Many Autistic people experience chronic fatigue and pain. In this article, Sara Meyer reviews current research and offers some practical strategies.

There is growing interest in the relationship between autism and various conditions that cause chronic fatigue and generalised pain. These include fibromyalgia, joint hypermobility, and chronic fatigue. While research in this space is still emerging, there is some evidence that all of these conditions are more common in Autistic people, as well as in people with ADHD and anxiety (Ryan et al., 2023).

It is not clear how these conditions are related to autism, but evidence suggests that Autistic people are particularly vulnerable to fatigue. Both Autistic people and people with chronic fatigue experience higher rates of sleep disturbance, for example, and appear to share a common physiological sensitivity to stress. This sensitivity is thought to arise from differences in the hypothalamic-pituitary-adrenal (HPA) axis, which regulates our nervous system and hormone levels.

In addition, some Autistic people are known to be highly sensitive to sensory stimuli and pain (Chen et al., 2017), to the extent that they process pain sensations differently to non- Autistic people. Abnormal pain processing is thought to be the main cause of fibromyalgia (Hoffman et al., 2023; Clauw, 2009).

In a recent study of central sensitivity syndromes including chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, restless legs syndrome, and migraines, Grant and her colleagues (2022) found that 21% of a large sample of Autistic adults had been diagnosed with a central sensitivity disorder, and over 60% met criteria for one. In this study, fatigue and pain symptoms were strongly related to sensory sensitivity and anxiety (Grant et al., 2022). In a follow-up study, participants with a diagnosed central sensitivity syndrome also reported more Autistic traits than people without a central sensitivity condition (Grant et al., 2024). The authors suggest that fatigue and pain may be a common and sadly chronic experience for many Autistic adults.

In another study of Autistic women and women with ADHD, chronic pain and fatigue were reported by almost 77% of participants. Approximately 24% of Autistic women and 39% of women with ADHD described experiencing chronic pain that was widespread, affecting both sides of the body for 3 months or more (Asztely et al., 2019). The women in this study were 5 times more likely to report pain and fatigue than women of the same age in the general population. This suggests that neurodivergent women may be more likely to live with these symptoms than neurotypical women. The same pattern has been found to apply to children and adolescents, pointing to symptoms that start early in life (Lipsker et al., 2018).

There are several different reasons that Autistic people could experience higher rates of chronic fatigue and pain. These include sensory sensitivity, joint hypermobility, and POTS/ dysautomnia. I will briefly discuss how each of these could contribute to pain and chronic fatigue. Research in this area is in its early stages, and we are only just beginning to uncover some of the connections described here.

Sensory sensitivity

Many Autistic people have sensory sensitivities, including differences in the way they perceive pain. According to one review (Moore, 2015), the following differences in Autistic pain processing have been noted:

• Some Autistic people are over-sensitive to pain (hypersensitive), while others are under-sensitive (hyposensitive)
• Autistic people may experience more anxiety around pain
• Tactile sensations may be processed differently
• Autistic people may take longer to recover from pain or exertion

Autistic people may also have difficulty regulating their emotions after a painful or distressing sensory experience. Research (Ibrahim et al., 2019) has shown, for example, that Autistic people exhibit over-arousal in the amygdala (the brain area associated with negative emotion) and under- arousal in the ventromedial prefrontal cortex (which helps us calm down and process our emotions).

For an Autistic person, this may mean that painful or disruptive events are experienced more intensely, resulting in extreme emotional arousal that is difficult and overwhelming for them to deal with. An Autistic person may be simultaneously less able to activate the part of the brain that could help them manage and calm these emotions. This may leave them “stuck” in extreme negative emotion, which accumulates and causes fatigue and pain.

Finally, other sensory sensitivities may contribute to fatigue and pain. Most environments other than the home are busy, noisy, and overwhelming. An Autistic person may expend a lot of their available energy managing sensory challenges, leaving little left over for anything else.

