The Challenges of Accessing Healthcare When Autistic

Authors

Abstract

Chapter 3 critically examines findings from three studies conducted by the authors on the barriers to healthcare access and the challenges faced by autistic individuals. It is written from the perspective of a researcher with lived experience, offering valuable insights into how this positioning informs such research. The chapter addresses key issues such as difficulties in booking appointments, communication challenges, sensory sensitivities, and poorer health outcomes. Furthermore, it highlights the significant implications of these difficulties, including delayed care seeking, increased likelihood of experiencing communication issues when care is sought, and healthcare avoidance, which may result in untreated or delayed treatment for life-threatening conditions. The chapter also introduces the concept of epistemic injustice, wherein the experiences and self-reports of autistic individuals are often dismissed or misunderstood by healthcare professionals. It explores the triple empathy problem, which refers to the layered communication mismatch between autistic patients, non-autistic doctors, and the broader medical system. In response to these challenges, the chapter proposes the Autistic SPACE framework – an acronym for Sensory, Predictability, Acceptance, Communication, and Empathy – as a simple yet effective tool for improving healthcare accessibility for autistic individuals. The framework has been well-received in healthcare settings and seeks to promote more inclusive and empathetic interactions.

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