Nociception: Autistic experiences of pain and how to support our differences

Written by Loren Snow

Content warning: self-harm

Autism is a very individualised thing. Each of us is different, and how we experience sensory input – including pain – stays true to this fact. For instance, I am undersensitive to pain and often don’t notice if I’m injured but I’m also oversensitive to sound and light meaning these can hurt (like pain should!). 

So what is nociception and why is identifying our nociceptive profile helpful? 

Well, pain tells us when something is harmful to our bodies. It tells us to avoid, to run and escape, and when not to stress a healing part of ourselves. So it’s very useful for our survival! Nociception is your nervous system’s process of encoding painful stimuli. When you receive painful stimulus, it is nociception that converts that pain to a molecular signal and characterises that signal to trigger the appropriate defense response. As someone who is undersensitive to it, I can tell you that cycling on broken bones and not realising it is not good, or forgetting you’re injured and jumping and skipping and stressing your healing body is not ideal. 

What does undersensitivity look like? 

If you’re undersensitive to pain you might not notice when you are hurt and cause further injury. You might: 

  • touch burning or freezing things and not realise. 
  • do activities that could harm you (or even seek them out).
  • do things that may hurt others, such as using too much force. 
  • not seek out medical support when injured. 
  • express pain in unconventional ways, such as by experiencing more meltdowns or shutdowns, having lower distress tolerance, being more irritable than usual, or experiencing more physical behaviours (e.g. hitting), more sensory-seeking behaviours (overeating, moving more, etc.) or more sensory-avoiding behaviours. 
  • only express pain when it’s reached a certain threshold. In children this could look like a child who screams when they receive a slight knock or touch, when actually it’s a delayed response to them experiencing greater injury on a different day.

This doesn’t mean someone doesn’t feel pain or that their body isn’t experiencing it. It is to do with how their nervous system processes those painful sensations from the body. The sensations are still processed, but may be expressed differently, or only register when the pain is really acute. 

I have that issue: often pain has to be intense for me to register it but, when I do, I become aware that my body has been through a battle and the pain must be dealt with immediately. This could seem like I’m overreacting or I could suddenly react to an injury from a different day. 

What helps? 

Well besides being conscious of your body and checking for signs of injury after potential harm, there isn’t a lot that helps. There is, however, a lot you can do for those you care about, such as: 

– being aware we may not show pain in the same way as you. 

– reminding us to check for damage. 

– removing things that could cause harm from around us. 

– encouraging us to use protective gear if we’re doing sports. 

What does oversensitivity look like? 

If you’re oversensitive to pain you might find even small things cause a lot of pain. You might have been misdiagnosed with a physical health condition due to daily pain. Or you might be used to people dismissing your pain and suggesting you’re being over the top. 

Being oversensitive is a literal pain and so you might: 

– avoid rough activities and not feel safe in crowds and busy places; this may cause you anxiety 

– avoid all physical contact with others such as hugs or touching due to pain 

– seek out medical support often or not tell others due to being dismissed all your life 

– worry often that you’re ill or that there’s something wrong 

How does nociception change over the lifespan?

Someone’s ability to recognise their own pain changes as they age. In young children, they may have a harder time as they’re still growing and part of growth for Autistic children is learning what’s a sensory sensation, an emotional sensation, and what’s a physical one. 

This can be harder still due to being sensorily overwhelmed by things like school, not understanding their own emotions yet, and that Autistic people sometimes have developmental delays. The silver lining being that in adulthood they may be better at noticing pain and looking after their bodies better.

What are nociception-associated physical health conditions? 

Sadly, being oversensitive to pain may look like various physical health conditions or lead to a diagnosis of one. Autistic people are also more likely to suffer from conditions causing pain such as Ehlers-Danlos syndromes, Irritable Bowel Syndrome, other gastrointestinal disorders, Diabetes, and fibromyalgia. 

What effects does this have on emotions? 

Autistic people can already have a harder time figuring out how they feel. When physical or sensory sensations are put into the mix, they can very easily get confused with emotional sensations. Our sense of pain is also connected to our senses of touch, temperature, and proprioception. So if someone is oversensitive to one of these, it might show up as pain-seeking or -avoiding. 

What helps? 

– ask before touching, as touch could be painful.

– learn about the body to know when it’s damaged.

– be understanding and compassionate about anxiety. 

– don’t dismiss or invalidate their experience of pain.

– learn about co-occurring pain conditions like fibromyalgia, hypermobility, and bowel conditions. 

Is there a connection to self-harming behaviours? 

Might someone be self-harming to get pain as they are undersensitive or experience it pleasurably? I work with lots of Autistic patients in hospital settings that have self-harming behaviours. I also see a lot of parents struggling with this in their children. It’s usually never due to them seeking out pain for pain: it’s usually due to them being overwhelmed and unable to cope and using pain to replace another, more unpleasant, sensation. In these cases, the strategy is really to identify what is causing them distress, such as by figuring out their sensory profile, and by reducing or adding sensory simulation to remove or replace the unpleasant one. Please know it can take time for the self-harming behaviour to stop as it may have become a habit – safe, and familiar. 

Further resources:

Autistic Sensory Pain and the Medical Consequences, (2021), Autistic Science Person

What is a Sensory Diet?, (2019), Loren Snow

What is Nociception? (pain), (2018), Loren Snow

Who am I?

Loren Snow is an Autism consultant with a decade of experience teaching Autistic people, their families, and professionals in England’s National Health Service. Over this time they’ve taught and supported tens of thousands to understand autism and live better lives. They’re Autistic and ADHD themselves so know firsthand the challenges that these individually can bring to someone’s life. They have over 100 videos on their YouTube, some of which explain the above and other senses so please take a look here. You can also find out more about them and the work they do on their personal website.

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