Joint Hypermobility

Recent research has suggested that the link between autism and chronic pain can be partly explained by joint hypermobility. Joint hypermobility occurs when joints can stretch farther than usual or even “pop out” of position during daily activities. This is enabled by exceptionally soft or fragile connective tissue in the body. Joint hypermobility is commonly associated with pain, stiffness, fatigue, frequent sprains, poor balance and coordination, thin skin, and bowel and bladder problems. Rates of chronic fatigue and fibromyalgia amongst people with joint hypermobility range from 25- 86% (Ryan et al., 2023). Joint hypermobility is often associated with Ehlers-Danlos Syndromes.

According to one study, Autistic people were estimated to have a 4.5 fold increased risk of joint hypermobility compared to the general population (Csecs et al., 2023). Joint hypermobility was even more common in Autistic women.

In another paper, joint hypermobility was found to partly account for the link between autism and chronic fatigue/fibromyalgia (Ryan et al., 2023). It is not clear, however, why Autistic people are more prone to joint hypermobility, although genes may play a role.

In other research, for example, 42% of people with joint hypermobility were found to have Autistic or neurodivergent relatives, as well as other relatives with fibromyalgia and chronic fatigue. This suggests that there may be a genetic link between these conditions. A further project noted that while many Autistic people reported fatigue, brain-fog, and sleep disturbance, those who also had joint hypermobility tended to have the most severe pain and fatigue symptoms (Ryan et al., 2023).

POTS/Dysautomnia

Finally, it is possible that POTS or other forms of dysautomnia can partly account for pain and fatigue in Autistic people.

The autonomic nervous system is responsible for regulating involuntary body functions such as breathing, heart-rate, and digestion. Dysautonomia refers to a group of conditions where the autonomic nervous system does not function properly. One specific type of dysautonomia is Postural Orthostatic Tachycardia Syndrome (POTS). It is characterized by an excessive increase in heart rate upon standing up from a sitting or lying position. People with POTS may experience symptoms such as dizziness, light- headedness, fatigue, and sometimes fainting.

A detailed investigation into autonomic dysfunction in autism has not yet been undertaken, but there are some indications that Autistic people may have a profile of sympathetic nervous system excitability. The sympathetic nervous system is associated with rapid heart-rate, anxiety, and fight- or-flight responses, and people with sympathetic nervous system excitability may experience sudden surges in heart-rate. This can in turn cause headaches and feelings of exhaustion. More research is needed to work out how autism affects nervous system functioning (Owens et al., 2021).

Seeking support

It can be very difficult to live with these conditions, and affected individuals may find themselves unable to work or take care of themselves.

According to Grant and colleagues, chronic fatigue and fibromyalgia are also associated with depression in Autistic individuals (2024).

It can be challenging for service providers and clinicians to understand what is going on for Autistic patients affected by these conditions, and some medical providers may be dismissive of cases of chronic pain and fatigue that present with no known cause. For some Autistic people, the fight to access appropriate care and support may consume much of their available energy, leaving little left over for other activities.

There is a critical need for service providers to understand these debilitating conditions and how they present in Autistic people.

If you are an Autistic person affected by one of these chronic conditions, it may help to:

• Keep a diary of symptoms, rating pain and fatigue on a consistent scale each day
• Take note of times when you struggled to perform daily living activities due to pain and fatigue
• Take pictures or videos of times when you are in pain
• Record what a typical day looks like for you
• Ask for alternative communication tools to help you describe your symptoms accurately for example, visual supports, electronic communication devices, sign language, or written communication (notes, emails)
• Follow a predictable routine using energy Energy accounting is a framework where you define your daily activities as either energy deposits (things that increase your energy level) or energy withdrawals (things that decrease your energy level). This should be seen as a subjective exercise, based on how that activity typically makes you feel. You can see an example of how to do this below:

An editable Daily Energy Account Form resource is available to download here.

Sara Meyer, (MA Educational Psychology) is a researcher with Altogether Autism. Sara worked with Autistic children for several years as part of the Ministry of Education Learning Support team. Sara is Autistic and a mother of two young children.  In her free time, she enjoys writing, as well as playing and teaching music.

