“I am afraid of being treated badly if I show it”: A cross-sectional study of healthcare accessibility and Autism Health Passports among UK Autistic adults

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

Grant, A., Turner, S., Shaw, S. C., Williams, K., Morgan, H., Ellis, R., & Brown, A. (2024). “I am afraid of being treated badly if I show it”: A cross-sectional study of healthcare accessibility and Autism Health Passports among UK Autistic adults. PLOS ONE, 19(5), e0303873. https://doi.org/10.1371/journal.pone.0303873

Publication date: 29 May 2024 Added to AutiHub: 5 Jul 2026 Type: Article 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
4 / 7 (57.1%)
  1. Aimee Grant *
  2. Sarah Turner
  3. Sebastian C.K. Shaw *
  4. Kathryn Williams *
  1. Hayley Morgan
  2. Rebecca Ellis *
  3. Amy Brown

Abstract

BACKGROUND: Autistic people are more likely to experience stigma, communication barriers and anxiety during healthcare. Autism Health Passports (AHPs) are a communication tool that aim to provide information about healthcare needs in a standardised way. They are recommended in research and policy to improve healthcare quality. AIM: To explore views and experiences of AHPs among Autistic people from the UK who have been pregnant. METHODS: We developed an online survey using a combination of open and closed questions focused on healthcare impairments and views and experiences of AHPs. Data were anlaysed using descriptive statistics, Kruskal-Wallis tests, and content analysis. FINDINGS: Of 193 Autistic respondents (54% diagnosed, 22% undergoing diagnosis and 24% self-identifying), over 80% reported anxiety and masking during healthcare always or most of the time. Some significant differences were identified in healthcare (in)accessibility by diagnostic status. Only 4% of participants knew a lot about AHPs, with 1.5% of participants using one at least half of the time. Almost three quarters of respondents had not previously seen an AHP. Open text responses indicated that the biggest barrier to using an AHP was a belief that health professionals would discriminate against Autistic patients. Additional barriers included staff lack of familiarity with AHPs and respondents expecting a negative response to producing an AHP. CONCLUSIONS: Our findings suggest that AHPs are not reducing health inequalities for Autistic adults who have been pregnant. Alternative solutions are needed to reduce health inequalities for Autistic people.

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 07:50.

