Hypermobility is a condition that affects many Autistic people. It is characterised by overly flexible joints and muscles that may lead to chronic pain. Those with hypermobility are at risk of suffering from joint and muscle instability, fatigue and poor posture.It can significantly impact quality of life, as well as making it difficult to take part in everyday activities. In this blog post, we’ll explore the connection between hypermobility and Autism, looking at symptoms, diagnosis and strategies for managing pain associated with the condition.
Joint hypermobility, also known as hypermobility or joint laxity, refers to an atypical range of motion in one or more joints in an individual’s body. It is important to note that joint hypermobility is not a diagnosis but a descriptor (Castori et al., 2017). The condition can be classified as localised hypermobility syndrome if it occurs in only one or two joints, and may be genetic or caused by joint injury or trauma. Generalised joint hypermobility, on the other hand, refers to the presence of hypermobility in multiple joints, typically more than five. This condition is usually congenital and can be a feature of genetic syndromes such as hereditary disorders of the soft connective tissue.
Hypermobility is often linked to a connective tissue disorder called Ehlers Danlos syndrome (EDS). EDS affects the body’s collagen, which is responsible for providing strength and support to our joints, skin, and other tissues. When collagen is not properly formed, it can result in hypermobility and other related symptoms. Collagen also provides strength and support to our joints, skin, and other tissues. Therefore, individuals with hypermobility may also exhibit symptoms related to EDS, such as fragile skin or easy bruising.
Symptoms of hypermobility can vary from person to person, but commonly include joint and muscle pain and poor posture. Some individuals may also experience frequent injuries, such as sprains or dislocations, due to their hyperflexible joints.
Fatigue is a common symptom of hypermobility, as the constant strain on joints and muscles can lead to feelings of exhaustion and low energy levels. Fatigue can have a significant impact on daily functioning and can make it difficult for individuals to participate in activities they enjoy.
These symptoms can have a significant impact on an individual’s quality of life, making it difficult to participate in everyday activities and hindering social interactions.
The link between hypermobility and Autism is still not fully understood, but research suggests that there may be a genetic component. It is believed that certain genes associated with Autism may also play a role in the development of hypermobility. Additionally, sensory processing difficulties common in Autism may contribute to the development of hypermobility symptoms.
Diagnosing hypermobility can be challenging, as it is often overlooked or misdiagnosed.
However, it is important for Autistic individuals to receive an accurate diagnosis in order to access appropriate support and treatment. Medical professionals, such as rheumatologists or geneticists, may conduct a thorough physical examination, review medical history, and order additional tests to assess joint mobility and collagen production.
Managing pain associated with hypermobility can be a lifelong process. Whilst there is no cure for hypermobility or EDS, there are strategies that can help alleviate symptoms and improve quality of life. Physical therapy and exercise programmes tailored to the individual’s needs can strengthen muscles and provide stability to the joints. Assistive devices, such as braces or splints, may also be recommended to support and protect the joints. It is important to consult with medical professionals, such as rheumatologists or geneticists, for an accurate diagnosis and to access appropriate treatment options.
Understanding hypermobility is crucial for autistic individuals and their loved ones. By recognising the symptoms and seeking appropriate support, individuals with hypermobility can navigate the challenges it presents and find strategies for managing pain and improving overall well-being.
Many studies have shown a strong link between hypermobility and Autism, with up to 80% of Autistic individuals experiencing hypermobility. This connection is not fully understood, but researchers believe that there may be a genetic component involved. Certain genes associated with Autism may also play a role in the development of hypermobility.
The link between hypermobility and Autism is further supported by the fact that Autistic individuals often experience sensory processing difficulties. These difficulties may contribute to the development of hypermobility symptoms, as the body may not process sensory input correctly, leading to over-flexible joints and muscles. Understanding this link is crucial for Autistic individuals and their loved ones. By recognising the symptoms of hypermobility and seeking appropriate support, individuals with hypermobility can navigate the challenges it presents and find strategies for managing pain and improving overall well-being.
It is important to consult with medical professionals, such as rheumatologists or geneticists, for an accurate diagnosis and to access appropriate treatment options.
