Autistic Blogger Shares the Communication Challenges of Describing Physical Pain

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autism and physical pain

The following blog entry was published in Autism and Expectations: De-Mystifying Autism 

Performing Pain: Autism

“I am not good at communicating my pain. It’s my greatest weakness. I am terrible at asking for help, I am terrible at reaching out to you, and I am worst at this when I’m distracted by physical discomfort.

I have often been told what a “coper” I am. How well I cope with stressful situations, how well I cope with shock and pain. Not because I am coping, but because I communicate these things differently.

What is pain? How do you quantify it? How do you get across just how much or how little you are in?

I am autistic, which means that I have a social communication condition, which means that I do not naturally or intuitively understand or (perhaps more importantly) perform social communication.

Most of the time I can do it all. I have learnt your ways, I may not understand why THIS QUESTION needs THIS ANSWER, but I know enough to say it anyway. I know how to interpret your body language, I know how to mirror you, how to place my intonation, how to gesture, how to place my expressions. I am so well practised and this is such a well-worn skill that there’s no delay at all…

Unless I’m in pain. Pain wipes all those things away. It wipes away my ability to read you, it wipes away my ability to project pained expressions.

Pain destroys my ability to communicate like a non-autistic. Why? Because it takes up so much space.

Imagine you can speak another language quite well – not fluently, you have to think of each word, but you can speak it. Now imagine that you are in pain and you need to communicate that to someone, but can only do it in that language. How difficult would it be to find the words? When you stub your toe, would you be able to think quickly enough to say the right word, or would you automatically respond in your native tongue?

When I am in pain my expressions fall, my lilting, musical intonation becomes low and flat, my face blank, my shoulders stiff. When I am in pain I react in my natural way, in my intuitive way. I become silent and passive and connecting to other people seems like a distant dream.

Words are in my head, but I struggle to get them out. Talking feels strange and alien. All the ways I know to ask for help slip through my fingers and I watch them as they fall.

Pain makes me ‘authentically’ autistic, it strips back my mask and my connections, and it sits me down; silent and alone.

Ask me in those moments to quantify my pain, ask me to give a number from 1-10, and see me get lost in the detail. The big-picture is that you just want to know how bad my pain is – I am not naturally a big-picture thinker. See how I try to work out the “right” answer. I cannot go too high, how high is losing a limb? How high is a heart attack? How high is the biggest pain I can imagine? Best to be conservative. Best to give myself leeway for more pain. Best to say that the greatest pain I have ever experienced is a 6, and this is nearly there, so it’s a 5.

The big-picture is that they want to know how much pain I am in, but I cannot see that without my communication-filter in place. I cannot see beyond the literal and the “right”. If I say 5 and say it without wincing or grimacing, you will not understand. You will leave me with my detail. You will leave me with the second biggest pain I have ever felt, because I cannot speak your language.

Those closest to me know that when I go silent and still (still in all but my hands, I am a tactile stimmer), those are the moments that I am in trouble. They understand my communication.

I worry that one day I will be surrounded by people who do not. People who think that pain looks big and loud and obvious, not small and quiet and far away.

We need to remember that no matter how good I am at appearing to be one of you, I am not. Your language is not my language. Your intuition is not my intuition.

We need to remember that I cannot always communicate in your ways. I cannot always do things for you, sometimes I will need more, sometimes I will be screaming for help in my way. The question is, will you hear me?”

Author: RHI, writer and blogger

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