Written by: Ben MattsonClinical Intern & MSW graduate prospective This blog post discusses the correlation between connective tissue/hypermobility disorders and neurodivergent conditions, especially autism. Recent studies have found a similarity in manifestation of these conditions which exists on the genetic level. Connective tissue/hypermobility disorders can cause a variety of symptoms that have impact on such individuals, including both physical and mental health outcomes. Pain, restrictions, and challenges to quality of life related to physical health disorders can have great impact on an individual’s mental wellbeing, which can be even more difficult to manage if mental health conditions and features of given neurotypes also present life barriers. It is important for therapists to be aware of these connections in their work with clients who are neurodiverse, especially if they have comorbid hypermobility, pain, or connective tissue disorders. Mental health professionals should understand the implications for what support these clients may need and would be well-suited to learn more about how these conditions can affect quality of life, both physically and mentally, to provide the most supportive care possible for this population. It could be argued that this is necessary to truly give trauma-informed care that is respectful to all neurotypes. The current research on the connection between autism and hypermobility spectrum disorders was reviewed with intent to delineate how autistic individuals appear to be inordinately affected by hypermobility issues, as well as specific challenges that may occur in individuals who experience this confluence of issues. According to the American Psychological Association, autism is defined as “a complex developmental condition involving persistent challenges with social communication, restricted interests, and repetitive behavior (2021).” Autism is not acquired after birth, and cannot be “cured,” as it is not a disease but a neurotype. According to NIH.gov, neurotypes are differences in brain functioning that account for how we “experience and interact with the world (2021).” They go on to explain that these differences in thinking and behaving “are not viewed as deficits (2021).” There is no such thing as “normal” when it comes to our ways of viewing and interacting with the world as people, and though autism is technically a disability, and can sometimes express along with physical, cognitive, or intellectual deficits, those who are seen as neurodivergent are not less worthy, able, or valuable than neurotypical individuals. Simply stated, autistic people are born with autism, and it is merely a difference in their way of thinking, expressing themselves and perceiving the world.
“Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. Other problems such as fatigue, headaches, GI problems, and autonomic dysfunction are often seen as part of HSD(The Ehlers-Danlos Society, 2023).” There are many types of hypermobility spectrum disorders, but they all appear to be caused by anomalies that appear on a certain set of genes. In their study of the association between hypermobility and autism, Cassanova et al. note that there's a chance “the result of complex polygenic and environmental interactions(2020)” could be a major factor in regards to people being autistic or not. They noted that both autism and hypermobility are caused by anomalies present on a certain set of overlapping genes. The impact of these gene anomalies depends on the size and number of them: smaller-scale effects that impact a higher number of these genes are usually associated with a less profound form of the conditions, while larger-scale and more rare ones can be associated with more profound impact on the degree of symptoms expressed, either physically, cognitively, or both (2020). Though it may be surprising due to the impression that most cases of autism are primarily related to patterns and thought and behavior rather than outward physical manifestation, there are numerous similar conditions that are experienced similarly between autistics and those with hypermobility spectrum disorders. Cassanova et al. go so far as to posit that connective tissue/hypermobility disorders may even be their own subtype of autism, though this has not been researched thoroughly beyond that account(2020). In the review of literature we will focus on the symptoms presented by both autism and hypermobility disorders, as well as how these conditions may add additional barriers to the lives of the “substantial minority” in which they overlap (2020). Literature Review: Both autistics and those with hypermobility spectrum disorders are more susceptible to experience coordination problems and sensory issues. The coordination issues and some sensory seeking/avoiding behaviors that can come along with both diagnoses are thought to be caused by “proprioceptive impairment (Cassanova et al, 2020).” According to WebMD, proprioceptive impairment can mean walking on uneven ground causes instability, difficulties gauging how much strength or force to use in certain interactions with items and people, lack of coordination in movement, bumping into objects, falling, difficulty maintaining a straight path when walking, or dropping objects, among other difficulties. In certain circumstances these individuals may seek sensory input in the form of hitting or slapping themselves, banging or tapping themselves against objects, jumping up and down, seeking the tight squeeze of a weighted blanket or tight hug, or moving their bodies in other ways to provide stimulatory input. Other types of sensory issues experienced across these diagnoses vary depending on the area of the brain impacted, but it is common to see “pain and touch sensitivities (Cassanova et al, 2020).” This may include an aversion to certain textures or feelings in the body and may also include a heightened or dampened response to pain. Some of these individuals with either or both diagnoses will experience pain in situations where it may not be expected or experienced by others (2020). This may also include light and sound sensitivities and food sensitivities based on texture and taste. Another overlapping concern for both groups is autonomic dysregulation. This may have a variety of effects, including “high basal sympathetic tone(Cassanova et al, 2020),” which means the body more easily enters the stress response, or fight or flight response, especially