Unmasking the Overlap: Autism, Hypermobile EDS, and the Brain-Body Connection with Dr. Jessica Eccles
Welcome to this week’s Bendy Bulletin!
As someone who lives with hypermobility and works with patients navigating the complexities of Ehlers-Danlos Syndromes, neurodivergence, and chronic illness, I’m constantly seeking out the most forward-thinking voices in medicine. That’s why I’m honored to bring you this conversation with Dr. Jessica Eccles, one of the leading researchers exploring the intricate ties between the brain and body.
Her groundbreaking studies were the first to use brain imaging to examine the link between joint hypermobility and anxiety - and what she’s uncovered since then has opened doors for better understanding of autism, ADHD, fibromyalgia, long COVID, and more. This intersection of neurodivergence and connective tissue disorders has historically been misunderstood or ignored entirely, leaving countless patients - especially women - misdiagnosed or unsupported for years.
In this interview, Dr. Eccles shares why many autistic individuals with hypermobility fall through the cracks, how we can do better as clinicians, and what gives her hope for the future of care and research in this space. Whether you're a patient, provider, or curious reader, I believe this conversation is essential.
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Q&A with Dr. Jessica Eccles
To start, can you share a bit about what drew you to study the brain-body connection - particularly the intersection of neurodivergence and connective tissue disorders? I’m always fascinated by the “why” behind someone’s research path, especially in under-recognized areas like this.
When I was in medical school I was approached by a doctor on an orthopaedics rotation and told I had “swayback” knees - this led to a diagnosis of joint hypermobility syndrome and a stint in pain rehab. I did not think too much more about in terms of my career, but when I came to Brighton and Sussex Medical School in 2009, I met Professor Hugo Critchley. As an autonomic neuroscientist, he was interested in the then emerging link between hypermobility and anxiety and hypermobility and autonomic dysfunction.
We conducted the first ever brain imaging study of hypermobility and found differences in areas of the brain involved in emotion, fear, autonomic control and proprioception. We also found differences in autism and ADHD. We went on - including in my PhD - to look at associations with other psychiatric conditions (e.g. eating disorder, bipolar disorder) and dysautonomia. We also became interested in the link with fibromyalgia and, through that, ME/CFS and long COVID. We came to see that there were so many connections to be explored (e.g. the link between proprioception and emotion regulation in neurodivergence and hypermobility), and hopefully there will be many more to come.
In your experience, what are some of the most common ways autism presents differently in women and girls compared to traditional diagnostic criteria? This feels especially relevant for my patient population, many of whom were diagnosed later in life - if at all.
Current autism diagnostic criteria focus on intense interests, differences in social communication, sensory sensitivities, and a preference for routine and sameness. Many women and girls are overlooked in diagnosis because they appear "social." However, many autistic females can socialize; they often find it draining and confusing and may rely on social scripts to get by. This is sometimes referred to as masking. Their intense interests or preference for sameness may also seem more everyday or less remarkable, and as a result, can be easily missed.
Many people with hypermobility or Ehlers-Danlos Syndromes (EDS) also report sensory sensitivities, anxiety, or difficulty with interoception. How do you see these overlapping features informing clinical care or diagnosis of autism in this group?
This is a major factor when it comes to overlapping issues. Many people may report feeling anxious, when in reality they might be too hot or wearing clothes that are too tight. Many neurodivergent individuals struggle to accurately identify internal sensations and emotions. I believe future research and interventions should focus on improving emotion regulation through sensory regulation. Our research group has already been pioneering the use of interoceptive training (found here and here).
There's growing awareness of “double empathy” and communication differences in autism. Do you think the medical field is evolving in how it communicates with neurodivergent patients - especially those who also live with chronic illness? Where can we improve?
This is a big issue, too. There are lots of people with chronic illness who may be neurodivergent and/or hypermobile. They may have a strong preference for clear, unambiguous communication and consistency. They may also have a strong sense of justice and a deep desire to understand their illnesses. This can clash with a rigid medical system that is often not up to date on conditions like connective tissue disorders or neurodivergence. As a result, they may feel misunderstood or dismissed, which can contribute to medical trauma and reinforce the perception within the system that the patient is "difficult."
I think all of us, as doctors, should strive to be more open - recognizing the impact symptoms have on each individual. We need to be willing to admit when we’re unsure what’s going on and ask for help, rather than assuming these patterns of issues don’t exist.
You’ve published powerful work on the link between joint hypermobility, anxiety, and neurodivergence. What are a few key takeaways clinicians should know when treating patients with this overlapping symptom constellation?
Listen to and believe the patient - they’re not making it up! Think brain and body together. If you can’t connect the issues, consider connective tissues. Sometimes simple interventions, like electrolytes for Postural Orthostatic Tachycardia Syndrome, can make a big difference.
I often hear from patients who feel dismissed or misdiagnosed, sometimes for decades. Do you have any recommendations for providers to better identify autism in patients who present with overlapping physical and mental health concerns?
To keep in mind all of the above! Always consider how one issue may relate to another. For example, if you’re seeing a hypermobile patient, also consider neurodivergence and mental health. If you’re seeing a neurodivergent patient, think about commonly associated hypermobility issues like gastrointestinal problems, allergies, and dysautonomia. I also have a motto I share with my residents: if it seems complex, think hypermobility and neurodivergence.
Do you have thoughts on whether autism should be more proactively screened for in patients with hypermobility syndromes - or vice versa?