Cited references
45
With a DOI
36
Without a DOI, from raw bibliography text
9
15 / 45 (33.3%) cited references include at least one author identified as autistic.
References with data to complete
1 / 45 (2.2%)
References with detected author names
45 / 45 (100.0%)
Without detected author names
0
Without a structured title
1
Without a stable identifier
8
References with raw author names still to review
0
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
230
From DOI or external metadata
230
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
0
143 / 230 (62.2%) names are linked to an author already present in AutiHub. 87 / 230 (37.8%) names are not yet linked.
Names linked to a person identified as autistic
38 / 230 (16.5%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 38 / 143 (26.6%). Distinct people identified as autistic: 28 / 192 (14.6%).
  5. Eilidh Cage , Jessica Di Monaco , Victoria Newell (2019). Understanding, attitudes and dehumanisation towards autistic people . Autism, 23(6), 1373-1383. SAGE Publications.
    Type: Article DOI: 10.1177/1362361318811290 OpenAlex: https://openalex.org/W2901663576
    Crossref OpenAlex
  6. Michelle D. Failla , Estephan J Moana-Filho , Greg K Essick , Grace T. Baranek , Baxter P Rogers , Carissa J. Cascio (2018). Initially intact neural responses to pain in autism are diminished during sustained pain . Autism, 22(6), 669-683. SAGE Publications.
    Type: Article DOI: 10.1177/1362361317696043 OpenAlex: https://openalex.org/W2616500170
    Crossref OpenAlex OpenCitations
  7. Mark L Levy (2012). Obtaining outcome data on asthma management: the UK National Review of Asthma Deaths . Primary Care Respiratory Journal, 21(1), 18-18. Springer Science and Business Media LLC.
    Type: Article DOI: 10.4104/pcrj.2012.00017 OpenAlex: https://openalex.org/W1969482892
    Crossref OpenAlex OpenCitations
  9. 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
  12. 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
    Crossref OpenAlex OpenCitations
  13. Kirsten Corden , Rebecca Brewer , Eilidh Cage (2022). A systematic review of healthcare professionals’ knowledge, self-efficacy and attitudes towards working with autistic people . Review Journal of Autism and Developmental Disorders, 9(3), 386. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s40489-021-00263-w OpenAlex: https://openalex.org/W3163025874
    Crossref OpenAlex
  17. Jim Blair (2013). Everybody’s life has worth – Getting it right in hospital for people with an intellectual disability and reducing clinical risks . Clinical Risk, 19(3), 58-63. SAGE Publications.
    Type: Article DOI: 10.1177/1356262213497681 OpenAlex: https://openalex.org/W2317071159
    Crossref OpenAlex OpenCitations
  18. Denise DuBois , Stephanie H. Ameis , Meng-Chuan Lai , Manuel F. Casanova , Pushpal Desarkar (2016). Interoception in Autism Spectrum Disorder: A review . International Journal of Developmental Neuroscience, 52(1), 104-111. Wiley.
    Type: Article DOI: 10.1016/j.ijdevneu.2016.05.001 OpenAlex: https://openalex.org/W2415326721
    Crossref OpenAlex OpenCitations
  19. 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.
    Type: Article DOI: 10.1007/s10803-018-3639-1 OpenAlex: https://openalex.org/W2808369589
    Crossref OpenAlex OpenCitations
  20. Margrit Schreier (2014). Qualitative Content Analysis . In The SAGE handbook of qualitative data analysis (pp. 170-183). SAGE Publications, Inc..
    Type: Book chapter DOI: 10.4135/9781446282243.n12 OpenAlex: https://openalex.org/W2481390746
    Crossref OpenAlex OpenCitations
  22. Nikolaos Stogiannos , Sarah Carlier , Jane Harvey‐Lloyd , Andrea Brammer , Barbara Nugent , Karen Cleaver et al. (2022). A systematic review of person-centred adjustments to facilitate magnetic resonance imaging for autistic patients without the use of sedation or anaesthesia . Autism, 26(4), 782-797. SAGE Publications.
    Type: Article DOI: 10.1177/13623613211065542 OpenAlex: https://openalex.org/W4200346426
    Crossref OpenAlex OpenCitations
  23. Tanya C. Burton (2016). Exploring the experiences of pregnancy, birth and parenting of mothers with autism spectrum disorder . Staffordshire Online Repository (Staffordshire University).
    Type: Dissertation OpenAlex: https://openalex.org/W2583219414
    Crossref OpenAlex
  24. Kathryn Skivington , Lynsay Matthews , Sharon Anne Simpson , Peter Craig , Janis Baird , Jane M Blazeby et al. (2021). A new framework for developing and evaluating complex interventions: update of medical research council guidance . BMJ, 374, 1. BMJ.
