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. Oh wow! I’ve never thought about it like this but when I was suffering from an ectopic pregnancy that was causing internal bleeding I scored the pain as a 6. i figured there must be way worse pain, like burning to death or having a limb sawn off without pain relief (I literally thought about those things to evaluate my pain) and my previous births weren’t that bad so they were 5’s. This was the worst pain I had ever experienced and I was vomiting, my mother later told me I had my fist in my mouth to stop me from screaming in front of my kids. My approach led to my investigations and treatment being delayed, as my pain was deemed to be manageable. I wish I could just give a score to indicate how bad I feel but I’ve always said we need a better way to measure. Maybe it’s just us who need a different method?

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    1. Thank you for sharing your experience. That is absolutely the issue! If we knew for sure that what they were really asking is “How much pain are you in, is it lots?” Then we know to answer the question differently, but you have to know that first.

      The problem with us learning another way, is that pain can mean we can’t use the things we have learned. So we need others to know how we respond too.

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  2. Hello Rhi!
    I found your blog by chance and have been a silent reader since then. But today I thought that I have to comment and say “Thank you!” for all your time and work you put into writing your blog entries explaining how we tick and how we experience daily life and its challenges. I wish, there would be a blog written in my native language that could explain the issues as well, as you do. Not only that I have translated the one or other article in your blog to explain things to people in my surrounding and found it very helpful in this regard, I also found and find so much comfort in reading what you write because it shows me, I am not the only one experience things in this way. I am from Germany and here is Autism an almost non-existing issue in the public. In fact the terms “autist” or “autistic” or “autism” ony appears when someone did a mass shouting and later the press assumes he might have been “an autist”, or if people want to say something mean, they accuse others of being “autistic” (including the wrong conceptions/ideas they have about autism and autists). That given, one can feel very isolated and alone as an Autist, at least if one is in the area of the spectrum where I find myself. So it does good to me, to read your blog entries, because I am reminded that I am not the only one with this condition and also that I am not a complete alien. Not sure, if I am able to communicate my points here.

    I have no idea, how old you are. But what I sometimes wonder e.g. is the following: as one gets older, strength fades too. To “perform” as “one of the others” (“normal” humans) costs a lot of strength, even though we might have learned it quite well. So what happens, when age slowly starts to hit in? When ones strength becomes less and one isn’t able anymore to perform perfectly and to seem “like them”? I fear it might isolate one more an more. I wonder if others who are slowly reaching the realms of age or just run out of the necessary strength for the performance, worry about this too and how they deal with these questions and issues. Not sure, if this is the right place to lay down these questions. I am not expecting you to know the answer, especially not if you are still far away from this stage of life. I wouldn’t say I have reached the age where one would say “I am old” but already I realize that the strength is starting to fade and it makes me really afraid of age (not to speak about all the issues like getting old and sick and maybe all who once knew me (and could read me as an autist) might be already dead and no longer around.

    Anyway, the main reason to comment here today was to say a heartfelt “thank you!”

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    1. Bitte! Und danke! Alles klar 😊 that’s about the limits of my Deutsch. So entschuldigen Sie mich for the rest of this.

      Ageing is definitely something I worry about. In my 20s I had energy to spare for interactions and working things out. In my 30s I’ve noticed that I take longer to recover, and have less to spare. Soon I will see what my 40s brings. It’s something that really hasn’t been studied enough – how autism affects you as you age.

      In some ways I am more comfortable now. I don’t feel the same need to “please” everyone, as I did when I was younger. I hope as I get older I will feel more and more able to state what I need, and say no to people. But I do worry about isolation too.

      It’s definitely something that needs more discussion. I know autism is treated differently in different countries, some are better than others. There is still a lot of fear and misunderstanding about what it means.

      I am very glad you found my blog and have enjoyed my words.

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      1. Hah! You are quite fluently in German, I see! 🙂

        I am really looking forward to see more of this kind of discussion in the future (I hope this discussion will happen!) as more and more of us enter into this stage of life. Before it never occured to me that it might become more of a problem the older I get but slowly it dawned to me and now … I guess we will have to wait and see what will happen.

