Role of communication in access to healthcare for autistic adults v1.4
Research type
Research Study
Full title
The role of communication in access to healthcare for autistic adults
IRAS ID
325897
Contact name
Katy Greenland
Contact email
Sponsor organisation
Cardiff University
Clinicaltrials.gov Identifier
ES/P00069X/1, ESRC PhD Studentship Award
Duration of Study in the UK
1 years, 0 months, 0 days
Research summary
Summary of Research
NB: This study uses ‘autistic’ rather than ‘person with autism’ following consultation with community leaders and the wider autistic community. However, individual participants’ language preferences will be respected.Autistic people have unequal access to healthcare, have poor health outcomes, and on average, die younger than non-autistic people. Communication is a barrier to effectively accessing healthcare for autistic people, but little research explores the communication between autistic people and their healthcare practitioners. This research hopes to help healthcare practitioners better understand how to communicate with autistic patients through the following objectives:
1. Exploring autistic patients’ perspectives of communication regarding their healthcare.
2. Exploring healthcare practitioners’ perspectives of communicating with autistic patients.
3. Examining the interactions between autistic patients and their healthcare practitioners within genuine healthcare consultations.
4. Analysing written documents provided to autistic patients regarding their healthcare.
The project will collect data over one year using a focused ethnographic design split into four stages:
A. Interviews with self-identified autistic adults aged 18+ (n=30)
B. Observing autistic adults’ healthcare appointments (n=30) and gathering relevant documents such as condition-specific information leaflets
C. Follow-up interviews with autistic adults after observing their appointments
D. Interviews with healthcare practitioners (n=15)The study will be multi-site (Cardiff and Vale University Health Board and Cwm Taf Morgannwg University Health Board) and multi-department (mental health, neurology and rheumatology). Autistic adults will self-refer into the study. Healthcare practitioners will be recruited on-site.
This research forms part of the research student’s PhD qualification. The Economic and Social Research Council fully funds her PhD project.Summary of Results
The role of communication in access to healthcare for Autistic adults
Kathryn Williams would like to thank all the participants who gave their time to this study.
To cite information from this report, please use: Williams. K. (2025) The role of communication in access to healthcare for Autistic adults preliminary findings, Cardiff.
The research topic was agreed in collaboration with members of the Autistic community. Feedback was given on the methods and on all participant facing materials. Community experts were paid for their time (Willow Holloway and Monique Craine). Willow is Chair of Directors for Autistic UK CIC, an Autistic-led organisation that promotes the rights of Autistic people in policy and practice. Monique provides autism training, mentoring, coaching and consultancy under their award-winning business, Neurodivergent Matters.
This project uses ‘Autistic people’ rather than ‘people with autism’ following community preferences and language guidelines. Some community members choose to capitalise ‘Autistic’ following this styling by the Deaf community, as being Autistic is considered a large part of their identity. Therefore, I have chosen to capitalise ‘Autistic’ throughout this summary.
The project
Previous research has shown that Autistic adults have barriers to accessing healthcare and poorer health outcomes than non-Autistic adults. Communication is often cited as a barrier to Autistic adults’ healthcare access. However, little research focuses on this specifically. Furthermore, existing research often does not investigate the communication norms and healthcare structures underpinning these barriers.
Kathryn Williams (Principal Investigator) undertook doctoral research under the supervision of Professor Katy Greenland (Chief Investigator) and Dr Dikaios Sakellariou (Co-investigator) to investigate the role of communication in access to healthcare for Autistic adults.
The research questions were:
1. What are the normative communication practices within healthcare, and how do these impact autistic people?
2. What are the normative expectations of healthcare, illness, and presentation of illness, and how do these impact autistic people?
3. How are autism/Autistic people conceptualised in the accounts of participants?
4. In what ways are autistic people’s accounts and experiences are treated as credible (or not)?
5. What are the reported outcomes of normative healthcare, epistemic injustices, and communication breakdowns for Autistic patients?Research was conducted using critical autism studies as methodology. Critical autism studies centres Autistic people, and projects are undertaken with an emancipatory approach. The aim is to empower Autistic people through their participation in research. Recommendations include suggestions from research participants in line with the disability activism slogan ‘nothing about us without us’.
