By Cameron Macalister (he/him) and Rebecca MacGregor (she/her)
This blog post is the first LUNA Science Communication Series, a series where research relevant to DIsabled folks is broken down for Disabled folks. Kicking off the series Cameron shares research carried out for his psychology dissertation on autism awareness in medical school, and Rebecca reflects on how this research fits in with her lived experience.
You can also listen here: https://open.spotify.com/episode/4CVtjKkHETB1f63ynQ2kmR?si=w5QmZRaaSxq-eJLAW7F2kw
Cameron: Autistic people are more likely to have unfulfilled healthcare needs and have poorer physical health, mental health, and mortality outcomes. With a coexisting learning disability, these outcomes are even poorer. There are two rough theoretical explanations for this. Firstly, some research argues that features of autism, such as repetitive-restricted behaviours, or sensory sensitivities might make it more challenging to engage in healthy behaviours. For example, autistic people might be less physically active than neurotypical people or find it harder to eat food or brush their teeth due to oral sensitivities. More recently, research has focused more on autistic people’s interactions with healthcare professionals. Evidence suggests that health professionals may not have sufficient knowledge or awareness of autism. The Cross-Party Group on Autism in 2020 researched autistic adults' experiences with healthcare professionals. The autistic adults reported that in their experience, about a third of health professionals had little to no understanding of autism.
Healthcare environments are very autism inaccessible, which with healthcare professionals’ lack of knowledge, likely leads to health disparities. My supervisor explained it best: ‘going into hospital can be scary for anyone, so imagine how hard it must be for an autistic patient, when the professionals struggle to understand or manage your care’. I decided to look at what healthcare students were learning about autism at med-school, believing that if their autism training was improved, they would be more prepared once they qualified. After all, 1% of the population is autistic, so they are bound to treat autistic patients at some point.
I used both quantitative (numbers) and qualitative (peoples experiences) in the project. Firstly, I used a measure of autism knowledge to measure aspects such as knowledge and beliefs about autism, diagnostic knowledge and aspects like clinical self-efficacy (the belief that someone would provide a successful environment to treat an autistic person). I then asked healthcare students open ended questions about their understanding of autism, and how it is taught on their respective courses.
Overall, I recruited 132 medicine, nursing, and dentistry students from 62 universities across the UK. 78% of participants had a personal relationship with an autistic person, the majority being a friend or family friend. 60% of the sample had previous work/voluntary experience with autistic people. The majority of my sample was also female, a common recruitment bias in psychology/autism research.
My quantitative results showed that the healthcare students in my sample possessed good autism knowledge scores, and there was no significant difference in knowledge between degrees. Nursing students had significantly higher self-efficacy in autism than medical students, perhaps indicating they feel more comfortable working around autistic patients. As hypothesised, having personal experience with autistic people significantly predicted knowledge.
Interestingly, despite this good knowledge, the participants in my sample all reported that autism was not taught very well at medical school. The participants were extremely knowledgeable about autistic patients and how to make accommodations for them. When I asked where they learned about autism, they talked about how their personal experience informed their practice.
For example, one nursing student recalled how her little brother was pinned down by professionals, and how she felt more knowledgeable than the staff. Another talked about working with autistic children at a summer camp, and how this now made them want to pursue a career in learning disability psychiatry.
When I asked participants how they think autism should be taught, they had excellent ideas. When they were actually taught about autism, it was stereotypical, usually focused on the ‘little autistic boy’. My participants noted that this was not useful, as it didn’t capture the differences and wide variation among autistic people. Participants wanted to be taught beyond this ‘prototypical’ autistic person, and learn about autistic women, autistic adults, and those with both high and low support needs.
Furthermore, participants talked about how autism could be incorporated into communication skills training. Healthcare students have classes on how to communicate to patients, such as breaking bad news, or taking a history. It made sense to my participants to include autism in this, as social-communication differences could make talking to autistic patients more challenging, thereby impeding care.
Sadly, my participants noted that despite these suggestions, systematic issues prevented autism from being taught properly in their degrees. They suggested this could be because of the current state of NHS Education, staff shortages, limited specialist services and COVID-delays. Participants felt it was unlikely that autism teaching would be prioritised.
Clearly, we need to incorporate autism in the medical curriculum. My sample was biased: most of the sample had personal experience with autism, but this perhaps still indicates the need. Despite being knowledgeable, they all wanted more training. It raises the question- what happens to students who don’t have this experience? The students I researched were so passionate, but unfortunately not every autistic patient will meet such informed and compassionate professionals like my sample.
So where do we go from here? My qualitative results suggest that including autism in communication skills and teaching to the diversity of autism, is a good, actionable start. I found that experience with autistic people led to better knowledge. Therefore, having medical students meet autistic people in a representative and practical way, may be worthwhile: some universities have used disability theatre groups to teach undergraduate healthcare students. Diverse patient educators may improve students’ confidence with patients and instil a greater appreciation of service-user experience.
Finally, it’s not enough to just look at the curriculum. Clearly systematic factors like funding and staffing are making it challenging to teach autism at medical school. Future research should consider the systematic barriers that are impacting on teaching healthcare professionals.
One of the key takeaways I got from researching this project was my own biases. My little brother has very high support needs, and in the future, I will be in charge of his care. This influences my research interests, and my positionality, which is really important.
Lastly, I am not an autistic person, and I need to be aware of my own voice in the research. I’m very glad to see autistic researchers at the forefront, challenging this narrative. I see role models like Dr Monique Botha at Stirling championing autistic researchers, and I have learned a lot about how position as a sibling may, despite all good intentions, minimise the voice of autistic people. I have learned that research is never free from bias, so we should work with our own standpoints, and be transparent about them.
Reflecting from lived experience:
Rebecca: As someone who is autistic myself, learning from this paper about how little teaching students receive about autism at medical school disappoints me. As Cameron pointed out people with autism may struggle more with their health so I feel this should be something highlighted in their learning. As well as showing the diversity of autism and how it can affect everyone differently: it’s not a one size fits all situation. However, from my experience of health care, I can back up Cameron’s findings that most medical staff do have a good understanding of autism. They have understood my extra needs when it comes to my health such as struggling with uncertainty, heightened anxiety, and needing more support with treatments. I feel this research is really important and has well represented my experience in healthcare.
About the authors:
I’m Cameron (he/him): an MSc student at Edinburgh University and a Research Assistant. For my Psychology undergrad, I picked this dissertation topic because my brother is autistic and has a learning disability. I knew anecdotally that autistic people can have negative healthcare experiences. Autism rarely features in medical school, despite GPs being part of autism diagnosis. To me this seemed counter-productive, non-inclusive, and imperative to change.
I’m Rebecca (she/her): A school student. I am autistic and have a range of experiences in healthcare settings. I was interested in this research as I wanted to learn more about what the health care professionals I come in contact with know about autism.