Embracing Neurodivergency with Jessica Eccles, MD

[00:11] Jennifer Milner: Hello and welcome to Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility for dancers and other artistic athletes. This is Jennifer Milner here with co-host Dr. Linda Bluestein.

[00:25] Dr. Linda Bluestein: Hello everyone. Before we introduce today's guest, we'd first like to remind you about how you can help us help you.

[00:28] Jennifer Milner: First, subscribe to the Bendy Bodies Podcast and leave us a review. This is helpful for raising awareness about hypermobility and associated disorders. Second, share the Bendy Bodies Podcast with your friends, family, and providers. We really appreciate you helping us grow our audience in order to make a meaningful difference. This podcast is for you.
[00:48] Our guest today is Dr. Jessica Eccles, senior clinical academic psychiatrist at Brighton and Sussex Medical School in the UK, and specialist in brain-body neuroscience. She led the first neuroimaging study of hypermobility, and her work has focused on neuropsychiatric manifestations of connective tissue disorders. Her work on the relationship between hypermobility and anxiety has led to the first non-drug treatment trial of a targeted therapy for anxiety and hypermobility. She has published groundbreaking journal articles on the relationship between hypermobility, autonomic dysfunction, and altered interoception, as well as between pain, fatigue, brain fog, and neurodevelopmental conditions.
Dr. Eccles, hello and welcome to Bendy Bodies.

[01:55] Jessica Eccles, MD: Thank you so much. It's a pleasure to be here.

[01:58] Jennifer Milner: We are so thrilled to have you here, and we cannot wait to dive in. Before we get started, we might be using vocabulary today that is unfamiliar to some listeners, so we would love for you to go through a few terms. Dr. Eccles, can you explain the differences between neurodiversity, neurodivergence, and neurotypical?

[02:16] Jessica Eccles, MD: It's a really good question, Jennifer, and I think a lot of people can get a little bit confused in this area. Essentially, neurodiversity is a way of describing a group of people, and within any group there are going to be variations in the way that people think and feel and the way that their brains are. When one person is neurodivergent, that's the property of an individual, and typically when we talk of neurodivergence, we think about brain differences — things like being an autistic person, having ADHD, having dyslexia, which is difficulties with words, dyscalculia, which is difficulties with numbers, and dyspraxia, which is a difficulty with where you are in space, which is to do with proprioception.
[03:12] And I think an important point is that these things are not necessarily disabilities or disorders. They are differences, and they're a source of great creativity in the general population and throughout history. Having people who think differently is very important — need I say — for civilization as a whole. And the neurodiversity movement advocates for moving away from the idea that such conditions are somehow aberrant or disordered and need to be cured. Rather, people should be properly supported and embraced to function at the best capacity they can.

[03:58] Jennifer Milner: That was a really fantastic description, and that was beautiful. I was sitting there trying to process all of it as you were saying that. Thank you, that was excellent. It's so hard sometimes for people to wrap their minds around the differences in vocabulary, and the importance, as you said, of not looking at it as a disease or a disorder but as a difference. You just explained that incredibly well. Thank you.
[04:32] Your areas of expertise are listed as brain-body interactions, joint hypermobility, and liaison psychiatry. Your research areas are neuroscience, psychiatric manifestations of connective tissue disorders, and mechanisms of chronic pain and fatigue. So in short, you're one of the most perfectly placed people to speak on this topic. What led you to pursue the path that you have been on? What drew you to this research?

