Exploring the Link Between POTS and Autism Challenges

POTS & Autism: Understanding the Overlap

While dizziness upon standing might happen to anyone occasionally, POTS is a more chronic condition. It affects how your autonomic nervous system, which controls things you don't have to think about, reacts to changes in posture. These automatic bodily functions include heart rate and blood pressure. Normally, when you stand up, your blood vessels quickly tighten to push blood back up to your brain.

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With POTS, this process lags, so your heart races trying to compensate. Although POTS affects people of all neurotypes, research has found significantly higher rates of dysautonomia, including POTS, in those with ADHD and Autism. It's estimated that over 80% of those with autism spectrum disorder (ASD) referred to specialist clinics have a diagnosed autonomic condition (Eccles et al., 2021).

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Why the Connection Between POTS and Autism?

The link between POTS autism remains a topic of investigation. However, several theories and factors point toward a deeper connection:
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• Hypermobility: POTS is often linked to hypermobility syndromes like Ehlers-Danlos Syndrome (EDS). Hypermobility is a condition where joints can bend further than usual due to looser connective tissues. Those with hypermobility have been shown to have an increased incidence of dysautonomia and POTS (Mathias et al., 2012). Autistic individuals have higher rates of EDS, providing a possible explanation for why POTS is more prevalent.
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• Sensory Processing: Those with autism have distinct differences in how they process sensory information. Overstimulation or overwhelming sensory input, common in those on the spectrum, can impact autonomic responses, potentially contributing to POTS symptoms (Althaus et al., 2004).
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• Immune System Dysregulation: Immune system issues, including allergies and autoimmune disorders, have a strong association with both autism and POTS. While a direct causal link isn't fully understood, researchers suspect immune dysregulation might play a role (Sotzny et al., 2018).
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Ultimately, more research is needed to fully unravel the complex connection between POTS and autism. Although there is no specific genetic connection found, a significant correlation exists. This suggests that those on the spectrum may be more prone to POTS. The overlap in other areas like hypermobility and immune system responses suggests possible mechanisms for this connection.

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Understanding the Symptoms

If you suspect you have POTS, understanding the range of symptoms is essential. They can be diverse, but common signs include:

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POTS Symptoms and Sensory Sensitivities

It is essential to be aware that individuals with autism, who often experience sensory sensitivities, may perceive these symptoms differently than neurotypical individuals (Ebisch et al., 2011). What might feel like mild dizziness to someone without autism, could trigger significant distress and even lead to a meltdown for a person on the spectrum.

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Therefore, managing POTS often involves both addressing the physical symptoms and minimizing sensory triggers. This often calls for a multi-faceted approach that considers the individual’s sensory profile, physical symptoms, and the environment. It highlights how having sensory sensitivities adds another layer of complexity to managing POTS in the context of autism.

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Getting a Diagnosis

If you or someone you love has POTS symptoms, the first step is to get an accurate diagnosis from a medical professional. It is best to see a professional familiar with both POTS and autism. Be prepared to discuss your symptom history, lifestyle habits, and any known family history of hypermobility disorders or autonomic conditions.

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Doctors will use various tests to evaluate heart rate and blood pressure, specifically observing how they change when you move from lying down to standing. A tilt table test might be used to assess how your body responds to changes in posture in a controlled setting.

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What Does a Tilt Table Test Do?

A tilt table test helps diagnose autonomic disorders. You lie strapped to a table that slowly tilts upwards while a doctor monitors your heart rate, blood pressure, and symptoms. It can reveal if you experience abnormal changes when transitioning to an upright posture.

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For people with autism, having to be restrained for a medical procedure and being asked to describe symptoms precisely might trigger distress or sensory overload (Duerden et al., 2013). Working with your doctor to minimize triggers before the procedure, by allowing calming sensory input like a weighted blanket or noise-canceling headphones, can improve your tolerance for it. Communicating any sensory anxieties you have to your healthcare team helps you have a smoother, more positive experience.

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Managing POTS: Lifestyle Tips & Medical Options

Though there is no one-size-fits-all cure for POTS, several strategies can help you manage its symptoms and improve your quality of life. It's often a trial-and-error process, so staying open to trying various strategies and finding what works best for your individual needs is vital. Here are some strategies commonly used in managing POTS autism:

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Lifestyle Modifications:

Small lifestyle changes can make a surprisingly big difference:
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• Increased Salt Intake: POTS often comes with lower blood volume. Doctors might recommend consuming more salt and fluids (Freeman et al., 2011). Consider electrolyte-rich drinks and gradually increase your salt consumption throughout the day. Salt sticks can provide a quick sodium boost if needed, particularly helpful if nausea is present. Remember, salt is important for regulating bodily functions, so it is best to discuss salt consumption with a doctor.
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• Compression Stockings: These tight-fitting stockings help improve circulation, encouraging blood flow from your legs back to your heart (National Institute of Neurological Disorders and Stroke). Compression stockings can provide pressure to those veins and keep blood flowing to your brain.
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• Regular Physical Activity: If you are dealing with POTS, doctors recommend slow-paced physical activity as your symptoms allow. For people with sensory issues common in autism, finding a low-sensory, calming exercise form can be more approachable than something stimulating. Swimming or yoga can be good choices.
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• Nutrition: Eat balanced, nutrient-dense meals regularly to avoid blood sugar swings. Stay hydrated and experiment with a low-histamine diet if sensitivities are present, as histamine can worsen some POTS symptoms. Additionally, low iron has been linked to worsened POTS symptoms, so a blood test to rule that out might be a helpful step.
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• Pace Yourself: Listen to your body and avoid prolonged standing or strenuous activity. Those on the spectrum often push past their limits, and this can make symptoms worse.
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• Sensory Regulation Strategies: Anxiety, fear and stress (often caused by sensory overload or social demands), can increase cortisol production and, in turn, influence heart rate variability (Dalton et al., 2005). Strategies like mindfulness, stimming with sensory tools you enjoy (a weighted blanket, fidget toys), noise-canceling headphones, and dimly-lit spaces can all be calming.
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• Slow Gradual Upright Transitions:  Instead of springing up quickly, use a paced approach. Prop your bedhead up, and before standing, spend a minute doing ankle pumps. Then slowly sit on the edge of the bed with your feet flat before gradually standing up. Allow your blood pressure to regulate, even pausing if dizziness starts.

