Barriers to healthcare and a ‘triple empathy problem’ may lead to adverse outcomes for autistic adults: A qualitative study

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Shaw, S. C., Carravallah, L., Johnson, M., O’Sullivan, J., Chown, N., Neilson, S., & Doherty, M. (2023). Barriers to healthcare and a ‘triple empathy problem’ may lead to adverse outcomes for autistic adults: A qualitative study. Autism, 28(7), 1746-1757. https://doi.org/10.1177/13623613231205629

Publication date: 17 Oct 2023 Added to AutiHub: 5 Jul 2026 Type: Article Article language: English
Publisher source (DOI) Full text OpenAlex source

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Authors

Publication authors
7
Publication authors identified as autistic
5 / 7 (71.4%)
  1. Sebastian C.K. Shaw *
  2. Laura Carravallah *
  3. Mona Johnson *
  4. Jane O’Sullivan
  1. Nicholas Chown *
  2. Stuart Neilson
  3. Mary Doherty *

Abstract

Autistic people experience more co-occurring health conditions and, on average, die younger than non-autistic people. Despite growing awareness of health inequities, autistic people still report barriers to accessing healthcare. We aimed to explore the experiences of autistic people accessing healthcare, shining a light on the complex interplay of relevant factors and to explain, at least in part, the possible reasons underling health disparities and adverse health outcomes. This is a qualitative study from an autistic research team. Data were collected from 1248 autistic adults as part of a large, mixed-methods, international survey exploring barriers to primary healthcare. This article reports the qualitative findings, following a thematic analysis. Using our exploratory findings, we then constructed a model to explain the reported experiences. Respondents reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt – in oneself and from doctors; helplessness and fear; and healthcare avoidance and serious adverse health outcomes. Our constructed model outlines a chronological journey through which healthcare access barriers may lead to adverse health outcomes. Our findings also build on the double empathy problem, situating this in a medical context, proposing a triple empathy problem. Lay abstract Autistic people live with more mental and physical health conditions and, on average, die younger than non-autistic people. Despite widespread commitments to tackling these issues, autistic people still report various barriers to accessing healthcare. This article aims to explore the area in depth, from the perspective of autistic people. This research benefits from being led by autistic people, for autistic people – all of the researchers are autistic, and most of us are also medical doctors. Data, in the form of written comments and stories, were collected as part of a large survey. Here, we explored these for common themes and possible deeper meaning within the experiences. People who took part reported a variety of barriers. Here, our article gives voice to their stories, in their own words. Themes included: early barriers; communication mismatch; doubt – in oneself and from doctors; helplessness and fear; and healthcare avoidance and adverse health outcomes. Our findings allowed us to create a model that aimed to understand and explain the reported barriers in the context of the previously known consequences. We also built on wider autism theories to explain our findings in more depth.

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 16:12.

Cited references
56
With a DOI
45
Without a DOI, from raw bibliography text
10
20 / 56 (35.7%) cited references include at least one author identified as autistic.
References with data to complete
7 / 56 (12.5%)
References with detected author names
54 / 56 (96.4%)
Without detected author names
2
Without a structured title
7
Without a stable identifier
9
References with raw author names still to review
2
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
201
From DOI or external metadata
201
From validated raw bibliography text
0
Raw names already validated
0
Raw names still to review
2
118 / 201 (58.7%) names are linked to an author already present in AutiHub. 83 / 201 (41.3%) names are not yet linked.
Names linked to a person identified as autistic
49 / 201 (24.4%)
Calculated across all author names detected in the cited bibliography. Among names linked to an author already present in AutiHub: 49 / 118 (41.5%). Distinct people identified as autistic: 32 / 170 (18.8%).
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