Barriers to Accessing Healthcare: Perspectives from Autistic Adults and Carers

Calleja, Shenae; Kingsley, Jonathan; Islam, Farhana; McDonald, Rachael

doi:10.1177/10497323211050362

Cited by 5 publications

(1 citation statement)

References 65 publications

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“…In this cohort, 80% of autistic respondents reported difficulty accessing a General Practitioner (GP) when required and, most worryingly, over one third of autistic respondents reported not seeking medical help for ‘potentially serious or life-threatening’ conditions ( Doherty et al, 2022 ). Several qualitative studies have explored experiences of accessing healthcare from the perspectives of autistic people, their carers or supporters and clinicians ( Calleja et al, 2022 ; Dern & Sappok, 2016 ; Mason et al, 2021 ; Nicolaidis et al, 2015 ). Factors impacting healthcare access are described at system-level, provider-level and individual-level, which mirror issues faced by autistic people when accessing other services such as education ( Anderson et al, 2018 ).…”

Section: Introductionmentioning

confidence: 99%

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

Shaw,

Carravallah,

Johnson

et al. 2023

Autism

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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.

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