Normative communication, expectations of illness, and epistemic injustice: A qualitative exploration into Autistic adults’ healthcare

Williams, Kathryn 2026. Normative communication, expectations of illness, and epistemic injustice: A qualitative exploration into Autistic adults’ healthcare. PhD Thesis, Cardiff University. Item availability restricted.

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Abstract

Autistic people have poor health outcomes and face communication barriers to accessing healthcare. Much research has focused on the needs of Autistic children and has privileged parent/carer and professional reports. Little research considers the normativity that underpins healthcare and how that might contribute to Autistic people’s worse healthcare access. Using a critical autism studies approach, and through a lens of epistemic injustice, I used the example of Autistic adult patients to explore normativity in healthcare. Data were generated using semi-structured interviews with Autistic adult patients (n=24) and health professionals who treat Autistic adults (n=6, plus observed only n=1), and observations of Autistic adults’ healthcare appointments (n=2). My analysis showed that health professionals often have a pathologising ontology of autism. Autism was positioned as a deficit in communication. Expectations of communication in healthcare were overwhelmingly neuronormative, with perceptions of compulsory small talk, eye contact, and a privileging of speech. Alternative modes of communication were the purview of specialists only. Moreover, Autistic communication was positioned as rude or inappropriate. Normativity also underpins expectations and presentations of illness. My analysis identified four patient types: normal-normative, rare-normative, normal-non-normative, and rare-non-normative. As Autistic adults were often positioned as rare, non-normative patients, their symptoms were subsequently undiagnosed and untreated. Autistic patients were subjected to a variety of epistemic injustices related to neuronormative communication and presentations of illness. First, this highlighted a double discreditation due to them being both a patient and Autistic. Second, Autistic patients’ accounts indicated how distributive injustices, in which information is withheld by health professionals, are distinctively epistemic due to not having enough information to make informed decisions about their health. The interaction between neuronormative communication and epistemic injustices contributed to Autistic adults not providing fully informed consent. Third, accounts suggest that experiences currently understood as alexithymia might be better understood as instances of hermeneutical injustice.

Item Type:	Thesis (PhD)
Date Type:	Completion
Status:	Unpublished
Schools:	Schools > School of Social and Spatial Sciences
Subjects:	H Social Sciences > H Social Sciences (General)
Funders:	ESRC
Date of First Compliant Deposit:	12 August 2026
Last Modified:	12 Aug 2026 11:28
URI:	https://orca.cardiff.ac.uk/id/eprint/188934

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