Health care can be surprisingly hard to access for many autistic people. While there are obvious ways in which health care is particularly inaccessible to high-support autistics, too many autistic people overall avoid seeking health care for reasons that are straightforward to address—if only they were first recognized, and then enforced.
We talked with Dr. Mary Doherty and Dr. Sebastian Shaw of Autistic Doctors International about their recent paper Barriers to health care and self-reported adverse outcomes for autistic adults: a cross-sectional study, which highlights overlooked access issues for autistic patients—including how these largely undetected barriers can lead to delayed care, serious complications, and sometimes even fatalities.
Thinking Person’s Guide to Autism (TPGA): Why is your paper on autistic access to health care so important?
Dr. Mary Doherty: I think because before I started this work, I had no idea of the difficulties that autistic people had in accessing health care. I wasn’t aware of our mortality statistics, I wasn’t aware of the increased morbidity, the increased prevalence of so many common medical conditions in the autistic community. I knew about epilepsy, that was really about it because we’d had no training throughout medical school. Once I started to look into it I was absolutely horrified. That’s where the project started.
TPGA: What is the scope of your project specifically?
Dr. Mary Doherty: We started off with what was essentially a quality improvement project at AsIAm Clonakilty Autism Friendly Town Project in Ireland. As part of that project, half of the local health care providers needed to sign up to the Clonakilty Commitment, which involved health care provider training and I was asked to do that. I wasn’t openly out as autistic at the time, but I was known to AsIAm as an autistic doctor at that stage. So AsIAm asked me to do the training, and I was very keen that the training I would provide wouldn’t be just for my own experience of autism, but that it would be a wider community perspective.
I was going to Autscape [a UK-region conference by and for autistic people] a couple weeks later, that’s why I did the survey there. Basically, what I did was I asked attendees at Autscape, “What do you wish your GP knew about autism?” It was a very broad, open survey, which yielded such incredibly useful data, which I used for the presentation, but then also realized there is gosh, there’s so much here. Particularly the fact that so many people, they mentioned the telephone as a source of difficulty in making appointments. I had no idea.
I really struggled with [using a phone] myself, but I had never put it together that it was an autistic thing or that other people were struggling with it as well. At that stage I knew nothing about the AASPIRE [participatory autism and health care] group or any of the other work that had been done in the field. Then I just wondered, so what if you asked people directly, how many people would have the difficulty? That’s when I expanded it just to an online survey and we got a great response—and the data was very, very consistent and shockingly so.
TPGA: Wonderful. I appreciate that. May I ask, does your survey include people who are self-identified as autistic and if so, why was that important?
Dr. Mary Doherty: That’s one of our really interesting findings. We included people who are self-identified, simply because of the barriers to accessing a diagnosis and obviously, all of us who’ve been diagnosed, we were autistic even before we were identified. As far as I’m concerned, we had to include self-identified people.
Interestingly, 75% of our autistic group did have a formal diagnosis, but what was really interesting was when we analyzed the data, looking at the comparison between the self-identified autistic group and the formally diagnosed autistic group, there was no difference, in terms of the difficulty attending a GP, in terms of the barriers experienced, and most worryingly, in terms of the adverse outcomes experience by autistic people. We thought that was really important.
Dr. Sebastian Shaw: From my perspective, it’s probably one of the most important findings, because, particularly in the UK, the reality is if you don’t have a formal diagnosis—and that’s more specific a formal diagnosis via the NHS [National Health Service], which can take up to 10 years for a referral, you’re not really entitled to adjustments or support. People will make adjustments based on private diagnoses and psychologists ones, but they certainly won’t add extra supports if you are employed by big companies or things like that.
For example, I have an autistic friend at the moment who is trying to get support for things because her diagnosis was from a private psychiatrist, and they’re not recognizing it. They class her as self-identified despite having a diagnosis the way our systems work.
I think the big thing for me that this paper adds is the fact that it gives some oomph for people who don’t have that formal [autism] label in the way it has to be, from the person it has to come from. That actually they have the same struggles, there’s no difference, and they deserve the same support and access rights.