        In regard to the issue of your blog entry, I found myself in your writing at several points. Last year I almost died, because I wasn’t able to reach out and communicate when I was sick and in pain. I am still in the process of figuring out what happened and what I can do to avoid such a terrible situation in the future. Of course I hope I won’t find myself in such a situation again, but I guess this is dream-wishing. Reality is, it might and can happen again at any time which is frightening.

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        1. Absolutely.

          How terrifying for you! We do all need a plan for what to do in an emergency. Maybe a card with something written on it, or some other way to let people know.

          I haven’t used my Deutsch in 20 years, so it is truly awful. I loved learning German, it has lots of similarities to Welsh, and such a logical language (unlike English which makes no sense at all!). Wunderbar.

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    2. Hi Lisa, I am an older Aspie/Autie of 57. I also wonder about these things. I’ve just been over to your blog but a follow button didn’t appear. I tried the link at the top of your page but that just brought up lots of strange computer language. So I went to wordpress search but couldn’t get a link there either. It is worrying as we get older. Everything slows down and I find I becoming more reclusive.

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      1. Hi Tracey!

        Thank you very much for your kind reply. I am sorry about the “follow button”. I think, I don’t have such a feature at my blog at all. There is only a rss-feed. You couldn’t find me at wordpress directly, because my blog is self-hosted on my private webspace, not on the wordpress platform. But probably you wouldn’t have much fun with my Blog anyway, because it is written entirely in German.

        Thanks for sharing about your feelings in regard to aging. I notice I am becoming more reclusive too. I think in my case there are several reasons why this is. One is the autism and less strength, the other is that to me at seems that those around me, who are also aging also have less strength and thus become less willing to deal with someone (no matter whom) who isn’t “easy” (means uncomplicated) to deal with (not that I am a pain to deal with) and I live in a very rural aera with not many people. So it is difficult to make contacts with people at all. There might be other reasons too which add to my worrying now and then.

        Kind regards

        Liisa

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    3. I’m 41 now and I know my level of coping is going down, however that may be due to other diagnoses, not the autism. I do find I care much less about other people’s unwanted opinions than I used to. I’ve also found I am becoming much more selective in the people I allow into my life which is really a good thing. Isolation is in large part a choice. There are biochemical issues that can affect it (social anxiety, etc), but overall we each make our own choices about how to spend our time and where to spend it. If you are doing things you enjoy (and they don’t involve staying at home all the time – an issue I have), it is not that hard to stay engaged on some level with other people. Even if you do stay at home there are people all over the internet to talk with. Unless you actively choose to wall yourself off from humanity it has a very virus-like way of involving itself in your life.

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      2. Hi wyldkatt!

        Thank you too for replying! I find it surprisingly comforting to read your replies and just to note that there are some others out there who experience similar stuff in this regard. I have rarely read something on the internet from “older” Autists, either it is kids or youth or young adults but rarely older ones. At least I didn’t find much of it. Isolation can be in large part of choice but not always. Sometimes pieces of the puzzle just fall unhappily and circumstances make things more difficult. But you are right, one has to look closely and make decisions where it is possible.

        Regards

        Liisa

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    4. Heyy Rhi, Lisa and everyone else who’s reading this and taking place here. My name is Lisa too and I’m from Germany as well…but that’s not important!

      I found the post really interesting and when I finished it I was really interested in reading the comments on it. I didn’t expect something negative and I think there weren’t! 🙂
      Like you said before, autism doesn’t seem like an big issue in Germany and I agree. I mean I know that there are some teenager who make fun of it and use “that’s an autistic child, bro” as an insult but I never met anyone with autism. From what I know of course. Because of the upper things I never really thought about autism in general.
      But reading the title I was interested and you explaining that you learned how to act like you are like “us” is really impressive I’d say! I liked the fact that you gave examples. I’m not sure if I understood without because my englisch isn’t the best, as you can see.

      I wanted to say something about one part in your blogpost. The part where you were talking about the fact that you’re afraid to be around people who won’t understand you. I don’t think that you have to be afraid! Every person is tolerant in some kind of way and if you can explain it to them and they get to know you further you’ll be fine!

      I just joined this, so I’ll try to be active a little bit more!
      Thanks for explaining this on here and making the topic really interesting!