Absolutely, and I think this should be done routinely. Some of our data suggest that up to 80% of our neurodivergent patients (females especially) may be hypermobile. There are simple, quick screening tools that could be easily used - and they can make a big difference. But be careful. Just like with COVID tests, there’s always the possibility of false negatives.
If you could wave a magic wand and improve one part of the diagnostic or support process for autistic individuals with hypermobility, what would it be?
We need much better recognition - among patients, clinicians, educators, and policymakers. In the UK, where I work, our healthcare system is under serious pressure from long waiting lists for ADHD and autism assessments. That said, at least these conditions are being talked about. They’re frequently in the news, and there are national guidelines and pathways in place, even if they’re currently overwhelmed. People are engaged - like the ADHD taskforce I’m part of - and are actively working to improve things for the neurodivergent community.
In contrast, hypermobility is barely on the map. No one in power within UK healthcare is talking about it. Many clinics won’t assess it, and there are no national guidelines or services for HSD or hEDS.
Can you speak to any emerging research or trends you’re excited about when it comes to autism and complex conditions like hypermobility, dysautonomia, or MCAS?
I’m excited by so many emerging trends! For example, just last week I had fascinating conversations with pediatricians about the links between hypermobility and neurodivergence, inflammation and lung function, and nutritional deficiencies and autoimmunity. One of my fellows currently has a paper under review exploring neurodivergence and food allergies in children. We’re also planning to publish soon on neurodivergence and hypermobility in bipolar disorder and among people experiencing mental health crises.
Please subscribe and follow my upcoming BendyBrain YouTube channel for more information.
Finally, for patients or readers who suspect they may be autistic but haven’t been formally diagnosed - what would you want them to know?
I want them to know they deserve support to thrive through appropriate care and accommodations. Neurodivergence is not something to be cured but something to be recognized and understood. Once that recognition happens, life may still have its struggles, but everything can start to make more sense.
Bendy Bodies Episode 32 - Embracing Neurodivergency with Jessica Eccles, MD
Why are people with hypermobility so much more likely to be neurodivergent? In this insightful episode of Bendy Bodies, Dr. Jessica Eccles joins us to explore the powerful intersection of joint hypermobility, Ehlers-Danlos Syndromes (EDS), and neurodivergent conditions like autism, ADHD, dyspraxia, and dyslexia.
Dr. Eccles shares surprising findings from her groundbreaking research, including the first neuroimaging study of hypermobility, and explains why people with EDS are significantly more likely to be autistic or have ADHD. She also sheds light on proprioceptive issues, dyspraxia, and the role of anxiety in hypermobile individuals.
With practical advice for individuals, parents, and educators alike, Dr. Eccles encourages us to see neurodivergency not as a deficit, but as a different and valuable way of thinking. If you or someone you love identifies as neurodivergent - or if you're curious about the connections between body and brain - this is an empowering episode you won’t want to miss.
Bendy Bodies Episode 47 - Exploring the Link Between Joint Hypermobility and Neurodivergency with Jessica Eccles, MRCPsych, PhD
Could your bendy joints be connected to your brilliant brain? In this fascinating episode of Bendy Bodies Dr. Jessica Eccles returns to unpack the growing evidence linking joint hypermobility with neurodivergency, including ADHD and autism. Drawing from her groundbreaking study, “Joint hypermobility links neurodivergence to dysautonomia and pain,” Dr. Eccles explores why people with hypermobility often experience heightened anxiety, musculoskeletal symptoms, and autonomic nervous system dysfunction.
She also shares insights into her ADAPT program, a new brain-body approach to anxiety in hypermobile individuals, and offers a glimpse into her exciting future research. Whether you're a healthcare professional, a patient, or just curious, this is a must-listen episode that could change how you think about the connection between the body and the brain.
Last Thursday July 10th: Dr. Zachary Spiritos on Gastroparesis and the Gut-Brain Connection
We were thrilled to welcome Dr. Zachary Spiritos to the podcast to talk all things gastroparesis - a condition that commonly affects people with hypermobility spectrum disorders (HSD) and Ehlers-Danlos Syndromes (EDS).
Dr. Spiritos explains why constipation is often the first and most important issue to address, and how a comprehensive approach - including diet, promotility agents, movement, stress, and nervous system regulation - is key to managing symptoms.
He also shares a powerful reminder: people with invisible illnesses are often dismissed. But, as he says, “Patients will tell you the story - you just have to listen.”
THIS THURSDAY, July 17th: Dr. Pradeep Chopra on Diagnostic Bias in hEDS
We were honored to welcome Dr. Pradeep Chopra back to the podcast to discuss a critical topic: the limitations of the 2017 diagnostic criteria for hypermobile Ehlers-Danlos Syndromes (hEDS).
Dr. Chopra explains how the Beighton score, a key diagnostic tool, may overlook many people with hEDS - especially male-identifying patients who tend to score lower on hypermobility assessments. The result? Missed diagnoses, delays in care, and patients left without the validation, resources, and support they deserve.
He also shares a practical tip for anyone undergoing surgery or dental work: bring a neck brace. For people with connective tissue disorders, protecting the neck during procedures can make a major difference in long-term outcomes.
This is a must-listen for anyone navigating the complexities of diagnosis or feeling dismissed by the medical system. You are not alone - and you are not imagining it.
Well that’s all for this week; thank you so much for reading and supporting this newsletter. Talk to you soon, Bendy Buddies!
Yours in Health,
Dr. Bluestein
So good! Thank you for sharing this.