Autism and Common Chronic Physical Health Issues

Autistic (and ADHD) people often experience physical health problems in addition to their neurodivergent traits. These can include gastrointestinal problems, seizures, connective tissue disorders, autonomic dysregulation, and sleep disturbances. Although we don’t know why these problems often show up together, it’s important to be aware and get help if you experience any of them. To get a well-rounded perspective, it can be valuable to understand how health problems influence and intensify autistic traits and mental health concerns.

Types of physical health problems that autistic people often experience

Gastrointestinal problems (GI issues) are common among autistic people. Scientists are unsure of the exact causes, but they theorize it could have to do with inflammatory issues. Some common gastrointestinal disorders include constipation, diarrhea, abdominal pain, gastroesophageal reflux disease (GERD) ulcers, Crohn’s disease, leaky gut syndrome, and inflammatory bowel disease (IBD). Food allergies are common among neurodivergent people.

Connective tissue disorders affect movement by reducing the strength and elasticity of the connections between the skin, bones, and other organs. There are a number of different connective tissue disorders, including rheumatoid arthritis, Ehlers-Danlos Syndrome (EDS), and Hypermobility Spectrum Disorders (HSD). EDS affects the body’s collagen, which is like a glue that holds together skin, bones, and other organs. People with EDS often have very flexible joints and thin, fragile skin. HSD affects the body’s connective tissues and muscles. People with HSD often have very flexible joints and are able to do things like bending their thumb all the way back to their wrist. Both EDS and HSD can cause joint pain, skin problems, heart problems, and blood vessel damage. People with EDS and HSD also commonly have postural orthostatic tachycardia syndrome (POTS). POTS causes the heart to beat faster when a person stands up. This can cause dizziness, lightheadedness, and fainting.

Autonomic dysregulation (dysautonomia) affects the autonomic nervous system, which controls involuntary body functions like heart rate, blood pressure, digestion, and bladder function. People with dysautonomia often experience a number of symptoms, such as dizziness, lightheadedness, difficulty breathing, and fatigue.

One in four autistic people will experience seizures at some point in their lives. Seizures can be caused by a variety of factors, including genetic predisposition, autonomic dysregulation, electrical abnormalities in the brain, and infection. Seizures can be life-threatening. Epilepsy (having multiple seizures) is associated with movement issues and language difficulties in autistic people. There are medications that help with some types of seizures.

Sleep disturbances are very common among autistic people. These can include difficulties falling asleep or staying asleep, nightmares or night terrors, sleepwalking, or talking in their sleep. All of these problems can contribute to not getting enough rest in restorative deep sleep phases such as R.E.M. when our brain processes and stores information from the day, as well as flushes toxins. To compare, most neurotypical people spend about 23 percent of sleep time in R.E.M., whereas autistic people average around 15 percent. As a result, autistic people may be even more exhausted during the day.

Possible effects of these co-occurrences

Chronic physical health issues can cause a range of psychological and lifestyle effects. For example, gastrointestinal (GI) issues cause a great deal of physical discomfort and have been linked to poor sleep, social withdrawal, and self-injurious behaviors in autistic adolescents. GI issues in autistic people are often difficult to diagnose because they may not be able to communicate their discomfort verbally, instead acting out aggressively or becoming irritable.

Autistic people often have food allergies that might go unidentified. This can lead to feelings of stress and anxiety, not just from the allergens themselves but also from social situations that may arise as a result of them. In addition to common sensory sensitivities around taste, texture, and smell, autistic people may limit their diet to “safe foods” in order to avoid gut pain; or they may be misdiagnosed with an eating disorder by family and friends when really they’re just trying to maintain a safe diet.

