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Key Takeaways
- Researchers have found some evidence that postural orthostatic tachycardia syndrome (POTS) is more common in autistic than allistic individuals.
- Some POTS symptoms overlap with common autistic traits and experiences, including fatigue and sensory sensitivity.
- Autistic individuals with POTS may want to take extra care to manage their energy levels and sensory inputs in order to prevent burnout.
Many autistic individuals report experiences with postural orthostatic tachycardia syndrome (POTS), a disorder of the autonomic nervous system. Although there has been some research on comorbid autism and POTS, science is yet to reveal much about the two diagnoses’ relationship. However, we know that they have some overlapping features, and that people with either diagnosis can benefit from support strategies. Read on to learn more about what we know about POTS and autism.
The link between autism and POTS
There is some evidence that POTS occurs more frequently among autistic individuals than among allistic (non-autistic) individuals. Researchers believe that autonomic nervous system dysfunction, or dysautonomia, is overall more prevalent among autistic individuals, and POTS is one of the most common forms of dysautonomia.
Some common symptoms that autistic individuals experience—such as digestive issues, brain fog, fatigue and burnout—mirror POTS symptoms. Sensory hypersensitivity, a very common autistic trait, is also seen among individuals with POTS. In autistic individuals, this overlap could lead to a delayed referral for POTS testing, making it harder to get diagnosed and treated for POTS.
Further research is needed to help us understand the link between POTS and autism, and what this relationship means for autistic individuals.
What is POTS?
Postural orthostatic tachycardia syndrome has a lengthy name. Here’s what each component stands for:
- Postural: Concerning the position of one’s body
- Orthostatic: Concerning standing up
- Tachycardia: An abnormally high heart rate (resting heart rate above 100 beats per minute)
- Syndrome: A group of symptoms occurring together
POTS is a disorder of the autonomic nervous system. The autonomic nervous system controls involuntary bodily functions such as heart rate, breathing, blood pressure and digestion. In people with POTS, the autonomic nervous system doesn’t balance blood pressure and heart rate as it’s supposed to, causing blood to pool lower in the body when a person stands continuously.
POTS symptoms
POTS symptoms can vary across individuals. They may include:
- Fatigue
- Dizziness or lightheadedness (especially with prolonged sitting, standing or walking)
- Fainting or nearly fainting
- Rapid heart rate or heart palpitations
- Brain fog
- Digestive issues
- Nausea or vomiting
- Headaches
- Increased sweating
- Shaking or tremors
- Worsening of symptoms with exertion
Some individuals experience POTS symptoms continuously, while others’ symptoms come and go. Most often, POTS symptoms improve over time, though some people experience constant or long-lasting symptoms.
How common is POTS?
It is estimated that between one and three million Americans have POTS. Anyone can have POTS, although it is most common among people assigned female at birth (AFAB) as well as those between the ages of 15 and 50. People who have a family history of POTS are also more likely to have POTS themselves.
POTS has been associated with other conditions, including:
- Hypermobile Ehlers-Danlos Syndrome (hEDS)
- Long COVID
- Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
- Irritable bowel syndrome (IBS)
- Traumatic brain injury (TBI)
- Migraines
How is POTS diagnosed?
POTS is often diagnosed using a tilt table test, during which a person is secured to a table while lying down. The table is then raised to an upright position, and the individual’s heart rate and blood pressure are monitored while they remain in this position.
If the individual’s heart rate rises significantly without a significant decrease in blood pressure, they likely have POTS. A standing test where an individual rises on their own from a lying to standing position may also be used. Additional diagnostics, such as blood or lab tests, may also be used to support a diagnosis of POTS.
Managing POTS as an autistic person
While POTS cannot be cured, it can be managed. Many of the interventions that help allistic individuals manage POTS are also effective for autistic individuals, although autistic people with POTS may need to take extra care to manage their energy exertion and sensory inputs. Working with your primary care provider and specialists is crucial in creating an individualized plan for managing POTS, taking your full medical history into account.
For autistic individuals, it’s always best to work with clinicians who are familiar with autism and have experience treating autistic adults—although it can be difficult to find providers with this background. Working with providers familiar with autism can improve the way they communicate with you and tailor your treatment plan to address your individual needs. Here are a few ways to help manage POTS.
Increase your fluid and salt intake
Drinking plenty of fluids throughout the day and increasing your salt intake are the most commonly recommended interventions for POTS. Increasing water and salt intake can help more blood reach the heart and brain, improving POTS symptoms.