[05:00] Jessica Eccles, MD: That's a really interesting question, Jennifer. When I was at medical school in the UK, I became interested in the philosophy of science and the philosophy of mind. So I knew I wanted to specialize in something to do with psychiatry and the brain. While I was doing an orthopedics rotation, I was approached by one of the doctors there and told that I was hypermobile. So I had this kind of interest in hypermobility.
[05:34] When I came to pursue my academic psychiatry training at Brighton and Sussex Medical School, my then supervisor, Professor Hugo Critchley, when we were talking about the type of work that I would be doing, said, "I'd like you to do a brain imaging study of hypermobility. Have you heard of it?" And I said, "Well, actually, interesting that you should say so, because I think I have it."
[05:55] So I got into the field through that particular brain imaging study, which was published back in 2012. What we did was — it was a relatively new brain imaging center at a new medical school, Brighton and Sussex Medical School — we took all of the people who had previously been through the brain scanner as so-called healthy controls, and we assessed them to see if they were hypermobile or not. And we looked at the differences between the hypermobile and the non-hypermobile in terms of the structure of their brains. We found the biggest difference was that the hypermobile people had different structure in an area of the brain called the amygdala, which is responsible for fear and emotion processing.
That really kick-started my research interest in hypermobility brain-body interactions. At the same time, we found some interesting differences in brain structure that had previously been observed in autism and ADHD, which got us thinking more about the relationship between hypermobility and neurodevelopmental conditions.

[07:10] Dr. Linda Bluestein: That's so interesting. So many people who are hypermobile do have more anxiety, and we know that there are definite differences there, but I think a lot of people are not really aware of the connection. They often feel guilt or shame over the anxiety portion — there's a lot of "I shouldn't feel this way." When I first came across your study back in 2017 when I was writing a paper, I was like, oh my gosh, this is so amazing and such fabulous information for people to have. I would like as many people as possible to be aware of your research, because it's so important and validating — oftentimes I think we blame ourselves for things that just makes it worse, right?

[07:59] Jennifer Milner: Right.

[07:59] Jessica Eccles, MD: Yeah, I think that people with hypermobility, because of the way their brain and body interact, may be more likely to experience anxiety — perhaps because they have slightly different structure to their brain, but also because of the sensitivity of their autonomic nervous system, the involuntary nervous system that's responsible for fight-or-flight responses. And I think when you talk to patients and people with hypermobility, giving them that understanding — that this may be why they're more likely to experience anxiety because of how their bodies are — can be a very restorative narrative.

[08:42] Jennifer Milner: That makes a lot of sense. So when you first started in your field and when you first started finding these connections — the difference in brain structure between hypermobile and non-hypermobile, and then between people with anxiety and without it — did you find a fair amount of research already out there on the brain-body interactions, especially as it pertains to hypermobility?

[09:06] Jessica Eccles, MD: There's been a solid amount of research since the '90s, mainly in Spain, about the link between hypermobility and anxiety. That was very much undisputed — there were tens and tens of studies all saying the same thing, that hypermobile people were more likely to experience anxiety. But beyond that, there wasn't a huge amount.
[09:29] We knew that hypermobile people were more likely to experience pain. So I started thinking about the relationship between hypermobility and fibromyalgia, which led into thinking about the relationship between hypermobility and ME/CFS. There was a literature, especially in children, about hypermobility and difficulties with coordination, so developmental coordination disorder, which is called dyspraxia. And there were a few case reports — individual patients or a couple of patients — where it was suggested that there was definitely a link between, say, autism and Marfan syndrome or autism and joint laxity, which got myself and Hugo thinking about the relationship between hypermobility and neurodevelopmental conditions more generally. So we kind of went with that as a potential idea.

[10:20] Jennifer Milner: So it's kind of organic the way that you followed one step to the next to the next. I have said for years that in my personal practice, I see a really high link between hypermobility and neurodivergence. Just casually looking at it, I see probably 80% to 90% of my dancers with EDS or hypermobility spectrum disorders who are also neurodivergent in some way — they're diagnosed with ADHD, they're autistic, they are highly gifted and also have sensory processing disorder. They have all of these things that go with it. So just in my casual client work, I have seen that and wondered, there's got to be a link. So you think that neurodivergence is something you see as more common in hypermobility than in the general population?

[10:26] Jessica Eccles, MD: Yes.

[11:24] Jennifer Milner: Is that fair to say?