      Hope I can check out more of your posts 🙂

      -Lisa 😉

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      1. Thank you for your lovely comment!

        Your English is far better than my Deutsch (but I always have Walisisch 😊).

        You’re right that people are mostly kind. I truly believe that even when people get things wrong, they are usually doing their best. I think when I said I was afraid, I was more afraid that I wouldn’t be able to communicate what I needed in those times.

        I am so lucky that my family understand me and could “translate” in those situations, but if they weren’t around, would I be able to explain? Would I be able to talk?

        Really glad that you have found me. It’s great to have people reading about autism who didn’t know much before! Willkommen!

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        1. Yes, I think you would be able to! Simply because you’d have to and you have to learn it one day. That’s the next step to be an really impressive person. You learned all that so you will learn that too and be able to be how you want to be! 😉
          Thank you! I have my problems here but…I will learn…hopefully:)

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        2. I do not know you, but I´m sure you could explain without your family. You always have to think that the others are also only human and have their problems in communicating aswell…So if there are problems, it is not your fault it´s 50% the other person who could understand if she/ he could think different…; )

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          1. The problem is, how do I explain if I cannot speak? When I have autistic overload I cannot speak. The words do not come. I am quiet and still. All communication is gone. My mind will not find the words. I cannot point. I cannot gesture. I cannot look at someone.

            It’s a lovely idea that I could “force myself to”, but it is not the reality for many autistic people.

            I know this can be a really difficult thing to understand when I am able to speak and write usually. But language and words are not always there as an option, even though they are usually there for me.

            This is why having people who understand me around can be so important.

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            1. OK. then it is not possible to communicate during this phase? And how long does such a phase last?
              Or is another communication possible. For example you can write wonderful … you can also drink a tea with your opposite, speak nothing and write down things that you want to communicate .. or paint, or whatever you have for a gift.
              It is much more about getting to know people and make the stranger to something habitual and to make a friend.
              Of course, these should be people you like, otherwise it will not help, because with unpleasant people, nobody needs and wants to be together …,)

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      2. thank you for your comment. I´m also german,and I felt the same like you. i think germans in gererell are very opened for people who are different. They bother also a lot with handicapped people. My brother in law has Down’s syndrome, and I want to assert, that he is the person most integrated in the city.
        I never had contact with an autistic person but maybe I just did not notice. But I think the same. If you have the chance to know this person better you will step by step love this person how he/ she is.

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  3. The worst pain I have been in was after my liver transplant when I was moved from Itensive Care to High Dependency. Unfortunately the anaesthetist wasn’t around to sign my care across so the HDU doctors were unable to give me pain meds. I lay on the bed as still as possible, breathing as shallow as possible and the only sign of the pain I was in were the occasional tears spilling from my eyes. Was I coping? Not on the inside but outwardly I guess it might have seemed so. I am told I have a high pain threshold but the reality is that I just don’t show it. I hadn’t really thought about it as an autistic response before.

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    1. Yes, this sounds familiar. I also have a “high pain threshold” but you’re quite right that they just mean “doesn’t react to pain”.

      That sounds awful. I’m so sorry you went through that without appropriate medication 💐

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  4. So well-explained. I get “authentically” autistic when I am in pain, sleep deprived, or mentally exhausted. It’s like I know I’m doing things “wrong” but suddenly I don’t know how to make myself understood and hilarious (not really) misunderstandings ensue. Unfortunately, I have rare sensory nerve tumors which cause pain so extreme there is no way I can express it to the medical profession. Fun! I’m a big fan of yours Rhi! Keep writing.

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    1. Thank you so much. Sensory nerve tumours sound horrendous, we need some way to get that message across. Maybe a card with something written on to just hand to people?