With a proper diagnosis, individuals with hypermobility and autism can receive the necessary support and interventions to manage their symptoms effectively. By understanding the connection between hypermobility and Autism, individuals and their loved ones can advocate for themselves and seek the appropriate support they need.
This understanding can also lead to increased awareness and acceptance of hypermobility within the Autistic community, reducing the feelings of being misunderstood and providing a sense of validation for those affected by this condition.
Whilst Autism is typically diagnosed by specialists in developmental paediatrics, psychology or psychiatry, and connective tissue and hypermobility-related disorders are diagnosed by rheumatologists or geneticists, the link between these conditions has only recently gained attention. Despite some neurodevelopmental paediatricians testing for joint laxity in initial autism screenings, milder symptoms may be attributed solely to Autism.
However, a recent study by Casanova et al. (2020) found that over 20% of mothers with EDS/hypermobility spectrum disorders had Autistic children, which is a significant percentage compared to the 19% seen in Autistic mothers. This suggests that some forms of Autism may have a hereditary connection to connective tissue disorders. The authors express their commitment to researching this possibility to improve the lives of those living with chronic illness, including certain hypermobility spectrum conditions. For many individuals with these disorders, pain is a pressing issue that requires attention.
According to a recent study by Kindgren et al. (2021), there is a notable connection between hypermobile Ehlers-Danlos Syndrome (hEDS) and attention deficit hyperactivity disorder (ADHD) or Autism. This has led to the suggestion that routine screening for neuropsychiatric symptoms may be necessary for children with EDS or hEDS. However, it is important to remember that not all hypermobility is a sign of autism risk or a connective tissue disorder. Environmental factors, family history, and athleticism can also contribute to joint hypermobility.
The terminology for disorders related to joint hypermobility can be confusing, particularly when it comes to subtypes like hypermobile Ehlers-Danlos syndrome (hEDS). According to a recent Swedish study (Kindgren et al., 2021), all cases of Ehlers-Danlos syndrome, which comprises 13 types of hereditary connective tissue disorders affecting predominantly collagen (Demmler et al., 2019), can be classified as hEDS under the new diagnostic criteria and international classification of EDS adopted in 2017.
Unfortunately, hEDS is often underdiagnosed and poorly understood by healthcare practitioners, resulting in patients waiting for years before receiving an accurate diagnosis.
Thus, improving knowledge and recognition of hEDS could facilitate earlier diagnosis and effective management of the condition.
When it comes to diagnosing hypermobility, there are several challenges that Autistic individuals may face. One of the main challenges is that hypermobility is often overlooked or misdiagnosed. Many healthcare professionals may not be aware of the connection between hypermobility and Autism, which can result in individuals not receiving the appropriate support and treatment they need.
Another challenge is that the symptoms of hypermobility can be diverse and may overlap with other conditions. For example, joint and muscle pain, fatigue, and poor posture are common symptoms of hypermobility, but they can also be attributed to other factors. This can make it difficult for medical professionals to pinpoint hypermobility as the underlying cause of these symptoms.
Furthermore, sensory processing difficulties commonly experienced by Autistic individuals can complicate the diagnosis process. These difficulties can lead to challenges in accurately assessing joint mobility and collagen production, which are key factors in diagnosing hypermobility. As a result, it may take longer for Autistic individuals to receive a proper diagnosis.
Receiving an accurate diagnosis is crucial for individuals with hypermobility, as it enables them to access appropriate support and treatment options. However, the challenges in diagnosis can lead to frustration and feelings of being misunderstood. It is important for individuals and their loved ones to advocate for themselves and seek out healthcare professionals who are knowledgeable about the link between hypermobility and Autism.
Despite the challenges, it is possible to overcome them and receive an accurate diagnosis. It may be helpful to seek out medical professionals who specialise in conditions like hypermobility or connective tissue disorders. Rheumatologists or geneticists are often well-versed in diagnosing and treating hypermobility. Additionally, keeping a detailed record of symptoms and any related incidents can help healthcare professionals assess the severity and frequency of symptoms. Navigating the challenges of diagnosis can be challenging, but it is an important step towards accessing the appropriate support and treatment. With the right diagnosis, Autistic individuals with hypermobility can work towards managing their symptoms effectively and improving their overall well-being.
