Posted by: E (The Third Glance) | October 7, 2012

Autism and pain (tolerance)

Given the rather broken status of my left ankle (though it is healing, slowly, I’m still in the “no weight bearing” phase for another 3 weeks), I thought this might be an interesting topic. Quite often, I hear parents saying that their autistic youngster doesn’t seem to feel pain, or is hyper-sensitive to some types of pain and hypo-sensitive to others, in a way that just doesn’t make sense. How can a kid not notice when they’re bleeding profusely from their bruised knees from falling, but be sensitive to the lightest touch on their shoulder? (This is a common scenario, and it’s a set of examples that actually applies pretty well to me, actually.) The idea for this post came from a response I made to Rob, at Lost and Tired a couple of weeks ago, when his son Elliot had a really bad ear infection that he didn’t seem to notice, and I’ve been sitting on it until I had the time and energy to put it into post form. So how do I respond to pain and pain triggers?

First of all, I’ve come to think that there are at least two, but probably more, different types of pain. There’s physical pain, and there’s sensory system pain. I’m hypo-sensitive to the former, and hyper-sensitive to the latter. When something assaults my sensory system, it hurts. That’s the only word I have for it. When I have a physical ailment, it sometimes (though very rarely) hurts, but not in the same way. Most of the time, it just feels weird. Sometimes it feels weirder than others. In this post, I’m going to be discussing my response to the physical pain side of things, where the pain is triggered by injury or perhaps illness.

I have an incredibly high pain tolerance in general. I’m relatively numb to it. I collect bruises daily walking into doorframes, whacking my hands on corners of things, accidently, kicking chairs, and tripping. When I shower each day, I take inventory, but for the most part (though not always), I don’t notice the injuries until much later. I think that it has a lot to do with the fact that my ability to distinguish, sort, and categorize signals from my body is not very good. I often don’t know where a signal is coming from, and figuring out the intensity of that signal doesn’t always happen. I can have a massive response to a sound that hurt me, but I have also walked around on broken toes before, wondering all the time why my foot felt funny, but not registering that anything was seriously wrong. (Until I finally looked down and discovered that one of my toes had flipped over and the others were at odd angles and purpling, that is.)

Often for me, I know something isn’t right when the body part in question stops working. Until then, it doesn’t register as painful, just a little strange. I’ve gotten myself into serious medical trouble because of this before, and so now I quite literally do a “body check” every evening, and keep a journal. If something doesn’t feel quite right for a week, then I’ll make a doctors appointment. The whole “give me the level of pain from 1-10”. I register everything below most people’s 8-10s as 1-2. I don’t know what “moderate’ pain feels like. I’m either mildly uncomfortable, or ER-level pain that leaves me withing on the floor or passed out. When I broke my ankle a few weeks ago. I knew something was wrong, because I heard a crack, and because I couldn’t move my foot or put any weight on it. Not because it hurt. 6 years ago when I tore most of the ligaments in that same ankle, that was my same response. I was marching in place (long story) and I put my foot down wrong, felt a bunch of stuff give and my foot turn weirdly, wobbled, then tried to put my foot down again, and this time, my whole leg buckled, and I felt my leg bones splaying apart. So I stopped trying to put weight on it. But it didn’t “hurt”, it just felt weird.

I grew up doing competitive gymnastics. The sport of gymnastics tends to have a focus on “pushing through the pain”, and that is something that was even more extreme for me, because I would get minor injuries (jammed toes, twinged knees, etc.) that most people would rate as 3-5s on their pain scales, but that didn’t feel that bad to me, because, as I have discovered, I don’t really feel that pain level. So I learned to work through most types of pain. This got me in big trouble when I was in high school. I noticed that my wrists were feeling a little bit funny, but they weren’t really hurting me, so I kept doing things. And kept doing things. And it got harder and harder to do those things (which included playing my instruments and holding pencils, as well as gymnastics training), but it wasn’t until a couple of years later, when I lost the ability to do a pincer grip, because I’d worn down all the cartilage in my wrists over the past few years and now bone was grating on bone (an incredibly painful thing, if you’ve never experienced it), that I noticed something was wrong. And this is because I just didn’t recognize the difference between “this is fine, it’s just a little bit painful, but not something majorly wrong” and “there is very likely something seriously wrong here. You should get it looked at”. The third level of pain, is, of course, the “get thee to the emergency room RIGHT NOW”. I can recognize that level of pain, too.

This whole system also applies to illness. I tend to not really notice that I’m sick until it’s far too late. I’ll notice that my throat is a little scratchy, or that my ear is sore, or my stomach hurts a little, but that’s all run of the mill. It’s not until my body completely gives out that I notice something’s not right. And I think that this is just my brain not being able to discern the difference between “my [body part] feels a little funny” and “there is something seriously painful and wrong with my [body part]”.

In terms of burns and other immediate things, usually if I accidently touch a pan on the stove (which I do more often than I would like to admit, silly lack of hand-eye coordination), my instincts cause me to pull away. There’s no mental “ouch that hurts” that consciously registers before I pull away, it just works. That doesn’t mean that there isn’t pain, it’s just that I don’t register it as such.