      Really appreciate you sharing your experience with me 💐

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  5. This made me cry. They were “thank gods someone understands” tears. I was diagnosed ASD in the spring and then with fibromyalgia in the summer this year. I was pretty sure I was autistic for years, but the fibro diagnosis was a blow and coming to terms with the pain and learning to ask for help has been a struggle. Being very limited with the meds I can use to manage it doesn’t help either. I know people don’t see the pain I’m in most of the time. It’s just pain. I can live with it, but boy does it take it energy that I’d rather send elsewhere. I’ve caught myself forgetting the cues in basic scripts or blindly following them when I probably shouldn’t, like “How are you doing?” with the correct answer being “Fine.” I’ll freeze and the wheels spin before I can answer. Trying to make contingencies in the script is hard and takes practicing it. I’m trying to add in, “Today is a hard day,” because no one but doctors and very close people need to know how bad the pain is, but not giving any indication leads to expectations that I can’t fulfill.

    Oh and because of you I restarted my blog ( https://thewyldlife.blogspot.com ), but I do need to actively write in it more.

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    1. I’m so glad you’ve re-started writing! This is great news.

      That’s it exactly, all the effort that has to go into pain management takes over everything else and the simplest of things become impossible. It’s hard for people to understand that pain and coping all change day by day.

      The pain is one thing, the exhaustion is another. Thank you so much for sharing your story 💐

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  6. I always tend to ignore people who scream and shout when they hurt themselves. I always think they are over reacting! People are always telling me I have a high pain threshold. It took me a while to realise they associate pain with noise! Thanks Rhi great writing as always.
    P.s I hope your not in pain

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    1. Thank you! Yes, I’ve always been confused by lots of noise, particularly prolonged, when someone is in pain.

      And thank you for your hopes 😊 Ridiculously joints mean pain is always only a step away, but currently doing well.

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  7. Reblogged this on yarn and pencil and commented:
    I always thought I had a low pain threshold until I had an accident just over a year ago when the nurse in A&E told me I had a high pain threshold! Anyhow, the shock of hurting myself causes me to become mute until I’m able to pull myself together. The following post explains it so well 🙂

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  9. Yes, I’m familiar with others assuming I have a high pain threshold. one that comes to mind is when I contracted polio in the 1950s. The pain before the paralysis occurred in my leg was excruciating, but no one noticed my pain until I was literally unable to move my right leg.

    Similarly, when the onset of pain occurred with kidney stones, it wasn’t until the pain became so intense that I was unable to take anything but the shallowest of breaths and unable to talk, that anyone noticed anything untoward was occurring. The pain had gradually built up over a period of half an hour, and outwardly I appeared perfectly normal The irony was that I was attending a mindfulness session at the time.

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    1. Thank you so much for sharing your experience. Just awful that you were in so much pain before you received any help.

      “Missed” pain does seem to be a shared issue. It can be so dangerous for us. I don’t think anyone could ever argue that Polio or Kidney stones were just a twinge. Your reaction is natural, but not one that brings help unless people know to watch for it. Thank you again.

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  10. I like your post, and I agree with several points. I think when asked how bad your pain is, it’s the striving for accuracy that trips you up. How bad in relation to what? Any pain you have ever felt? Only the instances of bad pain? And how bad is bad in relation to other people? If there is an objective scale from 1 to 10, how can you possibly know and feel what that is? etc etc. I’m sure you know what I mean. Other factors come into play for me as well. While I like a good moan, I kind of feel that my pain is nobody’s business, so I tend to keep quiet about it. Also, when someone asks, even the doctor, my instinct is to play it down, because a) I want to appear strong and b) I’m sure others are much worse off, so I can’t be that bad.
    As an aside, I was interested to hear you say that Welsh has similarities to German. My first language is German, and I quite fancy learning some Welsh!

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    1. Thank you. Yes. Striving for accuracy and losing the “big picture” when distracted by pain.

      Definitely learn Welsh! It’s a great language. Although unlike German and English which use a Subject Verb Object sentence order, it uses Verb Subject Object. I love how each sentence in Welsh seems to balance. Balance is pleasing 🙂

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  11. I am just recovering from the worst migraine I have ever had ( and I have many) and know that it has helped that I have explained in depth to my husband of nearly 20 years that when I say I am very sick I really am. I had to do this as about 3 years ago I realised that although I would say I’m really in pain, sick, hurt etc. my face and actions do not betray it. It’s like I am behind a wall screaming that things are not good and I am very carefully explaining that I really AM going to collapse but nobody takes it seriously as I have No facial mimic or pain showing. Again – I’ve heard the very high pain threshold thing even from doctors or I’ve been disbelieved. One doctor actually came back and apologised for not believing me previously after performing a procedure that has every one else she had done it on bawling and I didn’t flicker. I told her it was very painful and I think she understood that I hadn’t been lying about the previous times and apologised. It has caused me no end of problems in pregnancy as well but it does help if you have someone who understands and can advocate for you. Thank you for your experiences – I really appreciate your sharing

