Autistic Barriers to Healthcare: Dr. Seb Shaw and Dr.Mary Doherty
This week a group of autistic researchers published a paper whichanalyzed community experiences in accessing healthcare. It is no secret thatautistic people experience different health outcomes such as lower lifeexpectancy. The study examines potential reasons for these closelythrough data collected from over 1200 respondents. The findings of the studypaint a complex series of barriers, ranging from sensory to communication,which impeded autistic people. AsIAm discussed the paper with two of itsleading authors.
Dr Seb Shaw isan autistic medical doctor and academic researcher. He lectures in medicaleducation at Brighton and Sussex Medical School, serves as an Honorary SeniorLecturer at the University of Exeter and is a PhD supervisor in Critical Autismand Disability Services at London South Bank University. Dr. Mary Doherty is an anesthesiologist at Our Lady’sHospital Navan. She is also an honorary clinical research fellow and Brightonand Sussex Medical School and Associate Clinical Professor in the UCD School ofMedicine. She is the Founder of Autistic Doctors International, a worldwidegroup of autistic healthcare providers – Seb is also their researchlead.
Tell meabout the initial paper and how it led to this one
Mary: The whole thing started with the AsIAm Autism Friendly Towninitiative down in Clonakilty. Adam Harris asked me to help out with somehealthcare provider training. I wanted to ensure that the training I gave wouldbe informed by the lived experiences of the autistic community so I did asurvey which then led to further research. We published that research last year inthe BMJ open.
That research was on the barriers to healthcare and self-reportedadverse outcomes. That was a quantitative study: just the statistics from thatproject. That paper has been well received and is already highly cited. Thiscurrent project’s data is from the same project, but it’s a qualitativeanalysis, the human stories behind the statistics. We used our own livedexperience to interpret the data and understand what might be happening in ahealthcare context.
Seb: Basically the first paper was the ‘what?’ It gave us the datasuch as 80% of autistic people experiencing barriers making GP appointments ora third felt that they were unable to seek healthcare, even for potentiallyserious and life-threatening conditions. That paper gave us some prettyhorrible and striking, but maybe not shocking information, but not the ‘why?’With this new paper, we dug into respondents’ voices and their stories to tryand come up with some explanations, because no research has ever reallyconnected the dots to look at why autistic people have reduced life expectancyor why we live with more co-occurring conditions.
I think the tendency for a lot of biomedical research is to assumethere’s some sort of genetic flaw within us. In contrast, we grounded this inthe idea of something called Minority Stress Theory, which argues that anyonefrom a marginalised or disadvantaged group goes through more exclusion andstress throughout their lives. That builds up to obviously contribute to mentalhealth challenges, but also to physical ill health.
So, what we wanted to do was take the idea that social exclusionand marginalisation can directly impact our health, and then analyse therespondents’ stories to try to come up with explanations – to find where theissues were.
We came up with a model to explain where the issues seemed to bein their stories, and then used that to highlight where we perhaps could havethe most positive impacts to try and create change – in systems and in medicalculture, but also within wider society. That included drawing on the Autistic SPACE framework, which has become very popular as aproposed way of making adjustments to ease some of the healthcare barriers thatwere experienced right at the beginning, that were preventing people from evencoming to the doctor in the first place.
It’s a very detailed study, and it’s a bit idiosyncratic comparedto most qualitative studies because you normally find they have fiveparticipants, ten participants, maybe 50. We had over 1200 because of the waythe data were gathered across multiple surveys. So, it was interesting toanalyse a very different approach – thousands and thousands of shorter snippetsof data rather than in-depth individual stories. But actually that workedreally well to give us a holistic picture. We were seeing the same stories overand over. So it gave us a lot more confidence in creating the model thatexplained things in this paper.
TheAutistic SPACE Framework is an invaluable tool for healthcare practitioners tounderstand autistic needs
Youmentioned 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 theword epistemology. That just means ‘what is knowledge?’ Who decides what ismeaningful and useful knowledge in the world? And that dictates a lot ofthings. What research we do, what methods we use, and why some subjects getresearched and others don’t. We wanted to translate this concept, that’s knownin the research world more and more, into the actual clinical world. If theidea of what’s a credible source of knowledge is important in the way we doresearch, then surely it is in the way we do health care. Epistemology is allinfluenced by power and autistic people have not traditionally been powerful inthe way society is set up. This means we haven’t traditionally had a say inwhat research is done.