    Type: Article DOI: 10.1136/bmj.n2061 OpenAlex: https://openalex.org/W3194472989
    Crossref OpenAlex OpenCitations
  26. Nikolaos Stogiannos (2023). Toward Autism-Friendly Magnetic Resonance Imaging: Exploring Autistic Individuals’ Experiences of Magnetic Resonance Imaging Scans in the United Kingdom, a Cross-Sectional Survey. Autism in Adulthood..
    Type: Other
    Crossref
  28. Heléne EK Sundelin , Olof Stephansson , Christina M Hultman , Jonas F Ludvigsson (2018). Pregnancy outcomes in women with autism: a nationwide population-based cohort study . Clinical Epidemiology, Volume 10, 1817-1826. Informa UK Limited.
    Type: Article DOI: 10.2147/clep.s176910 OpenAlex: https://openalex.org/W2766642307
    Crossref OpenAlex OpenCitations
  29. Ami Tint , Hilary K Brown , Simon Chen , Meng-Chuan Lai , Lesley A Tarasoff , Simone N Vigod et al. (2021). Health characteristics of reproductive-aged autistic women in Ontario: A population-based, cross-sectional study . Autism, 25(4), 1114-1124. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320982819 OpenAlex: https://openalex.org/W3124766314
    Crossref OpenAlex OpenCitations
  30. Jill F Harris , Leigh P Gorman , Aditi Doshi , Shannon Swope , Shayleigh D Page (2021). Development and implementation of health care transition resources for youth with autism spectrum disorders within a primary care medical home . Autism, 25(3), 753-766. SAGE Publications.
    Type: Article DOI: 10.1177/1362361320974491 OpenAlex: https://openalex.org/W3107102396
    Crossref OpenAlex OpenCitations
  31. Priscilla Samuel , Rui Ying Yew , Merrilyn Hooley , Martha Hickey , Mark A. Stokes (2022). Sensory challenges experienced by autistic women during pregnancy and childbirth: a systematic review . Archives of Gynecology and Obstetrics, 305(2), 299-311. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s00404-021-06109-4 OpenAlex: https://openalex.org/W3165860750
    Crossref OpenAlex
  32. Verity Chester (2019). Autistic women and girls: under-recognised, under-researched and under-served . Advances in Autism, 5(1), 1-1. Emerald.
    Type: Article DOI: 10.1108/aia-01-2019-049 OpenAlex: https://openalex.org/W2919092043
    Crossref OpenAlex OpenCitations
  34. Miriam Harmens , Felicity Sedgewick , Hannah Hobson (2022). Autistic women’s diagnostic experiences: Interactions with identity and impacts on well-being . Women's Health, 18, 477. SAGE Publications.
    Type: Article DOI: 10.1177/17455057221137477 OpenAlex: https://openalex.org/W4309363025
    Crossref OpenAlex OpenCitations
  36. Department of Health & Social Care (2019). Autism capabilities framework . Autism capabilities framework.
    Type: Other
    Crossref
  37. Welsh Government (2021). Code of Practice on the Delivery of Autism Services . Code of Practice on the Delivery of Autism Services, 46.
    Type: Other
    Crossref
  38. Westminster Autism Commission (2016). A Spectrum of Obstacles—an Inquiry into Access to Healthcare for Autistic People . A Spectrum of Obstacles—an Inquiry into Access to Healthcare for Autistic People, 33.
    Type: Other
    Crossref
  39. Akash Sharma , Nguyen Tran Minh Duc , Tai Luu Lam Thang , Nguyen Hai Nam , Sze Jia Ng , Kirellos Said Abbas et al. (2021). A Consensus-Based Checklist for Reporting of Survey Studies (CROSS) . Journal of General Internal Medicine, 36(10), 3179-3187. Springer Science and Business Media LLC.
    Type: Article DOI: 10.1007/s11606-021-06737-1 OpenAlex: https://openalex.org/W3154790864
    Crossref OpenAlex OpenCitations
  40. National Institute for Health , Care Excellence (2021). Clinical Guideline 142 . Clinical Guideline 142.
    Type: Other
    Crossref
  41. National Autistic Society (2022). pone. 0303873.ref026 My Health Passport.
    Type: Other
    Crossref
  43. Kimberle Crenshaw (1998). Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory, and Antiracist Politics . In Feminism And Politics (pp. 314-343). Oxford University PressOxford.
    Type: Book chapter DOI: 10.1093/oso/9780198782063.003.0016 OpenAlex: https://openalex.org/W4388064047
    OpenAlex
  44. S. Murphy (2021). The pros and cons of being an autistic parent . Good Autism Practice (GAP)., 22, 87.
    Type: Other
    Crossref
  45. K. Crenshaw (1989). Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics. Demarginalizing the Intersection of Race and Sex: A Black Feminist Critique of Antidiscrimination Doctrine, Feminist Theory and Antiracist Politics., 139.
    Type: Other
    Crossref