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

Journal article


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

Keywordsadults, autism, autistic, epistemic injustice, healthcare, health services, insider research, minority stress theory, qualitative research, triple empathy problem
Year2023
JournalAutism
PublisherSage
ISSN1461-7005
Digital Object Identifier (DOI)https://doi.org/10.1177/13623613231205629
Web address (URL)https://doi.org/10.1177/13623613231205629
Publication dates
Online17 Oct 2023
Publication process dates
Deposited02 Feb 2024
Publisher's version
License
File Access Level
Open
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https://openresearch.lsbu.ac.uk/item/954q4

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