The Link Between Hypermobility, Autism and Anxiety


hypermobility

by Jeannie Di Bon, March 22nd, 2024

The Link Between Hypermobility, Autism and Anxiety


Estimated reading time: 4 minutes Discover the complex connection between hypermobility, autism, and anxiety. Delve into how autism presents differently in women.

Lots of people with connective tissue disorders experience the world differently. This is more than just anecdotal reports from the hypermobile community – there is a growing body of evidence that Neurodivergence is quite common in hypermobility and EDS. Hypermobility has been linked to Autism, ADHD, and more. Let’s explore this connection.

What is Hypermobility?

At a basic level, hypermobility is the ability of joints to stretch beyond the normal range of motion. Being hypermobile doesn’t necessarily mean someone has a connective tissue disorder like Ehlers-Danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD). However, when you struggle with pain, instability, and system-wide symptoms you may want to think about these conditions. Connective tissue, including fascia, is found all over the body. This can have an effect on many different systems including the nervous system.

The Connection Between Hypermobility and Autism

Autism is one type of neurodivergence often reported by both my hypermobile patients and in The Zebra Club Autism is defined as a spectrum of neurodevelopmental conditions that begin in early childhood, though they may not be diagnosed until later in life. It presents as differences in social and emotional interaction, sensory perception, and behavior (1). Autism exists on a spectrum with variability in symptoms, features, and support needs.

While many in the hypermobile community probably began to connect the dots earlier, research is beginning to link Autism and Hypermobility:

  • Individuals with EDS are 7.4 times more likely to be autistic (2)
  • There is a statistically significant relationship between Autism and GJH (Generalized Joint Hypermobility) in a case-control comparison (3)
  • In one study of Neurodivergent individuals, 51% had hypermobility compared to 17.5% in the non-neurodivergent comparison population (Neurodivergence included Autism, ADHD, and Tourette Syndrome)(1)

Understanding the Genetic Link

While hEDS/HSD are thought to be inherited conditions – the genes responsible for this connective tissue disorder are unknown. The same can be said for autism (4). Interestingly, the likelihood for developing autism in individuals with EDS is thought to be genetic and/or environmental because siblings of patients studied also had elevated risk (2).

There appears to be no agreement on why autism and hypermobility occur together. Ideas range from nervous system variances stemming from connective tissue differences, differences in brain structure, immunological dysfunction, endocrine and hormone dysregulation, and more (4).

Autism can present differently in women

In The Zebra Club community, we recently held a meet-up for our Neurodivergent members. We learned that many of these members are women who were diagnosed with autism later in life. What I want to know is why it takes so long for women to become aware of autism. Why does it take women so long to get a diagnosis when they seek one out?

This is not just my observation. Statistically, females have a greater delay in both accessing mental health care and a higher age at diagnosis (5). This is not to say men do not face diagnostic delays as well. This delay in diagnosing women may be due to several reasons, including an underrepresentation in both research and clinical settings. The diagnostic criteria were also traditionally based on the male stereotype (6).

Another reason for the male bias is that females on the autism spectrum may present differently, especially in women with lower support needs (7). Some examples of differences include:

  • Ability to camouflage and compensate also known as masking
  • Strong desire for social relationships and friendships
  • More typical behavior in play – strong imaginations
  • More skilled at observing and imitating peers
  • Less stereotyped, restrictive, and repetitive behaviors

Based on the amount of recent research on autism in women, it appears that the tide may be changing.

The connection between Hypermobility and Anxiety

Hypermobility is also linked to anxiety. In fact, in one study of subjects with panic disorder, 62% had joint hypermobility syndrome (8). Dr. Jessica Eccles joined me on my podcast to share more about her research into the link between anxiety and hypermobility.

Dr Eccles shared “The really striking result was the difference in structure (between hypermobile people and non-hypermobile controls) on both sides of the brain in the amygdala, which is a part of the brain that is involved in emotional processing, fear responses, anxiety, and also is linked to autonomic control as well.”