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    1. Thank you so much for sharing how pain has affected you. It can be really difficult. Last week I had a sudden pain that was so bad I couldn’t stand. I got to a seat and said nothing. I finally managed to gather myself enough to say “I am in pain and can’t stand”. The words were calm and monotone because that’s all I could manage.

      I also find it confusing when someone says something like “this may be uncomfortable, but tell me if I hurt you.” How much discomfort is too much? Where is the line. People often mean pain when they say discomfort – they use it as a euphemism. I’d rather know what I’m facing.

      People who can advocate for us can literally be life-savers.

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  12. Reblogged this on Aspie Under Your Radar and commented:
    Great post! I have my annual physical tomorrow, and I am preparing notes in advance, including information about pain and discomfort I’ve been having. I’ve explained to my doctor that I don’t always experience pain the way others do, and I sometimes need time to think about my answers. I’m extremely fortunate that she’s patient and compassionate and she gives me time to sort things out. I’ve dealt with plenty of other doctors who weren’t.

    Appearing “normal” to the untrained eye is a pain. Literally.

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    1. I’m so glad you have an understanding Doctor. They are worth their weight in gold. I have to have someone with me or I just start doing the “social chat” and responding to everything with “don’t worry, I’m fine”.

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      1. Thank you 🙂 after so many years of really struggling, it’s nice to have some help. It also helps to understand how autism affects me, so I can be more effective when I talk to doctors. That really makes all the difference in the world.

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  13. Thank you for this post! Being autistic and suffering with chronic pain, I have the hardest time expressing I’m in pain, especially to doctors. The more pain I’m in, the more non-verbal I get.

    And I did the exact same thing with the number scale for pain. It was so hard to quantify the pain based on numbers and smiley to frowny faces. I’ve found one scale that does it based on functioning levels (more for chronic pain patients but still useful), and I found it much easier to say things like “I can ignore the pain and still do things” (a 3 on the scale) or “My pain is all I think about. I can hardly talk or move” (a 9 on the scale).

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    1. There are definitely more useful scales. Someone shared some with me yesterday, the happy/sad face one is awful, but the one you describe which has actual functional levels is useful. Looking at it I have easily had 10 pain, but I would never have scored myself so high without the clear descriptors.

      It’s so hard dealing with communicating chronic pain 💐

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      1. Thank you very much for your comments about pain scales. I have a slightly different view of the 1-10 scale than mentioned here, but not that different. Having a scale with details to print out and show a doctor is a wonderful idea!

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  14. Thank you for sharing. I too have had a problem communicating about pain: where it is, what kind of pain it is, how bad it is… Sometimes doctors even seem convinced I’m experiencing pain when I’m not (and don’t seem to believe me when I say I’m not). It’s become clear to me that they and I just don’t speak the same language about pain and that I need to open our conversations about it by trying to make that clear.

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  16. Everything you said here…this applies for me with emotional pain as well, perhaps even more so. The more emotional pain I’m in, the less able I am to communicate what’s going on with me in a way that makes sense to other people, and so the more alone I feel, and the more it hurts.

    Isn’t emotional pain, when shared, supposed to bring people closer together? But for me, it drives me into greater isolation because I lose my ability to communicate adequately. Because I don’t have the body language (tears, facial expressions, etc) to go with the words, even if I use the right words, it comes across as some kind of ploy for attention that has little to nothing to do with the reality of my internal experience. And since I despise being needy, I’d rather keep my pain to myself than repeatedly fail at communicating my experience or try to fake an expression that isn’t authentic to me (not gonna do fake tears, even if that would make it seem more real to others…just not gonna do it). If I try to talk about it after the fact, it sounds like I’m dramatizing, or refusing to acknowledge that things are now better for that moment. The only recourse is to learn how to deal with the internal struggle on my own.