Connective tissue disorders Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD) are not commonly known, so family doctors may not always be trained to notice and refer patients to a specialist. These disorders can affect many different parts of the body, and symptoms can vary widely from one person to the next, which can make it even more challenging to diagnose. In some cases, a connective tissue disorder may be mistaken for another condition altogether. For instance, EDS is sometimes misdiagnosed as fibromyalgia or multiple sclerosis. HSD is often mistaken for arthritis or chronic fatigue syndrome. Because there is no one test that can definitively diagnose a connective tissue disorder, doctors must often rely on a combination of medical history, physical examination, and lab tests to make a diagnosis. Even then, there is no guarantee that a correct diagnosis will be made. Unfortunately, this means that many people with these disorders go undiagnosed for years, or even decades.

Everyday activities become difficult when suffering from EDS and HSD. Joint dislocations, muscle fatigue, and severe pain are common among those affected by these conditions. Early signs of chronic pain in childhood are often misunderstood and cast off as “growing pains.” When you’re in pain constantly, it’s common to develop anxiety and depression, as well as attention difficulties and fatigue. Eventually, this can lead to burnout.

The reality is that more people are becoming aware of these conditions through social media and their own research. Doctors may be hesitant to believe patients who self-report concerns about EDS/HSD, and instead, write off these complaints as “drug-seeking behavior.” Unfortunately, these medical professionals might refuse to give patients the care they need. They might also make patients feel like their conditions are entirely psychological— implying or even telling them outright that “it’s all in their head.” This gaslighting can cause people to start looking for other ways to cope, such as alcohol and drugs; opiates, specifically.

Autistic people typically have higher levels of sympathetic nervous system activation (the “fight-flight” response), which can lead to a faster heart rate, higher blood pressure, trouble digesting food, and increased cortisol levels. This can make it harder for an autistic person’s parasympathetic nervous system to “rest and digest.” Autonomic dysregulation can also lead to difficulty regulating body temperature and trouble sleeping, which also contributes to fatigue, headaches, and dizziness. Symptoms such as a faster heart rate and shallow breathing can be misinterpreted by the brain as anxiety and can lead to panic attacks. Interestingly, pets have been shown to help regulate the nervous system and so emotional support animals may be helpful in lessening dysautonomia.

Seizures can be very frightening, which can lead to anxiety and fear about the condition, and some people may develop depression and anxiety disorders. The social effects of seizures can also be significant. Some people with seizures find it difficult to work or go to school, and they may have trouble maintaining relationships, as well as disrupted sleep. Seizures can also cause lifestyle changes, such as avoiding activities that could trigger a seizure or limiting travel, or not driving. In some cases, seizures can be life-threatening or trigger self-injurious behavior (such as “autistic meltdowns”), and this can lead to a feeling of constantly being on edge.

Finally, sleep disturbances can cause fatigue, irritability, and problems with concentration. Dysautonomia can affect the circadian rhythm (the body’s 24-hour sleep-wake cycle) leading to insomnia, hypersomnia (excessive sleeping), sleep-disordered breathing (such as sleep apnea), and sleep-wake cycle disruptions. Sleep deprivation can exacerbate existing mental health issues such as anxiety, and depression, and even cause psychotic episodes (such as delusional and paranoid thinking). Poor sleep can also worsen unpleasant autistic traits such as repetitive behaviors (tics), sensory sensitivities, and attentional issues.

Why it’s important for autistic people to know about these conditions

All of these chronic health conditions interact with each other and lead to an overall decrease in the quality of life for autistic people. The symptoms may also worsen the traits that make autism difficult such as sensory sensitivities, repetitive behaviors, and attention issues. They can also contribute to or even cause mental health issues such as depression, anxiety, obsessive-compulsive disorder (OCD), and psychosis. Mental health therapists may focus on treating depression and anxiety in ways designed for neurotypical people; starting with sleep hygiene, nervous system regulation, support accommodations, and medical advocacy may be more effective.

In addition, numerous autistic clients state that they have had experiences where people around them didn’t believe or support them, including medical providers and therapists in the past, as well as family members, partners, and friends. Being unsupported by others can lead to intense negative emotions, such as loneliness, isolation, anger, and hopelessness. This is why it’s imperative to find people that will offer support,  such as autistic peer groups (whether met in person or online) and therapists trained in neurodiversity-affirming practices.