Living with hypermobility can be challenging, but there are strategies that can help manage the pain associated with this condition. Whilst there is no cure for hypermobility or Ehlers Danlos syndrome (EDS), there are steps you can take to alleviate symptoms and improve your overall well-being.
For those with joint hypermobility disorders, pain may be due to laxity or the tendency to dislocate the hypermobile joint. Joint hypermobility means more flexibility but also a predisposition to pain and trauma as the tissue is more fragile.
Research (Hershenfeld et al., 2016) indicates higher rates of pain symptoms in individuals with Ehlers-Danlos syndrome when the condition co-occurs alongside psychiatric conditions. Furthermore, mast cell activation syndrome (frequently linked to painful conditions) may be another link between Autism and hypermobility spectrum disorders.
Do you live with hypermobility, and are you looking for strategies to manage your pain? The below tips may help:
Remember, managing pain associated with hypermobility is a lifelong process. It may require trial and error to find what strategies work best for you. Be patient with yourself and seek out professional guidance when needed.
With the right strategies and support, you can effectively manage your pain and improve your overall well-being.
Living with hypermobility can have a significant impact on an individual’s quality of life, particularly Autistic individuals. The symptoms associated with hypermobility, such as chronic pain, fatigue, and poor posture, can make everyday activities challenging and hinder overall well-being.
One of the key ways that hypermobility affects quality of life is through chronic pain. Individuals with hypermobility often experience joint and muscle pain that can be debilitating and make it difficult to engage in daily activities. This can lead to limitations in mobility, difficulty with self-care tasks, and increased reliance on others for assistance. The constant presence of pain can also impact mood and mental health, leading to feelings of frustration, sadness, or anxiety.
Fatigue is another significant factor that can impact quality of life for individuals with hypermobility. The strain on joints and muscles can lead to constant fatigue and low energy levels, making it challenging to participate in activities, work, or socialise. The combination of chronic pain and fatigue can create a cycle of limited energy and reduced motivation, further affecting an individual’s ability to engage in activities that bring joy or fulfilment.
Poor posture is another consequence of hypermobility that can have a negative impact on an individual’s quality of life. Laxity in the joints can result in instability and difficulty maintaining proper alignment. This can lead to discomfort, back and neck pain, and even difficulty with balance and coordination. Poor posture can also affect an individual’s self-confidence and self-esteem, making it challenging to navigate social situations or feel comfortable in one’s own body.
The impact of hypermobility on quality of life is not to be underestimated. However, with the appropriate support and strategies for managing symptoms, individuals with hypermobility can improve their overall well-being and regain control over their lives.
It is essential to seek out medical professionals who understand the connection between hypermobility and autism to ensure accurate diagnosis and access to appropriate treatment options.
By recognising the impact of hypermobility on quality of life, individuals and their loved ones can advocate for the support and understanding they need. Building a strong support network of healthcare professionals, friends, and family who understand the challenges of hypermobility can provide invaluable support and empathy. Seeking out online support groups and communities can also help connect with others who are going through similar experiences and share coping strategies and advice.
Managing hypermobility and its impact on quality of life requires patience, resilience, and perseverance.
Living with hypermobility can be challenging, especially for autistic individuals who may already feel misunderstood and struggle to fit in. It is important for individuals with hypermobility to seek support and understanding from their loved ones, healthcare professionals, and the broader community.
One way to seek support is by building a strong support network. Surround yourself with people who understand your condition and can provide empathy and support. Talk to your family and friends about hypermobility and how it affects you. Educate them on the symptoms and challenges you face, so they can better understand and support you. Having a supportive network can make a huge difference in your overall well-being.
Another way to seek support is by connecting with online support groups and communities. There are many online platforms where you can find individuals who are going through similar experiences. These communities can provide a safe space to share your thoughts, ask questions, and receive advice from others who understand what you’re going through. Hearing from others who have faced similar challenges can be incredibly validating and can provide you with a sense of belonging.
Seeking support from healthcare professionals is also crucial. Find medical professionals who are knowledgeable about hypermobility and Autism, as they will be able to provide you with accurate information and guidance. Rheumatologists and geneticists are often well-versed in diagnosing and treating hypermobility. Remember to advocate for yourself and seek out healthcare professionals who listen to your concerns and provide appropriate support and treatment options.
