A range of barriers making it harder for autistic people to access healthcare means that one in three could be avoiding getting medical help for serious or life-threatening conditions.
One person who was too anxious to see a doctor despite having a heart attack, and another who was unable to describe symptoms leading to a large, undiagnosed tumour are featured in a new study by Brighton and Sussex Medical School (BSMS), published in the journal Autism.
The study of 1,248 autistic adults was led by a fully autistic team of researchers, most of whom are also medical doctors. The barriers to healthcare they highlight include early barriers; communication mismatch; doubt – in oneself and from doctors; helplessness and fear; and healthcare avoidance and adverse health outcomes.
Autistic people live with more mental and physical health conditions and, on average, die younger than non-autistic people. Previous research from the team had found that 80% of autistic respondents reported difficulty accessing a general practitioner when required, and most worryingly over one-third reported not seeking medical help for “potentially serious or life threatening” conditions. As a result of not being able to access healthcare, respondents’ health outcomes were actually worse.
Lead author Dr Sebastian Shaw, Lecturer in Medical Education at BSMS and Research Lead for Autistic Doctors International, said: “It’s deeply concerning that autistic people are encountering so many barriers to healthcare in this modern age - to the extent that many are needing to avoid seeing a doctor, even when it means putting their health at serious risk. Significant work needs to be done to tackle these barriers, to ensure that autistic people are able to access healthcare as a basic right.”
The team developed a new model that proposes a possible explanation for the underlying links between healthcare barriers and adverse outcomes. It identified a number of key themes that emerged from the research.
Early barriers included trouble participants had in terms of recognising bodily sensations alerting them to when they should seek medical attention, as well as difficulties in booking appointments and with the waiting room environment.
One participant said: “Often I'm so distressed after waiting so long in the waiting room - especially because the appointment time advertised is rarely the time I actually go in for consultation. This confusion and unknowns means I am often very close to meltdown by the time I get in for the consultation”
Communication mismatch frequently occurred with receptionists and doctors. Some respondents reported trying to mask their autism in order to be taken more seriously. Others found that they lacked the ability to influence the doctors effectively.
“It feels like trying to balance between ‘damaged enough to need help’ and ‘undamaged enough to be considered reliable’”
Doubt – in oneself and from doctors – respondents reported a sense of self-doubt and pre-empted guilt when considering accessing healthcare. Many experienced negative relationships with their doctors, which led to perceived questioning of their credibility as people and fostered a sense of frustration at their health concerns not being believed. This was felt to be due to being autistic.
One said: “GPs treat me like a stupid child & assume I don’t understand what is being said to me because they know I have autism. I have a PhD!”
Another said: “Doctors see my autism diagnosis and then just stop listening to me. They just say it's stress or part of my autism!”
Helplessness and fear – feeling that no one would listen or take them seriously promoted a sense of helplessness, whereby respondents had learned that the medical system could not, or would not, be able to support their needs.
One said: “After never being diagnosed or getting any helpful treatment, I started to feel it was a waste of time.”
Healthcare avoidance and adverse health outcomes – prior negative experiences dissuaded respondents from future contact with healthcare providers. As a result, respondents experienced a vast array of serious and potentially life-threatening medical outcomes. Here, the stark medical consequences speak for themselves:
“Due to my difficulty describing my pain and symptoms it led to an undiagnosed… tumour nearly crushing my internal organs from its sheer size and needed emergency surgery which removed a melon sized tumor and an ovary,” said one participant.
Another added: “Heart attack… preferred to sit out the chest pain even though it was agonisingly very painful and might have meant death - despite having a known heart condition and previous heart attack… the visit to my doctor would be too much more anxiety than could cope with.”
Underpinning all five themes and every stage of participants’ experience in seeking healthcare was a sense of not being believed by healthcare professionals.
Commenting on this new research, Professor Sir Simon Baron-Cohen from the University of Cambridge Autism Research Centre, said: “This is a very novel and important study, revealing the barriers facing autistic people in accessing healthcare services. By listening to autistic people’s voices, this qualitative research has identified urgent problems and provides a valuable framework for their resolution.”
The full study can be accessed at here >