Imagine waking up each day with a body that feels both familiar and unpredictable, where the simplest movements demand careful calculation, and even routine tasks like washing the dishes can hold hidden challenges and pain. This is the world of those living with Ehlers-Danlos Syndrome (EDS), a condition that intertwines with the very fabric of who they are and all activities of daily life. Another layer to this complexity that is gaining recognition and deserving of deeper understanding—is the intersection with the brain and the discussion around neurodiversity.

Why do so many individuals with EDS also experience symptoms associated with neurodivergent conditions like autism? Is this a coincidence, or is there an underlying connection that science is only now beginning to unravel? These questions form the core of our journey through this topic, where curiosity meets compassion, and knowledge becomes a beacon of empowerment. 

Today, more and more medical experts are talking about the connection between EDS, and some patient experts such as Camille Schrier (Miss America 2020) who spoke in July at the EDS Society conference shared study findings including as quoted below from her presentation:

• There’s a known association between joint hypermobility and neurodivergence, dysautonomia and pain (Source)
• Studies have suggested that individuals with EDS have a higher incidence of certain mental health conditions compared to the general population, specifically found in a 2016 Swedish study revealing interesting data points:
  

Data shows that hEDS and HSD patients are…
7.4x more likely to have Autism Spectrum Disorder (ASD)
5.6x more likely to have ADHD

That is quite a statement from a 2016 study, imagine if it were more recent what it might report as awareness grows! As you know, there is a lot to unpack and unravel on this topic, so get comfy and settle in for a long read.

To begin unravelling this complex and sometimes conflict-driven issue in the patient community, let’s start with a story that might resonate with many. Picture a middle-aged woman who, after the tumult of childbirth, notices changes in her body she can’t quite explain. Her joints ache and give way unexpectedly, her skin bruises at the lightest touch, and fatigue seems to seep into her very bones. After years of questioning and searching, she receives a diagnosis: hypermobile EDS. Relief mingles with uncertainty as she navigates this new reality.

Yet, as she adjusts to life with EDS, she starts noticing other signs—difficulty focusing, heightened sensitivity to sounds and lights, and a sense of being overwhelmed in social settings. Could these be related to her diagnosis, or is something more at play? The revelation of potential neurodivergent traits adds a new dimension to her journey, prompting questions about managing these interconnected challenges.

In a world where chronic conditions are frequently misunderstood, we share a fresh perspective on managing the physical symptoms of EDS while embracing neurodivergent traits as strengths.

Neurodevelopmental disorders usually emerge in childhood (although some may not be diagnosed until adulthood) and can affect a person’s development. Autism and Attention Deficit Hyperactivity Disorder (ADHD) are the most common, but these conditions also include intellectual disabilities, learning disorders, and cerebral palsy, among others (Source). While such conditions can affect memory, language, behavior, learning, emotions, and motor skills, many people can learn to effectively manage their challenges with the right interventions, support, and accommodations. Add these complexities of the brain to the multisystemic bodily impact hypermobility has on the human body, and a very complex body/brain imbalance can occur. We wanted to explore the basics of the issue and offer this as the first in a series of articles to explore.

Why should this matter to you?

As many know too well, living with EDS means dealing with symptoms that are both visible and invisible. On the one hand, there might be visible signs like overly flexible joints or skin that bruises easily. On the other hand, there are the less obvious but equally significant challenges, such as chronic pain, fatigue, and a condition many refer to as “brain fog,” which affects cognitive function and concentration.

The impact of EDS extends beyond physical discomfort. It often influences mental health, with many patients experiencing anxiety and depression, partly due to the ongoing struggle for validation and understanding. There is much debate in this area and that’s a whole different topic. But what is well-known by most patients is that the unpredictable nature of the condition can be emotionally taxing, leading individuals to adapt to their body’s changing needs constantly.

Due to these challenges, we focus on several articles promising to delve into the often-overlooked intersection of connective tissue disorders and neurodivergent conditions like ADHD and ASD, shedding light on the challenges faced by individuals navigating these dual realms and offering hope for managing it better.

Basics to Know

First, it’s important to understand the terms and what they mean. Neurodivergence is a way of thinking, feeling, and experiencing the world differently than other people, according to the research nonprofit studying hypermobility and neurodivergence. Neurodiversity refers to the natural variations in the human brain that influence cognition, behavior, and social interactions, and lately, the term has been redefining how we view neurological conditions. Today, many are seeing conditions like autism or ADHD not as deficits to be “fixed” or treated as “special needs” but have revised this view to emphasize that the differences from neurodivergence are natural variations in human brain function. The term ‘neurodiversity’ has gained traction for its inclusive approach, valuing diverse neurological conditions as part of human variety.

