Ehlers-Danlos Syndrome And Autism

Learn how these two conditions can sometimes co-occur, and the challenges and insights it brings to individuals and their families. Gain a better understanding of the unique experiences of those living with both EDS and autism.

steven zauderer
Steven Zauderer
December 13, 2023
min read

Understanding Ehlers-Danlos Syndrome (EDS)

To grasp the complexities of the comorbidity between Ehlers-Danlos Syndrome (EDS) and Autism Spectrum Disorder (ASD), it's essential to have a clear understanding of EDS itself. This section will provide an overview of Ehlers-Danlos Syndrome, including its common symptoms and how it is diagnosed.

Overview of Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome is a group of genetic disorders that affect the connective tissues in the body. Connective tissues provide support, structure, and elasticity to various organs, blood vessels, and joints. EDS is characterized by a defect in the production or structure of collagen, a major component of connective tissues.

There are several types of EDS, each with its own distinct features and genetic causes. The most common types include:

  • Hypermobility EDS (hEDS): This type is characterized by joint hypermobility, meaning the joints can move beyond the normal range of motion. Individuals with hEDS often experience joint pain, frequent dislocations, and soft, stretchy skin.
  • Classical EDS (cEDS): cEDS is characterized by skin that is smooth, soft, and velvety to the touch. Individuals with cEDS may also have joint hypermobility, fragile skin, and a higher risk of scarring.
  • Vascular EDS (vEDS): vEDS is the most severe and potentially life-threatening type of EDS. It affects the blood vessels, causing them to be fragile and prone to rupture. Individuals with vEDS may experience arterial or organ ruptures, as well as thin, translucent skin.
  • Other types: There are other less common types of EDS, including kyphoscoliotic EDS (kEDS), dermatosparaxis EDS (dEDS), and others, each with their own unique symptoms and genetic mutations.

Common Symptoms and Diagnosis of EDS

The symptoms of EDS can vary depending on the specific type and individual variability. However, some common symptoms include:

  • Joint hypermobility or instability
  • Chronic joint pain
  • Easy bruising
  • Stretchy or fragile skin
  • Delayed wound healing
  • Gastrointestinal issues
  • Fatigue

Diagnosing EDS can be challenging due to its overlapping symptoms with other conditions. A thorough evaluation by a medical professional experienced in connective tissue disorders is crucial. The diagnosis may involve a detailed medical history, physical examination, and genetic testing to identify specific genetic mutations associated with EDS.

Understanding the fundamentals of Ehlers-Danlos Syndrome sets the stage for exploring its connection with Autism Spectrum Disorder. In the next section, we will delve into the overview of Autism Spectrum Disorder, its symptoms, and the diagnosis process.

Understanding Autism Spectrum Disorder (ASD)

Autism Spectrum Disorder (ASD) is a neurodevelopmental condition that affects communication, social interaction, and behavior. It is characterized by a range of symptoms and varying levels of impairment. Understanding the basics of ASD is essential for recognizing its comorbidity with Ehlers-Danlos Syndrome (EDS) and exploring the unique challenges individuals may face.

Overview of Autism Spectrum Disorder

ASD is a complex condition that manifests differently in each individual. It is typically diagnosed in early childhood, although some cases may not be identified until later in life. The spectrum encompasses a wide range of symptoms, behaviors, and abilities, making each person's experience unique.

Individuals with ASD may exhibit difficulties in social interaction, such as challenges with nonverbal communication cues, difficulty forming and maintaining relationships, and limited empathy. They may also engage in repetitive behaviors and have restricted interests. Sensory sensitivities, such as an aversion to certain sounds or textures, are also common among individuals with ASD.