[11:25] Jessica Eccles, MD: That's definitely fair to say. I work clinically in what we call a neurodevelopmental clinic, which is where we see autistic people, people with ADHD, Tourette syndrome. We've published a preprint — hasn't been peer-reviewed yet — where we show that you're much more likely to be hypermobile if you have these diagnoses than if you are a control.
[11:54] But whilst we were doing that research, we were somewhat pipped to the post by a paper that encompassed the whole population of Sweden. Some countries in the world have very important health registries, so they can look at their whole population. And in the whole population of Sweden, they discovered that if you had a diagnosis of a hypermobility condition — so either JHS or EDS — you were 7 times more likely to have a diagnosis of autism, or nearly 6 times more likely to have a diagnosis of ADHD. That is really very compelling, coming from a whole population. Of course, not everyone in that population with hypermobility will have been diagnosed and be in the registry, and the same is true of the neurodevelopmental conditions — not all autistic people have received a diagnosis, same with ADHD. So those figures — times 7 and times 5 or 6 — are really probably just the tip of the iceberg.
[13:01] In our clinical work, we find it's very rare to see an autistic person or a person with ADHD who is not hypermobile. And alongside the hypermobility, we often see other related phenomena — pain, fatigue, autonomic dysfunction, sensory sensitivities, allergies. I think it's all coming together, and I think we can be quite convinced that there is a link. That does not mean to say that all hypermobile people have neurodevelopmental conditions or all people with neurodevelopmental conditions are hypermobile, but there certainly seems to be something very intriguing going on.
[13:48] And I think it's important to recognize this because it means that, say, if you're seeing someone with hypermobility, you think, should I be screening for ADHD, autism, or Tourette syndrome? And if you see someone with autism, ADHD, or Tourette syndrome, you're thinking, should I be looking to see if they have joint hypermobility? Because this may explain a lot of the physical problems that they experience — things like pain and fatigue, but another big issue is gastrointestinal disturbance. A lot of patients with neurodevelopmental conditions complain of irritable bowel and irritable bladder. Recognizing that this may be related to hypermobility can be quite important for them.

[14:42] Jennifer Milner: I think that a large population of our listeners are parents of hypermobile artistic athletes, and I think that a lot of them out there right now are maybe crying quietly or feeling a huge sense of relief that you're putting a name and a face to instincts that they have had for a really long time about their dancer and about their child. I have a dancer who is extremely hypermobile, undiagnosed with any sort of disorder, but probably there, and who has trouble partnering because the sensory issue — the touch of a hand or the feel of a pulse — can be really difficult for her. Those dancers feel like they're crazy when they're in class and they're so distracted by the tag of their leotard, or they are having such a hard time focusing. And as we know, females present very differently than males do for ADHD. So what you are saying today, I think, is really validating a lot of people and their feelings and making them think, oh my gosh, I'm not crazy. So we are so grateful for you for this.

[15:51] Jessica Eccles, MD: Yeah, there's a phrase — lots of issues, think connective tissue differences. I think it really does seem to join the dots in many different ways.

[16:04] Jennifer Milner: It does, and that's a phrase we use a lot. So help me connect the dots one more time. I know you briefly mentioned it, but what do you see as the link between neurodivergence and hypermobility? Are you able to pinpoint something, or are you just at the point where you're able to say it's a higher likelihood?

[16:28] Jessica Eccles, MD: Unfortunately, I think we're just at the point where we're able to say it's a higher likelihood. We were talking earlier about the relationship between joint hypermobility and anxiety, and that is a story that is quite easy to tell and to understand — in terms of differences in brain structure, differences in autonomic nervous system functioning. There is a story about how that may be related to connective tissue issues in the periphery that mean that blood doesn't return to the heart as well, which means you're more likely to have a high heart rate and fight-or-flight response. So the anxiety and hypermobility story makes a lot of sense conceptually.
The hypermobility and neurodivergence story is slightly harder to tease apart mechanistically. My gut instinct is that these are things that you are essentially born with — maybe inherited together, or some process to do with connective tissue development is also affecting brain development. But this is just a hypothesis.

[18:45] Dr. Linda Bluestein: And in your 2012 paper, you actually used — if I remember correctly — a Beighton score of greater than 1 for the hypermobile group, right? I thought that was fascinating. You commented that you were using more inclusive criteria for those purposes, and you also talked a little bit about the connection with the severity or the degree to which someone was hypermobile. Are you able to comment on that at all?