The data production involved a qualitative approach, including semi-structured interviews with twenty-four Autistic patients and eight healthcare professionals (HCP), four of whom disclosed that they are also Autistic. All participants were based in either England or Wales. Observations of healthcare appointments for two patient participants were undertaken at a large city hospital in Wales. Data was collected between May 2024 and December 2024.
Data were analysed using reflexive thematic analysis. Early analysis suggests five overarching themes (outlined below). A copy of the full final doctoral thesis will be made publicly available after examination (likely 2027). An executive summary in plain English will be written for Autistic UK CIC and published on their website.Preliminary indicative themes (based on early analysis)
1) The relevance of autism. This theme outlines how autism, and being Autistic, was understood by participants and health care professionals (HCP). HCP seemed to follow a medical model of disability which understood autism in terms of deficits. Autism was understood as negative, as a burden, and as causing challenging behaviour. It was sometimes suggested that autism was a learning disability and/or that that Autistic patients lack capacity to know what is wrong.
Participants said that HCPs’ experience of autism often improved clinical encounters, but that merely having Autistic children was not necessarily helpful. HCPs said that autism training was insufficient and too generic to be applicable to their clinical specialty.
2) Normative expectations of illness and healthcare. This theme explores the idea of a ‘normal patient’, and how a patient should look and act. Participants talked about how Autistic people can have different presentations of illness and pain. They talked about how their need for routine can be misinterpreted by non-Autistic staff. Participants said that Autistic people could struggle with the abstract nature of standardised scales. Some participants talked about how their ‘incorrect’ performances lead to mis- and delayed- diagnosis.
3) Normative communication practices within healthcare. This theme explores how healthcare appointments are usually built around speech and speaking. Speech was treated as compulsory, and as an indication of ‘functioning’. Participants said that they often preferred writing and written materials. They emphasised that a lack of speech should not be taken as a lack of capacity.
4) Epistemic injustices in healthcare. This theme relates to how Autistic people’s accounts and experiences are treated as credible (or not). Patient participants overwhelmingly talked about feeling dismissed by their HCP and often talked about being “fobbed off”. They described their worries that HCP would not believe them. They felt that HCP sometimes withheld information from them, because HCP had decided that they did not have capacity to receive the full story. They described how attending clinic with a support person was misunderstood as evidence that they were unable to provide information about their own health needs.
Patient participants often talked about their difficulties with knowing what is wrong with their health, and how to describe this wrongness in clinic. They linked this difficulty to being Autistic or having alexithymia. In fact, participants were able to translate their feelings into words, but these translations were not acknowledged or understood by people who were not Autistic.
5) Reported outcomes. Patient participants talked about having mis- and delayed- diagnoses. They talked about receiving incorrect or inappropriate treatment. They talked about their fear of contradicting or questioning their health professional. Some talked about ‘shutting down’ because of difficulty with verbal communications. Some talked about avoiding seeking healthcare until it became an emergency. There were examples of patients being subject to procedures without their consent, and ‘going along’ with invasive procedures that they did not want.Patient participants talked about doing ‘self-healthcare’. Sometimes this was requested by health professionals, but sometimes it was to avoid using official healthcare. Patient participants sometimes felt that they had to be responsible for their own healthcare because they did not have the support they needed from health professionals. They talked about the fight to organise and access what they needed. They talked about the assumption that they were able to do this work, or that someone else was able to do it on their behalf.
Participant recommendations
Participants made several recommendations as to how healthcare can be improved to support Autistic patients. These include:
• Being ready and willing for patients to communicate in writing.• Being alert to the sensory environment. This included providing a quieter space, not using fluorescent lighting, and limiting powerful smells for example by changing the cleaning products used.
• Getting educated about autism, preferably through training delivered by an Autistic-led organisation.
• Providing more time for appointments with Autistic patients.
• Building ways that patients can keep informed about their healthcare and diagnoses. For example, providing an email address or a nurse contact between appointments, so that patients can ask questions or share concerns.
REC name
West of Scotland REC 3
REC reference
23/WS/0185
Date of REC Opinion
23 Jan 2024
REC opinion
Further Information Favourable Opinion