in times of tension. In addition, they may experience a slowed or lesser ability for the body to restore itself to a relaxed state after a time of stress that activates the fight or flight reflexes. This could, given time, make some individuals more susceptible to acquiring chronic fatigue syndrome(2020). Those who experience the inverse of this, lower sympathetic tone, may experience low blood pressure and struggle to remain upright or stand without becoming lightheaded. It tends to be the case that those with lower basal sympathetic tone experience heightened anxiety and may struggle more with socializing. The differences in basal sympathetic tone may also contribute to why those with either diagnosis may use stimulation-seeking behaviors or stimulation behaviors that are meant to vent anxiety or stress (2020). This situation can also contribute to stomach and digestive issues that can cause significant discomfort. Immune dysregulation is another symptom common across both autism and hypermobility disorders. This will cause the body to either fail to react as strongly as expected when there is a threat such as a virus, or to react more strongly to anything it senses as a threat, which poses the possibility of the body attacking its own tissues (Children’s Hospital of Pittsburgh, 2020). Additionally, differences in brain structure at birth that may exist in a small minority of both populations may cause seizure disorders. They may also experience conditions secondary to these issues, such as “eating disorders, suicidality […] and sleep disorders (Cassanova et al, 2020).” These individuals may also be more prone to experience fibromyalgia and musculoskeletal pain and have a much higher overlap than the general population with tic disorders such as Tourette’s (Csecs et al., 2021). There is also a high prevalence in this population of experiencing co-occurring mental health conditions and neurotype expressions such as ADHD and mood disorders (Cassanova et al, 2020). These myriad challenges can profoundly impact on the physical and mental life of individuals, especially if they experience comorbid physical and mental conditions in addition to being autistic. Coordination problems can result in falls and injuries and may influence an individual to avoid being active. Avoiding physical activity can lead to weight gain as well as further instability and weakness of joints and muscles, compounding potential for injuries in someone with connective tissue/hypermobility disorder. Similarly, individuals who struggle with blood pressure issues due to low sympathetic tone may be prone to passing out or becoming dizzy when standing up or standing in general. This can severely restrict activity and cause fear of further activity, having many of the same outcomes as above. Pain is also a difficult topic for this population. If a person feels more pain than expected in certain situations (hyperalgesia) or experiences pain in scenarios where others usually do not (allodynia) they may avoid these situations or spend a lot of time resting and seeking care. In either scenario we could imagine how immensely their life is restricted or hindered (Cassanova et al, 2020). Sensory sensitivities in themselves are not a problem—it is more specifically the world around individuals who experience these sensitivities that causes the problem. This world often demands us to be in spaces with bright lights or loud noises, enduring potentially distressing textures or pressures, and does not readily offer accommodations. In some circumstances we may be asked to wear uncomfortable clothing or avoid using stim behavior. People with sensory sensitivities along these lines may struggle to do many of life’s important tasks without accommodation, or in general. For example, going to the grocery store, working, driving a car, attending school, among many others. They are responsible for acquiring their own accommodations in most scenarios (if they are even available). This costs money and time, as well as precious energy that is often in low reserves for people living with pain and differing neurotypes that may invite the prospect of masking, which is energy intensive. Experiencing a higher basal sympathetic tone may result in an individual feeling consistently stressed by issues that may not feel stressful for others. This heightened sense of anxiety that can be very hard to soothe can cause fatigue disorders, or just fatigue in general, as well as muscle tension, difficulty sleeping, poor concentration, and digestive issues. Extreme anxiety can also hinder one’s social life, work prospects, and ability or desire to navigate the world. It may be way more taxing to complete daily life tasks than it would be for a neurotypical person who faces no challenges related to their mobility or pain levels. This anxiety may also be provoked by the above issues related to allodynia or hyperalgesia. Constantly wondering what will cause pain and dealing with constant pain can have huge influences on anxiety levels. Epilepsy is another overlapping condition for a portion of these populations. This condition can cause a person to have seizures randomly or after certain triggering events. Examples of triggering events may include not eating, missing medications, taking certain medications, flashing lights, stress, drug or alcohol use, illness, and being overly tired, among others. An individual who is managing epilepsy must be mindful of scenarios in which their seizures may be triggered, which may cause them to avoid certain activities or be fearful of certain scenarios. They may also injure themselves during a seizure from falling or otherwise, especially if they are alone and have no access to medical attention. These concerns are compounded if the individual has pain sensitivity, chronic pain, or other musculoskeletal issues that would make them more sensitive to fall damage (Schachter, 2023). Beyond these more physical manifestations, an individual with multiple overlapping conditions may experience grief. This could be related to challenges in accepting the reality of their disability and what limitations it may impose on their lives. They may find that friends and family are more distant or harder to see due to their accessibility or accommodation needs, or because some people tend to be uncomfortable with being present with others who are grieving or dealing with an ongoing, chronic health problem or disability. Some individuals in