[19:12] Jessica Eccles, MD: Yes. In some ways it was a very practical decision, in that the literature is quite contentious in terms of at what point you decide that a given degree of hypermobility is significant. Even at that point, it was still very contentious — some authors would suggest 4, some would suggest 5. And maybe I was naive, but I thought, well, there's none or there's some. By doing it as none or some, we were able to very conveniently divide the group in half, which made a lot of sense statistically.
[19:49] But what we did find — which was interesting and relates to this topic — is that the higher the Beighton score, the smaller an area of the brain in the parietal cortex that's responsible for processing where you are in space. That makes sense in terms of what we're hearing about hypermobility, coordination problems, and dyspraxia.
[22:46] Is the Beighton score the only way that we can measure the degree of hypermobility? Probably not. One of my research projects at the moment is looking at anxious people to see if the number of connective tissue features predicts any aspects of autism or related conditions. Our initial findings are that it's not so much the Beighton score, but the number of connective tissue features in the Ehlers-Danlos syndrome criteria — things like soft stretchy skin, arachnodactyly, prolapses, things like that. The cumulative total of those seems to predict the number of sensory processing differences in autistic traits.

[23:32] Dr. Linda Bluestein: That's really interesting, especially given that the Beighton score in the group we're really speaking to — dancers — is particularly problematic because it's biased towards the upper extremities, and dancers tend to get more injured in the lower extremities and tend to have more issues there. I've observed that even in my patients who are not dancers — they often have more issues in the lower extremities, with ankles and hips and things that are not included in the Beighton score at all.

Jessica Eccles, MD: That is a very important point. Although it is a useful tool, it misses out several of the really important subluxable joints. And what is also interesting is that it changes with age. Some people become — well, they're not becoming less hypermobile, but their Beighton score may go down. We published some work in January that showed that pain and fatigue symptoms correlated with the historical Beighton score rather than the current Beighton score. So it's important when you're talking to patients to determine how hypermobile they've ever been, rather than merely how hypermobile they are now.

Dr. Linda Bluestein: Sure. And I love the 5-point questionnaire for that reason, although I often find when I ask people, "Can you now or could you ever touch your thumb to your forearm?" they go, "What?" — it's easier to do that in real time than to remember. But yeah, I'm glad you pointed out the issue with other joints, because the shoulder, which we know causes lots and lots of problems for people, is not included in the Beighton score. So I'm glad that you talked about dyspraxia.
We'd like to talk a little bit about proprioception as well, because we find it quite fascinating that dancers and athletes have difficulty with proprioception. We would typically think of them as having good proprioception. Ones that are hypermobile often really struggle with that, and it makes it very difficult for them to avoid going into that hypermobile range. Can you talk a little bit more about the relationship between neurodivergence and proprioception and dyspraxia?

[23:33] Jessica Eccles, MD: This is a really big feature. The spectrum of neurodivergence includes things like dyspraxia, dyslexia, and dyscalculia, which in and of themselves are not necessarily diagnostic of anything else, but taken in combination or in a history, they're often an indicator that there may be another neurodevelopmental phenomenon going on. In our clinics, it seems that almost all of the patients have had some issues either with dyslexia, dyspraxia, or dyscalculia. I think people often forget about dyscalculia and dyspraxia and think, "Oh yes, I was diagnosed with dyslexia at school." But with dyspraxia specifically, there's definitely a substantial body of work linking hypermobility to dyspraxia.

[24:29] Jennifer Milner: Well, I work with a lot of pre-professional dancers, and it is surprising to the teachers. They will call me and say, with my extremely hypermobile dancers, why are they so clumsy? Why can they organize themselves to do this incredibly complex dance move and yet they can't figure out where they are in space without having the mirror? Trying to have that conversation and educate the dance teachers has been really interesting. And it's really disheartening for the dancers because they think, this is my chosen career, this is what I'm working towards — why can I not balance with my eyes closed? A lot of them are underdiagnosed.

