The Middletown Centre for Autism Podcast
Autism and Hypermobility with Dr Jessica Eccles
In this episode, we’re learning more about the link between autism and physical health conditions. Dr Jessica Eccles, joins the podcast to discuss hypermobility: when someone has very flexible joints that can often cause pain.
You can find out more about Jessica’s work here: https://www.bsms.ac.uk/about/contact-us/staff/dr-jessica-eccles.aspx
In this episode, we’re learning more about the link between autism and physical health conditions. Dr Jessica Eccles, joins the podcast to discuss hypermobility: when someone has very flexible joints that can often cause pain.
You can find out more about Jessica’s work here: https://www.bsms.ac.uk/about/contact-us/staff/dr-jessica-eccles.aspx
Welcome to the Middletown Podcast. I'm Kat Hughes, I'm a researcher at Middletown and I'm also autistic. In this episode, I talked to Dr Jessica Eccles. She's a researcher and clinician working on understanding neurodivergent physical health, with a particular focus on hypermobility. Working on understanding neurodivergent physical health, with a particular focus on hypermobility, I found it a really fascinating and relatable chat. As ever with conversations on our podcast, they aren't a substitute for medical advice, so if you find yourself relating to our conversation, do seek out a medical professional. I found Jessica so interesting to talk to, so I hope you enjoy our chat. So, jessica, thank you so much for joining us on the podcast and I might start, if it's okay, by asking you to tell our listeners a little bit about what you do.
Speaker 2:Ah well, no, it's a real pleasure, kat. So my name is Jessica Eccles and I think I have a really exciting job in that I have two positions. So I am a clinical academic, so I work three days a week at the university, so at Brighton and Sussex Medical School in the UK, where I am a reader in brain body medicine, so I do research that links the body and the brain. And then two days a week I work in the NHS in Sussex where I work in an adult neurodevelopmental service where we assess people for autism, adhd and Tourette's syndrome and, as we'll talk more in the podcast about these links, but because of the kind of the intersect between the research work and the clinical work we have set up in our service, which is a wonderful service, it's very sort of neurodiversity affirmative, the world's first neurodivergent brain body clinic, which, amongst my colleagues, professor Hugo Critchley and our nurse consultant Rebecca Ju, and so that is very exciting.
Speaker 1:It really is, and one of the reasons that I was really keen to talk to you is from my own perspective. I'm hypermobile, I have a diagnosis of AlzheimerS and obviously autistic as well, and when I sort of learned about hypermobility, I suddenly started to see hypermobility in a lot of the autistic people that I knew. When I learned about ALS, I started to see that in a lot of people, and a lot of people I know are on waiting lists or have gotten diagnosis since. So I wanted to sort of talk to you about that and the link between the two. So, within the neurodivergent clients that you work with, do you see a lot of those sort of physical health issues?
Speaker 2:Oh yes. So I would say the vast majority of the neurodivergent people that we see experience some sort of physical health issue, be it chronic pain, chronic fatigue, gut issues, problems on standing, dizziness, allergies. That's a big one, and the physical health concerns of our neurodivergent patients are quite considerable. And we've been doing research into hypermobility and its relationship with both neurodivergent conditions and also things like anxiety, pain and fatigue at. We've been doing this research at Brighton Sussex Medical School since 2009. And so it sort of started. First of all my boss, professor Hugo Critchley. He was interested in the relationship between this condition, hypermobility, and people who experience dizziness on standing, postural tachycardia syndrome and so he'd become interested in the link between the brain and the body in terms of autonomic function and the impact that autonomic function might have on anxiety. So we started a. We did a brain imaging study where we looked at people to see if they were hypermobile or not, and we looked at the structure of their brains and we found that if you were hypermobile you had differences in a part of the brain called amygdala, which is to do with fear and emotion processing. So that was really helpful for thinking about anxiety in hypermobile people. But at the same time we found some differences in brain structure that had been reported in ADHD and autism, and also we found that the greater the number of hypermobile joints, the smaller a part of the brain processes where you are in space. So there was a link there with dyspraxia, which, of course, often goes alongside autism and ADHD and is another neurodivergent condition. So that really sort of whet our appetite into looking into the relationship between hypermobility and neurodivergence further.
