The sense of pain, known as nociception, is one of many senses—far beyond the famous five—that our body uses to detect and respond to the environment[1.]. Pain signals are transmitted through the nervous system to the brain, where they are processed. For us as living organisms, pain is a tangible experience, both physical and subjective, as it engages not only our bodies but also our minds.
Nociceptors are specialised receptors designed specifically to detect pain[2.]. They operate independently from the sensory receptors responsible for touch, sight, smell, hearing, and other senses. For example, light receptors in the eye enable us to visually navigate the world. However, when light becomes too intense, nociceptors in the eye are activated to warn the body of potential harm. This transition highlights the protective role of nociception.
Pain carries an inherent sense of urgency, making it more intense and disruptive compared to other sensory experiences. Its primary purpose is to alert us to danger or injury, prompting immediate action. To ensure we respond, the brain often amplifies the intensity of pain, reinforcing its role as a vital evolutionary survival mechanism.
A striking example of the importance of pain and its intensity comes from the story of Steven and Chris Pete[3.], who have a rare genetic disorder called congenital insensitivity to pain (CIP). This condition prevents them from feeling pain—a phenomenon that may initially seem advantageous but has serious drawbacks. Steven recounts:
“There was one time, at the roller-skating rink. I can't recall all of the details, but I know that I broke my leg. People were pointing at me because my pants were just covered in blood from where the bone came out. After that, I wasn't allowed to roller skate until I was much older.”
The lack of pain awareness plagued their lives, as they could never tell when they had sustained injuries. Their greatest fear was related to not feeling pain from internal injuries, such as internal bleeding or appendicitis. Perhaps even more devastating were the psychological effects of living without pain. Tragically, Chris Pete died by suicide, possibly facing the prospect of losing mobility and grappling with a lack of recognition, by the local authorities, for their condition as a disability.
While some individuals cannot feel pain, others experience pain in the absence of direct injury. Conditions such as phantom limb pain or neuropathic pain demonstrate how the brain can interpret nerve signals as pain even when there is no physical tissue damage. These cases underscore the intricate and subjective nature of pain, reaffirming that much of the experience lies within the mind.
Although pain is a response to physical stimuli, it is also highly subjective and varies greatly from person to person. The intensity, duration, and emotional impact of pain depend on numerous factors, such as an individual’s pain threshold, emotional state, previous experiences, and cultural or societal influences. This subjectivity means that two people with the same physical injury might experience pain in entirely different ways, highlighting the complex interplay between the body and mind in the perception of pain.
How do neurodivergents react to pain?
Having digested many research papers on the relationship between autism and pain it a complex landscape of explanations with paradoxes between hypersensitivity to external stimuli, an underlying autistic trait, and then a hyposensitivity to feeling pain commonly held as the traditionally understanding—often linked with increased levels of self-harm observed in autistic individual[4.] contributing to concept of high pain thresholds.
However, more recent research shows this may oversimplify the issue, as altered expression or communication of pain can mask their actual experience. Quoting from he 2022 paper[5.], "The Current View on the Paradox of Pain in Autism Spectrum Disorders":
On one hand, some studies report a decrease or absence of pain reactivity in daily life mostly based on reports from self or others and clinical observations. On the other hand, various results show equal or greater responsiveness to painful stimuli in experimental conditions. Atypical pain sensations, like allodynia (extreme sensitivity to usual non-painful tactile stimulation causing intensive pain), paradoxical heat sensation (gentle cooling perceived as hot or burning), and hypoesthesia (decreased pain sensitivity) are also reported for ASD. Various hypotheses attempted to explain observed alterations. However, none of these hypothesis by themselves were able to reconcile these apparently contradictory findings.
Perhaps the clearest explanation is that autistic individuals experience more pain-related anxiety, especially in unpredictable scenarios, which then leads to higher reporting of pain sensitivity[6.]. Noting also that autistic individuals are more likely to experience anxiety and depression compared to the general population[7.], and even higher when individuals are diagnosed with both ADHD and autism [8.]
Another autistic trait to consider is interoception, which refers to the perception of internal bodily sensations, such as hunger, thirst, pain, illness, sleepiness, need for bathroom and emotions. Some autistic individuals may have heightened sensitivity to these sensations, leading to difficulties in recognising, misinterpreting or regulating their own internal states. They may exhibit differences in interoceptive sensitivity to pain; experiencing altered pain perception, including differences in pain threshold, pain tolerance, and pain expression. These differences may contribute to difficulties in recognising, communicating and responding to pain-related stimuli.
Through my personal life I can think of two examples that relate to this theory:
Hyposensitivity to a Pain: Austrian Alpine Skiing
In my mid-twenties, I finally had the opportunity to pursue a childhood dream: skiing. As a complete beginner, we booked a stay at a resort tailored for novices, complete with daily lessons. Over the course of the week, I progressed steadily, and by midweek, our instructor decided we were ready for a more challenging slope.