TPGA: I will say that as the parent of a high support autistic person myself, I truly welcome research like yours, even though my son is not able to self-report in the same way [as your respondents]. And I’m actually a community partner with the AASPIRE AutProm Toolkit for creating better tools for people who can’t do their own health care reporting. But overall, when we have better tools for evaluating and accessing autistic health care, then that does trickle down because my son would need a lot of the same accommodations, in terms of sensory accommodations and processing that medical professionals would not have thought of.
However, it seems as though it was not possible for you to include people who were not able to self-respond in your survey. Do you have plans to possibly expand the scope of the project to include non speakers in the future?
Dr. Mary Doherty: It would be fabulous to be able to do that. The difficulty is how to do it, in terms of methodology. We actually do have a data set from parents as well. We actually had three groups. We had the autistic group, we had a group of parents of autistic kids, and we had a group of non-autistic adults who were not parents of autistic kids. We didn’t report the parent group yet. We will do, but we haven’t done so yet. Some of those respondents did actually respond on behalf of their kids, which is interesting, but just in the peer review process, that entire data set was cut just for clarity, really.
Dr. Mary Doherty: Which I think for the paper, it was a good call, but we will report that at some point. In terms of including non-speaking autistic people, absolutely we need to do. We really, really need to do that because that’s very much, I think, what we are about in ADI [Autistic Doctors International]. We’re looking at health care for the entire autistic population. We’re about everybody, all autistics, not just people who can self-advocate and advocate for themselves.
It’s what’s different about ADI, I think, to some other autistic professional groups who are advocating for just their own group. We do peer support and we do advocacy research and education for the benefit of autistic doctors and autistic medical students, but that’s not all we do. The other sides of what we do is all about health care for the entire autistic population. It’s so important that people who can’t self-advocate for themselves, don’t speak, are understood within health care.
Dr. Sebastian Shaw: I think that’s one of the things that we’re in a unique position to be able to do as well. Ask us 10 years ago, or ask any of our colleagues now, this concept of people just not accessing health care when they’re unwell, seems very alien. Most doctors will assume, “But you can just pick up the phone and make an appointment!” Until there’s enough evidence of studies like our that show these barriers, doctors just assume that people will access the help because it’s there and it’s available because these barriers aren’t seen to non-autistic people.
I think that’s a big part of the research elements that we’re doing, and a big part of our perspective because we do straddle that line between being members of the autistic community, and also members of the medical community. We have that levelheaded view on both sides, where things really can change and be impactful, to have that ability to be able to advocate for the wider autistic community.
TPGA: May I then ask, it seems as though what you’re identifying is something that we see in the United States as well: We see people who are not perceived as being disabled because they present in ways that do not appear disabled to people who don’t understand or work with autistic people enough, and as a result they are unaccommodated.
We also see people who can have serious and even fatal results from not having fairly standard health conditions taken care of, because of these invisible access barriers. An example would be a condition like undiagnosed or chronic diabetes, in which doctors might wrongly assume that a patient has the executive function skills to do the self-care that is required for managing the condition. Is that a fair assessment?
Dr. Mary Doherty:Yes, absolutely.
Dr. Sebastian Shaw: And which affect the mortality data.
Dr. Mary Doherty: We also found that people were unable to follow up with specialist appointments, unable to fill prescriptions, unable to just even re-attend for follow-up, and that’s just not understood.
The other thing that tends to happen is people accessing health care are generally stressed and under pressure. I think there’s only 3% of the autistic group, who said that they didn’t feel anxious, for example, going to the doctor.
Then 78% said that anxiety reduces their ability to communicate. People who can generally communicate fairly well in day-to-day life can really struggle to communicate in health care situations. It’s the same for myself, I can absolutely attest to that on a personal level. Then that tends to be misunderstood.
People having communication difficulties or people having sensory issues tend to be seen as difficult and that makes the health care interaction very, very challenging on both sides, really. People tend to be misunderstood and just misinterpreted very easily. Then of course, we know that prior negative experiences in health care is a further independent barrier to future access.
What we did find was that there was a group of people who were completely alienated from the health care system entirely. No access to primary care, not registered with any GP. Maybe in situations where the GP they had previously been registered, and then they moved house, and never managed to get registered again or the GP retired or died or moved on. People having just no access whatsoever.
