Organisation. Autscape 2018: Exploring Inclusion. Tonbridge, Kent: 2018. http://www.autscape.org/2018/ . [Last accessed on 2020 Oct 30].
    Type: Other
    Crossref
  37. (n.d.). AsIAm, 2016. A first for Ireland with Clonakilty becoming Ireland’s first autism friendly town. Available at https://asiam.ie/clonakilty-autism-friendly-town/ [Last accessed on 2020 Oct 30].
    Type: Other
    Crossref
  38. (n.d.). AsIAm, 2020. Are you ready to make your Clonakilty commitment for Autism? Available at: https://asiam.ie/asiam-public-sector-training/autism-friendly-communities/ . [Last accessed on 2020 Oct 30].
    Type: Other
    Crossref
  39. (n.d.). National Institute for Health and Care Excellence. Long term plan. [London]: 2019. Chapter 3, Learning Disability and Autism. Available at: https://www.longtermplan.nhs.uk/online-version/chapter-3-further-progress-on-care-quality-and-outcomes/a-strong-start-in-life-for-children-and-young-people/learning-disability-and-autism/ .
    Type: Other
    Crossref
  40. (n.d.). Harper G, Smith E, Parr J, Ingham B, Bisson H, Wilson C, Buckley C, Unigwe S. Autistica action briefing: health checks. Available at: https://www.autistica.org.uk/downloads/files/Autistica-Action-Briefing-Health-Checks.pdf . [Last accessed on2020 Oct 30].
    Type: Other
    Crossref
  41. (n.d.). Health Education England. Partners announced to deliver the Oliver McGowan Mandatory Learning Disability and Autism training for all health and social care staff. Health Education England, 2020, https://www.hee.nhs.uk/news-blogs-events/news/partners-announced-deliver-oliver-mcgowan-mandatory-learning-disability-autism-training-all-health . [Last accessed on 2020 Oct 30].
    Type: Other
    Crossref
  42. (n.d.). National Institute for Health and Care Excellence. The practice establishes and maintains a register of all patients with a diagnosis of autism. [London]: 2017. ([NM153]]). Available at: https://www.nice.org.uk/standards-and-indicators/qofindicators/the-practice-establishes-and-maintains-a-register-of-all-patients-with-a-diagnosis-of-autism
    Type: Other
    Crossref
  43. (n.d.). Westminster Commission on Autism. A Spectrum of Obstacles–An Inquiry into Access to Healthcare for Autistic People.
    Type: Other
    Crossref
  44. (n.d.). Act E. Equality Act 2010. The Equality Act. 2010.
    Type: Other
    Crossref