Why are do many Autistics also experience other neurodivergences, EDS, or chronic pain?

By MAQQI

You may have noticed that a lot of Autistics have ‘other stuff going on’ like ADHD, digestive issues, dyspraxia, or Ehlers Danlos Syndrome. 

There’s no doubt that Autistics tend to be more likely to experience one or more of these. We’ve known this for a long time, and the list is long – differences in sensitivity to light, scent, temperature or pain, dyslexia, dyscalculia, synaesthesia, proprioception, fibromyalgia and other forms of chronic pain, sleep issues, digestive issues, or hypermobility just scratch the surface. If there’s ‘a thing’ out there, chances are Autistics are more likely than most to experience it.

So, what’s going on? That’s actually a really tricky question to answer because while some examples like ADHD or differences in sleep patterns apply to a majority of Autistics, others might arise for just 15% or 5% – there’s no consistent pattern and pretty much every Autistic person has a different mix of characteristics to other Autistics.

To start to make sense of this we have to step back from ‘autism studies’ and instead focus on research into Ehlers Danlos Syndrome (EDS), hypermobility, and dysautonomia. Just as with Autistics, it’s been noted for a long time that hypermobile EDS and other forms of hypermobility tend to be accompanied by things like anxiety, dyspraxia, fibromyalgia and other pain issues, gut issues, sensory differences, impacts on proprioception, on interoception… If you are thinking “that list looks familiar!” well, yeah.

Now to the research. At the centre of this story is Dr Jessica Eccles of the Brighton and Sussex Medical School and a small number of others who have produced a series of studies over the last decade and more investigating the intersection of neurodiversity and hypermobility. What they show is interesting – that 50% of Autistics, 50% of ADHDers, 60% for Tourette syndrome meet the criteria for hypermobility. For neurodivergent people with a diagnosis who were assigned female at birth that rises to 80%. Eighty percent! There’s a whole other story behind that statistic I’ll come back to another day but still… wow.

A great example of this work is a paper published in 2022 (1) that revealed not just that crossover between hypermobility and Autistics, ADHDers and Tourette syndrome, but linked them all to dysautonomia and, crucially, to chronic pain. The more hypermobile joints a neurodivergent person has, the more dysautonomia and chronic pain showed up. Dysautonomia refers to atypical responses of automatic body processes – things like heart rate, digestion, temperature or pupil dilation – but also connects to things like startle reflex or proprioception.

An earlier paper from 2014 (2) by researchers from Barcelona, the Sussex team, and Maastricht had already shown a clear connection between hypermobility and anxiety.

Another from Carolina Baeza‑Velasco and others from University Paris Descartes in 2018 (3) also showed a link between neurodivergence, hypermobility, dysautonomia, and fibromyalgia, and suggested how these may be interconnected. 

Other papers over the last 10 years have shown connection between things like pain and attentiveness, between interoception and emotions, between interoception and sense of self and more. This applies to all humans, but now we know that these interconnections apply even more so for many neurodivergent people, and exacerbate many of the negative experiences neurodivergents encounter like social anxiety, disrupted sleep, meltdowns, balance and coordination and even sensory sensitivities. And all of these are associated with poorer mental health generally.

The upshot of all this is that we don’t just have ‘Autistic’ or ‘ADHD’ or ‘EDS’ or ‘anxiety’ or ‘proprioception’ or ‘interoception… but a far more complex story where apparently unrelated features like hyperfocus, balance, social skills, hypermobility, IBS, pattern recognition, sensory sensitivities and pain sensitivity form a constellation of human characteristics that are more likely to occur together, that affect each other, and that impact mental health.

Many of these characteristics make life more physically and psychologically more exhausting and thus more stressful. Because Autistic people are more likely to experience several at once, is it any surprise that focusing on incredibly complex tasks like human social interactions or forming spoken communication is a bit of a struggle at times?

So, here’s a shout-out to Autistic people everywhere, pushing on day after day despite having their needs dismissed or – worse – being judged for them.

And if you have an Autistic in your life, perhaps this is a good moment to pause, and recognise them for the absolute champion they are.

Is this you? Is this your family member? How have medical staff responded to these needs in your experience? Let us know about your experiences!

1 – Csecs JLL, et al. Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain, 2022 https://doi.org/10.3389/fpsyt.2021.786916 

2 – Mallorquí-Bagué N, et al. Neuroimaging and psychophysiological investigation of the link between anxiety, enhanced affective reactivity and interoception in people with joint hypermobility, 2014 https://doi.org/10.3389/fpsyg.2014.01162 

3 – Baeza‑Velasco C, Sinibaldi L, Castori M, Attention‑deficit/hyperactivity disorder, joint hypermobility‑related disorders and pain: expanding body‑mind connections to the developmental age, 2018 https://doi.org/10.1007/s12402-018-0252-2