It can also be helpful to consider a holistic picture… such as if you are diagnosed with EDS and have GI issues, getting screened for autism (or vice versa) is a great idea. Since many of these conditions are hereditary, noticing several members of your family have them could mean screening other members of the family may be helpful.

Advice on how to seek appropriate care and treatment for physical health problems associated with autism

If you are autistic and struggling with chronic illness, it’s crucial to receive the right medical care and treatment. However, this can be tough since many doctors and nurses haven’t had training on how to communicate with and support autistic people. Consequently, lots of autistic people have gone through invalidating experiences with health professionals, which makes it confusing to trust them or open up. Additionally, autistics may also have trouble communicating their worries.

Here are some tips for getting care:

• Bring a trusted friend or family member who knows what you want to discuss with your doctor. Prepare ahead of time for the topics you’d like to cover.

• Ask your doctor to refer you to a specialist, such as a neurologist, gastroenterologist, physical therapist, or sleep doctor. These doctors will be able to provide more specialized care and treatment.

• There are many support groups for people with chronic illnesses and/or autism. Social media sites such as Facebook, Reddit, Meetup, Discord, or through hospitals and therapists are all great places to start. Connecting with other people who understand what you’re going through can be very helpful. They can offer advice and support when needed.

  • One example is The Center for Chronic Illness, which has online groups (as well as in-person in Seattle). https://www.thecenterforchronicillness.org/

• Seek out therapy. Therapy can be helpful for dealing with any physical or emotional issues that come along with chronic illness. Clinical Rehabilitation Counselors (CRC)’s are trained to work with people with disabilities (such as chronic illness). Search for neurodiversity-affirming mental health therapists. It may be helpful to ask other autistic people with chronic health issues who they can recommend.

• Do some research on the conditions that you think might be affecting you and learn what has worked for other people.

Living with a chronic illness can be difficult, both physically and emotionally. For autistic people, this can be compounded by the fact that many physical health problems are not well understood or even recognized by doctors. It is important to seek out appropriate care and treatment for any physical health issues you may be experiencing. 

Sources:

Art generated with DALL-E 

Casanova, E. (2019). What Ehlers-Danlos syndrome can teach us about autism. Blog. Spectrum News. https://www.spectrumnews.org/opinion/viewpoint/what-ehlers-danlos-syndrome-can-teach-us-about-autism/

Casanova EL, Baeza-Velasco C, Buchanan CB, Casanova MF. The Relationship between Autism and Ehlers-Danlos Syndromes/Hypermobility Spectrum Disorders. J Pers Med. 2020 Dec 1;10(4):260. doi: 10.3390/jpm10040260. PMID: 33271870; PMCID: PMC7711487.

Frye, R., Goh, S., Malla, R. (n.d.). Seizures in autism. Blog. The Autism Community in Action.
https://tacanow.org/family-resources/seizures/

Furfaro, H. (2020). Sleep problems in autism, explained. Blog. Spectrum News.
https://www.spectrumnews.org/news/sleep-problems-autism-explained/

Madra M, Ringel R, Margolis KG. Gastrointestinal Issues and Autism Spectrum Disorder. Child Adolesc Psychiatr Clin N Am. 2020 Jul;29(3):501-513. doi: 10.1016/j.chc.2020.02.005. Epub 2020 Apr 2. PMID: 32471598; PMCID: PMC8608248.

Wright, J. (2019). The link between epilepsy and autism, explained. Blog. Spectrum News. https://www.spectrumnews.org/news/the-link-between-epilepsy-and-autism-explained/

Zeliadt, N. (2018). Large study ties gut issues in autism to inflammation. Blog. Spectrum News. https://www.spectrumnews.org/news/large-study-ties-gut-issues-autism-inflammation/