Speaker 2:Of course this was. We published that paper in 2012. So the language was quite different. We were talking about neurodevelopmental disorders and you know, we've been on a real journey in terms of trying to change that language and think about things in a different way. But it really it sparked off the idea that it would be really interesting to see if there was actually a relationship between hypermobility and ADHD and autism. So there had been some studies relatively small studies in children linking hypermobility to ADHD, linking hypermobility to dyspraxia. So when it came for me, I've been on this clinical academic path, so I've combined my training in psychiatry with training in research. When it came to doing my PhD, we decided that we would explicitly look at our neurodevelopmental service to see if there was a link between hypermobility and having a diagnosis of ADHD, autism or Tourette's syndrome. So we started that work a long time ago now, probably in about 2014. And as that was happening and we were doing that work, there was other researchers were sort of bringing things to the table in terms of this relationship. So I think it was in 2016,.
Speaker 2:A Swedish study published the whole population. So in Sweden they have really good health records that are available for researchers to ask questions. So what they looked at was if you had a diagnosis of a hypermobility condition like at the time, this was 2016. So before the change to the hypermobility condition like at the time, this was 2016,. So before the change to the hypermobility diagnostic criteria if you had an EDS diagnosis or a joint hypermobility syndrome diagnosis, they found that you were seven times more likely to have an autism diagnosis and five times more likely to have an ADHD diagnosis. So for me, that was really well. It was a very strong signal and it sort of confirmed what we had been looking at and hypothesizing about. But what struck me with that was that this was only people who had a diagnosis, so it's so hard to get both of these types of diagnoses. So when I saw those results and when I thought about them, I thought well, this is really just the tip of the iceberg and what we need is some more systematic research to see how frequently these things co-occur.
Speaker 2:So we carried on with the work that I was doing in my PhD, where we were looking at people who had a diagnosis of ADHD and autism or autism or Tourette syndrome, and we we examined them to see if they were hypermobile and we also did some autonomic symptoms evaluation to see if they had problems with the flight or fright nervous system when they're going from lying to standing.
Speaker 2:And what we found and we published this only actually in 2022, we found that in our group of patients I think we had about 110 patients with a variety of diagnosis ADHD, autism, tourette syndrome that If we looked at the whole neurodivergent group, 50% of them met the threshold for generalized joint hypermobility, whereas only about 20% less than 20% of the comparison group.
Speaker 2:And also we compared them to general population data that we had them to general population data that we had.
Speaker 2:So when we did the maths on that, that meant if you had a diagnosis of autism, adhd or Tourette's syndrome, you were four times more likely to be hypermobile, which is quite strong.
Speaker 2:But when we dug down into it deeper in our neurodivergent patients who were assigned female at birth, we found that nearly kind of just over between 70 and 80 percent of our neurodivergent females were scoring above threshold on the on the joint hypermobility scale. So that was really quite powerful. And what we found as well, which I think gave it a kind of added element was that the neurodivergent people were more likely to experience physical health problems. So they were more likely to report symptoms suggestive of difficulties with the flight or fright nervous system related to going from lying to standing or static intolerance, and they were also more likely to experience pain. And when we put all of this together in a mathematical model we call it causal modeling we found that the relationship between being neurodivergent and having physical health symptoms was mechanistically explained by the. We think that hypermobility is the is the factor that is potentially explaining why neurodivergent people have more physical health concerns that is fascinating and for our listeners how, how.
Speaker 1:How do you define joint hypermobility? What would that look like?