For individuals with EDS, particularly hypermobility in hEDS or Hypermobility Syndrome Disorders (HSD), neurodivergence takes on added significance. Emerging research led by Dr. Jessica Eccles suggests a strong correlation between EDS and certain neurodevelopmental disorders, underscoring the need for greater awareness of how these conditions intersect. 

What is the Term ‘Neurodiversity’?

Formerly considered a problem or abnormal, scientists now understand that neurodivergence isn’t simply an individual issue where sometimes it can have a significant societal benefit. Not all presentations of neurodivergence are disabilities, like some presentations of synesthesia, but all are differences in how the brain works. With this shift, practitioners are no longer treating neurodivergence as inherently an illness. They are instead viewing it as different methods of learning and processing information, some of which become disabilities in an inaccessible and ableist society.

Initially coined in the late 1990s, the term “neurodiversity” challenges traditional medical perspectives on neurological disorders. It asserts that conditions such as autism spectrum disorder (ASD), attention-deficit/hyperactivity disorder (ADHD), sensory processing disorder (SPD), and learning disabilities are not “abnormalities” but natural changes in the way people process information—not weaknesses. This changed paradigm encourages society to accommodate and celebrate these differences (and should include all people’s brains, even ones considered to be neurotypical).

Types of Neurodevelopmental Disorders

There are many different types of NDs; below are a few of the most prevalent ones (Source): 

• Attention-deficit/hyperactive disorder (ADHD)
• Autism spectrum disorder (ASD)
• Cerebral palsy
• Other types:
  • Communication disorders 
  • Conduct disorders
  • Intellectual disabilities
  • Learning disorders
  • Neurodevelopmental motor disorders

Understanding the Terms and Preferred Language to Use

Why language matters is seen everywhere today. As the world further embraces inclusion, diversity and personal preferences this remains a hot topic similar to which pronouns to use. It is important to understand the nuance of word choice. While these are generally accepted definitions, each person may have their own valid interpretation or preference. Thank you to guest expert contributor Jan Groh from Oh TWIST for assisting in the development and accuracy of this content.  

• Neurodivergent or Neurotypical? The word neurotypical is usually used as a descriptor to refer to someone with brain functions, behaviors, and processing considered standard or typical, while neurodivergent reflects people with brains that operate differently.
  But today those theories are being challenged.
  
  

  The medical community formerly believed neurotypical was the most common brain type, while neurodivergent brains were thought to simply ‘work uniquely.’ Today, the thinking is changing where some experts claim the opposite, “Based on estimates of lifetime prevalence, neurotypicals comprise only 32.8% of the US population. It is likely that “neurotypical” people are, in fact, the minority ”(Source).

  
  As you might be aware, the controversy on these variables, nuance and sensitivities are ongoing in many online patient communities as everyone deserves to be recognized and respected appropriately. Unfortunately to date (to our knowledge), there is no evidence to prove a definitive answer yet research is ongoing to find answers to this complexity in brain function. 
  
  
• Neurodiversity: Refers to the broad concept that neurological differences, such as autism, ADHD, and dyslexia, are natural variations in the human brain and should be respected as part of human diversity (along with neurotypical brains when considering inclusion).
• Neurodivergence: Describes the individual manifestation of these differences in brain function, contrasting with the neurotypical population. The term was coined in the 1990s by autistic sociologist Judy Singer as an alternative to deficit-based language, such as “disorder” (Source). 

The EDS Connection

Studies have shown a notable overlap between hEDS and neurodevelopmental disorders, which are of particular focus at SEDSConnective.org. Research published by Dr. Jessica Eccles and colleagues at the Brighton and Sussex Medical School found that over 50% of individuals with ASD, ADHD, or Tourette syndrome exhibit significant joint hypermobility, compared to approximately 20% in the general population (Source). This is strikingly higher than the approximately 20% prevalence of hypermobility in the general population.

The research article “Joint Hypermobility Links Neurodivergence to Dysautonomia and Pain,” authored by Dr. Jessica Eccles and colleagues, was published in Frontiers in Psychiatry in February 2022. This study investigates the prevalence of generalized joint hypermobility (GJH) in adults diagnosed with neurodevelopmental conditions such as Autism Spectrum Disorder (ASD), Attention-Deficit/Hyperactivity Disorder (ADHD), and Tourette syndrome.