[25:19] Jessica Eccles, MD: Yeah, there is a huge amount of underdiagnosis. But I think there is also some talk about proprioception as a potential treatment target. This is completely out there, but the potential that there could be movement therapies or proprioceptive therapies that could improve things like anxiety and other states — that by improving proprioception, you may improve interoception and well-being in a more general way.

[25:53] Jennifer Milner: That makes a lot of sense. I would be interested to see that research.
[25:58] In general, girls seem to be underdiagnosed in the neurodivergent population. Since ballet is often comprised mostly of girls, especially in the early years, we could see dancers spending most of their career either unaware that they may be neurodivergent or masking to be able to interact with others on a daily basis. So if someone suspects, perhaps after listening to this podcast, that they are neurodivergent, what first steps might you suggest they could take?

[26:26] Jessica Eccles, MD: I think it's important to talk to your — in the UK, we call it a general practitioner — so your family medicine doctor, to see what the options are in terms of pursuing a further assessment. It can be really helpful to read things online and even potentially to do some screening questionnaires to see if the stories and experiences of other neurodivergent people resonate. A good resource that we recommend to our patients is something called attitude.com. They have a lot of interesting articles about neurodivergence.
[27:06] So I think doing a little bit of research, seeing if these stories resonate, particularly finding stories of other neurodivergent women — because the female presentation can be different. As you say, women are much more likely to be able to mask their symptoms and go under the radar. But what we notice a lot is that masking has a toll in terms of feeling socially exhausted and needing quite a bit of time to rest and recover after social interactions.

[27:43] Dr. Linda Bluestein: That's actually really interesting, because fatigue is such a common complaint. So that's an interesting potential contributor that I hadn't really considered. Yeah, interesting.

[27:55] Jessica Eccles, MD: It's something that I'm definitely thinking about in terms of the relationship between pain and fatigue conditions like fibromyalgia and ME/CFS and possible relationships with neurodivergence. It's just ideas at the moment, but there are studies to be done within that field.

[28:13] Jennifer Milner: We love the directions your brain goes and the benefits that it gives to all of us. So think away, and grow with it.
[28:28] On the topic of dancers and girls being able to mask better — I think a lot of dancers may end up saying, "Oh, I'm just an introvert," and not realizing there may be a deeper issue running through it, especially if they have other symptoms going on as well. If they have possible poor proprioception or ADHD, it is definitely something worth getting checked out, because it would be helpful to know and to perhaps get some help with it.

[28:58] Jessica Eccles, MD: Absolutely. And I think that's also something that we're coming to appreciate more and more — how often these things happen together. Just because you have an autism diagnosis or are autistic doesn't mean to say that you can't also have ADHD, and vice versa.

[29:11] Dr. Linda Bluestein: That makes sense. And as we discuss neurodiversity more in the general population, do you have any advice that you would give to teachers or parents that could help them be more effective in their roles with a neurodivergent dancer?

[29:33] Jessica Eccles, MD: I think, speaking to what I was saying a little bit earlier, it's really important to think of these conditions as both a source of strength and also possibly a source of need. So identifying things that are going well, recognizing the strengths of the individual, respecting those, working with those, and not thinking, "I have this disorder, I won't be able to do what I want to do in my life." But also being appreciative that there are some things that may be needed — adapting or adjusting routines, and being aware of the potential for sensory overload or sensory overwhelm. It's a good attitude for everything, but making sure that things are paced appropriately and that all appropriate adjustments can be made given the underlying issues.
[30:36] But really, it shouldn't be thought of as something that should hold you back or be a hindrance — it's something to be embraced. In the UK, in fact, there is an organization called Embracing Complexity that represents different charities that deal with neurodivergence, and I like that as a phrase. Complexity is something that we're often scared of, but it is something to embrace. Really important artists and thinkers throughout history are likely to have been neurodivergent. And that's one of my new projects — exploring the relationship between creativity, hypermobility, and neurodivergence.