Common Symptoms and Diagnosis of ASD

The symptoms of ASD can vary widely, but some common signs and behaviors include:

  • Social difficulties: Individuals with ASD may struggle with understanding social cues, making eye contact, and engaging in reciprocal conversations.
  • Communication challenges: Some individuals with ASD may have delayed speech development or struggle with verbal and nonverbal communication. They may also have difficulty understanding figurative language or sarcasm.
  • Repetitive behaviors: Many individuals with ASD engage in repetitive movements or behaviors, such as hand-flapping, rocking, or lining up objects.
  • Restricted interests: People with ASD often develop intense interests in specific topics and may become preoccupied with certain objects or activities.
  • Sensory sensitivities: Sensory sensitivities are common in individuals with ASD. They may be hypersensitive or hyposensitive to certain sounds, textures, tastes, or smells.

Diagnosing ASD involves a comprehensive evaluation by a qualified healthcare professional, such as a developmental pediatrician or a psychologist specializing in autism. The diagnosis is based on a thorough assessment of an individual's behavior, communication skills, developmental history, and observation of their social interactions.

Understanding the characteristics and diagnosis of ASD is crucial in recognizing the comorbidity between ASD and EDS. By acknowledging the co-occurrence of these conditions, individuals and caregivers can advocate for appropriate support, interventions, and therapies to address the unique needs of individuals with EDS and autism.

The Connection between EDS and Autism

People with Ehlers-Danlos Syndrome (EDS) often find themselves navigating not only the challenges of their connective tissue disorder but also the presence of Autism Spectrum Disorder (ASD). The comorbidity between EDS and autism has been a subject of interest and research. In this section, we will discuss the prevalence of comorbidity and explore the shared features and overlapping symptoms that contribute to this connection.

Prevalence of Comorbidity

Research suggests that there is a higher prevalence of comorbidity between EDS and autism compared to the general population. While the exact numbers may vary, studies have shown that individuals with EDS are more likely to have co-occurring autism or autistic traits. The presence of autism in individuals with EDS can significantly impact their daily lives, requiring a comprehensive approach to management and support.

Understanding the prevalence of this comorbidity is essential for healthcare professionals, individuals with EDS, and their families. By recognizing the potential overlap between EDS and autism, appropriate evaluations and interventions can be implemented.

Shared Features and Overlapping Symptoms

The connection between EDS and autism is complex, as both conditions have overlapping symptoms and shared features. These similarities can make it challenging to differentiate between the two, especially when considering hypermobility-type EDS (hEDS) and autism. Some common features and symptoms include:

  • Hypermobility: Both EDS and autism can involve hypermobility, which refers to excessive joint flexibility. Hypermobile joints can be more prone to dislocations and chronic pain. Not all individuals with EDS have hypermobility, and not all individuals with hypermobility have EDS.
  • Sensory Sensitivities: Sensory sensitivities, such as hypersensitivity to light, sound, or touch, can be present in both EDS and autism. These sensitivities can significantly impact an individual's daily functioning and require tailored support strategies.
  • Gastrointestinal Issues: Gastrointestinal problems, such as irritable bowel syndrome (IBS) and constipation, are commonly reported in both EDS and autism. These digestive issues can contribute to discomfort and affect overall well-being.
  • Anxiety and Depression: Both EDS and autism are associated with an increased risk of anxiety and depression. The challenges and chronic nature of these conditions can contribute to mental health difficulties. It is crucial to address these concerns and provide appropriate support.

Understanding the shared features and overlapping symptoms between EDS and autism is vital for accurate diagnosis and appropriate intervention. By recognizing these connections, healthcare professionals can provide tailored care plans to address the unique needs of individuals with EDS and autism.

In the next section, we will delve into possible explanations for the comorbidity between EDS and autism, including genetic factors, connective tissue abnormalities, and neurological and developmental factors.

Possible Explanations for the Comorbidity

The comorbidity between Ehlers-Danlos Syndrome (EDS) and Autism Spectrum Disorder (ASD) has puzzled researchers and healthcare professionals alike. While the exact cause of this co-occurrence is not fully understood, several possible explanations have been suggested. These include genetic factors, connective tissue abnormalities, and neurological and developmental factors.