    To learn this about myself has been both liberating and devastating.

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    1. Be kind to yourself 💐 yes I definitely react this way to emotional pain too. I withdraw, don’t want to be hugged or touched, find it hard to speak. It’s very much a “pain” reaction as well. And yes it can be difficult to express that need for help when you’re not communicating it in the “right” (!) way.

      What we really need are people who believe what we say. Who don’t need to see the emotional “proof” of wailing or tears to believe our words.

      I have found it helpful to explain these things to people around me when I’m not in pain. Then we can come up with a plan for how I can communicate that I need help. Whether that’s something I write down, or a code word, or whatever works.

      You are not alone in this 💐

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      1. What is it you’ve found that is helpful to you when you’re in pain, especially emotional pain? My therapist has asked for this information at times when I’m not in emotional crisis, and I have no answer. Hugs, platitudes, even empathy, don’t help. I have people around me who would offer support if I knew what would help. But I don’t know what to tell them. So far, the only thing it seems they can do is give me space and wait for me to work through it on my own.

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        1. It helps me to have any guilt I feel about shutting myself away alleviated. The guilt makes it harder. Someone saying, “do you need to rest? Then rest is what you need.” Shortens how long I need to rest. Whereas someone saying “come on! Get up, get going!” Makes me feel terrible for not being able to get going.

          It’s more than space, it’s acceptance that what you are doing is healing. I think of it like wading through a river to the other side. You don’t know how far the other bank is, but it is there. As long as you keep going, eventually the river will slowly get shallower and shallower and one day you will be on the other side. Someone saying “why don’t you just run?” Doesn’t understand how hard it can be to move through water. Someone who says “you’re doing well, just keep going at your pace and you will get there, rest when you need to rest” is helping you conserve your energy and get to the other side.

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          1. that’s a good point we should keep really in mind. Everyone has their own pace, their own way of dealing with things. You should always keep that in mind, never take your own standards and show tolerance. Especially when it comes to dealing with problems! Thank you for this!

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  18. Thamk you for sharing this. You may have just explained why my son rated his pain lower on the “face” scales than I would have expected after an injury when he was 10. He pointed to a moderately unhappy face, because that’s the most that he would have shown the world.
    There have been recent attempts among medical professionals to better define pain ratings, to make it clear, for example, that 10 means you are non-functional and in an emergency situation. We see so many people who rate their pain as 10 while still able to walk into the clinic, talk normally and so forth, that I think the emphasis has been on helping these people avoid overstating their pain. But on the other hand I think it’s important to avoid saying 10 is “the worst imaginable pain ” – because some people have extremely good imaginations! I am a PT, not an emergency worker, so the scale isn’t critical for me, as it might be in an emergency situation. I think that carrying a card stating one’s “atypical” pain responses might be very helpful in case of emergencies.

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    1. Thank you for commenting. I think you’re right that a card of some kind would be useful. Anything that involves just handing it over rather than having to explain.

      Someone shared that functional scale with me yesterday, and it is so much better. I was shocked to see that by those definitions my “normal” level of pain is a 4, and I have been a 10 several times in my life. I would never have rated my pain so highly on the “expression” scale, or without the definitions. It is certainly a step in the right direction. Anything that actually quantifies these things in a way we can understand, helps.

      Thanks so much for your comment.

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  19. Pingback: Performing Pain – Hyena Child

  25. I appreciate you sharing this. I myself am not autistic, but I feel like this can help anybody who is. I feel like by putting this out there you can help so many people that are currently in this position, it lets them know they are not alone and it’s truly inspiring.

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  26. I see this in my teen aspie . . and yet it is so hard to always remember that he doesn’t always express his needs . . I am currently (last few weeks) focusing more on seeing/feeling his needs and providing the needed support.
    Thank you for this reminder

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      1. may be people have also first to learn to understand? Give them a chance. As it was compared with a foreign language, I made once an interesting experience. I learnt portugues because I lived in Brasil. After 5 weeks I wanted to try conversation with the neighbourhood. She looked at me and told me, that she is so sorry but that she does not speak english. I was so frustrated that this women not even realized that I try to speak her language. But time by time not only I was getting better, but also she learned to understand me. She knew that I first could only speak in present. So if I wanted to tell something what happend yesterday I just said yesterday and told the story in present…she understood, because she wanted to understand me and learnt the way I speak her language…..I learnt, that there is never a language barriere ( even if you always will think) as long if there is a will to understand each other…there may be confusions, and misunderstandings but is you trust and just keep on trying, there is a brigde to people who care!