I should also add that my mother used to compensate for this, by every single time I so much as mentioned that something was a little off, she would go into complete panic mode. I can’t tell you how many times I ended up stuck on the couch icing the toe I stubbed gently on a doorframe, or at the doctors office because I mentioned that my hand hurt a little. It lead to me never telling my mother about any injury or ailment, ever. Because for the most part, I’m so incredibly accident prone, and I couldn’t live my life, because I walk into a door frame or table or something else at least 3-4 times a day, and I really don’t need to put an ice pack on it every freaking time…

So that’s how I process pain and discomfort. In a nutshell, I don’t. I can’t distinguish between mild and moderate-severe pain, so I have to rely on other signals. I have extremely weak ankles, especially my left ankle, and I roll it at least once a week, quite often more, just walking down the street. I’ve been through several rounds of physical therapy (and another round coming up), and I have good, safe shoes. It’s just that my walking abilities aren’t the world’s best, and I’m often not paying attention to them. So my ankle rolls a lot. I’ve learned how to fall with the roll, rather than fight it, so that it minimizes the stress on the ligaments. I’ve learned how to correct my gait to try to insure no ankle rolling will happen, too, but that just doesn’t really work. I roll my ankles, tweak my knees, and mess up body parts at least once a week. And so I have this general set of rules and a routine, for every time I injure myself. I first assess, can I move the bodypart. If I can, then I try to use it and make it weight-bear. This includes upper limbs as well as lower limbs. If it passes those two tests it’s fine, and I’ll continue along. If it fails one but not the other, I’ll wait and see if it was just shock or if something is really wrong. If it fails both of these tests, I know I need help. Nowhere in that routine is there an assessment of pain. Because pain level tells me nothing.

Maybe it’s because I have an over-developed sensory system that feels “pain” constantly, that I don’t register other types of pain properly. Maybe it’s because the pain signals are processed in two different spots, but my conscious brain doesn’t understand how they’re different. I don’t really know why. But I do know that the way I process pain is different from how most people I’ve encountered do. So I hope that by sharing this, others will realize that people experience and register pain differently. I might not have the same responses as other autistic people. This is what I personally feel. But I’m pretty sure that at least some of my response is tied into the fact that I’m autistic and my brain processes signals differently.

How do you (or your children) respond to pain? Please, leave comments – I’m really curious as to how other people experience this.


Responses

  1. When my daughter was 1 and getting her shots, the nurse told me I had to watch her closely because she didn’t even flinch for the shots she has an extreemly high pain tolerance but like you is hypersentive to light, sound, annoyances, textures. And I’ve gotten to the point that if she tells me she really doesn’t feel good, we check her temperature. Most recently a sore throat was a 104.5 fever (and her normal is 97.6) and a shot of antibiotics, perscription, inhaler, and cough syrup. She, also, had a lot of ankle problems until I read its common for Aspe’s to have weak muscles in their ankles and feet that cause flat footedness. She work ankle braces for a couple of years anytime she was on her feet for extended periods. Her muscles have built up in her ankles that she hasn’t sprained her ankle in a couple of years. Also, shoe inserts help if they don’t annoy you by providing extra arch support.

    • Interesting about the aspies and ankle problems… I already wear well-supported tennis shoes nearly everywhere, and actually don’t have flat feet. Just really bad ankles. (I wear ankle braces every time I go hiking or do anything athletic or that involves standing/walking a lot, but I don’t want to wear them all the time – it’d weaken the muscles even more)

      And yeah, I’ve definitely been there with the “sore throat = super high fever/lots of other major complications” thing. My body temperature is about 96.2 – I’ve also read its normal for autistic folks to have abnormally low normal body temperatures, too…

    • Hmm, didn’t know that about the ankles.

      My ankles seem to be okay (I can walk for long distances and run … until I am too tired to keep running; the limiting factor is not my feet or ankles, I don’t think), and my arches are normal, but my dad has flat feet. His arches did not fall all the way down until he was in his fifties, though, so maybe mine will fall too.

      I have no idea what my normal temperature is. I’m very rarely sick at all, and most of the time when I’m sick I don’t have a fever.

      One thing that IS odd about my extremities is that they are bad at detecting temperatures. I have very poor circulation to both my hands and feet, which my grandfather (dad’s dad) has as well. In high school chem lab I would sometimes grab flasks directly off the Bunsen burner without feeling the heat. My hands also usually feel cold to other people, even if they do not feel cold to me.

    • Interesting! I tend to have weak ankles – not as weak as some, but my right ankle is quite prone to sprains and “rolling”, I guess (if I’m understanding E’s use of the term correctly).

      I also tend to have a low temperature (not sure by how much, just that it’s a bit lower than normal) and I *don’t* get fevers. Not usually, at least.