Genetic Factors

Genetics play a significant role in both EDS and ASD. It is believed that certain genetic variations and mutations may contribute to the development of both conditions. Research has identified specific genes that are associated with EDS and ASD, such as the COL3A1 gene related to EDS and various genes related to ASD. These genetic factors may contribute to the comorbidity between the two conditions.

Connective Tissue Abnormalities

EDS is characterized by abnormalities in the body's connective tissues, which provide support and structure to various organs and systems. Connective tissue abnormalities can affect joints, skin, blood vessels, and other tissues. Some researchers propose that these connective tissue abnormalities may also impact the development and functioning of the brain, leading to the manifestation of ASD symptoms in individuals with EDS.

Neurological and Developmental Factors

Both EDS and ASD involve neurological and developmental aspects. EDS is associated with hypermobility, proprioceptive difficulties, and sensory processing differences. Similarly, individuals with ASD often experience difficulties with sensory processing, motor coordination, and proprioception. These shared features suggest a potential overlap in the neurological and developmental mechanisms underlying EDS and ASD, contributing to their comorbidity.

Understanding the possible explanations for the comorbidity between EDS and ASD is essential for developing effective strategies for diagnosis and treatment. Further research is needed to fully unravel the complex relationship between these two conditions. By exploring the genetic, connective tissue, and neurological factors, healthcare professionals can gain insights into the underlying mechanisms and provide more targeted interventions for individuals with both EDS and ASD.

Managing EDS and Autism Comorbidity

When it comes to managing the comorbidity of Ehlers-Danlos Syndrome (EDS) and Autism Spectrum Disorder (ASD), a comprehensive and individualized approach is key. Addressing the unique needs and challenges that arise from the co-occurrence of these conditions requires a multidisciplinary approach to treatment, supportive therapies and interventions, and a focus on addressing individual needs.

Multidisciplinary Approach to Treatment

A multidisciplinary approach involving a team of healthcare professionals is crucial for effectively managing the comorbidity of EDS and ASD. This may include physicians, therapists, and specialists such as geneticists, rheumatologists, and developmental pediatricians.

By collaborating and sharing their expertise, this team can develop a comprehensive treatment plan tailored to each individual's specific needs. The treatment plan may involve a combination of medical interventions, therapies, and lifestyle modifications aimed at improving overall well-being and quality of life.

Supportive Therapies and Interventions

Supportive therapies and interventions play a significant role in managing the comorbidity of EDS and ASD. These therapies can help individuals develop skills, cope with challenges, and enhance their overall functioning. Some commonly used therapies include:

  • Physical therapy: Physical therapy focuses on improving mobility, strength, and joint stability. It can help individuals with EDS manage joint hypermobility and address any associated motor difficulties.
  • Occupational therapy: Occupational therapy aims to enhance an individual's ability to perform daily activities and develop essential life skills. It focuses on areas such as fine motor skills, sensory processing, and self-care routines.
  • Speech and language therapy: Speech and language therapy can assist individuals with communication difficulties often associated with ASD. It may also address oral motor coordination and swallowing difficulties that can occur in some individuals with EDS.
  • Behavioral therapy: Behavioral therapy, such as Applied Behavior Analysis (ABA), can help individuals with ASD develop and strengthen adaptive behaviors, social skills, and self-regulation strategies.

Addressing Individual Needs

Recognizing and addressing the unique needs of individuals with EDS and ASD is crucial for their well-being. This includes understanding the specific challenges they may face and tailoring interventions accordingly. Some important considerations include:

  • Pain management: Individuals with EDS often experience chronic pain due to joint hypermobility and connective tissue abnormalities. Developing effective pain management strategies, which may involve a combination of medication, physical therapy, and alternative therapies, is essential.
  • Sensory sensitivities: Many individuals with ASD and EDS have sensory sensitivities. Creating an environment that accommodates these sensitivities, such as reducing sensory stimuli or providing sensory supports, can help individuals feel more comfortable and regulated.
  • Communication support: For individuals with communication difficulties, augmentative and alternative communication (AAC) systems can be beneficial. AAC systems can range from simple picture-based communication boards to more advanced technologies that facilitate expressive communication.