References

Asztély, K., Kopp, S., Gillberg, C., Waern, M., & Bergman, S. (2019). Chronic pain and health-related quality of life in women with autism and/or ADHD: A prospective longitudinal study. Journal of Pain Research, 12, 2925–2932.

Chen, C., Hung, A. Y., Fan, Y. T., Tan, S., Hong, H., & Cheng, Y. (2017). Linkage between pain sensitivity and empathic response in adolescents with autism spectrum conditions and conduct disorder symptoms. Autism Research, 10(2), 267–275. https://doi.org/10.1002/aur.1648

Clauw, D. J. (2009). Fibromyalgia: An overview. The American Journal of Medicine, 122(12 Suppl), S3–S13. https://doi.org/10.1016/j.amjmed.2009.09.006

Csecs, J. L., Iodice, V., Rae, C. L., Brooke, A., Simmons, R., Dowell, N. G., & Eccles, J. A. (2020). Increased rate of joint hypermobility in autism and related neurodevelopmental conditions is linked to dysautonomia and pain. medRxiv. https://doi.org/10.1101/2020.09.22.20199059

Grant, S., Norton, S., Weiland, R. F., Hoekstra, R. A., & Van der Meer, J. (2022). Autism and chronic ill health: An observational study of symptoms and diagnoses of central sensitivity syndromes in autistic adults. Molecular Autism, 13, Article 4. https://doi. org/10.1186/s13229-022-00486-6

Grant, S., Norton, S., & Hoekstra, R. A. (2024). Central sensitivity symptoms and autistic traits in autistic and non-autistic adults. Autism Research. https://doi. org/10.1002/aur.3125

Hoffman, T., Bar-Shalita, T., Granovsky, Y., & Weissman-Fogel, I. (2023). Indifference or hypersensitivity? Solving the riddle of the pain profile in individuals with autism. Pain, 164(4), 791–803. https://doi.org/10.1097/j.pain.0000000000002724

Ibrahim, K., McCarthy, G., & Sukhodolsky, D. G. (2020). Neural mechanisms of emotional dysregulation. In F. R. Volkmar (Ed.), Encyclopedia of Autism Spectrum Disorders (pp. 1–9). Springer.

Ibrahim, K., Eilbott, J. A., Ventola, P., He, G., Pelphrey, K. A., McCarthy, G., & Sukhodolsky, D. G. (2019). Reduced amygdala–prefrontal functional connectivity in children with autism spectrum disorder and co-occurring disruptive behavior. Biological Psychiatry: Cognitive Neuroscience and Neuroimaging, 4(12), 1031– 1041. https://doi.org/10.1016/j.bpsc.2019.06.004

Kelly, C., Martin, R., & Saravanan, V. (2022). The links between fibromyalgia, hypermobility and neurodivergence. touchREVIEWS in RMD, 1(1), 3–4. DOI: https:// doi.org/10.17925/RMD.2022.1.1.3

Lipsker, C., Bölte, S., Hirvikoski, T., Lekander, M., Holmström, L., & Wicksell, R. K. (2018). Prevalence of autism traits and attention-deficit hyperactivity disorder symptoms in a clinical sample of children and adolescents with chronic pain. Journal of Pain Research, 11, 2827–2836. https://doi.org/10.2147/JPR.S177534

Moore, D. J. (2015). Acute pain experience in individuals with autism spectrum disorders: A review. Autism, 19(4), 387–399. https://doi. org/10.1177/1362361314527839

Owens, A. P., Mathias, C. J., & Iodice, V. (2021). Autonomic dysfunction in autism spectrum disorder. Frontiers in Integrative Neuroscience, 15, Article 787037. https://doi.org/10.3389/fnint.2021.787037

Ryan, L., Beer, H., Thomson, E., Philcox, E., & Kelly, C. (2023). Autistic traits correlate with chronic musculoskeletal pain: A self-selected population-based survey. OBM Neurobiology, 7(1), 1–21.