      However, I am *very* sensitive to heat; an outside temperature of 18°C (64.4 F), if there’s no wind, will cause a rash and inflammation on the palms of my hands and all down my inner arms. As well, I have trouble regulating my body temperature (something that I’ve noticed lately) – which was made worse by the fact that I was taking Effexor for the last 4 months. (Effexor is apparently contra-indicated for people on the spectrum, and some of the “alleged” side-effects – i.e. ones that aren’t in the literature – are apparently headaches and screwing with body temperature regulation.)

    • Oh, wow! I have weak ankles as well… I can’t stand for too long without it hurting. Interesting.😮

  2. My 5.5 year old is very sensitive to shallow injury, a stubbed toe or scratch, grazing his knee or back can cause pretty extreme sensory-meltdown. he seems to be coping better with the more minor injuries since starting school – maybe because he is learning that he gets more support at school by reporting the injury than by going into meltdown, but injuries with blood are still dramatic. I am grateful that we have not yet experienced major injury with him, no broken bones or even sprains, so am still not sure how he will cope with those. in terms of illness, he has to be pretty ill for his usual engrossing play behaviour to stop for any length of time, coughs and colds don’t really slow him down, and we only discover he has tonsillitis or sickness when we are woken at night by crying.

  3. My autistic son, as a child, would take a nasty fall or get a cut or bump that would make most children cry; but, Jay would just get up and carry on, like it never happened. If my Jay cried, or failed to resume his activities quickly, I got very concerned! Once, when he was about 5, he woke up in the morning and couldn’t walk. He was crying hard and I knew something was very wrong, although I didn’t know what! I called the doctor and got an on-call pediatrician who was obviously unhappy about being woken up by something he seemed convinced was very minor. I insisted that I really felt something was terribly wrong, and he finally consented to meet us at the ER. Jason was diagnosed with an infection in his knee joint (“synovitis”). The knee later reddened and swelled, and he developed a rash. They “hoped” it was a viral infection, rather than bacterial. It did turn out to be viral. He was given a med for pain, and we had to keep him out of school and wait it out.

    My son is largely non-verbal. He uses single words and a few word approximations and pictures to communicate. When the orthopedic doctor they referred us to asked him where he was hurting, Jay said, “Knee!” The doctor asked him to touch his hurt knee, and he did so. The doctor then asked, “Are you feeling bad, Jason?” He said, “Sick.”

    When my son couldn’t walk and was crying, I KNEW he was in serious pain! The doctor on the phone had tried to “blow me off” and tell me Jay just had a cramp that would work itself out. I think that Jason experiences pain similarly to the way that you do, E. Thank you for explaining it and giving me a clearer insight into how he probably feels when he is hurt. This has helped me.

    Hope your ankle feels better soon– take care!

    Lynne Pardi

    • Thanks, Lynne.🙂 It’s great that you’re so tuned into Jason, so that you can help him when he needs it. And I’m glad he’s been able to express himself at least somewhat, as well. Sometimes Doctors just don’t get it.

    • I think I’m like your son Jay. Obviously I don’t remember early childhood, but as an older kid, teen and college student I was always of the “fall, hit head, everyone is worried, but you jump up and keep playing” type. I also do not usually vocalize when I hurt myself — if I make any noise, it is a hissing sound.

  4. I am aspies, and sometimes when i am in pain i can go with my daily task without painkillers. I get headache a lot. I am too bumping on things and get bruises i even unaware of. I guess most of aspergers are clumsy.
    I have low tolerant on antibiotics. If a doctor prescribe me a strong medicine, i would start getting dizzy, nausea, or even hypersalivating. So i really watch what medicine i take.Do you think we are more likely to feel the sensory pain? Because thats what irritates me the most.
    I saw this one major brand billboard in my country, and those colours are like flashes in my eyes and it hurts.
    Thank you for sharing your story, it is comforting for me, and hope you recover soon from your broken ankle

  5. Dental pain is a sharp piercing pain which causes my eyes to water, though I can ignore it. Bright light makes my eyes Water, harder to ignore.
    Superficial scratches, bruisings, and moderate lacerations I can rarely explain as, like you, I discover them later.
    Broken bones . . . Notice them when there is no function.

    While logging, once, I received a kick-back blow from a tree. The tree bounced and drove a dead branch end under my chin. I awoke on the forest floor . . . Assumed I had been thrown there by the tree, and continued to work. I met the rest of the crew for lunch. When I drank my diet coke, the fluid escaped from under my chin. The crew were in states of horror and humour, and concern. I finished the day of work.

    That night I went to emergency. It took the nurse 2 hours to clean the wound of moss, lichen, and other materials and the doctor to do both internal a nd external stitchings.

    But, I am more discomfortible from light touch.

    I think a lot of it is knowing the body’s limits. Quick assessments done, sometimes subconsciously.

  6. My son who is an Aspie walked around for two weeks with a grumbling appendix – he told me only when I asked why he was walking strangely and then we went straight to the hosp to find it was severely infected! He always feels very little pain when knocking himself or falling over – but sensory things send him over the edge sometimes! Things like zips, socks or collars are always a pain!