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    2. I think this situation happens to everyone sometimes. We keep silient when we are sad. But actually we want to be cared. People will love you when you love them. So just tell other you like them and want to help them, you will feel more happy. Try that please.^-^

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  28. Well I did not read all comments but a lot, and I´m not sure if I should comment or not, as I have not so much pain experiences. But anyway, I will write, what I wanted to write:
    I wanted to write that this is a wonderful contribution !!!!!
    I wish you ( and everyone who needs) so much that it will hear the one who should hear it. You say you are not one of the others? Who is we / they? Every person is different, some more some less. What do you mean, how helpless I often am. I am lacking words before task because I am afraid of not communicating properly? Your performance here is so deep and detailed gorgeous. You think so powerful thoughts that most people can not do because they have no ability to think far. But I understand that you feel helpless, that pain must be horrible, that there are certainly moments that are difficult. where you are hard and inaccessible. But you can live with that, no? The moments in which you can communicate that, what you have communicated in this post makes it more than up for it. Your comparison with the language and pain was very appealing to me, because I am a “foreigner” ( german living in France) and just today, I sat at the doctor and actually had to communicate in pain. The doctor was very nice and just asked questions that I could answer with a nod or a shake of the head after the first tears had fallen. So but I never thought about how much is my pain…if it is too much I certainly do not speak anymore. Thank you for this insights!

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    1. Danke! Such a lovely comment. Thank you so much for sharing your experience. It’s so important to remember that we do all communicate pain differently, and a good doctor who knows this can make a world of difference. Thank you again 💐

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      1. Thank you for your post and comment. Yes, I was really impressed yesterday, that there is a doctor, I do not even know, who seams to understand and care for me. This was quiet a new feeling.

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    1. Yes, very good point. Some people would score any pain highly, meaning that it’s often assumed everyone else is exaggerating too.

      You are very welcome.

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  30. I understand your despair for not being able to communicate the degree of your suffering. For two or three times, though in different circumstances I had felt the same. It seemed that the pain swallowed me and inhibited any communication with whatever and whoever may be around. Silence was the only companion a really needed waiting my pain come to an end. Doctors say I am able to put up with intense pain and that does not mean I am very courageous but that for some reason I always feel that pain will come to an end. I call it hope. In my view, all that might help me to overcome those awful moments is inside me in the deepest place of my being. At the same time I must say that knowing that around, or even not so close, there are hearts and souls suffering by knowing I am in pain and wishing to get the degree of it to know how to help gives me, when pain allows, a sense of loving care that warms my hearth.
    The question is that there are no words to tell the most important, the really important, things of our life. Pain is one of those. You may groan in pain and then everyone around will understand you are suffering but that knowledge of them has nothing to do with what is going inside your body and soul. You must tur to the other side, to the essential part of your existence and get help from there. Death comes when we give up, when we stay stubbornly believing that all we need will come from the outside, and, I think, that is why you want so much to tell your pain.
    When we cannot send pain away we must try hard not to live inside it for the hardiest it may be but to face it up as the unique and only thing that really matters. Just remember that when we are no more things always go on without us. Keeping the precious gift of life must be our main duty. Accomplish that duty!

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    1. Thank you for your lovely words. I too believe in hope. There is so much joy in the world, yes there is also so much pain, but if you accept the pain and look towards the joy, life has meaning. Thank you again.

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  31. I do have trouble expressing physical pain, but I get more emotional pain and have no idea what to say or do. Do I kill the offender? Do I trick the offender into becoming offense to my friends? Do I tell my friends I find a particular person offensive without a substantial reason?

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    1. Emotional pain can be enormously tricky too. I always tell myself that my emotions are real, but that doesn’t mean that the motivation for them is. So if I am hurt by someone’s thoughtless actions, I am hurt and that is real, but that is actually a separate thing to the action. Maybe they didn’t mean it? Maybe they didn’t know how hurt I would be? Maybe they lashed out because they’re in pain?