By taking a holistic and person-centered approach, individuals with EDS and ASD can receive the support they need to thrive. It's important to work closely with healthcare professionals, therapists, and educators to develop strategies that address the specific challenges associated with the comorbidity of EDS and ASD. Remember, each individual is unique, and interventions should be tailored to their specific needs and strengths.

Resources and Support

Living with the comorbidity of Ehlers-Danlos Syndrome (EDS) and Autism can present unique challenges. However, there are resources and support available to help individuals and their caregivers navigate this journey. Here are some valuable resources to consider:

Organizations and Communities

  • Ehlers-Danlos Society: A global organization dedicated to supporting individuals with EDS and raising awareness about the condition. Their website provides information, resources, and a community forum for connecting with others.
  • Autism Society: A leading organization that provides support, advocacy, and resources for individuals with Autism and their families. They offer local chapters, online communities, and educational materials.
  • Local Support Groups: Connecting with local support groups can provide a valuable network of individuals who understand the unique challenges of living with both EDS and Autism. Seek out local resources, community centers, or online platforms to find support groups in your area.

Further Reading and Research

For those looking to deepen their understanding of the comorbidity between EDS and Autism, here are some recommended resources for further reading and research:

  • Scientific Journals: Academic journals such as Journal of Autism and Developmental Disorders, American Journal of Medical Genetics Part C: Seminars in Medical Genetics, and Journal of Medical Genetics often publish research articles on the topic. These journals can provide valuable insights into the latest studies and findings.
  • Books: Authors such as Dr. Christopher Walsh, Dr. Temple Grandin, and Dr. Peter Rowe have written extensively on topics related to EDS and Autism. Their books, including Genetic Mechanisms in the Pathogenesis of Autism Spectrum Disorders and The Autistic Brain: Thinking Across the Spectrum, offer comprehensive information and personal perspectives.
  • Online Articles and Blogs: Websites specializing in EDS and Autism, like Cross River Therapy, provide articles and blog posts that cover various aspects of the comorbidity. These resources often offer practical advice, personal stories, and helpful tips.

Finding Support for EDS and Autism

Navigating the challenges of EDS and Autism can be overwhelming, but remember that support is available. Here are some steps you can take to find the help you need:

  • Consult Medical Professionals: Reach out to healthcare providers who specialize in EDS and Autism. They can provide guidance, recommend therapies, and connect you with appropriate resources.
  • Connect with Support Groups: Joining local or online support groups can provide a sense of community and understanding. Share experiences, seek advice, and learn from others who are on a similar journey.
  • Reach Out to Advocacy Organizations: Organizations like the Ehlers-Danlos Society and the Autism Society can provide valuable information, resources, and connections to support services.
  • Consider Therapy and Interventions: Occupational therapy, physical therapy, and behavioral interventions can assist in managing symptoms and improving daily functioning. Consult with professionals who specialize in these areas.

Remember, you are not alone. By accessing the resources and support available, you can find comfort, guidance, and strategies to navigate the unique challenges of EDS and Autism comorbidity.


Ehlers-Danlos Syndrome (EDS) and Autism are two distinct medical conditions, but sometimes they can co-occur in the same individual. EDS is a group of connective tissue disorders that affect the skin, joints, and blood vessels, while autism is a neurological condition that impacts social interaction and communication.

When EDS and autism occur together, it can present unique challenges for the affected individual. The joint hypermobility and pain associated with EDS can complicate the sensory and motor difficulties often seen in autism. Managing both conditions may require a specialized and multidisciplinary approach, including medical care, physical therapy, and behavioral support.

It's important for individuals with both EDS and autism, as well as their caregivers, to work closely with healthcare professionals to address the specific needs and provide the best possible quality of life. The co-occurrence of these conditions highlights the complexity and individuality of healthcare, where a personalized approach is crucial.


steven zauderer

CEO of CrossRiverTherapy - a national ABA therapy company based in the USA.

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