  7. I’m not as bad as some of the people posting here about recognizing physical pain — indeed, for the most part I seem to feel it normally. (An exception, which I have already mentioned above, is extremes of hot and cold. But even that I seem to feel more now than I used to.) I am not fazed by minor injuries — I can be knocked down, hit my head, or even take a fast-moving basketball to the face and be fine, fine enough to keep playing (these minor injuries would mostly happen while playing sports).

    I also have other kinds of sensory stimuli that my body interprets as pain: sound and touch. Some sounds come with a very, very sharp pain in the middle of the ears, and most touch feels like it is burning my skin. (If someone touches me, I can find the spot a few minutes later, because it will still be burning). When I was younger I could not express any of this, and I would just be very irritable in the presence of the sounds that hurt. (Touch is mostly a nonissue as no one in my life touches me without my consent. I have resisted being held since I was a baby, so apparently my family learned to keep their hands off.)

    Unlike some other autistics, I do not distinguish between light touch and deep pressure. All kinds of touch bother me.

    I would freak out if I were to try Temple Grandin’s squeeze machine, for example. (I am very like her in other ways, but not in that.)

    • Interesting – it sounds like you, too, have different responses to sensory pain and physical pain?

      • Maybe. I guess the way I have always interpreted it is that I experience more things as pain than most people do. It’s not that I can feel two different kinds of pain, it’s that the category “pain” is broader for me.

        But that would not explain why I am so sensitive to some, but not all, of the things in that category. So probably I do have the thing about responding differently to sensory vs. other pain (to my mind, it’s *all* physical pain — it is all perceived by receptors on various cells: rods and cones in the retina, cilia in the ear, olfactory cells, skin cells etc., and relayed to the brain — I cannot resolve a difference between, say, the impact of a basketball to the face, which would be painful to everyone, and the burn I feel when someone puts their hand on my exposed skin at the cellular level. Yet I DO seem to respond more intensely to some kinds of pain than to others, but I do not know if there’s any rhyme or reason to it. After all, hot and cold, a thing to which I am insensitive, ought to count as “sensory pain” under the rubric which I have just questioned. It’s all very confusing.)

  8. Hm. I really am fascinated by some of the things that show up here in your blog, E. Especially as I can recognize so many of the symptoms – if not from my own experience, then from those of some of my friends.

    I don’t really have a hyper-sensitivity to touch – except for temperature, as mentioned above – rather, I think I *might* be a bit hypo-sensitive on that. Either that, or I just need touch to feel reassured (feeling on the edge of touch-starvation) – which might not be from the ASD / Aspergers. However, light causes pain (*especially* lights at night – OW!), high-pitched and loud sounds cause pain (which is a problem with taking care of my 4 year old niece, who shrieks when she gets excited – not her fault I can’t tolerate it!), the sound of opera causes nausea (yes, I’m completely serious), and anything spicy causes pain. (Spicy at *all*.)

    I get headaches constantly – most of them tension / stress headaches (I had an EEG when I was 11 / 12, and the only thing that showed up were signs of muscle tension – no brainwaves *at all*) – and it’s gotten to the point where I think I don’t notice minor headaches at all, because I’m so accustomed to the pain.

    Also, as a child (and even nowadays, though I can usually recognize when it’s happening now) I had a *lot* of psychosomatic symptoms. In particular, I would get sick or have headaches in the morning before school. If I was kept home, by afternoon I would be fine. It got to the point where my parents thought I was a hypochondriac. (That was painful, especially when my mother referred to it in a conversation with a doctor about psychosomatic issues.) The problem was that elementary school was a *very* unpleasant environment for me, and the family and I didn’t even know that I *might* be on the spectrum until I was 18-22 (somewhere in there). I’m in my thirties, and I was only diagnosed officially last March.

    As a result, when I hurt, I tend to inform people, because otherwise, they won’t pay any attention to it. So I think I’ve learned (if I didn’t have the pathway already – all of us are different, after all)

    On the other hand, one of my best friends is sensitive enough to touch that any unexpected touch feels as though she’s “been hit by a baseball bat”. If she has a chance to see the touch coming, it’s not bad, but having it unexpected…. *shakes head* She also ends up feeling pain because of allergies, has been recently discovered. On anti-histamines, she’s feeling a lot better, less anxious (by a bit), and in less pain.

    • Hmm – interesting! thanks for your comments🙂 They’ve been making me smile all morning.

  9. When I was young, I rarely ever reacted to pain. Even now, I still do not cry or anything… though I may curse if it hurts enough. xD But, around a year ago, I got my broken arm set without painkillers and I didn’t even whimper. Yep.

    I feel pain, I just don’t feel the need to react to it. In fact, I often feel vaguely amused when I see other people react to it, as it seems as though they’re overreacting!

    Now, while I have a more sensitive sensory system than most, it doesn’t appear that I have SPD the extreme that I’ve read about, but still. For me, it all varies, fading in and out depending on my emotional or physical state… and sometimes at random.

  10. THIS IS TOTALLY LIKE ME! I have autism and i thought i was crazy when cuts would suddenly appear on my hands and i didnt notice and never felt it. And even when I roll my ankle (often. curse my stupid legs) it doesnt really hurt that much. Just feels weird.

