Connection between hypermobility and neurodivergence
- Dec 18, 2023
- 5 min read
Updated: Jan 12, 2024
Are you neurodivergent but also deal with unexplained bruising and joint pain? Are you hypermobile but also struggle with sensory sensitivities and intense exhaustion after socializing?
The body of research demonstrating the correlation between hypermobility and neurodivergence has been growing exponentially in recent years, yet there's still a huge lack of knowledge within these communities. As a hypermobile, neurodivergent Occupational Therapist myself I did know about this correlation until the last few years! There are likely MANY folks out there with either undiagnosed hypermobility or neurodivergence who would benefit from gaining a full picture view of their unique body.
I'm all about the evidence, so I've provided a summary of relevant research. Links are included below.
1.A 2021 UK study looked at the prevalence of joint hypermobility in adults who already had a neurodevelopmental condition diagnosis (autism, ADHD). The rates of hypermobility were compared to the general rates of hypermobility in the UK. The neurodivergent groups had 51% prevalence of hypermobility compared to the general population rate of 20%. They found the odds of being hypermobile if you were neurodivergent were 4.51 times that of the general population.
2. A small 2023 study took participants who had both an hEDS diagnosis and a fibromyalgia diagnosis and looked at the incidence of neurodivergence in both them and their families. 69% of participants themselves were neurodivergent, and 42% of their relatives had diagnosed neurodivergence (compared to 4.7% of controls).
3. A 2022 study took 448 adult volunteers and had them complete questionnaires assessing autistic traits (RAADS score), fibromyalgia symptoms (ACR criteria), and hypermobility (Beighton’s test). The prevalence of autistic traits was 65%, fibromyalgia 40% and hypermobility 44%. Interestingly, those identifying as non binary or trans had the highest rates of autistic traits, fibromyalgia and hypermobility. This is the first community based study to find a direct link between fibromyalgia and neurodivergence. Many with hEDS are often initially misdiagnosed with fibromyalgia.
4. Another paper provided discussion of the importance of appropriately screening and identifying hypermobility and other common comorbid physical health conditions in neurodivergent children. Some symptoms of hypermobility could mistakenly be attributed to the child’s neurodivergence, and this could lead to them not receiving the proper supports at school and at home.
5. In a paper reviewing current research, the authors present 3 possible reasons for the connection between hypermobility and neurodivergence.
-While joint hypermobility can sometimes be a harmless trait, it can often lead to motor delays, pain, and difficulties with coordination. This in turn could mean that neurodevelopment disorders are simply the cognitive and behavioral results of these physical traits.
-Hypermobility and neurodivergence have many overlapping comorbidities such as immune dysregulation, dysautonomia, and irritable bowel syndrome. Some of these comorbid disorders can trigger, mimic or worsen both mental health and physical health. This means that the presence of hypermobility should be a warning sign to further investigate possible other physical diagnosis in people who are neurodivergent.
-There is growing research in the hereditary nature of both hypermobility and neurodivergence. It is possible that a single gene or a group of genes are responsible for both hypermobility and neurodivergence.
6. Another paper looks at the correlation between neurodivergence and hypermobility. It looks at the hypothesis that this correlation might be a result of the psychological burden of chronic pain/fatigue or possibly adverse life experiences due to hypermobility. This is an open question but has important implications for treatment.
7. A 2022 study found the highest association between autism and hypermobility that causes significant impairment when looking at autism and asymptomatic vs symptomatic hypermobility. They found a 4.9x higher chance of having both autism and symptomatic hypermobility compared to the general population.
8. In a study looking at the most common rheumatological conditions diagnosed in neurodivergent females, hypermobility was diagnosed in 28% of neurodivergent females and fibromyalgia in 26%.
9. The authors of a 2022 study highlight the importance of interdisciplinary communication between professionals focused on care of neurodivergent female those focused on care of hypermobile females. They also emphasize the importance of screening for related conditions so professionals can make timely referrals. The siloed nature of our healthcare system often means that a comorbid diagnosis might be missed due to on specialist not being appropriately aware of common comorbidities.
Phew, if you made it through that long list, congrats! I think it’s important to see how many different researchers all came to the same conclusion—if you are neurodivergent you are more likely to be hypermobile and vice versa. While the correlation is strong, this does not necessarily mean that everyone with one condition has both. However, if there’s a little voice inside your head telling you to explore further, listen!
If you have diagnosed neurodivergence as well as lots of unexplained symptoms like muscle/joint pain, fatigue or clumsiness, it might worth getting evaluated by a physician to see if you meet the criteria for HSD or hEDS. The best way to find an EDS literate physician is by looking at the provider directory on the EDS foundation website9 or joining your local EDS Facebook group and searching for a list of local providers. However, as you wait for an appointment, there are still many adaptations you can make to your daily life whether you eventually meet the criteria for a formal diagnosis or not! I work with many people who don't have a formal diagnosis, helping them to make adaptations to manage their symptoms pre or post diagnosis.
If you have diagnosed HSD or hEDS as well as unexplained symptoms like sensory sensitivities, executive dysfunction, difficulty with organization or initiating tasks, or being exhausted by social situations, it might be worth exploring to see if autism/ADHD is a good fit for your symptoms. While you can absolutely pursue formal diagnosis by a psychiatrist, it’s also extremely valuable to learn from lived experience of people who match your identity (age, gender identity, late diagnosed, etc). The medical community is largely operating from an outdated definition of neurodivergence that centers white, male children. MANY adults, especially female identified folks, are missed by the formal diagnosis process because of the lack of up to date knowledge. Self diagnosis is valid, as a 2015 study showed self diagnosis tools to be quite accurate10.
Again, even without a formal diagnosis there are so many things you can change in your day to day to make your life more sustainable. Occupational Therapists are experts at helping people tease out the specific reasons behind everyday life difficulties. And as an OT with lived experience of both hypermobility and neurodivergence, I have lots of knowledge about the very specific intersection of these two conditions. If you suspect you might be hypermobile and/or neurodivergent, working with me could help you understand your body more fully and craft a life that works with your body, not against it. It's never too early or too late to make a change!
Head over to my website to book a free 20 minute consultation!
-Andrea Cox, OTR/L
References
Comentarios