How My Autistic Experience Of Pain Leaves Me Ignored By Doctors

Interoception & Neuronormativity

While there is a lack of research into the issue, many Autistic people report that their experience of pain is markedly different to that of non-Autistic people. This is true of myself as an AuDHD and Schizophrenic person, and is a particular issue for me as a person who experiences chronic pain. In some senses, it should come as no surprise that neurodivergent people have different experiences of pain, our nervous systems and brains operate outside of normative expectations. Despite this, the neuronormativity in healthcare means that this difference is often ignores, creating a backlash for our wellbeing on multiple fronts.

Autistic Pain And Interoception

Interoception is one of the sense that our body has, and yet we are rarely taught of it's existence. It can be defined as follows:

This sense is hard at work all of the time, monitoring your entire body—body parts like your heart, lungs, stomach, bladder, muscles, skin, and even your eyeballs—and collecting information about how these body parts feel. For example, interoception collects information which helps your brain identify how your stomach feels: does it feel empty, full, gassy, nauseous, tingly or something else?

Your brain uses the information about the way your body feels as clues to your current emotion(s): are you hungry, nervous, tired, sick, excited and so forth?

Thus, at the most basic level, interoception can be defined as the sense that allows us to answer the question, “How do I Feel?” in any given moment.

kelly-mahler.com

This internal sense is translated into various things by our brain, including what emotion we are feeling and also if we feel any pain. Williams et al (2022) indicates that there may be a significant difference in Autistic people's abilities to count their heartbeat. This supports community anecdotes that Autistic interoception is altered on such a way that may impact on how they feel sensations, in particular, pain.

For me as an Autistic person, my relationship with pain would appear bizarre to doctors. Seemingly small knocks and scrapes are unbearable for me, and yet more severe pain does not necessarily appear visibly, making people think I am not experiencing severe pain.

To be clear, it is not that I am not on agony, it is that the sensation of certain pains do not register on my brain in a way that significantly impacts how I present. This has created obvious barriers for me in healthcare where doctors have thought I was faking my pain or overstating it. This means that I have been denied care when I'm truth I desperately need help with my pain.

Something that I always note when discussing this topic with other Autistic people is the number of us who describe traumatic birth stories due to this interoceptive difference. Countless people have reached out online to talk about how doctors and midwives doubted they were in labour, or thought they were not very far along, only for it to be discovered that they are imminently giving birth.

This has resulted in Autistic people giving birth without pain relief or experiencing complications. It highlights how the neuronormativity inherent in the healthcare system is placing Autistic people at risk of trauma and misdiagnosis due to differences in their interoceptive sense.

Healthcare And Neuronormativity

The medical world is built on normative assumptions and generalisations. Due to this, there is a great deal of neuronormativity that influences how doctors expect us to embody our pain. We are made to measure our pain via numbered scales from one to ten, visual scales using images of faces, and it is expected that the worse a pain is, the more obvious it will be.

This is problematic for Autistic people who may be in tremendous amounts of pain and yet visibly appear fine in the eyes of medical professionals. This is further complicated for multiply marginalised Autistic people due to the inherent racial and gender bias in healthcare research and perceptions of pain. Further to this, Autistic people are more likely to have co-occurring conditions, and often have conditions that cause chronic pain. As a result, Autistic people may not only be experiencing high levels of pain on a daily basis, it may have become further normalised creating greater obscurity in how doctors perceive our distress.

There is also a great deal of diagnostic overshadowing in healthcare for Autistic people. Many of us report being told that our pain or distress is part of being Autistic, and this is used to deny us access to any further support with the issue. This is deeply concerning as Autistic people already experience markedly higher mortality rates and are more likely to die by suicide. This failure to support us with our pain can literally end our lives.

Autism, Pain, And Hostile Environments

When considering Autistic wellbeing I am always reminded of Dr. Luke Beardon’s simple yet effective explanation called the golden equation:

Autism + Environment = Outcome

Essentially, Autistic people in environments that are negative or even hostile will experience worse outcomes. This obviously highlights the challenge within healthcare where hospitals and doctors offices may be a challenging environment and thus impact on their ability to convey their pain and discomfort effectively. However, there is a further consideration to be added here.

Our bodies are a physical environment that we exist within. Even if the wider world around us is well accommodating, we can not escape a body that is in high levels of pain. Just because an Autistic person doesn’t look like they’re in pain, they are often left to exist within a body that has become a hostile environment by virtue of the constant pain and discomfort they experience. It is inescapable, and can lead to many negative outcomes in our lives.

Closing Thoughts

Autistic people do not necessarily display pain in a way that is expected by professionals. Medical training and practice is heavily influenced by normativity and ableism, and much of what is provided was not created with input from lived Autistic experience. We can not be surprised that Autistic people struggle when so many of us are left with inadequate support for pain and physical health needs, and fundamentally we need a significant change in how healthcare is accessed and practiced. Until such a time that this is done, it is likely that our mortality rate will remain higher than average, and that we will continue to exist without access to the mainstream society we exist within.