To reach the new slope, we had to traverse a long, single-file ice bridge. Mesmerised by the breathtaking natural beauty of the Alps, I wasn’t paying close attention to the skier in front of me. Suddenly, they panicked and stopped abruptly. To avoid colliding with them, I instinctively grabbed the bridge’s supporting structure. Unfortunately, my hand became lodged, and as my body continued moving forward, I felt a sharp, sudden pain in my hand that brought me to a halt.
Not thinking much of it at the time, I shook it off, and we continued skiing. Later, we stopped at one of the many picturesque restaurants scattered along the slopes. I finally had a chance to examine my hand. It was bruised but still functional. Conveniently surrounded by ice, I applied some liberally while enjoying a hot chocolate.
This incident occurred on a Wednesday. Despite some discomfort, I continued skiing for the remaining four days of our trip. On returning to work the following week, my hand was still hurting, so I decided to visit the on-site medical facilities at the large aerospace manufacturing company where I worked. The nurse took one look at my hand and immediately said, “It’s broken. Go to the hospital.”
It turned out I had fractured the full length of my metacarpal and needed to wear a cast for the next eight weeks. Even today if I think I've injured myself I have to think carefully and try to decode my internal body signals.
Pain Anxiety: Australian City Life
Over ten years ago, I was fortunate to take my family to Sydney as part of a work assignment where I was placed with an airline to provide engineering expertise. Our accommodation was in the beautiful suburb of Coogee Bay on the east coast. Each morning, I had the pleasure of heading toward the airport, while my young family turned toward the cafes, restaurants, and the stunning white-sandy beach, framed by a long curving bay. At this point, my fully autistic family was many years away from diagnosis, but the evidence was already there—particularly in my son, whose obsession with airplanes was undeniable. We spent countless hours on a deserted beach overlooking Sydney Airport, watching A380s land and take off from its two runways extending into Botany Bay.
One weekend, as we walked home from the beach, a passing motorbike backfired, creating a sudden, sharp noise. While we all jumped in reaction, my son’s response was extreme; he panicked and ran directly across a road. Thankfully, he wasn’t injured. Over the following years, it became increasingly apparent that he was terrified of sudden noises, including fireworks, balloons, and even champagne bottles being opened. Not that we drank champagne often, but it became a ritual to inform waiters at restaurants to warn us if one was being opened—even during breakfast!
Seeking help from the NHS, we were referred to Child and Adolescent Mental Health Services (CAHMS). After asking a few basic questions, they concluded it was a phobia known as ligyrophobia[9.]. Of course, looking back now, and with the benefit of a simple Google search, it’s clear this is a very common experience among atypical individuals. It’s perhaps a shame that an autism diagnosis wasn’t pursued during those early years. This example highlights that, while the actual pain levels might have been so different to neurotypicals, it was the anxiety about potential pain that truly stood out.
Conclusion
Pulling together the story example and atypical traits we can summarise that pain perception in neurodivergent individuals is shaped by the interplay of hyposensitivity, anxiety, and interoception. Hyposensitivity can result in delayed recognition of injuries, while anxiety often amplifies the emotional and sensory experience of pain, especially in unpredictable situations. Differences in interoception further complicate the experience, as individuals may misinterpret or struggle to recognise internal bodily signals. This dynamic creates a paradox where pain responses vary widely, emphasising the need for a nuanced approach to care and understanding.
References
Bogdanova OV, Bogdanov VB, Pizano A, Bouvard M, Cazalets JR, Mellen N, Amestoy A. The Current View on the Paradox of Pain in Autism Spectrum Disorders. Front Psychiatry. 2022 Jul 22;13:910824. doi: 10.3389/fpsyt.2022.910824. PMID: 35935443; PMCID: PMC9352888.
Ruggieri V. Autismo, depresión y riesgo de suicidio [Autism, depression and risk of suicide]. Medicina (B Aires). 2020;80 Suppl 2:12-16. Spanish. PMID: 32150706.
Hargitai, L., Livingston, L. A., & Shah, P. (2023). ADHD more strongly linked to anxiety and depression compared to autism – new research. The Conversation.
Failla MD, Gerdes MB, Williams ZJ, Moore DJ, Cascio CJ. Increased pain sensitivity and pain-related anxiety in individuals with autism. Pain Rep. 2020 Nov 16;5(6):e861. doi: 10.1097/PR9.0000000000000861. PMID: 33235944; PMCID: PMC7676593.
Case report: Advances in treating ligyrophobia with third-generation ACT approach
Flavia Marino, Germana Doria,Adele LoPresti, Stefania Gismondo, Chiara Failla, Giovanni Pioggia. Front. Psychiatry, 26 September 2024. Sec. Anxiety and Stress Disorders. Volume 15 - 2024 | https://doi.org/10.3389/fpsyt.2024.1425872
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