Then there was a small proportion of people in the control group, in the non-autistic group, who also weren’t registered or had no access too, but the reasons were very different. When we compared those, the control group, the reasons for that group were they didn’t have time to go to the doctor, for example or they didn’t have childcare. It wasn’t the case that they needed to go and couldn’t, which was the case with our autistic group.
TPGA: That’s helpful to clarify those differences. Thank you. Another thing I wanted to highlight is that you included both mental and physical health factors in your survey. Why was that so crucial for this specific population?
Dr. Mary Doherty: I think because both are just so important. We know that the majority of autistic people experience mental health difficulties, which is not inevitable. That doesn’t have to be the case, even though it is associated quite a lot.
The reason we included both was just because of the known associations with mental health difficulties for the autistic community. We felt it was important to separate out the difficulties, both for mental health and physical health.
Dr. Mary Doherty: Interestingly, the figures were roughly about the same, I think, for untreated mental and physical health conditions. Untreated mental health conditions were slightly higher than untreated physical health conditions, but roughly about two-thirds of the autistic group had untreated conditions for both.
Dr. Sebastian Shaw: The scariest finding being the potentially life-threatening.
Dr. Mary Doherty: Yes, that was terrifying. One in three said that they’d had a serious or potentially life-threatening condition for which they didn’t access health care. The thing is, we have a huge amount of qualitative data that we’re in the process of analyzing.
The stories coming through, Shannon, my goodness. The stories coming through, people who have medically serious conditions, particularly people who’ve had previous medically serious conditions and they know what’s happening and they still can’t bring themselves to lift the phone or call an ambulance or access health care or deal with the sensory nightmare of the emergency department.
It’s no wonder that people use the emergency department more often present much, much later. That’s the thing. People are presenting much later in the natural course of an illness. Autistic people get so much sicker before ever accessing health care.
Dr. Sebastian Shaw: Look at me. I was very ill with an infection last year. Being a doctor myself, I felt I couldn’t face going to an A&E [emergency room]. I left it far too late. I was very unwell, I was confused, I was very tired. I was told by multiple people that I was septic by the time I sought help. Essentially, the only reason that I did get appropriate help was I phoned my consultant who I worked with. She could tell something was very wrong and she arranged for someone to just come out of A&E and find me.
That person just saw me outside and got me in, avoided the waiting room, avoided everything else, because it was enough of a barrier for me to sit with a raging infection for the better part of a week in the community. I couldn’t face sitting in a busy A&E department for eight hours.
TPGA: Oh my goodness.
Dr. Mary Doherty: That was even with several of us trying to help you access care at the time. It was…
Dr. Sebastian Shaw: Being a doctor myself, watching my fever go, and watching myself deteriorate knowing what was happening, I still just couldn’t face overcoming that waiting room environment and all the people.
In the UK, we usually see a GP [General Practitioner] if it’s something non-urgent. I had seen a GP about this deteriorating issue who had promised to make some adjustments and get me seen directly by a specialist, but then they didn’t work the rest of the week and another GP denied adjustments and wouldn’t help, essentially. I needed to fall back on an emergency amount of hours and I just couldn’t face it.
Then I went to another GP, who basically said, “Our hospital is not equipped. You’re too unwell to be here. We need to send you to a big hospital.” Then sent me down to the hospital I work at, which is why I got locked out at my own consultant, was basically, I phoned her and then she was, “What’s happening?” Just said, “I’m sending one of the consultants who’s currently covering my patients down to deal with it.”
TPGA: Oh, my goodness. I’m so glad you’re well now.
Dr. Sebastian Shaw: It was over a year ago.
TPGA: Okay. I want to truly thank you both for interviewing with me today. This was really helpful and quite bracing. Again, I’m very sorry for your own personal experience. That’s just horrific.
Mary: We really enjoyed talking. Thanks, Shannon.
- Dr. Mary Doherty is an attending Anaesthesiologist, and the founder of Autistic Doctors International.
- Dr. Sebastian Shaw is a Family Medicine resident.