Expressing pain autistically

Suppose you were undergoing a medical procedure and you were aware the medic was doing something that was causing you a serious problem. Suppose you’d tried to draw their attention to what it was but they weren’t listening because you didn’t express yourself in the way they expected? Sadly that’s not an uncommon experience for autistic people. The supposedly universal human communication of things going badly wrong is to scream – but for an autistic person their response may be to shut down, or to go hyper-reasonable, bland and logical. You can just imagine how a doctor might be a bit wrong-footed. If the patient said: “I’m really sorry but the anaesthetic doesn’t seem to be working and I can feel you putting the stiches in – would you mind using some more local anaesthetic?” the doctor would most likely imagine they weren’t really in pain. If you can speak calmly like that, you’re not really in distress, they would think. Sadly, that doesn’t work if you’re autistic.

Standing up for yourself

Supposing something has gone wrong at work – and things go wrong from time to time in the best regulated workplaces. Suppose one or more of your colleagues are a bit biased against you because you’re autistic. And let’s be frank, it happens. Possibly they regard your autistic traits as annoyances or fundamentally believe (even if they don’t say it) that you should “pull yourself together” and be “normal”. Perhaps your reasonable adjustments are all very well in theory but in practice they get forgotten or not done or somehow just don’t feel very important.

The things I’ve said might happen certainly do happen – everywhere in society. No one workplace or culture or place or group is particularly culpable for doing it. It’s just a fact that our society is still getting used to autism, doesn’t understand it very well, doesn’t deal well with things it can’t actually see (such as invisible disabilities); autism is not yet “meh”. You, the autistic person, want to change things for yourself and those that come after, but that means standing up for yourself. And the ways of doing that can be really really difficult.

Getting your needs met

It’s difficult enough to get the world to listen if you’re autistic and express your physical pain in a way neurotypical wouldn’t expect. But if you’re suffering mental, emotional or spiritual pain as a result of someone else’s actions, it’s particularly hard to speak up and be heard. Complaining can lead to blow back as the person complained against defends themselves. If you’re autistic, you may be quite used to things seeming to be your fault, and prone to mis-identifying the underlying issue because perhaps you’re not great at identifying sensations. So it’s quite likely that the prospect of expressing your distress is just going to cause more distress and so you don’t.

Do I need to scream?

Expressing physical pain feels to me like just one more communication that has to be managed. As a child if I injured myself I instinctively hid the injury because I could cope with my own sensations or other peoples’ reactions, not both. Then I learned that if you conceal an injury you tend to get found out and then people react even more, putting even more strain on your abilities to meet social norms. So a socially acceptable response to (say) falling over in the playground was the best way to minimise attention – you had to endure a certain amount of people insisting on communicating but that was the least you could get away with. As an adult, if I need medical help, I have to work out a way to express myself that will be heard rather than as feels natural to me, which is a burden I could do without.

Expressing pain

Suppose you were undergoing a medical procedure and you were aware the medic was doing something that was causing you a serious problem. Suppose you’d tried to draw their attention to what it was but they weren’t listening because you didn’t express yourself in the way they expected? Sadly that’s not an uncommon experience for autistic people. The supposedly universal human communication of things going badly wrong is to scream – but for an autistic person their response may be to shut down, or to go hyper-reasonable, bland and logical. You can just imagine how a doctor might be a bit wrong-footed. If the patient said: “I’m really sorry but the anaesthetic doesn’t seem to be working and I can feel you putting the stiches in – would you mind using some more local anaesthetic?” the doctor would most likely imagine they weren’t really in pain. If you can speak calmly like that, you’re not really in distress, they would think. Sadly, that doesn’t work if you’re autistic.

Why don’t you just speak up?

I’m not an HR expert by any manner of means (as this blog probably makes only too clear!) but I have used enough HR policies to know that the first part of “proper process” in solving a problem is to attempt an informal resolution. Which probably means talking to the person who is causing you problems. That’s absolutely sensible and proportionate – it gives everyone the chance to deescalate and chat through the issue, sort things out, and avoid having to use some complex formal process. Everyone’s a winner. Except autistics. Because informal resolution means having to have that face to face conversation – which you fear will go wrong and you will end up in tears or being blunt and rude – that you were trying to avoid.

Standing up for yourself

Supposing something has gone wrong at work – and things go wrong from time to time in the best regulated workplaces. Suppose one or more of your colleagues are a bit biased against you because you’re autistic. And let’s be frank, it happens. Possibly they regard your autistic traits as annoyances or fundamentally believe (even if they don’t say it) that you should “pull yourself together” and be “normal”. Perhaps your reasonable adjustments are all very well in theory but in practice they get forgotten or not done or somehow just don’t feel very important.

The things I’ve said might happen certainly do happen – everywhere in society. No one workplace or culture or place or group is particularly culpable for doing it. It’s just a fact that our society is still getting used to autism, doesn’t understand it very well, doesn’t deal well with things it can’t actually see (such as invisible disabilities); autism is not yet “meh”. You, the autistic person, want to change things for yourself and those that come after, but that means standing up for yourself. And the ways of doing that can be really really difficult.

A complaint about complaining…

I struggle through social situations every day of my life, trying to get the words right and avoid embarrassment. Complaining is an inherently embarrassing and risky thing to do – the person you’re complaining to/about may reject your criticism and say you’re mistaken. That can feel like having the rug pulled from under you. If you’re autistic, the moment of being questioned is likely to lead to a lurch in your sense of the world while you quickly reassess whether in fact you’ve been wrong about everything and are being stupid. (Again.) Because if what you said is true – why is someone arguing? If they’re arguing, then what you said probably wasn’t true. So you must be mistaken. Your unreliable autistic perceptions seem to have let you down again. You’re always getting things wrong – probably what you should do is slink away into a corner and try not to embarrass yourself and everyone else any further.

Complaining…

What do you do if you’re bullied? Do you stand up for yourself or run and hide? It’s a dilemma for children in the school playground but also potentially for adults at work. To dial that down a bit, what do you do if you feel you’re being treated unfairly – do you question it or put up with it? Are you, in fact, the person who sends their soup back in a restaurant because it has a hair (waiter’s thumb/mouse) in it or the person who says “everything’s great” with a fixed grin when it isn’t? If you’re autistic I’m going to guess it’s the second of those.