this population will also have different ways of communicating that the outside world may perceive as poor social skills and may lack the ability to make or maintain friendships. They may additionally be unable to work or find themselves stuck inside due to pain, mobility, or balance issues. They may feel the pain of how shaming society can be for disabled individuals. Whether their disability is extremely visible or invisible to observers, disabled individuals are judged for their presentation, needs, and presence in society. People may feel uncomfortable being in the same space as them, avoid them, or (as certain wheelchair users may agree) appear not to see them at all. All the above issues can contribute to a feeling of loneliness, depression, grief, or low self-worth. Quadt et. al. studied how loneliness impacts health (especially the health of neurodivergent individuals), noting that individuals experiencing severe or long-term loneliness are at higher risk for depression, anxiety, psychotic disorders, cardiovascular conditions, immunological or inflammatory system changes, along with other chronic health concerns (2020). Young individuals or those in secondary education may also struggle. “Such populations may face a range of challenges in obtaining appropriate support for physical conditions [….] including communication challenges, misattributing physical health symptoms as a part of neurodivergence, and a history of not being believed, which limits symptomatic reporting (Flannagan, 2022).” This is added to any potential difficulty that pain, sensory issues, or accessibility issues may add to school environments, as well as difficulties being understood if they communicate in a different way than neurotypical individuals tend to. A young person handling these intersecting issues will need a practitioner who understands why these scenarios may cause anger, grief, depression, or other less positive mental health outcomes. Conclusion In summation, there is an overlap between autism and connective tissue/hypermobility disorders that opens this population up to a bevy of potential physical and mental health conditions. Though everyone will have a different presentation, living situation, and way of dealing with their struggles, having multiple ongoing chronic health or mental health challenges can be very taxing for an individual, and potentially make them susceptible to loneliness, depression, anxiety, grief, trauma, and other deleterious conditions. Physical challenges and limitations, in combination with mental health difficulties and the difficulties sometimes imposed by being neurodivergent, can limit a person’s ability to participate in society to the level that they may desire, which can have many of the same outcomes. Given the confluence of issues that can potentially overlap in a person’s life if they have comorbid conditions along with being autistic, it is important for mental health practitioners who work with this population to be aware of the potential challenges they may face related to these conditions. They must be ready to address grief, trauma, disability justice issues, anxiety, depression, the mental impact of chronic pain, family issues, life changes related to conditions or disability, among others. Though no practitioner can be completely knowledgeable in every topic, it would suit professionals well to listen to their clients thoroughly and do research about the conditions they face, doing their best to anticipate what types of support their clients will need given their diagnoses. They would be well suited to listen carefully to their clients, and openly ask what kinds of goals they have in therapy to provide the most thorough support and make sure the client feels empowered in their own care. They should do their best to understand the societal implications of disability and neurodivergence, as a practitioner who does not understand disability justice may not believe their client or understand the severity of how society struggles to accommodate, erases, and ignores, and often abuses our disabled populations. To do this a practitioner must be open, humble, and willing to learn about experiences outside of their own. References Baumer, N., & Frueh, J. (2021, November 23). What is Neurodiversity? Harvard.edu. https://www.health.harvard.edu/blog/what-is-neurodiversity-202111232645 Casanova, E. L., Baeza-Velasco, C., Buchanan, C. B., & Casanova, M. F. (2020, December 1). The Relationship Between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders. MDPI.com. https://www.mdpi.com/2075-4426/10/4/260 Children’s Hospital of Pittsburgh. (2023). Immune dysregulation exam, diagnosis, and treatment: UPMC Children’s Hospital. CHP.edu. https://www.chp.edu/our-services/rare-disease therapy/iddat/diagnosis-treatment Csecs, J. L. L., Iodice, V., Rae, C. L., Brooke, A., Simmons, R., Quadt, L., Savage, G. K., Dowell, N. G., Prowse, F., Themelis, K., Mathias, C. J., Critchley, H. D., &; Eccles, J. A. (2021, December 20). Joint hypermobility links neurodivergence to dysautonomia and pain. Frontiersin.org. https://www.frontiersin.org/articles/10.3389/fpsyt.2021.786916/full?&utm_source=Email_to_authors_&utm_medium=Email&utm_content=T1_11.5e1_author&utm_campaign=Email_publication&field=&journalName=Frontiers_in_Psychiatry&id=786916 Flanagan, A. (2022, November 8). Neurodivergents and Flexibility Training . AirSpace Bodyweight Aerial Fitness. https://www.airspaceperth.com.au/blog/neurodiversity-and-flexibility-training-part-1 Jadhav, M., & Schaepper, M. A. (2021, August). What is Autism Spectrum Disorder? Psychiatry.org - What Is Autism Spectrum Disorder? https://www.psychiatry.org/patients-families/autism/what-is-autism-spectrum-disorder Schachter, S. C. (2023). What is Epilepsy? Understanding Epilepsy. https://www.epilepsy.com/what-is- epilepsy/seizure-triggers The Ehlers Danlos Society. (2023, March 2). What is HSD? Ehlers-Danlos.com. https://www.ehlers- danlos.com/what-is-hsd/ Quadt, L., Esposito, G., Critchley, H., & Garfinkel, S. (2020, June 28). Brain-body interactions underlying the Association of Loneliness with mental and Physical Health. Sciencedirect.com. https://www.sciencedirect.com/science/article/abs/pii/S0149763420304425
3 Comments
11/14/2024 06:42:34 am
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11/14/2024 06:43:56 am
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1/27/2025 09:57:51 pm
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