Having an all autistic research team in many ways is epistemicallybrilliant because it means that we get a direct impact on what is said in theacademic world, on what is researched. The idea of epistemic injustice seems tohave an equal parallel across the experiences of the respondents in our study.They felt they just weren’t being taken seriously because they were autisticand this impacted their experience of healthcare. They felt trivialised by thedoctors they were seeing. The common experience was ‘I don’t bother going tothe doctor anymore, because I don’t want to argue whether autistic people canfeel empathy, or whether all my symptoms are because I’m autistic.’ They allfelt discounted and everything was put down to anxiety or autism-related differences ratherthan whatever they actually wanted to be there for.
It wasinteresting how many autistic people had healthcare concerns dismissed asanxiety. At the same time participants reported they had little to no supportfor mental health difficulties.
Mary: Not being offered treatment for a mental illness likeanxiety is a common experience in the study. I have experienced being told by apsychiatrist ‘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 mentalillness and without appropriate healthcare. OCD is another condition that isvery commonly missed. It’s treatable but too many autistic people are livingwith significant OCD and not able to access treatment because the assumption isthat it’s tied to Autism. That diagnostic overshadowing absolutely needs to beaddressed.
Seb: It’s tricky because people don’t always understand just howmuch our mental health can impact our physical health and vice-versa. It canturn out that things are actually related to one’s mental health, but notalways. The big thing is that, regardless of whether anxiety was the cause ofwhatever these particular people were going in for, they felt discounted. Andwhatever happened in that consultation with their doctor, it was notcommunicated well. In general practice, a lot of things do indeed turn out tobe anxiety-related, but it’s important that we as practitioners don’t just sitthere and go, “it’s all in your head”, because that’s definitely not what wemean! That seems be what was relayed across, and the big thing is that thiswill dissuade people from going and seeing a doctor again because they feel sodiscounted.
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 arebeing discounted, but at the same time, we don’t know if the existingtreatments 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 bestthing you can do to support people.
Misdiagnosis is also far too common of an experience. Way too manyautistic people are misdiagnosed as psychotic or schizophrenic, for example.Borderline Personality Disorder is another really big misdiagnosis too.
Tell meabout the process of collecting data from autistic adults
Mary: We used online surveys. It was both quantitative andqualitative with tick boxes and optional questions with free-text answers. Weprobably had about 80,000 words worth of free text. Qualitative research isusually focus groups or interviews, whereas this is online. In some ways, thiswas a lot more accessible for autistic people. But the downside was we couldn’tfollow up on certain answers. There were a few of the responses we really wouldhave loved clarification on but the survey methods didn’t allow it. There werea 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 thedoctor. 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 theoutcome was really emotionally hard.
This was a very tough paper to analyze because as autistic peopleourselves, we understand the difficulty we experience accessing healthcare.Both Seb and myself have had experiences which made accessing healthcaredifficult. Some participants did identify themselves as nurses and medicalpractitioners who described the exact same access barriers. You might think asmedics we would understand the system and wouldn’t have problems, but it’s justas 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 communicatewith my doctor: I’m a nurse.” Another person described having a PhD and againfeeling like they couldn’t get their point across.
Mary: Quite a few people said they didn’t disclose they wereautistic. They were afraid of the consequences of telling their doctor abouttheir diagnosis. One participant even said they were worried if they disclosedthat they would be considered an unfit parent.
Seb: These are the sort of things that a GP usually wouldn’t evenfathom that their patient is thinking about.
In yourpaper you introduce the ‘Triple Empathy Problem.’ Could you explain it?
This feeds into what you propose in your paper as the TripleEmpathy Problem. Could you explain that for our readers?
Mary: I think people in the autistic community are all aware ofthe Double Empathy problem, but people outside don’t. I gavetwo talks in the last week to medical practitioners and in both talks, I askedfor a show of hands for people who knew of the double empathy problem: not onehand raised. The Double Empathy problem is a bi-directional mutualmisunderstanding that occurs between autistic and non-autistic people. Asimilar phenomenon occurs between doctors and patients.
It’s the idea that patients who are not medical do not understandthe perspective of the doctor and vice-versa. It’s difficult as doctors tounderstand the perspective of the patient. What happens with autistic patientsis the Double Empathy problem combines with this clash of perspectives amongmedical practitioners: it’s a three-dimensional problem that we’ve chosen tocall the Triple Empathy problem.
Seb: The autism theories we’ve pulled across won’t begroundbreaking to anyone in the autistic community, and likewise the medicalconcepts 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 willimpact 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 forautism or looking for physiological reasons for reduced life expectancy. What Ithink we really need to be looking at is the process of healthcare. We justaren’t able to access healthcare in an equitable way compared to non-autisticpeople and that must be feeding into the poor health outcomes.
Seb: This is why I was so insistent on including Minority Stresstheory as part of the introduction. It offers a challenge that many medicalreaders may not have thought about before because they may think of health inbio-medical terms.
