Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study

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Doherty, M., Neilson, S., O’Sullivan, J., Carravallah, L., Johnson, M., Cullen, W., & Shaw, S. C. (2022). Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study. BMJ Open, 12(2), e056904. https://doi.org/10.1136/bmjopen-2021-056904

Journal or book title
BMJ Open
Publisher
BMJ
Volume
12
Issue
2
Pages
e056904
Publication date: 1 Feb 2022 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. Mary Doherty *
  2. Stuart Neilson
  3. Jane O’Sullivan
  4. Laura Carravallah *
  1. Mona Johnson *
  2. Walter Cullen
  3. Sebastian C.K. Shaw *

Abstract

Objectives: Autistic people experience poor physical and mental health along with reduced life expectancy compared with non-autistic people. Our aim was to identify self-reported barriers to primary care access by autistic adults compared with non-autistic adults and to link these barriers to self-reported adverse health consequences. Design: Following consultation with the autistic community at an autistic conference, Autscape, we developed a self-report survey, which we administered online through social media platforms. Setting: A 52-item, international, online survey. Participants: 507 autistic adults and 157 non-autistic adults. Primary and secondary outcome measures: Self-reported barriers to accessing healthcare and associated adverse health outcomes. Results: Eighty per cent of autistic adults and 37% of non-autistic respondents reported difficulty visiting a general practitioner (GP). The highest-rated barriers by autistic adults were deciding if symptoms warrant a GP visit (72%), difficulty making appointments by telephone (62%), not feeling understood (56%), difficulty communicating with their doctor (53%) and the waiting room environment (51%). Autistic adults reported a preference for online or text-based appointment booking, facility to email in advance the reason for consultation, the first or last clinic appointment and a quiet place to wait. Self-reported adverse health outcomes experienced by autistic adults were associated with barriers to accessing healthcare. Adverse outcomes included 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. There were no significant differences in difficulty attending, barriers experienced or adverse outcomes between formally diagnosed and self-identified autistic respondents. Conclusions: Reduction of healthcare inequalities for autistic people requires that healthcare providers understand autistic perspectives, communication needs and sensory sensitivities. Adjustments for autism-specific needs are as necessary as ramps for wheelchair users.

Related publications

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Associated preprints

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: 3 Oct 2026 01:00.

Cited references
35
With a DOI
22
Without a DOI, from raw bibliography text
13
5 / 35 (14.3%) cited references include at least one author identified as autistic.
References with data to complete
13 / 35 (37.1%)
References with detected author names
22 / 35 (62.9%)
Without detected author names
13
Without a structured title
13
Without a stable identifier
13
References with raw author names still to review
13
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
133
From DOI or external metadata
133
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
15
74 / 133 (55.6%) names are linked to an author already present in AutiHub. 59 / 133 (44.4%) names are not yet linked.
Names linked to a person identified as autistic
17 / 133 (12.8%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 17 / 74 (23.0%). Distinct people identified as autistic: 9 / 107 (8.4%).
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