by Dr J Eccles MRCPsych MSc Ph,
Patron of SEDSConnective
Funded by the MRC, MQ Mental Health Research and Versus Arthritis, I led a team of researchers at Brighton and Sussex Medical School (BSMS) on this exciting research project. This year we were able to publish the paper that reported the results, ‘Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain.’
What are neurodivergent conditions?
Neurodivergent conditions include Autism, ADHD and Tourette syndrome, alongside dyslexia, dyspraxia, dyscalculia and others. Neurodivergence is a way of thinking, feeling and experiencing the world differently. Historically these conditions have been thought of as disorders, but we affirm that they are differences, which come both with strengths and difficulties.
Overview of the research: The research into the relationship between neurodivergent conditions and hypermobility found that more than 50% of participants with a diagnosis of Autism, attention deficit hyperactivity disorder (ADHD) or tic disorder (Tourette syndrome) demonstrated elevated levels of hypermobility, compared with just 20% of participants from the general population.
Neurodivergent participants also reported significantly more symptoms of pain and dysautonomia (eg, dizziness on standing up) than the comparison group and this was related to the number of hypermobile joints.
I believe this study is further proof of the link between neurodivergence and physical health issues, demonstrating a direct relationship between hypermobility and increased pain and dysautonomia.
It is clear that health providers need to make improvements to their services to make them more accessible to neurodivergent and hypermobile patients. They also need to move beyond “exclusive” diagnostic categories and traditional boundaries between body and brain that can lead to siloed healthcare.”
This is the first study to make this connection in Tourette syndrome and also to consider neurodivergent conditions together rather than as separate diagnostic groups.
The study aligned with the Neurodiversity movement, aiming to use non ableist language to describe conditions such as autism, and neurodivergent individuals were part of the research team.
Other partners included Sussex Partnership NHS Trust, the Autonomic Unit, National Hospital for Neurology and Neurosurgery, UCL Queen Square Institute of Neurology, Guy’s and St Thomas’ NHS Foundation Trust, St Mary’s Hospital London and Imperial College London
Our aim:
Autism, attention deficit hyperactivity disorder (ADHD), and tic disorder (Tourette syndrome; TS) are neurodevelopmental conditions that frequently co-occur and impact on psychological, social, and emotional processes. Increased likelihood of chronic physical symptoms, including fatigue and pain, are also recognised. Over the years there have been several published case-reports of the association between autism/ADHD and hypermobility, including small studies in children. At the same time there is increasing awareness of autonomic dysfunction and pain in neurodivergent conditions. A few years ago a Swedish population study made clear a link between autism/ADHD and hypermobility/EDS. We wanted to explore whether hypermobility was more common in neurodivergent individuals and whether hypermobility explains why neurodivergent individuals are more likely to experience autonomic dysfunction and pain. We were also interested to see whether hypermobility is associated with Tourette syndrome, given how frequently it co-occurs with ADHD/autism.
Here, we tested for increased levels of joint hypermobility and symptoms suggesting overactive involuntary nervous system issues and musculoskeletal symptoms in 109 adults with neurodevelopmental condition diagnoses.
What we did:
Generalised joint hypermobility (GJH, hypermobility) was determined by physical examination incorporating the Beighton scale in adults with a formal diagnosis of neurodevelopmental conditions (the neurodivergent group, number = 109) and were compared to those in the general population in UK. This measure uses a Beighton scale cut-off of 4 in line with the older Brighton criteria for Joint Hypermobility Syndrome.
Levels of orthostatic intolerance (symptoms relating to difficulties on standing) and musculoskeletal symptoms were compared to a separate comparison group (number = 57) without diagnoses of neurological or neurodevelopmental conditions. Age specific cut-offs for GJH were possible to determine in the neurodivergent and comparison group only. This was done so we could look at levels of generalised joint hypermobility as described by the hEDS 2017 criteria.
What we found:
Levels of hypermobility
The neurodivergent group manifested elevated levels of hypermobility (51%) compared to the general population rate of 20% and a comparison population (17.5%). Using the more stringent age specific cut-off (hEDS criteria) , in the neurodivergent group this level was 28.4%, more than double than the comparison group (12.5%). There were interesting differences between males and females. Statistical analysis suggests that neurodivergent people are 4 times as likely to be hypermobile than the general population, and this is more likely for females. The picture below shows different levels of hypermobility (determined by cut-off of 4 on Beighton Scale) in the different neurodivergent groups in contrast to the comparison group. The line (error bars) indicate how precise we can be about the results
The chart below demonstrates the same findings but using the hEDS age specific cut-off for GJH
Link with physical symptoms
Neurodivergent participants reported significantly more symptoms of orthostatic intolerance (symptoms related to standing up) and these symptoms tracked with number of hypermobile joints as you see from the charts below:
Neurodivergent participants reported significantly more musculoskeletal symptoms and these symptoms tracked with number of hypermobile joints as you see from the charts below:
When performing a statistical analysis to look at what was driving the relationship between neurodivergence and physical symptoms we found that hypermobility was the likely mechanistic factor.
What this means:
In neurodivergent adults, there is a strong link between joint hypermobility, dysautonomia, and pain. Increased awareness and understanding of this association may enhance the management of symptoms and allied difficulties in neurodivergent people, including co-occurring physical symptoms, and guide service delivery in the future. It highlights the importance of screening for hypermobility in neurodivergence and vice versa but also the importance of making health care services more accessible. We are conducting further research in this area
Read the full study here: https://www.frontiersin.org/articles/10.3389/fpsyt.2021.786916/full
Huge thanks to all the team
Jenny LL Csecs1,2†, Valeria Iodice3,4†, Charlotte L Rae5, Alice Brooke2, Rebecca Simmons2, Lisa Quadt1, 2, Georgia K Savage1, 2 Nicholas G Dowell1, Fenella Prowse1,7, Kristy Themelis1,5, Christopher J Mathias 3,4,8 Hugo D Critchley1,2, Jessica A Eccles1,2
1Department of Neuroscience, Brighton and Sussex Medical School, University of Sussex, Brighton, UK
2Sussex Partnership NHS Foundation Trust, Sussex, UK
3Autonomic Unit, National Hospital for Neurology and Neurosurgery, Queens Square, London, UK
4UCL Queen Square Institute of Neurology, Faculty of Brain Sciences, University College London, London, UK5School of Psychology, University of Sussex, Brighton, UK
6Department of Psychology, University of Warwick, Coventry, UK
7Guy’s and St Thomas’ NHS Foundation Trust, London, UK
8Neurovascular Medicine (Pickering Unit), St Mary's Hospital, Imperial College London, London UK