When it comes to Autistic people and the experience of pain, there is a lot to be said. Many of us anecdotally report having a mixed profile of hypo- and hypersensitivity to different kinds of pain. Unfortunately, the experience of pain is not one well understood by medical professionals. This results in Autistic people often not receiving adequate care for their pain management needs. It represents an area in which we can be left to suffer because we are not providing a “typical” observational profile that medical professionals have been trained to look for. This can be further complicated by chronic pain, which is again over-represented in Autistic populations.

How do Autistic people experience pain?

Research suggests that Autistic people have a mixed and complex experience of pain (Green & Cage, 2023). This had led to a view that we can be both hypersensitive to pain and hyposensitive. Bogdonova et al (2022) makes the case that our experience of pain is not only mediated by physiological factors, but also social factors. Further research suggests that Autistic people are perceived to experience more pain, which may be related to the infantilisation of our community (Basargekar, 2024).

These studies however are contradicted by the work of Allely (2013) who cites a “widely held belief” that Autistic people are insensitive to pain. They relate this again to peoples perceptions of Autistic pain rather than the persons own experiences. Their research suggests that we are sensitive to pain, but often ignored because our reactions do not tally up with typical markers of pain. This is quite reflective of anecdotal reports within communities with lived experience of these issues.

Itoi et al (2024) suggest that Autistic people have difficulty integrating multiple interoceptive inputs. Interoception is the sense that tells us what is happening in our body. Because pain results in multiple interoceptive experiences, we may have difficulty identifying and articulating their pain, which may account for the contradictory nature of research in this area. Unfortunately, medical professionals fail to appreciate the nuances of our experience of pain, and as such often invalidate our experience. I have spoken about neuronormativity in mental health care, but it happens just as much in physical healthcare settings.

Medical Professionals Perceptions of Pain

Autistic people are often perceived to be hyposensitive to pain. One of the main challenges for this in the medical setting is that we may struggle to communicate/articulate our experience of pain (Kalingel-Levi et al, 2022). In practice this results in many of us not having our pain managed appropriately. There is a lack of research on medical professionals attitudes towards Autistic pain, but we know there is a disparity between our and non-Autistic people’s experiences. In part this could be the result of the double empathy problem (Milton, 2012) hampering communication in professional settings. This has sometimes been referred to as the triple empathy problem (Shaw et al, 2023).

Interestingly, while self-reported experiences indicate hyposensitivity to pain, medical observations suggest hypersensitivity to pain (Moore, 2015). I find this interesting given the anecdotal reports of doctors and nurses referring to Autistic people as “hypochondriacs” and accusing them of exaggerating their pain.

This is particularly problematic for a population that is more likely to experience chronic pain conditions. Professionals having misinformed attitudes towards the outward expression of pain and the internal experience mean that many Autistic people are living with poorly managed pain that seriously impacts upon their quality of life.

Autistic People and Chronic Pain

52% of Autistic youth presented in a study with chronic and widespread pain (Han et al, 2024). Of those youths, 60% were female which may suggest that anecdotal reports that Autistic women face more barriers around pain management have some substance to them. 6% were Trans and gender non-conforming with the rest being male.

Ryan et al (2023) was able to show a predictive relationship between Autistic traits and fibromyalgia. That is to say; having strong Autistic traits predicted an increased risk of fibromyalgia. This again reflects discourse in the community where many experience this pain condition. Research has also found hypermobility spectrum conditions such as Ehlers Danlos Sydrome (EDS) occurring in Autistic children at almost twice the rate it does in controls (Kindgren et al, 2021).

Chronic pain presents a significant complicating factor in the lives of Autistic people. In my own research (currently in peer-review) chronic pain was highly prevalent in substance use populations, and directly predicted depression, and indirectly anxiety. Over representation in substance use and EDS populations may present significant issues with pain management for Autistic chronic pain sufferers.

Autistic Pain Management

There is limited research in this area, but anecdotally, many people with an EDS diagnosis report paradoxical reactions to pain relief and anaesthesia. This obviously presents a problem for Autistic people who are more likely to be diagnosed with EDS. High rates of fibromyalgia also represent an increased need for narcotic pain relief. This is a problem given the high rates of self-medication and addiction in Autistic populations (Weir et al, 2021).

Given recent trends in pain management, with asking for pain relief being positioned as “drug-seeking behaviour”, Autistic people are already at risk of not having access to treatment for their pain. When this is coupled with inconclusive research and misguided professional attitudes, many of us are being left in pain with no apparent end in sight.