Speaker 2:So this is part of the reason why I think that hypermobility research and clinical practice is a bit confusing. There are so many different ways of. There's so many different names for hypermobility. There are so many. The diagnostic tools are complicated. So we looked at something called the presence of generalized joint hypermobility, which is determined using a physical examination called the BITEN scale and that forms part of the symptomatic hypermobility diagnoses, but is not everything. So it is possible that you can score above threshold on that scale, have generalized joint hypermobility, but not have physical health problems. It is also possible that in the diagnostic criteria you can actually not score on that scale but have other problems that mean that you would endorse a symptomatic hypermobility diagnosis. So it's only it's a bit rough and ready and I think that it has lots of problems in that it misses hypermobile joints like hips, shoulders, ankles. I also have a feeling that it's sort of biased towards women for some reason, which is a potential line of research in the future. But it is one of the tools that we have and it is something that people know about.
Speaker 2:There are other things that you can do. So, obviously, doing a physical examination, it doesn't take much time. It's not a complicated physical examination but the people who do it need to be confident and trained. There is a for adults. There is a self-report questionnaire that is sort of a substitute for the examination, sort of a substitute for the examination. It's a screening questionnaire, five items, and if you score more than two on those five items then you are highly likely to have generalized joint hypermobility. So we have actually been using that self-report questionnaire in other studies self-report questionnaire in other studies because you can reach more people. So, for example, we have been interested and we have a paper accepted for publication so it will be published in the next couple of weeks.
Speaker 2:Where we took a, we looked in a biobank that had been set up by King's College London about people's experiences of COVID.
Speaker 2:So we had 3,000 people who had had COVID, who were part of this biobank, who filled out a joint hypermobility questionnaire, which is much, much more practical than doing 3,000 joint examinations, than doing 3,000 joint examinations, and we found that if you were likely hypermobile on the self-report questionnaire you were 30% more likely to have not recovered from COVID fully.
Speaker 2:So this is interesting and it looked when we did, and that was after adjusting for all sorts of factors like age, gender, socioeconomic status, education, vaccination status, infection numbers and things. So a very powerful signal. And what the modelling told us was that that relationship between having hypermobility is associated with a subtype of long covid. So it might not be um, it might not be um important for all types of long covid, but the type of long covid where people get dizzy when they stand up but they get brain fog, that may be where hypermobility is important. Unfortunately in that study, because we could only use very brief questionnaires, we were not able to explicitly look at the link between hypermobility, neurodivergence and long COVID, but that is something that would be very interesting in the future.
Speaker 1:It really would that is fascinating again and, to be honest, I massively relate to that because my own experiences it was COVID, I was hypermobile, got COVID, became really ill and that's when I got my other stand-loss diagnosis and have never quite sort of gotten back to it to myself since then. So that is so, so fascinating, my goodness, and so valuable for us to know.
Speaker 2:Well, yes, so that will hopefully be published in the next couple of weeks in bmj public health and, uh, we will um, we will be um creating some infographics and it will be open access, so it will be freely available for uh people to read.
Speaker 1:and then, if say, someone is listening and they have a neurodivergent child who is hypermobile and has those physical health issues, or they're a neurodivergent adult themselves and they're sort of relating to what you're saying. Is there anything they should be aware of?
Speaker 2:Well, I think for a lot of people that I speak to, connecting these issues can actually be really therapeutic. So, um, instead of thinking, oh, I've got you know five different things going on, 12 different things going on, thinking actually, no, my body is built in a slightly different way and this means that I'm more likely to be autistic or have ADHD and I am more likely to have gut problems, anxiety issues, you know, dizziness on standing, those type of things is. I think it gives people a sense of reassurance that they weren't making it up or imagining things, that actually there is a pattern it up or imagining things that actually there is a pattern. So I think learning more about the connection and learning more about hypermobility, if you're coming at it as a neurodivergent person, is really important and there are some good resources. So, um, there is a book by a woman called claire smith. It doesn't really talk much about neurodivergence, but it talks about the whole physical, all of the physical issues associated with hypermobility. So that's that's really useful.
Speaker 2:And in the UK, the EDS Society in the UK have produced a toolkit for general practitioners to help manage common hypermobility associated conditions. So the big, the main ones are allergies and difficulties feeling dizzy and lightheaded when standing, being in a hot environment or having a large meal, and this toolkit provides useful advice for family doctors and GPs to manage those issues in primary care. So that is a good resource. Another resource is a charity organisation in Sussex actually called SEDS Connective S-E-D-S Connective dot org. And they are an organization that are explicitly about supporting neurodivergent hypermobile people.