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Medical Treatment for POTS:

Your doctor might suggest a combination of lifestyle changes and medications depending on your POTS symptoms and their severity:
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• Fludrocortisone: This medication, frequently used to help regulate blood pressure in POTS, can boost your blood volume, but might worsen those on the spectrum sensitive to temperature changes by affecting thermoregulation.
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• Midodrine: Another commonly prescribed medication for POTS, Midodrine acts to increase blood vessel constriction, especially in the legs, preventing blood from pooling when you stand up. Midodrine, similar to fludrocortisone, might exacerbate heat sensitivities in those on the spectrum.
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• Beta-blockers: Medications such as propranolol or metoprolol, though commonly prescribed to manage POTS, might not be the best fit for every individual. Beta-blockers target adrenaline receptors in the heart, reducing tachycardia, but may worsen fatigue and coldness in some people. Those on the spectrum may perceive fatigue more intensely or dislike colder extremities due to sensory processing differences (National Institute of Neurological Disorders and Stroke).
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• Selective serotonin reuptake inhibitors (SSRIs): Primarily prescribed for mental health conditions like depression and anxiety, they are often beneficial in managing mood in POTS, especially in those with co-occurring anxiety which is frequent in those with ASD.
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• Anti-nausea medications: Helpful for some people, but again it's individualized. Those on the spectrum, sensitive to certain sensations, may experience textures of medications as unbearable.
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The decision to prescribe any medication and choose the best fit is made by a medical professional. Their approach considers individual medical history, severity of symptoms, possible side-effects, sensory sensitivities common in autism, and your preference.

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FAQs About POTS Autism

Is hypermobility related to autism?

Though a definitive cause-and-effect relationship hasn’t been found, there is a strong connection between hypermobility and autism. The incidence of both joint hypermobility and disorders like Ehlers-Danlos Syndrome (EDS) (Attwood and Garnett) is significantly higher in people with autism than in the general population. While researchers believe the link involves genetics and the makeup of connective tissues, further studies are needed.

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For now, the observed connection underscores that assessing hypermobility should be a standard part of medical evaluations for those on the spectrum.

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What syndromes are related to POTS?

POTS has been linked to a range of conditions and syndromes:
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• Ehlers-Danlos Syndrome (EDS): EDS encompasses various inherited connective tissue disorders impacting the structure of collagen throughout the body. Hypermobile EDS is the most prevalent type and its symptoms of loose joints, fragile skin, and chronic pain frequently occur in POTS. Research has identified structural brain differences in those with joint hypermobility and psychiatric disorders (Eccles et al., 2012), suggesting possible shared neuro-anatomical links. Individuals with EDS may experience gastrointestinal problems, fainting, dizziness and more.
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• Mast Cell Activation Syndrome (MCAS): This disorder involves the immune system’s mast cells becoming hyper-reactive (Eccles et al., 2015). This can release an excess of histamine into the body, triggering an array of symptoms including tachycardia, fatigue, headaches, gut issues, flushing, and allergic responses. These symptoms are often mistaken for allergies, anxiety, or even chronic fatigue syndrome. Though the prevalence is higher in people with hypermobile EDS, some research shows a strong association with autism independent of EDS (Evrard, 2019).
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POTS is more prevalent in autoimmune disorders and their impact on autonomic nerve function. Further, those on the spectrum often have dysregulation of their autonomic nervous system. This can contribute to symptoms related to heart rate, temperature regulation, and digestion. Identifying these overlapping conditions helps develop a more targeted approach to managing POTS symptoms.

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Can POTS cause sensory issues?

While POTS doesn't directly cause sensory issues, some research highlights a strong link between autonomic nervous system (ANS) dysfunction and how the brain processes sensory information (Allman et al., 2011). People with POTS, especially those with sensory sensitivities common in autism, may experience heightened awareness of internal bodily sensations associated with POTS.

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These sensations include heart palpitations, shortness of breath, or digestive upset. Those already sensitive to sensory stimuli may find these physical sensations particularly distressing or disruptive, impacting mood and overall functioning (Anderson et al., 2013). POTS doesn’t cause the sensory issues, but its impact on the body, particularly the cardiovascular system, is perceived more intensely in those already prone to sensory sensitivities.

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What is the life expectancy of a person with level 2 autism?

Level 2 autism isn’t a terminal illness so, a person’s life expectancy with this level of autism isn’t affected by their diagnosis. Although, it's crucial to remember those with level 2 autism, and any level of autism, have complex and individualized needs. Supporting and meeting those needs often requires significant effort and resources (Aman, 2004).

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This doesn't relate to life expectancy, but rather the reality that people with autism often face many obstacles throughout their lives and early support can improve long-term quality of life.

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Conclusion

The overlap between POTS and autism is becoming increasingly recognized as more research reveals the intricate interplay between the autonomic nervous system, sensory processing, and immune responses. While POTS poses unique challenges, there is growing hope. Through lifestyle modifications, working collaboratively with knowledgeable healthcare providers, and developing personalized coping strategies, many can learn to effectively manage their symptoms and lead fulfilling lives. Further research promises a deeper understanding and new therapeutic options in the years to come.

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