Dr. Jessica Eccles, Lead Author, Clinical Senior Lecturer, and MQ Versus Arthritis Fellow at BSMS, said, “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. Health providers need to make improvements to their services and 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.”

According to the nonprofit Hypermobility Syndrome Association (HSMA), this is the first study to make this connection in Tourette syndrome and to consider neurodivergent conditions together rather than as separate diagnostic groups.

HSMA also notes that “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.”

The study also explored the association between joint hypermobility, autonomic dysfunction, and musculoskeletal pain in neurodivergent individuals. This correlation points to possible shared genetic or physiological mechanisms, such as collagen abnormalities, that influence both connective tissue and brain development. More research is needed to test theories of these potential connections, and their work continues.

Just the Highlights:
Commonly Seen Neurodevelopmental Conditions with HEDS

Autism Spectrum Disorder (ASD)

ASD is characterized by challenges in social communication and repetitive behaviors. Sensory sensitivities, such as heightened reactions to sound or light, are common. For hEDS patients, these sensitivities may compound issues like discomfort from certain fabrics or pain perception. Learn more about autism at the NIH website. Our newsletter will feature a future deeper-dive article into autism and connective tissue disorders.

On the Spectrum

Autism is now known as a “spectrum disorder” because autistic people range in what autistic traits they have, how these traits present, and their support needs. It previously had many subtypes, such as Asperger’s and pervasive developmental disorder (PDD), but now they are all classified as an autism spectrum disorder. The term Asperger’s is also falling out of favor in the autistic community due to its origination from a nazi scientist for use in the field of eugenics.

Today, autism is understood as a broad set of conditions that may include challenges with socializing and social skills, repetitive behaviors, and speech difficulties that can lead people to communicate via Alternative Augmented Communication, writing, typing, or sign language instead of verbally. According to the Autism Self-Advocacy Network, autistic people generally think, process their senses, move, communicate, and socialize in a consistent range of ways that differ from how non-autistic people do.

Attention-Deficit/Hyperactivity Disorder (ADHD)

ADHD involves inattention, hyperactivity, and impulsivity, often interfering with daily functioning. For hEDS patients, ADHD symptoms can overlap with brain fog or fatigue caused by dysautonomia, a common comorbidity. Learn more about ADHD in general from the CDC. A future deeper dive into ADHD and EDS will be featured in our newsletter.

It’s Trending: Women Diagnosed Later in Life

In recent years, there has been a significant increase in the diagnosis of ADHD in adult women, highlighting a long-overlooked demographic in ADHD research and clinical practice. Historically, ADHD has been associated with hyperactive boys, leading many women and others with inattentive symptoms to remain undiagnosed until adulthood. These women often experience symptoms such as chronic disorganization, difficulty focusing, and emotional dysregulation, which can manifest as anxiety or depression and complicate their recognition of ADHD. This trend has been driven by greater awareness and the de-stigmatization of mental health conditions, encouraging more women to seek evaluations. According to the National Institute of Mental Health (NIMH), ADHD in adult women is often masked by societal expectations or coping mechanisms developed during childhood, making diagnosis later in life more common as the understanding of the condition evolves and more readily available testing becomes available.

Sensory Processing Disorder (SPD)

SPD affects how sensory input is processed, leading to over- or under-reactivity to stimuli like noise, touch, or light. hEDS patients often report heightened sensory sensitivities, exacerbating SPD-like symptoms. Learn more about SPD as it relates to autism in particular.

Sensory Challenges in hEDS

Sensory processing challenges are increasingly recognized as a significant aspect of hEDS, affecting how individuals interpret and respond to sensory input. Many people with hEDS experience heightened sensitivity to light, sound, textures, or touch, often leading to sensory overload that can exacerbate fatigue, pain, and anxiety. This hypersensitivity is thought to be linked to nervous system dysregulation, commonly seen in hEDS due to its overlap with conditions like dysautonomia, mast cell activation syndrome (MCAS) and some believe also in craniocervical instability (CCI) and Chiari Malformation. 

For example, overstimulation can trigger physical symptoms such as migraines, gastrointestinal distress, or even autonomic dysregulation, making sensory environments a key factor in day-to-day health. Understanding these sensory issues and adopting strategies—such as sensory-friendly environments, noise-canceling headphones, or textured clothing adaptations—can help mitigate their impact and improve overall quality of life for hEDS patients. These insights underline the importance of integrating sensory considerations into holistic care for hEDS.