  11. Do you feel the affects of meds? My granddaughter is non verbal yet she seems to have many side affects to meds. The docs have tried several meds on her which I feel like she is intolerable too but I can’t get anyone to take me, or her seriously. It seems she is trying in so many ways to let us know. Any help or ideas will be appreciated.

    Concerned Grandmother..

    • Hi there, You know everyone reacts to drugs differently, and I’m by no means a doctor, just a person. I’ve had bad reactions to a couple of anti-inflammatory steroids, but really, that’s me and no one else. Sorry I can’t help more, but really, that’s up to you and a doctor. If the doc isn’t listening, try a new one?

      • I realize you are not a doctor. Was just asking based on the fact that my granddaughter is non verbal and she can’t tell me or the doctor what’s going on. Was hoping for some insight. Thanks…

      • I’m sorry I can’t help much more. It’s so person-dependent. I don’t respond to much in terms of pain killers. By the time I notice pain, it’s beyond that sort of level…

      • I am referring to anti depressants, and other drugs such as resperidol which, for some reason is being used more and more with Autism.

      • I don’t take any of them, sorry.

      • Ok, thanks for listening…..

  12. Well, if I doubted my aspie friend’s suspicion that I could be on the spectrum, then this article has convinced me. High tolerance to pain, sensitivity to the little things (princess and the pea syndrome as I started calling it).
    It’s almost impossible to startle me because I feel noise before the bang is obvious, I don’t flinch when cold cans are placed on me, I seldom am ticklish because I felt you coming up on me. I love the sound of jets, can’t stand my fridge. Recently convinced myself that I don’t have to turn the fridge off at night so I can sleep although if I’m over tired…
    At 48, I can be annoyed by that silly ‘kids only’ frequency, in fact all electronic things emit a squeal all the time so I usually switch everything off so I can sleep. Have only recently decided I can’t be bothered light proofing my sleeping area so I fall asleep when I’m exhausted.

  13. My special brother Peter is 55 years old now and is dying from advanced prostate cancer. He has autism. In the last two and a half years I have tried my best to manage the medical appointments, bone scans etc with him. I love my brother very much and up until now have felt so traumatized by the injuries he’s received from broken bones due to bone cancer secondaries. I’ve watched him be grey and sweating and still no complaining about pain! He’s on high doses of morphine because now that his bones are pretty much disintegrating he does feel pain. It has been terrible to see. But now from reading your blog and these other responses I get that Pete has the most extraordinary pain tolerance of anyone I know and it’s such a relief to know that even though his injuries have been horrendous, as long as he felt safe with me or with his carers, he was pretty much ok. It is only in these last few months that he lets me hold his hand because for all his life if anyone touched him slightly he withdrew as though he’d been prodded with a hot poker. This has helped me so much. I only wish I’d known earlier.

    • Wow, thank you for sharing this. I’m so sorry that you two are going through that, but am thankful that you have stuck by his side.

  14. Thank you for this! I found your blog on google while searching ‘autism and high pain tolerance’. I was trying to figure out if it’s possible for my 5yr old daughter with autism to have a high enough pain tolerance to have appendicitis without the obvious screaming pain that is expected of her. I am that mom going to the ER when my daughter complains of a tummy ache lol. I will share with our family and friends to spread awareness and I can’t wait to read your other posts.

    • Thanks🙂 My mom was the same way… if I so much as stubbed my toe, I would be relegated to the couch with an ice pack.

  15. I remeber when my brother was 5 years old he was 5 houses away from us and came with a broke finger (pinky) he broke it in 3 parts and he didnt notice at all he just came happy and said Look…he didnt cry or feel bad …

  16. My 6.5 year old PDD-NOS son experiences some pains with almost a meltdown (stubbed toe, sharp pain type things). But he had a raging case of strep and we didn’t know – I can’t remembery why I took him to the doc, but it was justified. He doesn’t complain about his teeth coming in or coming out AT ALL – unless they bleed. But he can play when it’s cold out and I’m wearing multiple sweaters (I’m a weenie about the cold). It’s as if he’s sensitive to some things TOO much, but others not at all. I’m trying to find info on how to help him with this, especially being a boy in America (crying when you get hurt is like a major no-no socially – sigh) – mostly the tears come with very “minor” injuries but I’m guessing they sting and surprise his nervous system. Otherwise, he’s a sensory seeker.

    Any thoughts on this? Thaks so much!

    • Well, pain means something different to everyone, so honestly, maybe its best to teach him the “this feels funny” line… when I broke my ankle, it didn’t hurt, but it felt “funny”, like something was different. Even now, I don’t recognize most body sensations the same way others seem to. Also don’t worry about the crying over minor injuries thing. If it hurts it hurts. Honestly, if you just keep an eye on him, as obviously you do, you’ll figure out what works for him, and help him learn how to communicate when something might be wrong.

