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.