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?

Published by Rhi

204 thoughts on “Performing Pain: Autism”

  1. Pingback: Autism, Labour and Birth – Autism and expectations

  2. “The question is, will you hear me?”

    Yes. We all will. Suffering is a thing all of us have in our lives. Pain and pleasure are part of our lives. You know what, you are one of those strongest people, able to express your pain. I am so happy to see your strength. This inspires everyone to fight. 😊

    Just stay STRONG 💪 You are doing great. Love the way you live. Embrace your Imperfections. Its your life. You are the creator of your own destiny 😊
    Take care!

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  4. This is so beautifully written. Thank you for this because it allowed me to delve into your mind and understand how you think. I’ve always written and wondered about the thoughts of other people and how they go about dealing with different things and this was very well written. Thank you for this.

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    1. Thank you. I’m fascinated by the ways that we all think and react to things. Once you can see the motivations, things all fall into place.

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  8. This is beautiful. Quite a few close to me are autistic and they have not been able to communicate so eloquently what is like. Many of these feelings and thoughts sounds not only familiar because I’ve heard others tried to describe these thoughts and feelings, but also because I’ve felt this way myself.

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    1. It is a treasure to be able to read these feelings and these thoughts here, because it is my concern to understand persons whom I value and love. Thank you for your comments, it’s like a trip to another world!

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      1. You are surely absolute right ist must be a treasure to be able to understand others worlds. In fact each person is a different world of feelings, but most of them have similar reaction and feelings, but on the other side some not.
        I really look up to all who can performe communication as good as you. And by the way I think that pain destroys nearly everybodies ability to communitcate.
        I cannot communicate with pain either.
        But I would definetely not think about a common scale to describe my pain, because pain is anyway felt different from person to person.
        I would say 5 if it is still o.k. for me to bear. 8 if it is hardly to bear and 10 if I cannot !

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  9. I am the exact same. I have financial issues up the wazoo and yet I find asking for help almost an impossible thing 😦 no matter what you will be ok x just be right with yourself

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    2. I’m so sorry that this is what you’ve been shown. We should all feel safe to express ourselves in ways that suit us (so long as we don’t hurt others in the process). I know the way many men have been socialised (don’t cry, don’t show pain, don’t be “weak”) is so damaging to them and everyone around them. It’s the cause of so much extra pain and misery.

      I very much wish for a world where everyone is free to express themselves in their own ways without judgement 💐

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        1. Crying is not weakness, tears’ chemical composition are different when one cries for different reasons. The chemicals that disrupt our systems can be flushed out of our bodies with our tears. Pretty necessary for life. Just as you say, ‘Crying can rescue.’ You are *so right.*

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          1. that is very interesting, thank you M.T.Noah. I did not know that. But I just feel it. It does not have to feel much better after crying, but it’s different, some pressure is gone and the change is at least a sign that it keeps going. Even if it seems so endless!

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  12. Pingback: Festive Autism – Autism and expectations

  13. Is the habit of “passing” what prevents us from expressing our pain rather than being wired to have a blank expression during pain or while expressing emotions?

    I read that autistic people express emotions differently too like through stimming and abnormal, exaggerated facial expressions, and possibly a different tone of voice.

    I remember being followed by an unleashed dog and possibly too quietly saying “get out”. There was a lack of time to get the right words out. I also felt that if I were to shout, I had to put effort into it rather than emotions automating it. Maybe my emotions took too long to kick in.

    One of my co-workers said that I didn’t look tired even after 5 hours of sleep maybe because of the lack of eyelid droopiness. An interesting topic is how autistic people show that they’re tired. Do they show it through worsening autism symptoms instead? It would be interesting to know whether family members, friends, or co-workers are more likely encourage proper sleep if we display tiredness more clearly. Lack of sleep is quite common in autistic people. If autistic people are better rested, they can perform even better, removing one more obstacle for employment.