      • Thanks🙂

  17. My daughter has these same issues. I don’t know how many times the nurses have gotten mad at me because my daughter was so sick. Bladder infections that almost reach the kidneys because she doesn’t tell me something hurts. I only know something is wrong because she starts taking maps. It’s frustrating. Any suggestions on what to ask my child instead of asking if anything hurts. She does have sensory processing disorder. That sounds like what you have.

    • The word “hurt” doesn’t mean much to me, as I’m pretty sure I don’t feel “pain” or “hurt” the way people mean it.. Sometimes asking if anything “feels strange” or “feels different” is the right way to go… And it sounds like you’re noticing the patterns for her, which is the important thing. Perhaps you can teach her that when she starts feeling tired during the day, she needs to listen to her body and see what feels different than normal. It doesn’t have to “hurt”, just be different.

  18. This is interesting! I have a lot of aspie traits, though I don’t think I quite count as an aspie…I think I’m something else. Anyway, I have some texture problems–foam, anything gelatinous, spider webs, dust on my hands (mud is ok,), it’s not painful, but rather irritating, disgusting, or frightening. I’m phobic about spider webs. Loud, discordant noises are also frightening. Some sensory things are wonderful, though. I think my pain tolerance itself is roughly normal. I never thought about ankle strength–I do actually roll my ankles a lot, though I’ve learned how to move with the roll so I don’t get hurt anymore. Maybe that’s another example of aspishness?

    I’m curious about the ways people on the spectrum experience cold. I’ve heard that a lot of autistic people don’t feel the cold. I often don’t notice when my feet are cold, and I am comfortable at much lower temperatures than my husband is, but I wouldn’t say I’m immune to cold generally.

  19. i go crazy over a blood test, really hurts. a tiny speck of dirt gets in my shoe, and it’s like walking on sandpaper, although it’s so small you can even see it. but when a shelf fell on my head, i barely noticed it. i fell down the stairs, banged my head so hard it bounced off, nothing.
    i think many people on the spectrum are hyper sensitive to some pains and half numb to others, and not just sensory pain. some people would go crazy over a little scratch and barely notice a burn, that kind of thing.
    and painkillers barely work on me. tylenol and the rest hardly do a thing. at the dentist, i needed five shots of navocaine because the first one did nothing.
    and i cant stand the cold.

    • My son doesn’t mind the cold, likes banging into people, bouncing off stuff. But a small scratch or a stubbed toe = huge reaction.

  20. “First of all, I’ve come to think that there are at least two, but probably more, different types of pain.” Wow. Thank you!! That is such an important idea and I never thought of it!

  21. If a parent takes a child with autism to the doctor or the ER because they perhaps are running a high fever, how should the medical staff approach the child to find out if and/or where they are hurting? If a child doesn’t really feel the pain (my son has to be running a 104 degree fever before he even acts sick) how can medical staff assess the problem? Are there ways for doctors and nurses to ask and get answers?

    • I think it depends entirely on your child. For me, I don’t feel “pain” in the typical way. So you might ask your child if anything “feels funny”

  22. Now I feel like the odd one out – an autistic with a low pain tolerance! I get very easily upset by small amounts of pain or discomfort. When I have a minor cold or a headache, my whole body screams at me that something is horribly wrong. I’ve luckily never had any severe illnesses or injuries (I’ve only had to go to hospital once, for a head-bump that needed to be glued), and the idea actually really scares me. I know how poorly I handle pain from experience, and I know that pain can get *much* worse than I have ever known – so I dread to think how badly I would handle it.

  23. I have an autistic student that constantly gets bug bites and says he’s in severe pain. Is there anything besides the standard creams that would help him?

    • Hi there, unfortunately, we’re all different. I have a bad habit of picking and poking at bug bites, so I have to cover them with band aids or I end up a mess. But they don’t cause me “severe pain” in the way that I perceive “pain”. I suggest maybe you haven’t found a good cream that works. Some creams sting when they’re put on. I’m allergic to most creams, so that actually makes it worse. Some creams leave a residue that only the most sensitive skin can recall – most creams I can use from an allergy standpoint, will leave a “slimy” feeling for hours afterwards that is worse than the bug bite (or anything else) itself. So the cream is the problem in my case, not the bug bites. I know that wasn’t a “here’s what will fix it”, but these are some other considerations that you might take into account when helping your student. You might see if you can get him to tell you if the cream “hurts” him by suggesting that maybe you put a bit of cream on the back of one hand and not on the other. Sensitive skin can make a lot of things hurt, and for me it is a pain worse than most “injuries”. If it is the cream, maybe try a band aid instead. They make these great little circle/dot band aids that were a godsend for me (when I don’t react to them, that is)

      • I’m learning so much from your blog. Thank you for sharing.

  24. I’m an Aspie with weak ankles and I thought your OP had a good hypothesis. I think you might be right about the sensory vs physical pain thing. I don’t know why but with me, external pain doesn’t really register as anything more than (for the most part) uncomfortable, but internal pain (i.e. cramps, toothache, etc) seems amplified. Same thing with noises that hit a certain pitch and other sensory perceptions like lights and smells. I’ve had broken fingers/toes that I didn’t know were broken until I tried to use them or saw them as well.