[31:13] Jennifer Milner: That's so interesting, because there's a lot of conversation in the dance world right now. We've used the time from the pandemic and from lockdown to look at what is going on in the dance world that we need to address and what things we could change. And one of those conversations is, should you suffer for your art? There's that whole thought that you have to suffer, you have to be willing to cut off your ear, in order to create great art. And I think it's incredibly validating for people to hear, as you said at the beginning, that neurodivergence has been a source of creativity throughout civilization — a source of huge creativity. We don't want people to think about neurodivergence as an illness or a problem or something that needs to be fixed. We're talking about ways to get you help in order to be the best you that you already are, right?

[31:24] Jessica Eccles, MD: Exactly.

[32:23] Jennifer Milner: And we want people to think about what makes them different as something that makes them incredibly special, and also means they may have a lot to offer — let's help them offer that great creativity without feeling like they have to go through the suffering that goes with it. Help them alleviate some of that.
[32:42] I really appreciate that you have been speaking about this from such a positive perspective and wanting to encourage people who might think that this is something they've got going on.

[32:55] Dr. Linda Bluestein: And I have a question on that exact same thread. So many of the people that I work with really struggle because the significant people in their life — whether it's their spouse, their family, their friends — don't understand why this person has so much pain, why they have so much fatigue, why they have difficulty concentrating and focusing.
[33:26] We all know how our own body feels and how our own body works. And so when we're talking to other people who are hypermobile and struggle with some of the same things, we're like, "Oh yeah, we get it." But when we're talking to people who have never dealt with those things — who are very linear thinkers, who are not distractible, who don't have pain or whatever — do you have any suggestions for how to help them be more understanding or more open-minded with the person who is experiencing these conditions?

[34:07] Jessica Eccles, MD: If they can, and they have the time, to read a little bit more about these conditions and about how they may affect their friends and family. I think with everything, knowledge and education is power in terms of moving forward. And if they can avail themselves of as much good information as is possible, that would be fantastic.

[34:36] Jennifer Milner: You have given us so much to think about and to encourage so many of our listeners, and we are really grateful. Was there anything that we did not discuss today that you wanted to make sure that we got to?

[34:49] Jessica Eccles, MD: No, I think we've covered everything really. There is so much that we could talk about and different avenues and rabbit holes to go down, but I think we've covered the important points.

[35:04] Jennifer Milner: Well, we appreciate it. We will have to have you back so that we can go down other rabbit holes together, because this has been fantastic. Where can people learn more about you and your work?

[35:17] Jessica Eccles, MD: If you want, you can follow me on Twitter. I'm @bendybrain. Otherwise, if you type my name and hypermobility into Google — Jessica Eccles hypermobility — it will take you to my institution's webpage, which is Brighton and Sussex Medical School in the UK, which has all of my contact details and links to articles. And I also have a few videos on YouTube about similar topics.

[35:38] Jennifer Milner: And I will say I've watched those videos and they are excellent. So anybody who's interested in going down these rabbit holes on your own, I highly encourage you to do that.
[35:56] Thank you so much. You have been listening to Bendy Bodies with the Hypermobility MD. Today we've been speaking with Dr. Jessica Eccles, senior clinical academic psychiatrist at Brighton and Sussex Medical School in the UK and specialist in brain-body neuroscience. Dr. Eccles, thank you so much for taking the time to come on the Bendy Bodies Podcast and for sharing your expertise with us today.

[36:17] Jessica Eccles, MD: Thank you, it was a pleasure.

[36:17] Dr. Linda Bluestein: Thank you so much, we really appreciate it. Thank you for joining us for this episode of Bendy Bodies with the Hypermobility MD, where we explore the intersection of health and hypermobility for dancers and other artistic athletes. Please leave us a review on your favorite podcast player. Remember to subscribe so you won't miss future episodes. Be sure to subscribe to the Bendy Bodies YouTube channel as well. Thank you for helping us spread the word about hypermobility and associated conditions.
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[37:19] The thoughts and opinions expressed on this podcast are solely those of the co-hosts and their guests. They do not necessarily represent the views and opinions of any organization. The thoughts and opinions do not constitute medical advice and should not be used in any legal capacity whatsoever. This podcast is intended for general education only and does not constitute medical advice. Your own individual situation may vary. Do not make any changes without first seeking your own individual care from your physician. We'll catch you next time on the Bendy Bodies Podcast.