Mary: In terms of practical examples of autistic peopleexperiencing serious impacts, we saw someone presenting for healthcare withadvanced-stage cancer as opposed to accessing early screening with a curableform of cancer. People are presenting much later and are not getting access tothe 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 whatlittle we do get is in paediatrics. There’s no focus on autistic adults.
The focus on reduced life expectancy: it’s important to rememberthis is a population average and doesn’t predict any individual’s lifeexpectancy. So we need to remember that there are countless autistic peopleliving to old age who will require elderly-care services. There’s absolutely noconsideration of autistic adults in that area of medicine.
Autistic people may experience sensations such as pain the same astheir neurotypical peers. How did this affect participants?
Autisticpeople may experience sensations such as pain differently to their neurotypicalpeers. How did this affect participants?
Mary: Because of differences in interoception, autistic people maynot recognize internal sensations. We might not know we’re sickuntil we’re really sick. Not only do we experience pain differently, but wealso express it differently as well. Autistic people tend to have either a veryhigh pain threshold or a very low one. You then have people who are unwell butdon’t feel the pain straight away. But then there are further barriers to howwe express it to doctors.
Doctors are trained to recognize certain signs of pain that aren’tvisible in autistic patients. In fact some autistic people who are aware ofthis may try to perform pain when they access healthcare. We had oneparticipant who had to consciously remind themselves to say ‘ouch’ duringexaminations. Sometimes this works but sometimes it leads to accusations ofdrug-seeking behaviour or malingering. If an autistic person doesn’t understandthe purpose of an examination is to find the point which hurts, they may notregister that.
Seb: It’s especially important in General Practice now.Realistically a lot of GP sessions take place over the telephone. We’ve beensaying for decades that 90% of our diagnostics are based on history-taking andthe 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 thatsomeone’s autistic, we should maybe take an extra few minutes to carry out thatexamination to help work out what’s happening.
A key partof this paper is the Autistic SPACE framework. Could you explain this?
Seb: SPACE stands for Sensory Predictability AcceptanceCommunication and Empathy. This sits on three foundations of space dimensions:Physical Space, Processing Space and Emotional Space. It’s a nice way ofremembering everything
Mary: It’s a framework that addresses the core needs of anyautistic person. It was designed for healthcare settings initially but realizedit could be applied much more widely. We are doing work to adapt it foreducation, especially medical education.
How can aGP best facilitate communication between them and an autistic patient?
Mary: The first thing is about positionality. We recognize so manyof our colleagues are neurodivergent but so many don’t recognize thatthemselves. So many autistic psychiatrists say they don’t recognize themselvesfrom training because the diagnostic criteria for autism are sodeficit-focused. It’s important that doctors working with autistic people havea good understanding of themselves whether they be neurotypical orneurodivergent. As we know, it’s much easier to communicate if both people areautistic, whereas misunderstandings are much more likely if only one personis.
Seb: As well as positionality we need to consider literality. WhenI’m advising colleagues I always say to be literal, to verbalize your thoughtprocess, and to take nothing for granted. Don’t assume that saying ‘mhm’ meansthat an autistic person knows you’ve acknowledged what they’re saying. Iconstantly talk out loud during my assessments and explain my thoughts. Itshows your patients that you’re acknowledging them and thinking throughoptions. I also recommend something called Unconditional Positive Regard. A lotof autistic people assume other people are going to be nice to us or have ourbest interests in mind if that’s what they tell us, including healthcareproviders. I say we should give that back to our autistic patients. Assume ifsomeone is a bit abrupt that it may just be communication differences ratherthan rudeness. Assuming good intentions prevents the doctor-relationship fromsouring.
What doyou want people to take out of this study?
Seb: On a practical level this paper gives further evidence tosupport Autistic SPACE as a framework that can really make a difference.
Mary: Autistic SPACE addresses the knowledge gap for medicalpractitioners. It’s easy to access, it’s short and memorable. There are so manyareas of medicine competing for doctors’ attention so we needed something shortand direct. The evidence is in the reception that it’s good. We already have15,500 downloads, it’s been translated into Traditional Chinese with morelanguages expected. It’s also being used by the Royal College of Psychiatristsin the UK as part of their training for psychiatrists. I presented it recentlyto the NHS England Learning, Disability and Autism Board. It’s beenincorporated into employment advice by the National Autism Implementation Teamin Scotland with more projects on the way. I hope that Autistic SPACE willbecome the basis for healthcare training, particularly here in Ireland.
Seb: Ten years down the line I would like autistic people to beable to walk into a GP surgery or hospital department, to see the AutisticSPACE framework on the wall, and to know it was a safe place to be, where theirhealthcare needs will be understood.