If increasing your water and salt intake proves difficult, it’s important to find ways to make these changes more palatable and manageable. For example, you can make drinking water more enticing and easier to remember by using a fun cup, keeping seltzer water in your fridge or flavoring your water with electrolyte drink mixes, lemon or other flavoring agents.
“Stacking” hydration with existing habits can also make it easier to remember to drink water if you don’t feel strong thirst cues. For example, you could try having a glass of water after walking your dog or before brushing your teeth.
Getting regular movement
Movement and exercise can be helpful for autistic individuals’ overall sense of well-being, and a gradual approach to increasing physical activity can help reduce POTS symptoms. Exercise can be challenging with POTS, so it's essential to meet yourself where you are and gradually increase your tolerance for activity. Working with a physical therapist is a great way to get tailored support and an individualized plan for movement.
Manage your energy and pacing
Managing energy and exertion is especially important for autistic individuals with POTS. POTS is associated with fatigue and can limit a person’s time on their feet. Autistic people also face the risk of a unique kind of burnout. Autistic burnout is the state of chronic exhaustion and fatigue that autistic people can experience as a result of chronic stress and nervous system dysregulation. Burnout is often fueled by the gap many autistic people find between the neurotypical expectations they are held to—or have learned to hold themselves to—and how they actually move through the world. This gap can feel more pronounced for autistic people with POTS, who are likely at a higher risk of autistic burnout.
Pacing systems are a great way for autistic individuals and people with POTS, and especially those with both diagnoses, to make plans to modulate and conserve their energy and mitigate fatigue. These are strategies individuals use to proactively plan how they spend their energy in order to prevent worsening fatigue and burnout.
One popular example of a pacing system is the “spoon system” or “spoon theory,” which uses a concrete, tangible item (spoons) to help individuals visualize their energy output. In this framework, each individual has a finite number of spoons to use each day, and each activity costs a certain number of spoons that corresponds to the amount of energy it requires. For example, showering might cost one spoon, going to the grocery store might cost four. The only way to replenish spoons is through rest and regulation. This approach frames energy concretely as a finite resource, and can help some neurodivergent individuals reflect on how much energy they expend in a day and remind them to make time to recharge.
Some individuals also use the “traffic light system,” which assigns each activity a person does one color—red meaning high energy expenditure, yellow meaning moderate expenditure and green meaning either neutral or restorative. This is a less quantitative system that can provide scaffolding for individuals to assess what in their life is draining and what helps them recover. This way, they can make sure they plan days that balance any red activities or many yellow activities with green ones.
Manage sensory input
Sensory hypersensitivity is very common among autistic individuals, and it can occur in those with POTS, too. Some POTS symptoms may also be particularly uncomfortable or distressing for autistic individuals with sensory hypersensitivity, like excessive sweating, dizziness or headaches. Being in a hot environment, which can be a sensory stressor for some autistic people, can also worsen POTS symptoms.
Autistic individuals with POTS may find they need more sensory support. Tools like sunglasses, curtains, earplugs and headphones can help mitigate sensory stressors and reduce the likelihood of sensory overload.
Using compression garments
Compressive garments worn on the legs, like compression socks, can reduce the severity of POTS symptoms by pushing blood upwards when it tends to pool in the legs. Compression garments can also be supportive for many autistic individuals, offering soothing and regulating sensory stimulation, making them a great intervention to try for autistic individuals with POTS.
Medications
Medications are sometimes prescribed to help manage and reduce POTS symptoms. These may include:
- Midodrine (Orvaten, ProAmatine): A medication that treats low blood pressure
- Fludrocortisone (Florinef): A corticosteroid that aids salt retention and increases blood volume
- Pyridostigmine (Mestinon): A medication that can lower a high heart rate
- Beta-blockers: Medications that reduce a high heart rate, and are also prescribed to treat physical symptoms of anxiety
Each case of POTS is different, and depending on your symptoms and your individual medical history, different interventions may work differently for you. Consult your doctor about what approaches may best help you manage POTS and what they might mean for your autism.
How Prosper Health can support
POTS is not a mental health condition, but its symptoms can cause a great deal of stress and frustration, taking a toll on your mental well-being. Prosper Health’s therapists specialize in supporting autistic adults, and they can help you process and cope with the challenges that come along with POTS. They can also support you in addressing any mental health concerns and empower you to improve your overall well-being.
Therapy with Prosper Health is covered by insurance and entirely remote. If you’re ready to get started, click the button below to schedule an intake within days.
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