This week a group of autistic researchers published a paper which analyzed community experiences in accessing healthcare. It is no secret that autistic people experience different health outcomes such as lower life expectancy. The study examines potential reasons for these closely through data collected from over 1200 respondents. The findings of the study paint a complex series of barriers, ranging from sensory to communication, which impeded autistic people. AsIAm discussed the paper with two of its leading authors.
Dr Seb Shaw is an autistic medical doctor and academic researcher. He lectures in medical education at Brighton and Sussex Medical School, serves as an Honorary Senior Lecturer at the University of Exeter and is a PhD supervisor in Critical Autism and Disability Services at London South Bank University. Dr. Mary Doherty is an anesthesiologist at Our Lady’s Hospital Navan. She is also an honorary clinical research fellow and Brighton and Sussex Medical School and Associate Clinical Professor in the UCD School of Medicine. She is the Founder of Autistic Doctors International, a worldwide group of autistic healthcare providers – Seb is also their research lead.
Tell me about the initial paper and how it led to this one
Mary: The whole thing started with the AsIAm Autism Friendly Town initiative down in Clonakilty. Adam Harris asked me to help out with some healthcare provider training. I wanted to ensure that the training I gave would be informed by the lived experiences of the autistic community so I did a survey which then led to further research. We published that research last year in the BMJ open.
That research was on the barriers to healthcare and self-reported adverse outcomes. That was a quantitative study: just the statistics from that project. That paper has been well received and is already highly cited. This current project’s data is from the same project, but it’s a qualitative analysis, the human stories behind the statistics. We used our own lived experience to interpret the data and understand what might be happening in a healthcare context.
Seb: Basically the first paper was the ‘what?’ It gave us the data such as 80% of autistic people experiencing barriers making GP appointments or a third felt that they were unable to seek healthcare, even for potentially serious and life-threatening conditions. That paper gave us some pretty horrible and striking, but maybe not shocking information, but not the ‘why?’ With this new paper, we dug into respondents’ voices and their stories to try and come up with some explanations, because no research has ever really connected the dots to look at why autistic people have reduced life expectancy or why we live with more co-occurring conditions.
I think the tendency for a lot of biomedical research is to assume there’s some sort of genetic flaw within us. In contrast, we grounded this in the idea of something called Minority Stress Theory, which argues that anyone from a marginalised or disadvantaged group goes through more exclusion and stress throughout their lives. That builds up to obviously contribute to mental health challenges, but also to physical ill health.
So, what we wanted to do was take the idea that social exclusion and marginalisation can directly impact our health, and then analyse the respondents’ stories to try to come up with explanations – to find where the issues were.
We came up with a model to explain where the issues seemed to be in their stories, and then used that to highlight where we perhaps could have the most positive impacts to try and create change – in systems and in medical culture, but also within wider society. That included drawing on the Autistic SPACE framework, which has become very popular as a proposed way of making adjustments to ease some of the healthcare barriers that were experienced right at the beginning, that were preventing people from even coming to the doctor in the first place.
It’s a very detailed study, and it’s a bit idiosyncratic compared to most qualitative studies because you normally find they have five participants, ten participants, maybe 50. We had over 1200 because of the way the data were gathered across multiple surveys. So, it was interesting to analyse a very different approach – thousands and thousands of shorter snippets of data rather than in-depth individual stories. But actually that worked really well to give us a holistic picture. We were seeing the same stories over and over. So it gave us a lot more confidence in creating the model that explained things in this paper.
You mentioned that a lot of autism research suffers from ‘epistemic injustice.’ Could you explain that term?
The word epistemic is a philosophical term and it comes from the word epistemology. That just means ‘what is knowledge?’ Who decides what is meaningful and useful knowledge in the world? And that dictates a lot of things. What research we do, what methods we use, and why some subjects get researched and others don’t. We wanted to translate this concept, that’s known in the research world more and more, into the actual clinical world. If the idea of what’s a credible source of knowledge is important in the way we do research, then surely it is in the way we do health care. Epistemology is all influenced by power and autistic people have not traditionally been powerful in the way society is set up. This means we haven’t traditionally had a say in what research is done.
Having an all autistic research team in many ways is epistemically brilliant because it means that we get a direct impact on what is said in the academic world, on what is researched. The idea of epistemic injustice seems to have an equal parallel across the experiences of the respondents in our study. They felt they just weren’t being taken seriously because they were autistic and this impacted their experience of healthcare. They felt trivialised by the doctors they were seeing. The common experience was ‘I don’t bother going to the doctor anymore, because I don’t want to argue whether autistic people can feel empathy, or whether all my symptoms are because I’m autistic.’ They all felt discounted and everything was put down to anxiety or autism-related differences rather than whatever they actually wanted to be there for.