While there seems to be a biological reason the hypermobile community is more likely to experience anxiety, this may only be one factor at play. I’d also be remiss if we didn’t address the impact on anxiety that comes with living with a condition that is not readily diagnosed or believed. I delve into the toll this can take in this video discussing the myth that “It’s just anxiety”,

Support for Hypermobility

Here are a variety of resources to find support:

The Zebra Club – Movement, Education and Community
Movement Professionals Trained in The Integral Movement Method
The Ehlers-Danlos Society EDS & HSD Helpline
The Ehlers-Danlos Society Healthcare Professionals Directory 
Ehlers-Danlos Support UK
SEDS Connective: Support for Neurodivergent people with symptomatic hypermobility

Future Directions: Research and Advocacy for Hypermobility Syndromes

I am happy to belong to a wonderful community of clinicians, researchers, and activists who passionately advocate and advance research for the hypermobile community.

As Dr. Eccles said in our The Zebra Club Member meet-up in February 2023,
“We need to think more about hypermobility. We need to think more about neurodivergence. And we need to think more about tailoring our approaches in medicine, healthcare, and education to meet the needs of either hypermobile or neurodivergent people and work together to improve the access to personalized healthcare.”

FAQ

What conditions are associated with Hypermobility?

In my experience conditions that frequently occur with hEDS/HSD include MCAS, Dysautonomia, neurodivergence, ME/CFS, sleep disorders, and more.

Is hypermobility related to ADHD?

Yes, ADHD is another type of Neurodivergence that research shows is linked to hypermobility.

Is hypermobility a spectrum disorder?

Symptomatic hypermobility does seem to exist on a spectrum of severity. The term Hypermobile Spectrum Disorder was used to define symptomatic hypermobility patients who may not meet the entire 2017 diagnostic criteria for hEDS.

Works Cited

  1. Csecs et al (2022) Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain. PMID: 35185636
  2. Cederlof et al (2016) Nationwide population-based cohort study of psychiatric disorders in individuals with Ehlers–Danlos syndrome or hypermobility syndrome and their siblings. PMID:27377649
  3. Glans et al (2021) The Relationship Between Generalised Joint Hypermobility and Autism Spectrum Disorder in Adults: A Large, Cross-Sectional, Case-Control Comparison. PMID: 35211037
  4. Baeza-Velasco et al (2018) Autism, Joint Hypermobility-Related Disorders, and Pain. PMID: 30581396.
  5. Gesi et al (2021) Gender Differences in Misdiagnosis and Delayed Diagnosis among Adults with Autism Spectrum Disorder with No Language or Intellectual Disability. PMID: 34356146.
  6. Gould & Ashton Smith (2011). Missed diagnosis or misdiagnosis? Girls and women on the autism spectrum. Good Autism Practice, Volume 12, No.1.
  7. Rynkiewicz et al (2019) Girls and Women with Autism.
  8. Campayo et al (2010) Association between joint hypermobility syndrome and panic disorder: a case-control study. PMID: 20118441

An effort has been made to avoid ableist language in this blog post based on recommendations published by Bottema-Beutel et al, (2021) Avoiding Ableist Language: Suggestions For Autism Researchers.

3 Comments

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Carol sheridan - 2nd April 2024

I found this article really interesting as my daughter, was not diagnosed with Asperger’s till she was 26 yrs of age. She suffered from depression,anxiety,panic attacks and night terrors. She turned to self harming at 14 due to issues at school. ( teachers defining her as difficult and stubborn) she was taken out of school, before her final exams , due to being bullied and her self harming. I found this time in her life very frustrating,as we both knew something was wrong. All my boys had forms of autism, but I was told at the time she did not. I’m glad doctors and specialists have now realised, that girls can have autism, they have suffered so many years without any help from anyone.

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    Anja Bauman - 9th June 2024

    It is almost surreal to read your comment as it could have been written by me, verbatim. All my children including my female born son are now diagnosed with different forms of autism. I have recently realized that I am undiagnosed myself. And that the other issues most of us share that seems to run in the family such as adhd, anxiety, very smooth, flexible, sensitive skin, dizziness when getting up, unhealthy hypermobile joints and even flat feet seems to be part of the package.

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    Jeannie Di Bon - 3rd April 2024

    Thank you for sharing your experience and sorry to hear your daughter had such a difficult time. Yes, I am glad things are moving forward too.