Other Neurodivergent Disorders

Tourette Syndrome

Tourette Syndrome, or TS, happens when your brain makes your body move (motor tics) or say something (vocal tics) without you meaning to. It’s like when you get a bug bite and can’t stop scratching it, even though you don’t want to. That’s what a tic feels like.

FUN FACT: Did you know that famous Grammy Award-winning singer-artist Billie Eilish has Tourette Syndrome? She doesn’t let it stop her from singing out loud and proud!

Learning Disabilities

Learning disabilities are a group of neurodevelopmental disorders that can significantly hamper a person’s ability to learn new things. As a result, the person may have trouble with speaking, reading, writing, paying attention, understanding information, remembering things, performing mathematical calculations, or coordinating movements. Learning disabilities, such as dyslexia, a learning disability that affects how the brain processes written language, and dyscalculia, a learning disorder limiting the ability to compute math and numerical data, impact specific skills that are key to the building blocks of learning, especially for school-aged children. While not linked to overall intelligence, these challenges can be exacerbated in EDS patients by cognitive issues like brain fog. Learn more about learning disabilities in general and more types from Very Well Mind.

Why the Overlap? 

Research into the connection between Ehlers-Danlos Syndrome (EDS) and neurodivergent conditions is still emerging. One proposed mechanism is the role of connective tissues in the nervous system, as these tissues are vital for neural integrity and function. Issues in these tissues might affect neural signaling, leading to neurodivergent symptoms. Additionally, genetic factors and the impact of chronic pain on neurodevelopment may contribute to the prevalence of neurodiverse traits in individuals with EDS. More research is needed to clarify these links. The medical reasons behind the observed EDS-neurodivergence connection remain under investigation. However, experts propose several theories:

• Genetic Factors: Both EDS and many neurodevelopmental disorders have genetic underpinnings. Variations in genes associated with connective tissue could also influence neurological development.
• Collagen Abnormalities: Collagen, crucial for connective tissues, also plays a role in the brain and nervous system. Abnormal collagen production may impact both.
• Autonomic Dysregulation: Dysautonomia, commonly seen in EDS, can affect the regulation of the brain’s sensory and cognitive processes.
  
  

Early intervention is critical for individuals with both EDS and neurodevelopmental disorders, positively influencing long-term outcomes. Early identification and support help develop coping strategies and enhance skills, aiding academic and social success. Collaborative approaches among healthcare providers, educators, and families ensure that interventions meet the specific needs of individuals throughout their development.

Moving Forward – Much Work to Do 

One of the most pressing aspects of this journey is enhancing learning to recognize and diagnose these intertwined conditions for three primary audiences who need a better understanding to form treatment options: researchers, providers, and patients who could better identify and understand the differences.

• Medical Researchers: For research into the potential connection, scientists and medical experts in brain science are actively working on it. For more insights, check out this talk with one of the lead researchers, Dr. Jessica Eccles, Clinical Senior Lecturer in Psychiatry (Neuroscience and Imaging) at Brighton and Sussex Medical School, where they study hypermobility and neurodiversity. The EDS UK nonprofit originally presented the webinar, where Eccles joined their support group to discuss hypermobility and neurodiversity. Watch the talk now here. 

• Healthcare Providers: For them, understanding the connection between neurodivergence and EDS can pave the way for better care. Awareness of potential overlaps ensures more accurate, timely diagnosis and tailored treatments. For instance, an EDS patient experiencing sensory overload may benefit from interventions typically used for SPD or ADHD.

• The Patient Population: Equally important is empowering patients with this knowledge. Recognizing that these conditions are interconnected validates their experiences and helps them advocate for necessary medical, educational, and social accommodations.
  
  

This new view of the neurodiversity paradigm challenges us to think differently about neurological and physical differences – and to embrace them, not fear, minimize, or ostracize them.

According to Very Well Health, we are just beginning to understand that we cannot separate the brain from the body in medicine or in science. For EDS patients navigating the complexities of hypermobility and neurodivergence, we hope this knowledge begins your journey to understanding and helps serve as a reminder that diverse experiences contribute to the richness of our shared humanity.

We hope we handled this sensitive set of topics with respect. Feel free to enhance the article by adding to the growing list of resources available on the topic so everyone can be better aware. Thank you for your patience as we took a complex topic and led our readers through a very long article to try to build better understanding. 

Note: Stay tuned for the next in the series, which will focus on autism and ADHD and include strategies for enhancing the quality of life for people with these conditions.

Sources and More Info