Autism and Pain

We had a lot of illness in the house recently.  For a fortnight Bear, Wolf and I were all pretty ill but Tyger seemed to dodge it until a week or so later.

When Tyger’s ill he’s…unbearable slightly hard work.  Bear – through his bout – spent his days lying on the sofa, drifting in and out of sleep and watching hours of Octonauts (want to know something about marine animals?  I’m your woman!).  Tyger spent the time he was sick complaining.  The entire time.  He complained about being hot, about being cold, about being tired, about not being able to sleep, about not going to school, about the fact he’d have to go back to school, about being thirsty, about us trying to get him to drink, about being hungry, about not wanting food…I think you get the idea.

One thing he complained about was his ear being sore.  Ear infections are pretty common in kids so it’s always something I’m aware of, especially since Tyger had one as a baby.  However, Bear, Wolf and I had just recovered from an illness seemingly the same as Tyger’s where one of the symptoms was blocked sinuses/ears so that seemed a likely explanation.

I actually called my mum to ask her advice on whether to take him to the GP.  You see, it can be nigh on impossible to figure out the severity of Tyger’s pain or discomfort.  This is not uncommon in autistic people.

Sometimes Tyger completely under-reacts to pain.  I remember an incident when he was only about three: he tripped and scraped his arm pretty badly on my parents’ drive but barely seemed to notice.  He used to pick at his toenails until they bled…and then pick at them some more.

Other times, he acts like the world is ending because he has a minuscule scratch or a slightly blocked nose.  He earnestly and bravely told me he thought he’d broken his leg and had to go to hospital after obtaining a small graze on his knee.  He has screamed and cried for half an hour or more over the most minor of scratches or bumps.

It makes judging the seriousness of any given injury or ailment rather difficult.  I have no sort of base line to refer to and his reactions are so variable.

This is a problem for many autistic people.  When all the pain responses a doctor will look for are ‘wrong’ or ‘inappropriate’, trying to get an accurate diagnosis and effective treatment is pretty hit or miss.

Perhaps you’re thinking, ‘Just tell the doctor the patient is autistic and they’ll understand about the pain responses because they’re a doctor.’  Or maybe you weren’t thinking that but it really helps my narrative here if we pretend you were so go with it, okay?

Well, Reader, I wish you were right.  I’ve explained to doctors examining Tyger that he’s autistic so his pain responses won’t be what they expect.  Often this elicits no response at all and if they do respond it’s to look at me like I’ve just told them I had a nice Chinese take-away last night (or something equally irrelevant) before they repeat their question to Tyger about how much pain he’s experiencing.

I think there are two reasons those of us on the spectrum have an ‘inappropriate pain response’.

Firstly, autistic people have a lot of weird sensory stuff going on.  That’s hardly a secret.  Even people who know virtually nothing about autism tend to know, for instance, some autistic people have problems with loud noises.  Sounds can be intensified or the ability to filter out background noise is better or worse than in neurotypical people.  Certain lighting can feel unbearably bright or uncomfortably dim or saturated.

When it comes to touch, many people on the spectrum have problems with tags or seams in clothing.  Some hate the sensation of light touch but are comforted by deep pressure.  It’s really not surprising to think someone with autism might feel pain more or less intensely…or simply differently.

Secondly, even aside from any differences in how pain is experienced, there’s the problem of reacting to and communicating that pain.  Difficulties with communication are not only common in autistic people but actually part of the diagnostic criteria (social communication is included in the ‘triad of impairments’, after all).

There are socially accepted ways of reacting to certain kinds of pain and communicating it to others from facial expressions to tone of voice, language used, tears, gestures.  Think about what assumptions you’d make about the kind and intensity of pain someone was in if they were writhing around clutching their stomach compared to them wincing slightly and rubbing their head.

Now, think about someone on the spectrum who might have a shut down when confronted with the bright lights of a hospital.  Would you be able to tell much about their pain if they don’t seem to be reacting to it and give monosyllabic answers when asked about it?  Would you assume the pain can’t be that bad?  What about if they sobbed uncontrollably?  You might assume that’s a pain response when it’s actually their social anxiety over having to talk to a doctor.

I decided not to take Tyger to the GP.  He only seemed to complain about his ear occasionally and his reaction was very similar to the one he has to a blocked nose.

Then the glands by his neck were suddenly swollen and one ear started leaking a load of fluid.

Yeah, he had an ear infection.

He had a course of antibiotics and is fine now but I felt like the worst mum on the planet for dismissing his pain like that.

Yet I’ll have exactly the same problem again the next time he’s hurting.

 

 

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6 Comments


  1. I feel your pain. (see what I did there?)
    Firstly, you are not the worst mum on the planet! A lot of what we do with our kids is guesswork at the best of times. Add autism into the mix and it ramps things up even more. I have 10 years as a nurse under my belt, and I spent most of the time dealing with stuff in confidence and then second guessing myself over and over again.

    Thankfully, as they grow and mature, and their ability to communicate improves, it will get a little easier. It also helps to have a great bank of information online. I find http://www.nhs.uk/Conditions really useful because there can be other symptoms other than pain that help when you need to make a decision.

    Besides, if your Mum said forget it, then she’s really to blame, not you! lol

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  2. Poor Tyger, glad to hear he’s (and the rest of you!) on the mend.

    I find communicating and experiencing pain really interesting as someone who has chronic pain. What I would rate as 1/10 would easily be at least a 5/10 for someone “normal”.

    And for years I struggled to get a diagnosis because of that. People assume if you’re in huge amounts of pain you’ll be screaming and crying and rolling around when sometimes you just shut down because it’s too much. Other times someone may accidentally bump me and I feel like I’ve been hit by a car. It fluctuates so much.

    Not for the same reasons as someone on the spectrum, but definitely something I can understand. With the added communication difficulties it must be hellish.

    The cubs are very lucky to have such switched on parents like you and Wolf to advocate for them. xx

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  3. I had no idea about pain and autism. Its hard enough with little ones when they can’t tell us what’s wrong. Thanks for joining us for #marvmondays

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  4. My son is the same. Sometimes he’ll fall over and it’s like he hasn’t felt a thing or he will even laugh and some times he will literally cry for up to two hours. He’s a nightmare when ill too and just cries and cries, I guess because he just doesn’t know how to deal with it. My son is currently being assessed for autism so I understand what you are saying in this post. The problem is even GP’s aren’t trained to deal with kids on the spectrum and as you know no two kids on the spectrum are the same. It’s especially difficult when they can’t or won’t tell you what’s wrong.

    #marvmondays

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  5. My boy is very much like this. I think he actually doesn’t feel things to the same level that are related to his skin. He doesn’t notice heat and cold and feeling wet either. It’s so frustrating when doctors are dismissive in this way – though tbf one told me I was overreacting to pain once because I told him it was worse than childbirth. He sent me away with paracetamol. A few hours later I was rushed to hospital with severe quinsy and had to have an abscess in my throat drained! Thanks so much for joining in with #SpectrumSunday. We hope you come back next time.

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