We should not forget that chronic pain is a significant factor for increased suicidality (Hooley et al, 2014; Racine, 2018). This is deeply concerning given that 72% of Autistic people met the cut-off score for suicidality in psychiatric populations (Cassidy et al, 2018). I have discussed in my own writing how we are nine times more likely to die by suicide than the general population. Pain management can literally be a matter of life and death.

Gaps in understanding

• Professional understanding of our pain is lacking
  • Professionals are trained on general populations despite many demographics deviating from this generalised presentation. In particular, much research into pain seems to be based on white, cis-gender males, creating disparities for many minority groups.
• Research into Autistic experiences of pain is limited
  • There needs to be much more comprehensive study of our experiences of pain, and a greater amount of that knowledge disseminated into the world of medical practice.
• Research is needed into co-occurring conditions
  • There needs to be greater attention paid to Autistic experiences of chronic pain conditions and how co-occurring conditions may impact upon our relationship with pain management
• Professional attitudes need to change
  • Many professionals are very invalidating of pain experiences outside of a textbook case, this needs to be challenged not just for Autistic people, but all minority groups.

I am particularly concerned that much of the research I did find looked at younger age groups, when it is an aging population that is more likely to have a need for pain management. This seems to be reflective of attitudes and beliefs that autism is a childhood condition. We do not grow out of autism, we are Autistic our whole lives. Autistic people need their pain taken seriously and understood and managed appropriately.

References

Allely, C. S. (2013). Pain sensitivity and observer perception of pain in individuals with autistic spectrum disorder. The Scientific World Journal, 2013(1), 916178.

Basargekar, A. R., Rodi, C. E., Swisher, V. S., & Jaswal, V. K. (2024). Autistic People Are Believed to Feel More Pain than Non-Autistic People. Social Psychological and Personality Science, 0(0)

Bogdanova, O. V., Bogdanov, V. B., Pizano, A., Bouvard, M., Cazalets, J. R., Mellen, N., & Amestoy, A. (2022). The current view on the paradox of pain in autism spectrum disorders. Frontiers in Psychiatry, 13, 910824.

Green, G., & Cage, E. (2023). Exploring the complexities of pain perception in autism spectrum disorder: A comprehensive review. Journal of Pain Research, 16, 123-145.

Han, G. T., Heavner, H. S., Rains, T. R., Hoang, A. H., & Stone, A. L. (2024). Chronic Pain in Autistic Youth: Clinical Prevalence and Reflections on Tailoring Evidence-Based Interventions from an Interdisciplinary Treatment Team. Children, 11(3), 312.

Hooley, J. M., Franklin, J. C., & Nock, M. K. (2014). Chronic pain and suicide: understanding the association. Current pain and headache reports, 18, 1-6.

Itoi, C., Ujiie, Y., Ooishi, Y., & Kashino, M. (2024). The relationship between subjective difficulty in interoceptive processing and accuracy of heartbeat perception in autistic individuals. Discover Mental Health, 4(1), 13.

Kalingel-Levi M., Schreuer N., Granovsky Y., Bar-Shalita T., Weissman-Fogel I., Hoffman T., Gal E. (2022). “When I’m in pain, everything is overwhelming”: Implications of pain in adults with autism on their daily living and participation. Frontiers in Psychology, 13, Article 911756.

Kindgren, E., Quiñones Perez, A., & Knez, R. (2021). Prevalence of ADHD and autism spectrum disorder in children with hypermobility spectrum disorders or hypermobile Ehlers-Danlos syndrome: a retrospective study. Neuropsychiatric disease and treatment, 379-388.

Milton, D. E. (2012). On the ontological status of autism: The ‘double empathy problem’. Disability & society, 27(6), 883-887.

Moore, D. J. (2015). Acute pain experience in individuals with autism spectrum disorders: a review. Autism, 19(4), 387-399.

Racine, M. (2018). Chronic pain and suicide risk: a comprehensive review. Progress in Neuro-Psychopharmacology and Biological Psychiatry, 87, 269-280.

Shaw, S. C., Carravallah, L., Johnson, M., O’Sullivan, J., Chown, N., Neilson, S., & Doherty, M. (2023). Barriers to healthcare and a ‘triple empathy problem’may lead to adverse outcomes for autistic adults: A qualitative study. Autism, 13623613231205629.

Weir, E., Allison, C., & Baron-Cohen, S. (2021). Understanding the substance use of autistic adolescents and adults: a mixed-methods approach. The Lancet Psychiatry, 8(8), 673-685.