“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

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Grant, A., Turner, S., Shaw, S. C. K., 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
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Authors

Publication authors
7
Publication authors identified as autistic
4 / 7 (57.1%)
  1. Aimee Grant *
  2. Sarah Turner
  3. Sebastian Charles Keith 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.

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These indicators describe the cited bibliography imported for this publication. Cited-reference metrics use the cited-reference total as denominator. Cited-author metrics state whether they use all cited-author occurrences or only occurrences linked to authors already integrated in the AutiHub database. They use cached links between cited authors and authors integrated in the AutiHub database. Last computed: 16 Aug 2026 11:30.

Cited references
45
Total cited references integrated for this publication.
Cited references with an identified autistic author
11 / 45 (24.4%)
Cited author occurrences identified as autistic
25 / 230 (10.9%)
Among occurrences linked to AutiHub author records: 25 / 98 (25.5%). Distinct cited authors identified as autistic: 16 / 198 (8.1%).
Cited author occurrences linked to AutiHub author records
98 / 230 (42.6%)
Distinct linked cited authors: 79 / 198 (39.9%)
Linked cited-author occurrences not identified as autistic
73 / 98 (74.5%)
Among linked cited-author occurrences only. Across all cited-author occurrences: 73 / 230 (31.7%). Distinct linked cited authors not identified as autistic: 63 / 79 (79.7%).
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