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. 2024 Jul;28(7):1746-1757.
doi: 10.1177/13623613231205629. Epub 2023 Oct 17.

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

Sebastian Ck Shaw  1 , Laura Carravallah  2 , Mona Johnson  3 , Jane O'Sullivan  4 , Nicholas Chown  5 , Stuart Neilson  6 , Mary Doherty  1
Affiliations

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

Sebastian Ck Shaw et al. Autism. 2024 Jul.

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.

Keywords: adults; autism; autistic; epistemic injustice; health services; healthcare; insider research; minority stress theory; qualitative research; triple empathy problem.

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Conflict of interest statement

Declaration of conflicting interestsThe author(s) declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: SCKS, MJ, NC and MD are all collaborating on research projects at London South Bank University aimed at improving autistic healthcare, funded by the John and Lorna Wing Foundation and NHS England (London region). SCKS, LC, MJ and MD are also all part of the leadership team of Autistic Doctors International.

Figures

Figure 1.
Figure 1.
Our proposed model for explaining the reported barriers to accessing healthcare for autistic adults.
Figure 2.
Figure 2.
The triple empathy problem.
Figure 3.
Figure 3.
Autistic SPACE framework. Reproduced from Doherty et al. (2023).
See this image and copyright information in PMC

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