Pain

How does autism affect pain? 

Chloe, my daughter, now 18!! hurt her right wrist during a meltdown in school 2 weeks ago. She has been in a lot of pain (but bear in mind, she has a high pain tolerance). It's probably the second time in seen her cry in pain. She took herself to hospital a week after (hospitals have traumatised her so for her to take herself to hospital shows how much pain she must of been in). They x-rayed it and said it's not broken or fractured. 

They didn't say what was wrong but to wear a wrist support and a sling. She has diagnosed herself with a Grade 3 sprain, which I believe she has sprained it. 

Paracetamol and ibuprofen did nothing for her so she is now on ibuprofen mixed codeine, which she says is helping a bit. 

She is wearing the wrist support but the sling tends to stay round her neck, not supporting her wrist. People have signed her sling, hoping it encourages her to wear it. 

But I hear that autistic people experience pain differently so I was hoping people could explain how it effects them? 

Thanks 

Lucy 

  • I've done a fair bit of work with people with drug problems and many are self medicating, the use of cannabis for pain relief and anti-anxiety are common ones. People fear antidepressants and other medicines used for mental health problems, many have tried them and have felt worse not better, so they seek something else. Many people myself included self medicate with cannabis for pain, in my case it because the only pharmacutical that I'm not allergic too is paracetamol, I could have a private prescription, but I can't afford it. I've spoken about it with my GP who gets really frustrated with the restrictions on what he can prescribe and who too. Many people self medicate because they don't want opiates, they're afraid of addiction.

    Unfortunately a lot of people are poorly served by the NHS, if they're poor or have other conditions, or thier black, female, young or old they're not offered the same treatment options of a white middle class person. When and if you do get counselling it can feel like a very alien environment, people fear being judged, there's often a total misunderstanding of what a client from a working class background is talking about and how they express themselves. This leads to mistrust, many black people are afraid of how they'll be judged, many remember the days of white psychiatrists diagnosing schitzophrenia in black men because of the use of the term I and I. I and I, means me and god, or I walk with god, it's not a split personality or something, it's more a cultural reference among rastafarians. Many people of many different faiths walk with thier deity/s, in thier everyday lives, its a very Western Christian thing that you have God in church on a Sunday and not everyday in everything.

    Sorry I've gone a bit off topic here, but I just wanted to give a different perspective of drug use, and it's not abuse, someone once told me I had a drug problem, I said I don't I have a pain problem with no hope of anything legal to help with it.

  • I'm not sure about Autists being more likely to become addicted, some people become addicted

    The link is still being studied but the driving force seems to be related to using the addiction as a coping mechanism for trauma which we are more prone to than neurotypicals.

    There is an interesting article about it here:

    https://www.healthline.com/health/autism/autism-and-addiction

    Research suggests that autistic folks are more likely to experience co-occurring mental health conditions, including substance use disorder.

  • Maybe she has bruising to the bone which is really painful and can take a long time to heal, I was hobbling about for ages after walkiing into a metal wheelbarrow full of building rubble. For things like that I always use arnica, usually Weleda Arnica massage Balm, you can get it on amazon and other places, but its really good for taking down any swelling.

    Has she asked the local pharmacist for the best pain medication available over the counter?

    I'm not sure if Autists feel pain differently but as Iain says they may have problems describing it. I'm not sure about Autists being more likely to become addicted, some people become addicted very quickly and others not, I believe this happens across the population as a whole.

  • We can also experience issues with describing our pain levels.

    Some more info:

    "Autistic people can therefore respond differently to pain. This means they may not be able to describe bodily sensations or be believed when they do. Clinical investigations need to take this into account.

    Autistic people may not be able to provide an accurate assessment of the intensity of pain as a number using a traditional 1 to 10 pain score. They may see pain as a colour, or a picture. Being asked if the pain is a score of 10 – the worst they have experienced – may cause a significant delay in response. The pain may not be like anything they have experienced before. Responding literally could mean the pain is either over or under scored on the traditional scale. An autistic person may not even be able to pinpoint pain due to sensory overload from internal or external stimuli"

    From: https://www.cqc.org.uk/how-you-see-me-matters-perspectives-autistic-people-using-primary-care-services/key-findings#:~:text=Autistic%20people%20may%20not%20be,a%20significant%20delay%20in%20response.

    More info about sensory differences in general here:

    https://www.autism.org.uk/advice-and-guidance/topics/sensory-differences/sensory-differences/all-audiences

  • Hi Lucy

    Along with other sensory differences, autistic people can be either under-sensitive / hyposensitive to pain or over-sensitive / hypersensitive to it. 

    A good explanation of nociception (which is often included under discussions of other interoception-related differences) as it relates to autistic people is offered here:

    https://reframingautism.org.au/nociception-autistic-experiences-of-pain-and-how-to-support-our-differences/

    Also, as with other sensory differences, these differences in sensitivity levels may differ over time for any given individual.

  • I am sorry to hear about your daughter's recent experience. It is tough for both of you.

    Pain for me is quite strange.

    I can alternate between being a total superhero and an absolute wimp.

    I have burned myself cooking and plough on though. I've cut myself accidentally so many times and not noticed. I have been woken by toothache, but not realized it was toothache for an hour.

    But then, when I do finally realize, it can hurt a lot.

    I am sensitive to things that don't seem to bother other people as much.

    I can sometimes not know where a pain actually is in my body.

  • She is wearing the wrist support but the sling tends to stay round her neck, not supporting her wrist.

    As an autist she is probably one for following rules (not universally, but typically) so point out that she is not following medical advice to reduce the strain on her wrist and keep it elevated.

    Every time she complains of the pain, ask if the wrist if up in the sling - if nothing else it will soon stop her complaining.

    Ice packs are also appropriate for sprains if she has swelling.

    The pain meds are something that need a bit of experimenting with but  try to avoid anything with addictive qualities as this can be another weakness for autists.

    Autists do experience pain in much the same way as you I believe but it is how we interprit and express it that is normally different. We can sometimes have difficulty to explain it clearly, but if she can work on identifying where it is and draw comparisons to other experiences to describe what it is like then it should make more sense.