    My mother was a little over protective with injury too (but to be fair when I was a kid I was a walking accident of the worst kind), I adapted an “ouch reaction” where when I visibly see myself hurt I’ll say ouch and mentally process it, then realize that it didn’t hurt me (even though sometimes it should. . . . )

    Anybody ever notice a difference in pain perception depending on mental state?

  25. I’m curious if anybody’s symptoms they described started soon after childhood vaccinations? I’m searching for some sort of common denominator. Just a hunch.

  26. Finally someone put this into words! It’s hard to explain to doctors and such that my pain tolerance isn’t right. I ran for two or three weeks on a broken hip because I thought I just slept on it weird and get huge scratches from who knows where. The thing that sucks the most about it in my experience is that pain medication doesn’t do anything for the few occasions I’ve needed it.

  27. Most of you guys must not be autistic then. cause autistics normally have very low tolerance of pain and react to a slap on the hand. my brother says he wakes up at night when he scratches one of his zits on his face. he feels pain streaks in his fingers just doing the dishes. almost everything hurts him. thats autism.

    • As an autistic person, I know that there are people who are hyper-sensitive, as it sounds like your brother is, and hypo-sensitive, who are sensory seekers. Most autistic people have a combination – our sensory systems work “weird”, not necessarily swung completely one way or another. For me, it’s a combination of both. I don’t feel severe pain when I should (ex broken bones), but a light breeze against my skin makes me sick to my stomach, so I have to wear long pants and long sleeves everywhere or I end up crying and completely melted down. Different sensation, different sensory response.

  28. My son is currently “on a pathway to diagnosis” (i.e. a on a waiting list to see the specialist ASC team). Sometimes he definitely seems hyper sensitive to things. For instance, he has been known to scream when the water in the shower touches his skin. He doesn’t usually do this (or I wouldn’t give him showers, I’m not cruel!) but occasionally it’s a problem and I can’t see anything “wrong” either with his skin (his sister has excema, I can tell when her skin is dry/sore/inflamed yet his looks normal) or the water temperature to cause it and yet I don’t doubt his distress. Also, sometimes his skin is itchy, again, it doesn’t look any different to me. We have a variety of different emollients and creams in the house and one time one will help him, another time it will be wrong and make him scream.

    Similarly with pain. Some things he can brush off, if he falls over, he usually gets up and gets on with things – so I wouldn’t say he was always sensitive to pain. But other times the pain of something that appears minor to me clearly seems great to him, such as when he was doubled up in agony in the park for 20 mins as his wobbly tooth finally came out. Or last week when the school called me in as he was in agony thinking his knee had been stung by something in the grass and they couldn’t find anything wrong.

    It can be hard as I can’t predict when this sensitive response will be triggered. I don’t doubt the intensity of his feelings or try and I never dismiss them, but they can seem out of proportion to his injury. I try and comfort him calmly and wait for the distress to pass so I can assess how bad things are. This can be hard to communicate to other adults who think the injury is worse than it probably is and that I’m not taking it seriously, yet I know that someone make the wrong kind of fuss on his injury will concentrate his attention on it and make it feel worse for longer.

    • Sometimes you just have to trust that his sensory system doesn’t respond the way yours does – for me, sometimes just air on my skin is more painful than a broken bone. Much of the time, it’s not, but especially when I’m already overwhelmed, certain sensations that most people don’t notice are absolutely horrible for me. The best way *for me* (and that means for *me* and not necessarily for your son) to deal with the times that I’m hysterical over something seemingly benign, is to see what else is triggering the discomfort and try to mitigate that.

  29. My 6 year old daughter has autism and an unbelievably high pain tolerance and i came across your blog post when i was trying to research it. She broke her foot last year and ran around on it for 4 days before we realised it was broken. Even the cast didn’t slow her down! Then last week she fractured her elbow, and it hasn’t stopped her doing anything!!! She still uses her arm as much as she is able to!!!

    Thank you for giving us parents a little insight into what our kids may be experiencing🙂

  30. I took my 2 year old daughter (my youngest of 4 daughters) to the GP yesterday with a list of all the reasons that I believe she has ASD, one of which was the highly contrasting ways she reacts to physical/sensory “pains”. She is always covered in cuts and bruises that cause her zero reaction. When she was about 16 months old, she sneaked a glass jar of baby food into her play tent, smashed it, and sat playing with the broken glass until we found her, horrified. She also came wandering in from the garden this summer carrying a red hot disposable barbecue (that we presumed we had left out of reach). The heat wasn’t even registering to her, but when we took it away, we needed oven gloves to dispose of it. On the rare occasions she cries when she falls, it’s the shock of falling rather than any injury that provokes the tears.
    On the other side of the coin, if her clothes are too restrictive to her, or anybody touches her hair or picks her up without her consent, she screams as if she’s being murdered.
    This aspect, plus the many other symptoms that I’ve listed over two pages has led to the GP 100% agreeing to write the referral for diagnostic analysis. Thanks for writing this blog post, it’s so reassuring to have my instincts about my daughter backed up with similar stories.