It was interesting how many autistic people had healthcare concerns dismissed as anxiety. At the same time participants reported they had little to no support for mental health difficulties.
Mary: Not being offered treatment for a mental illness like anxiety is a common experience in the study. I have experienced being told by a psychiatrist ‘You’re autistic, you’d expect that anxiety’ which isn’t the case. There is no reason for autistic people to be living with untreated mental illness and without appropriate healthcare. OCD is another condition that is very commonly missed. It’s treatable but too many autistic people are living with significant OCD and not able to access treatment because the assumption is that it’s tied to Autism. That diagnostic overshadowing absolutely needs to be addressed.
Seb: It’s tricky because people don’t always understand just how much our mental health can impact our physical health and vice-versa. It can turn out that things are actually related to one’s mental health, but not always. The big thing is that, regardless of whether anxiety was the cause of whatever these particular people were going in for, they felt discounted. And whatever happened in that consultation with their doctor, it was not communicated well. In general practice, a lot of things do indeed turn out to be anxiety-related, but it’s important that we as practitioners don’t just sit there and go, “it’s all in your head”, because that’s definitely not what we mean! That seems be what was relayed across, and the big thing is that this will dissuade people from going and seeing a doctor again because they feel so discounted.
There also hasn’t been a lot of research about what treatments, particularly in the mental health world, work for autistic people. Hopefully, this study might also trigger some further research in that area. People are being discounted, but at the same time, we don’t know if the existing treatments that the wider community do get referred to work or help. Anecdotally, for a lot of my autistic patients, supports like CBT don’t help. It leaves you a bit helpless as a medical practitioner trying to find the best thing you can do to support people.
Misdiagnosis is also far too common of an experience. Way too many autistic people are misdiagnosed as psychotic or schizophrenic, for example. Borderline Personality Disorder is another really big misdiagnosis too.
Tell me about the process of collecting data from autistic adults
Mary: We used online surveys. It was both quantitative and qualitative with tick boxes and optional questions with free-text answers. We probably had about 80,000 words worth of free text. Qualitative research is usually focus groups or interviews, whereas this is online. In some ways, this was a lot more accessible for autistic people. But the downside was we couldn’t follow up on certain answers. There were a few of the responses we really would have loved clarification on but the survey methods didn’t allow it. There were a couple that we would have wanted to address from a safeguarding perspective. For example, there was a few who mentioned finding lumps but not going to the doctor. Another person had developed severe chest pains and wouldn’t see a cardiologist. As a doctor, reading that and knowing what that meant but not knowing the outcome was really emotionally hard.
This was a very tough paper to analyze because as autistic people ourselves, we understand the difficulty we experience accessing healthcare. Both Seb and myself have had experiences which made accessing healthcare difficult. Some participants did identify themselves as nurses and medical practitioners who described the exact same access barriers. You might think as medics we would understand the system and wouldn’t have problems, but it’s just as difficult.
Seb: One particularly good quote from the study was something like “I don’t understand why I’m so badly understood when I’m trying to communicate with my doctor: I’m a nurse.” Another person described having a PhD and again feeling like they couldn’t get their point across.
Mary: Quite a few people said they didn’t disclose they were autistic. They were afraid of the consequences of telling their doctor about their diagnosis. One participant even said they were worried if they disclosed that they would be considered an unfit parent.
Seb: These are the sort of things that a GP usually wouldn’t even fathom that their patient is thinking about.
In your paper you introduce the ‘Triple Empathy Problem.’ Could you explain it?
This feeds into what you propose in your paper as the Triple Empathy Problem. Could you explain that for our readers?
Mary: I think people in the autistic community are all aware of the Double Empathy problem, but people outside don’t. I gave two talks in the last week to medical practitioners and in both talks, I asked for a show of hands for people who knew of the double empathy problem: not one hand raised. The Double Empathy problem is a bi-directional mutual misunderstanding that occurs between autistic and non-autistic people. A similar phenomenon occurs between doctors and patients.
It’s the idea that patients who are not medical do not understand the perspective of the doctor and vice-versa. It’s difficult as doctors to understand the perspective of the patient. What happens with autistic patients is the Double Empathy problem combines with this clash of perspectives among medical practitioners: it’s a three-dimensional problem that we’ve chosen to call the Triple Empathy problem.
Seb: The autism theories we’ve pulled across won’t be groundbreaking to anyone in the autistic community, and likewise the medical concepts we used won’t be groundbreaking to anyone in the medical field. However, the union of these concepts in one paper is unique and I hope will impact our respective worlds.
Mary: I work in quite a few bio-medical autism research projects. In this world so much of the research agenda is in finding a genetic basis for autism or looking for physiological reasons for reduced life expectancy. What I think we really need to be looking at is the process of healthcare. We just aren’t able to access healthcare in an equitable way compared to non-autistic people and that must be feeding into the poor health outcomes.