In addition to seeking support, it is important to educate yourself about hypermobility and how it affects your body.
The more you understand about your condition, the better equipped you will be to manage your symptoms and advocate for yourself.
Read books, articles, and reputable online resources to expand your knowledge. Attend seminars or workshops that focus on hypermobility or connective tissue disorders to learn from experts in the field.
By seeking support and understanding, you can navigate the challenges of hypermobility with a greater sense of empowerment. Remember that you are not alone and that there are people who understand and support you. Seek out the resources and support that you need, and don’t be afraid to reach out for help. Together, we can create a more supportive and understanding community for Autistic and hypermobile individuals.
References:
Baeza-Velasco, C., Cohen, D., Hamonet, C., Vlamynck, E., Diaz, L., Cravero, C., Cappe, E., & Guinchat, V. (2018). Autism, Joint Hypermobility-Related Disorders and Pain. Frontiers in psychiatry, 9, 656. https://doi.org/10.3389/fpsyt.2018.00656.
Baeza-Velasco, Carolina & Hamonet, C. & Baghdadli, Amaria & Brissot, Regine. (2016). Autism Spectrum Disorders and Ehlers-Danlos Syndrome Hypermobility-Type : Similarities in clinical presentation.. Cuadernos de medicina psicosomática y psiquiatria de enlace. (in press).
Casanova, E. L., Baeza-Velasco, C., Buchanan, C. B., & Casanova, M. F. (2020). The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders. Journal of personalized medicine, 10(4), 260. https://doi.org/10.3390/jpm10040260.
Casanova E.L., Sharp J.L., Edelson S.M., Kelly D.P., Sokhadze E.M., Casanova M.F. (2020) Immune, autonomic, and endocrine dysregulation in autism and Ehlers-Danlos syndrome/hypermobility spectrum disorders versus unaffected controls. J. Reatt. Ther. Dev. Divers.2:82–95.
Castori M, Tinkle B, Levy H, Grahame R, Malfait F, Hakim A. 2017. A framework for the classification of joint hypermobility and related conditions. Am J Med Genet Part C Semin Med Genet 175C:148–157.
Demmler, J. C., Atkinson, M. D., Reinhold, E. J., Choy, E., Lyons, R. A., & Brophy, S. T. (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. https://doi.org/10.1136/bmjopen-2019-031365.
Eccles JA, Lodice V, Dowell NG, Owens A, Hughes L, Skipper S, et al. (2014) Joint hypermobility and autonomic hyperactivity: relevance to neurodevelopmental disorders. Journal of Neurology, Neurosurgery & Psychiatry 85:e3 10.1136/jnnp-2014-308883.9.
Hershenfeld, S. A., Wasim, S., McNiven, V., Parikh, M., Majewski, P., Faghfoury, H., & So, J. (2016). Psychiatric disorders in Ehlers-Danlos syndrome are frequent, diverse and strongly associated with pain. Rheumatology international, 36(3), 341–348. https://doi.org/10.1007/s00296-015-3375-1.
Kindgren, E., Quiñones Perez, A., & Knez, R. (2021). Prevalence of ADHD and Autism Spectrum Disorder in Children with Hypermobility Spectrum Disorders or Hypermobile Ehlers-Danlos Syndrome: A Retrospective Study. Neuropsychiatric disease and treatment, 17, 379–388. https://doi.org/10.2147/NDT.S290494.
Ratto, A. B., Kenworthy, L., Yerys, B. E., Bascom, J., Wieckowski, A. T., White, S. W., Wallace, G. L., Pugliese, C., Schultz, R. T., Ollendick, T. H., Scarpa, A., Seese, S., Register-Brown, K., Martin, A., & Anthony, L. G. (2018). What About the Girls? Sex-Based Differences in Autistic Traits and Adaptive Skills. Journal of autism and developmental disorders, 48(5), 1698–1711. https://doi.org/10.1007/s10803-017-3413-9.
Wood-Downie, H., Wong, B., Kovshoff, H., Mandy, W., Hull, L., & Hadwin, J. A. (2021). Sex/Gender Differences in Camouflaging in Children and Adolescents with Autism. Journal of autism and developmental disorders, 51(4), 1353–1364. https://doi.org/10.1007/s10803-020-04615-z.
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