Williams, Kathryn

Williams, Kathryn
Start date:
October 2022
Research Topic:
The role of communication in access to healthcare for autistic adults
Research pathway:
Research Supervisor:
Dr Katy Greenland - Social Sciences and Dr Dikaios Sakellariou - Healthcare Sciences
Supervising school:
School of Social Sciences,
Primary funding source:
ESRC Studentship

Autistic people often have poor health outcomes, with a vastly lower life expectancy than non-autistic people. Autistic adults’ healthcare access is a current UK research priority, and a growing body of literature examines the barriers autistic adults face in accessing healthcare. This research has been instrumental in understanding the disabling sensory environments of healthcare settings, mutual misunderstandings between healthcare providers and their autistic patients, and difficulties in booking healthcare appointments e.g., by telephone. However, this can lead to the problematisation of ‘autistic traits’ or individual healthcare providers, rather than considering how healthcare and societal structures are designed around neuronormativity.

My project will focus on three areas of healthcare that are likely to be highly utilised by autistic patients – mental health, neurology, and rheumatology – to meet the following objectives:
• Explore autistic adults’ perspectives of communication regarding their healthcare needs, including communication within healthcare appointments, and communication surrounding their healthcare appointments such as interactions with reception staff and written communication including appointment summary letters.
• Explore HCPs’ perspectives of communicating with autistic patients.
• Examine the interactions between autistic patients and their HCPs during healthcare appointments.
• Analyse textual communication that might be provided to autistic patients such as clinical appointment letters, condition-focused information leaflets.

Application of the social and relational models of disability are required to critically examine the relationships between autistic patients and healthcare providers who, by training, are often using medicalised, deficit-focused paradigms. Furthermore, not being believed is a recurring issue for autistic patients, implicating the role of epistemic injustice, which I will use as a theoretical lens throughout the project.

Using a critical autism studies approach, I will be using a qualitative approach to my research design, incorporating observational methods within autistic adults’ healthcare appointments to explore the interactions between them and their healthcare providers, and how ableist structures might be made visible within them.

This research must be intersectional in design; therefore, consideration of the accessibility and inclusivity of the project will be made to ensure I encompass the compounding inequalities faced by autistic people from minoritized ethnicities and genders, and for those who also have a learning disability and/or do not communicate using speech. This project supports the use of various modes of communication, including augmentative alternative communication.