Seb: This is why I was so insistent on including Minority Stress theory as part of the introduction. It offers a challenge that many medical readers may not have thought about before because they may think of health in bio-medical terms.
Mary: In terms of practical examples of autistic people experiencing serious impacts, we saw someone presenting for healthcare with advanced-stage cancer as opposed to accessing early screening with a curable form of cancer. People are presenting much later and are not getting access to the healthcare they need. So much of it is the result of a lack of training. Medical practitioners get very little training about autistic patients and what little we do get is in paediatrics. There’s no focus on autistic adults.
The focus on reduced life expectancy: it’s important to remember this is a population average and doesn’t predict any individual’s life expectancy. So we need to remember that there are countless autistic people living to old age who will require elderly-care services. There’s absolutely no consideration of autistic adults in that area of medicine.
Autistic people may experience sensations such as pain the same as their neurotypical peers. How did this affect participants?
Autistic people may experience sensations such as pain differently to their neurotypical peers. How did this affect participants?
Mary: Because of differences in interoception, autistic people may not recognize internal sensations. We might not know we’re sick until we’re really sick. Not only do we experience pain differently, but we also express it differently as well. Autistic people tend to have either a very high pain threshold or a very low one. You then have people who are unwell but don’t feel the pain straight away. But then there are further barriers to how we express it to doctors.
Doctors are trained to recognize certain signs of pain that aren’t visible in autistic patients. In fact some autistic people who are aware of this may try to perform pain when they access healthcare. We had one participant who had to consciously remind themselves to say ‘ouch’ during examinations. Sometimes this works but sometimes it leads to accusations of drug-seeking behaviour or malingering. If an autistic person doesn’t understand the purpose of an examination is to find the point which hurts, they may not register that.
Seb: It’s especially important in General Practice now. Realistically a lot of GP sessions take place over the telephone. We’ve been saying for decades that 90% of our diagnostics are based on history-taking and the story people tell us. It leads to a low reliance on clinical examination. If someone says something doesn’t hurt, then that’s that. If we know that someone’s autistic, we should maybe take an extra few minutes to carry out that examination to help work out what’s happening.
A key part of this paper is the Autistic SPACE framework. Could you explain this?
Seb: SPACE stands for Sensory Predictability Acceptance Communication and Empathy. This sits on three foundations of space dimensions: Physical Space, Processing Space and Emotional Space. It’s a nice way of remembering everything
Mary: It’s a framework that addresses the core needs of any autistic person. It was designed for healthcare settings initially but realized it could be applied much more widely. We are doing work to adapt it for education, especially medical education.
How can a GP best facilitate communication between them and an autistic patient?
Mary: The first thing is about positionality. We recognize so many of our colleagues are neurodivergent but so many don’t recognize that themselves. So many autistic psychiatrists say they don’t recognize themselves from training because the diagnostic criteria for autism are so deficit-focused. It’s important that doctors working with autistic people have a good understanding of themselves whether they be neurotypical or neurodivergent. As we know, it’s much easier to communicate if both people are autistic, whereas misunderstandings are much more likely if only one person is.
Seb: As well as positionality we need to consider literality. When I’m advising colleagues I always say to be literal, to verbalize your thought process, and to take nothing for granted. Don’t assume that saying ‘mhm’ means that an autistic person knows you’ve acknowledged what they’re saying. I constantly talk out loud during my assessments and explain my thoughts. It shows your patients that you’re acknowledging them and thinking through options. I also recommend something called Unconditional Positive Regard. A lot of autistic people assume other people are going to be nice to us or have our best interests in mind if that’s what they tell us, including healthcare providers. I say we should give that back to our autistic patients. Assume if someone is a bit abrupt that it may just be communication differences rather than rudeness. Assuming good intentions prevents the doctor-relationship from souring.
What do you want people to take out of this study?
Seb: On a practical level this paper gives further evidence to support Autistic SPACE as a framework that can really make a difference.
Mary: Autistic SPACE addresses the knowledge gap for medical practitioners. It’s easy to access, it’s short and memorable. There are so many areas of medicine competing for doctors’ attention so we needed something short and direct. The evidence is in the reception that it’s good. We already have 15,500 downloads, it’s been translated into Traditional Chinese with more languages expected. It’s also being used by the Royal College of Psychiatrists in the UK as part of their training for psychiatrists. I presented it recently to the NHS England Learning, Disability and Autism Board. It’s been incorporated into employment advice by the National Autism Implementation Team in Scotland with more projects on the way. I hope that Autistic SPACE will become the basis for healthcare training, particularly here in Ireland.
Seb: Ten years down the line I would like autistic people to be able to walk into a GP surgery or hospital department, to see the Autistic SPACE framework on the wall, and to know it was a safe place to be, where their healthcare needs will be understood.