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    1. Interesting thoughts! The habit of passing definitely can get in the way. I have been to a doctor and when they’ve asked how I am, I’ve started responding in “social greeting” mode, and said, “I’m very well, how are you?” Instead of telling them why I was there and that I wasn’t well at all. All my learnt responses go onto automatic.

      I definitely find it harder to mask when I am tired. I’m not a good sleeper, and it makes a huge difference to how much socialising and coping with sensory issues I can do. Sleep is so important to me.

      Thank you for your thoughtful comment 💐

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  16. Pingback: Is it Difficult for Autistic People to Describe their Challenges? – hanlinsblog

    1. Thank you for your comment, this was the occasion for me to read this wonderful article once again in the new year. I think I should read it very often to internalize it and not to forget it.

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  20. Thank you so much for this post and allowing us to better understand a little bit more into the world of Autism. I applaud your bravery and confidence. Thank you again for a better understanding.

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  22. You are good at describing these things. I wish I was that articulate where writing is concerned. Quite often I laugh when I’m in pain, which confuses people, naturally, and cry when I find something funny. Another time I was at my martial arts group and the instructor was demonstrating a self-defence move on me for the others. I was bent over almost double due to the arm lock he had on me and he was talking to the others about it, and then he just stopped and looked at me.
    Him: “Doesn’t it hurt?”
    Me: “Yes, it does actually.”
    Him: “Why didn’t you tell me?”
    Me: “I didn’t know you wanted me to.”
    Without clear instruction it’s hard to know what people want a lot of the time.

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    1. That all sounds very familiar. Thank you, I just try to describe my own experience as clearly as possible. It’s so lovely when people connect to that 💐

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  23. Rhi. I lost the ability to fake humaning in 2011. Somebody said it was ‘Aspie Burnout’ or something. All I know is i communicate best with a keyboard and a screen between me and all others with my headphones on blaring something that is less overwhelming than the million inputs from my housemates. The whole pain thing. You write it so well. I can only speak foreign (not English) languages that I’ve studied hard when I’m completely unconscious I’m doing it. When I hurt, it’s the same with English (my native one). Thank you so much for saying what I’ve never been able to get out.

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    1. You are so very welcome. I had a similar burnout about seven years ago. Sadly I picked my mask up again, but I’m learning it put it down more and more. It’s exhausting fake-humaning.

      Our ways of communicating are just as valid. Thank you so much for your comment.

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      1. oh, I´m so sorry for you M.T. Noah! And I´m glad that Rhi just told us about his progress! Of course is the communication online valid. If communication outside it too stressful, you have to avoid as a start and wait until you are ready. But it would be a pity not to have you outside someday!

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    1. You are so very welcome. Many people (autistic or not) do react to pain differently. It’s so important that the people around us understand.

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  25. Pingback: Pain – Highland Rising

  27. My son who is 22 months just got diagnosed. We suspected it for a while now so anything I could get my hands on I was reading. I’ve come to the relation no matter how much I accept it I will never fully understand what he goes through Bc I can not experience it and he is none verbal as of right now and can not tell me. The age difference is immense between the two of you but it’s so nice to be able to understand even one tenth of what could possibly be going on in his mind. That truly means the world to be and so I genuinely thank you.

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    1. What a lovely message. Thank you. From the other side of it, I know I can never understand the meaning other people get from some types of social interactions. We just have to accept that our experiences are different. Equally real, but different. It is so lovely that you are working so hard to understand your son. It is a wonderful thing to do for anyone. Having people around who are safe to be yourself with, is so valuable. Wishing you all the best 💐

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  38. I am the only person I know, that feels. I would like to be helped in articulating, but the message I’m given from those around me is not only doesn’t “anyone” have anything to articulate, they haven’t any observations or ideas about anything (let alone “feelings”). I’m trying to get it across to them that they are the ones that are out of line. Because knowing, and saying, are gifts. Really, the world needs their gift as well, but they refuse to know it. (My semi-official semi-diagnosis came when I was 42.)

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