Speaker 2:So I disclosure, I'm a patron of that charity. It's chair, jane Green, does an awful lot of of kind of public engagement and education and she's also been instrumental in the EDS Society in the UK producing a school's toolkit to help support young people, because Jane's background was in education and a lot of neurodivergent hypermobile children are maybe struggling with school because of physical and mental health and neurodivergent issues and they can sometimes get labeled as um I think it's called emotion based school avoidance, um and people can be, you know, uh, possibly barking up the wrong tree, thinking that it's all some kind of somatization of something, whereas actually there could be things like growing pains, gut issues, dizziness issues, anxiety issues, neurodivergent issues that mean that the child needs better support support.
Speaker 1:Yeah that, yeah there's so much awareness around the public and how the the public might better support people, but then, as you say, learning about ourselves is so very important and and sort of being that bit kinder to ourselves I think, as a result of that can be really really helpful. One of the things you talked about is is sort sort of the feelings of pain and how that's associated with potentially hypermobility and those physical health issues. Have you found that that is different for autistic people, or might there be more difficulty recognising or expressing pain for autistic people?
Speaker 2:Yes, I think that's a really important question, kat. So when we published the paper that I was telling you about, where we linked pain and autonomic dysfunction to neurodivergence, I actually got a couple of comments on Twitter saying, oh, but autistic people don't feel pain, do they? And unfortunately that has been a bit of a stereotype and a myth is that, you know, autistic people don't have empathy, they don't experience pain, and that's obviously not at all true. But we do know that autistic people have differences in something called interception, which is the internal sense of what is happening in the body, and so it might be that an autistic person has difficulty recognising or realising that they're in pain, and they may a bit like being hungry or needing a pee. They might not notice this at all for ages until it's actually got really bad, and that means that people might be delayed in presenting to um to healthcare professionals. And also autistic people maybe, you know they might not respond in the way that doctors are looking for, or they might mask their pain. So it's possible that they could be in a lot of pain, but that this isn't picked up because they're not presenting with it typically.
Speaker 2:So, and there's been some really interesting research, I think Dave Moore has been doing about the pain experiences of autistic children, and we know that they do experience pain. It's also it's a line of work that we are doing where we we have some data, which we are preparing for publication, that suggests there is a significant overrepresentation of neurodivergent traits in people who experience chronic pain and chronic fatigue and our data suggests that that relationship is in fact explained by the presence of joint hypermobility. So we've written that up for publication and we're just submitting that at the moment. We've written that up for publication and we're just submitting that at the moment, but I think in a few years time the way that we think about pain should take more consideration you know neurodivergence into more consideration.
Speaker 1:Yeah, that makes a huge amount of sense and it feels like quite an exciting time, I would say, because it's as though, like I think, we've had a big shift in terms of our understanding of neurodiversity and sort of bringing autistic voices to the center of how we understand autism. But then I think we're also now having this shift in terms of how we understand what that experience is. And we've spent so much time sort of focusing on the brain and sort of cognition and processing, and do you think now we need to sort of broaden out our understanding of neurodivergence to really include the sort of physical body as much as the brain?
Speaker 2:Absolutely, kat. I think that is. The next step is to understand that this is beyond the neurotype, that this is a brain, body type and um, and that I mean, and we know that that the sort of neurodivergent experience of, of stimming or hyperactivity is a very physical one as well as a uh, a mental. Yeah, I think that is the. That is the goal is to link the brain and the body in these conditions and to to not just think of them as brain phenomenon, but embodied phenomenon well.
Speaker 1:Thank you so much for all the the work that you're doing to make that happen. It's going to make a massive difference to all of us, I think thank you, it's been a real pleasure thanks so much for listening to the podcast. If you want to know more about Middletown, you can find us on twitter at autism center, or on facebook or instagram at middletown center for autism.