      So instead of focusing on the other person, I look after me instead. I am kind to myself, and as the emotions pass it is easier to see the truth.

      I often react to emotional pain in the same way as to physical pain, so it can leave me very cut off. Be kind to yourself.

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      1. Oh, that’s a very important point and I do not think anyone in the world is safe from that. If you get hurt, you look at your pain. You do not consider often if this person did it deliberately or even noticed his hurting act. Quick thoughtless words, ignorance, but also simply carelessness and naivety can quickly give rise to any remarks or actions that are unconsciously very painful for someone.
        Normally, such people are simply to avoid in the future, but sometimes that does not work and then I can understand, when you are developing hatred, or try to avoid hatred by taking other actions. These are darn situations and hopefully there is the possibility to recognize these misunderstandings and to forgive oneself and the other one.

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    1. Thank you, I love hearing about the non-autistic mind. It’s quite amazing how differently we all process information and take our brains for granted.

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  42. You express well the effect significant physical pain has on most of us, autistic or not; it has the power to erase — or at least make seem unimportant — the niceties of social interactions. It calls attention only to itself. .

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    1. Absolutely. Most social communication is disordered, mine is extremely “ordered” in comparison. I’m the one with logical, straightforward ways of communicating, but I’m the “disordered” one. Ha.

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  48. We have to talk about it more, and raise awareness. That’s the only way to achieve that. I myself have depression, and I’m trying to cope with it. My mom knows about it, and knows that I’m seeking help from a doctor, and still, I don’t think that she really understands what I’m going through. She doesn’t treat me the way she should. But all things will be alright, hopefully.

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    1. There is a speacial treatment needed? I thought always that treating all people in the same way is the best? Of course you care more about the ones you love.But an attentive loving and understanding mother would always have to be suitable, no?

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      1. Treating people equally is not the same as treating people in the same way.

        I have sensory issues that mean strangers touching me is painful. Does this mean that hugging is wrong? No! I can see that other people enjoy it and I wouldn’t want them to stop, but I would want them not to hug me unless I had said it was ok. By treating me differently you are respecting me and treating me as an equal.

        Many people show love and care differently, the differences are not “worse” or “better”, they are different. We shouldn’t be afraid of being different.

        For years my mother (who is attentive and loving) would hug me when I was sad. She did not understand that it caused me pain, because it caused her joy and comfort. Now she knows, we have many ways to show each other that we love each other, but we do it in different ways. We both respect each other and that’s how I know that she is truly loving and understanding.

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        1. Yes that’s right. I think that should not be a problem, because she would certainly do anything to behave properly. But I think that this situation is also new to her and she first has to learn what is appropriate and how you feel. But I think, in being together, watching, talking and embracing she will learn quickly.

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    2. It can be so difficult for people to empathise with things they haven’t experienced themselves. Knowing that the mistakes come from a place of love, can help, but that doesn’t mean they can’t make the problem worse.

      It’s very hard to have the energy to say “this is what I need!” When you’re feeling so low, and even harder when you feel like you have to argue your points every step of the way.

      All things WILL be alright. You will be. I have suffered from depression in the past, and found that the best times to discuss what I needed, were when I was better (which isn’t helpful now, but could help in the future). All the best! Stay hopeful.

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  50. Reblogged this on Better with Expertise and commented:
    I’m not autistic. But I know some and I like them.
    They are direct, most of the time very intelligent or creative at least in one special topic. @Lisa, I don’t see it that negative in Germany. And I also think it’s changing for better already. Ever heard of Auticon.de? A company that hires autistic qualified people as IT consultants?
    And there at more positive examples, even you’ll find always people, who don’t care at all or only about themselves. All the best and be proud of your special power. Mike from Berlin, Germany

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    1. Some employers are definitely finally seeing the value of autistic employees. I would love to see more and more workplaces welcoming autistic people in. The more ways of thinking the better! Not just in IT and numbers, but also in the arts, and all different types of work. Without autistic brains in the mix you are never getting the whole picture.

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