Living with Ehlers-Danlos Syndrome (EDS) as a neurodivergent person illuminates the intersection between our connective tissue differences and neurological diversity. Recent research has revolutionized our understanding of this connection, with groundbreaking studies showing that people with EDS are 7.4 times more likely to be autistic compared to the general population. While EDS occurs in less than 1% of the general population (approximately 0.01-0.02%), the prevalence in neurodivergent communities tells a different story. This isn't just coincidence – it's a powerful indication of how our bodies and brains are intricately connected in ways that make us uniquely ourselves.
The Science Behind the Connection: A Deeper Dive
Dr. Jessica Eccles and her team at Brighton and Sussex Medical School have transformed our understanding of the EDS-neurodivergence connection through their groundbreaking research. Their 2021 study revealed that more than 50% of autistic, ADHD, and Tourette's participants demonstrated elevated levels of hypermobility, compared to just 20% of the general population. This research represents the first comprehensive examination of these connections across multiple neurodivergent experiences, validating what many of us have known intuitively about our bodies and minds.
The statistical significance is striking: the research showed that neurodivergent individuals are approximately four times more likely to be hypermobile than the general population, with particularly strong correlations among autistic women and girls. Even using the stricter hEDS criteria, 28.4% of neurodivergent participants showed hypermobility – more than double the comparison group of 12.5%. This pattern holds true across different neurodevelopmental conditions, with studies showing elevated rates of hypermobility in autistic individuals, those with ADHD, and those with Tourette's syndrome.
Understanding Our Unique Bodies: The Biological Framework
Recent research by Kindgren and colleagues (2023) reveals that the connection between EDS and neurodivergence encompasses a wide range of shared experiences. Many neurodivergent individuals like me experience:
Distinct patterns of sensory processing, particularly in proprioception and vestibular processing
Variations in autonomic nervous system functioning
Different experiences of pain and physical sensations
Unique sleep patterns and energy regulation
Higher rates of co-occurring conditions
The latest findings demonstrate that autistic individuals with EDS often experience pain differently from neurotypical individuals, with unique patterns of pain processing and sensitivity. This research helps explain why many of us have struggled to have our pain experiences validated by healthcare providers who may not understand the intersection of our conditions.
The Autonomic Connection: A New Understanding
Dr. Eccles' team's research has illuminated the fascinating relationship between hypermobility, dysautonomia, and neurodivergent folk. Their work shows that neurodivergent participants reported significantly more symptoms of orthostatic intolerance, and these symptoms correlated directly with the number of hypermobile joints.
This partly helps explain many of our common experiences with:
Temperature regulation challenges
Heart rate variations
Energy level fluctuations
Digestive system differences
Blood pressure responses to position changes
Genetic Insights: The Molecular Connection
Casanova and colleagues (2020) propose an intriguing theory about these connections, suggesting that since collagen and other connective tissues form part of our neurological foundation, variations in connective tissue might influence neurodevelopment.
This research is particularly interesting because:
Mothers with EDS or Hypermobility Spectrum Disorders (HSD) have higher rates of autistic children (over 20%)
There are similarities between EDS and autism at molecular, cellular, and tissue levels
These patterns suggest a possible hereditary connection between connective tissue disorders and certain forms of autism
Healthcare Implications: Moving Toward Integrated Care
The latest research emphasizes the critical importance of integrated healthcare approaches that honour both our physical and neurological experiences.
As shown in the Swedish population study, routine screening for neuropsychiatric symptoms may be necessary for children with EDS or hEDS. This includes:
Early recognition of the connection between hypermobility and neurodivergenct folk
Integration of physical and neurological healthcare approaches
Understanding of how sensory differences affect physical experiences
Recognition of unique pain processing and management needs
The Gender Factor: Understanding Different Presentations
Recent research has revealed important insights about gender differences in how EDS and neurodivergence present together. Studies show that autistic women and girls with EDS often experience distinct patterns of symptoms and challenges, contributing to the understanding of why many face delays in diagnosis and support.
Practical Support Strategies: Living Well with EDS When Neurodivergent
Current research suggests that effective support should include:
Understanding and accommodating sensory processing differences
Adapting physical therapy approaches to match individual needs
Developing personalized energy management strategies
Creating pain management approaches that respect sensory differences
Building support networks that understand both conditions
Future Research and Understanding
Ongoing studies are exploring new aspects of the relationship between EDS and neurodivergence, including:
The role of connective tissue in sensory processing
The impact of hormones on joint hypermobility in neurodivergent individuals
The development of more effective support strategies
The influence of environmental factors on symptom expression
Living Our Truth: Embracing Our Whole Selves
For those of us navigating life with EDS and also being neurodivergent, understanding these connections helps explain so many of our lived experiences. Our unique ways of moving through the world, processing information, and experiencing our bodies are all part of the rich tapestry of human diversity. As research continues to validate what many of us have known intuitively, we can better advocate for ourselves and create spaces that truly support our needs.
References
Eccles, J. A., et al. (2021). "Joint hypermobility and autonomic hyperactivity: Relevance to neurodevelopmental disorders." Frontiers in Psychiatry, 12, 786916.
Casanova, E. L., et al. (2020). "The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders." Journal of Personalized Medicine, 10(4), 260.
Kindgren, E., et al. (2021). "Prevalence of ADHD and Autism Spectrum Disorder in Children with Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome." Neuropsychiatric Disease and Treatment, 17, 379-388.
Baeza-Velasco, C., et al. (2021). "Autism, Joint Hypermobility-Related Disorders and Pain." Frontiers in Psychiatry, 9, 656.
Demmler, J. C., et al. (2019). "Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case-control comparison." BMJ Open, 9(11), e031365.
Maenner, M. J., et al. (2023). "Prevalence and Characteristics of Autism Spectrum Disorder Among Children Aged 8 Years." MMWR Surveillance Summaries, 72(2), 1-14.
Additional Resources
The EDS Society: www.ehlers-danlos.com
Autistic Women & Nonbinary Network: awnnetwork.org
ADHD Foundation: www.adhdfoundation.org
great article thanks