  31. I’m *hyper* sensitive to pain. Drawing blood is sheer agony, for example, and anything that can cause pain strikes terror in me. Which is really not fun, but at least I don’t damage myself the way a person who’s hyposensitive to pain does.

    • That’s interesting – most people I’ve met on the spectrum are like me: hyper-sensitive to some things, hypo-sensitive to others. For me, anything touching my skin (even air currents) is agony, but broken bones and bruises? not so much. I know others who are the opposite.

  32. My daughter seems like she enjoys the pain and keeps coming back for more, relentless, I now realize that she is not feeling the pain. Bug bites, although not painful, cause a red spot, she will then pick at the red spot until raw, a pimple can turn into a gaping wound. When she has her periods however, now that pain is very intense and comes on without warning. She will want to pull my hair out or pull the shirt off my back. Or put me through any type of pain she can inflict on me as what I now realize is her way of communicating her pain or level of pain.

  33. Thanks so much for posting this, I just found it while googling for information. For the past few years I’ve been feeling like something is wrong with me physically and I do have chronic pain/stiffness/etc., but I’ve been struggling because I can’t really tell if the pain is bad or just the kind of thing I should ignore like I usually do. Plus, some of it just feels “wrong” and not really painful. I relate to parts of this post a lot and it makes me feel less like I’m being a drama queen going to doctors and seeking a diagnosis for this when I can’t tell if I’m really in a lot of pain or not (and when I don’t really care about treating the pain itself, unless it stops me from doing things).

  34. Im so glad I read this. My son isnt clarified Autistic but ADHD yet he can hold his foot inder a burning tap and say ‘its ok mum it doesnt hurt’. He had a burn recently and yet it blistered up and it didnt hurt him, he said he couldnt feel anything. After two days he chewyed it so badly blood shot out everywhere he looked like he had been cut.
    However saying that he is really sensitive to the cold. He cant swim in the local pool without a thick wetsuit. He has never slept without getting in bed and is constantly saying he is cold.
    Im sure he is Autistic x comments welcome
    hutton.rebecca1@gmail.com

  35. My son has an infected tooth that needs a root canal once the infection is better. The dentist doesn’t understand the need for pain meds. He can’t get to sleep he has trouble anyway but with the bad tooth he’s worse can’t eat it hurts and it’s so bad he’s in tears. He’s 17 years old I know he’s in pain and needs pain meds, but when he broke his arm he had less pain till after the first couple of days. His ankles always roll he wrestles and when he hurt his ankle they took an x-ray and his ankles are that of a 50 year old. He has been diagnosed with aspergers.

  36. Thank you for writing this. My son jumped from a second story window and broke his foot two weeks ago. He just got out of surgery today…he’s still walking around on that foot…or at least trying to, I absolutely cannot let him walk now. I’ve been wondering why he’s not expressing pain, given the seriousness of the injury. VERY informative, thanks.

  37. Thanks for writing this, everything you explained sounds exactly like my son. He is nearly 5 and seems to have no ability to register pain but will respond ‘oww’ to people touching him (not a fan of people touching him) so far he’s walked around on a broken foot, an obstructed bowel and admissions for dehydration after hes finaĺly registered he was sick and then decided he would curl in a ball and block the world out. Most recently today he fell 1.6m off playground equipment at school, straight into his back then got up and ran like nothing happened. It’s really challenging as a parent.

  38. I am really glad I read your story, it brought me to tears feeling as though this is exactly what my 5 year old would be telling years from now. He is undiagnosed and on the wait list for the autism assessment network. He has had multiple broken bones since June of this year, which we did not notice because he still walked on them. The only reason we brought him into the emergency at our hospital was because bumps formed or he couldnt weight bear and showed no sign of pain. At our hospital and the BC childrens hospital this high pain tolerance has been documented by many professionals and doctors but the tests are not being done until now. My children were apprehended by the Ministry of child and family services twice in 4 months due to multiple broken bones. Only now they are looking at his high pain tolerance because they found a healed broken thigh. I thank you very much for your insight and they way you explained how you acknowledge the way you sense something is wrong. I will be meeting with the doctor soon that is alleging again that we are hurting our son and provide examples of people with autism because it isnt something they plan on doing asap to so a quick return of our kids. Our kids were returned once because he broke a bone while in care, but 6 weeks after the return we found more breaks which i believe was from really active play while on these casts. He runs in full legged casts! Again I thank your for sharing your story, it helped me understand how to help advocate for my son.

  39. I found your information very interesting. My daughter is nine and is in the Spectrum. She takes very hot baths, I try to tell her not to get it that hot but she just won’t listen.
    She is also eats and eats like she never gets full. But says she is full. Does her stomach not hurt?
    She will not take use bathroom either! She just won’t go! Doesn’t she get a stomach ache? Most people go because of the urge and stomach pain. I think she goes when she is so full there is no more room in her colon. Do you have this problem.
    I just wonder can she not feel these pains!!


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