Pain Scale and Autism
This week, I had a new bad experience with the medical/dental world. I was getting a root canal and the dentist wasn’t checking in with me to see how I was doing. I had slipped from discomfort to pain at level 9 with gurgling sounds of distress to an outright level 10 inability to speak and a near dissociative state where I wasn’t sure I could see or hear anymore.
For me, and for many autists, our experiences in the sensory world are so different from other people that it’s difficult to get them to believe us. On the one hand, I have extremely high pain endurance when it comes to athletic events and training. I have a level of hyper-focus that means that I often cross a finish line and collapse or discover I’m bleeding from an undetected wound because while I’m racing or training, my brain doesn’t seem to process pain even if my body is experiencing it. I do Ironman competitions and I once was very competitive, enough that I was nationally ranked (still am, technically).
I also have a tendency toward a lack of affect (this is what they tell me it is) because I don’t show my emotions and particularly not pain on my face. I get frustrated by this because it feels like I’m being asked to put on a performance of pain when I’m in pain. It’s bad enough when this is required at some kind of social celebration, where I have to figure out the right face to put on to show my happiness, but I find it almost impossible to do the right face of pain when I’m in agony. And talking while in pain? Not going to happen. I might be able to get out some rote words like “yes/no” or “hurts,” but it’s not going to be more than that, and it’s especially frustrating because I’m a writer, a word person. Words are the thing I’m the best at. They make me feel human. And these pain experiences make me feel—not human.
Even the pain scale often indicates facial expressions as a way to indicate distress, but I tend to go more and more nonverbal when in greater amounts of pain, as well as having more and more blank face. This is especially problematic if someone demands to know what level of pain I’m in and I say stoically “8” and they are expecting me to be showing pain in a more neurotypical way.
I’ve tried a variety of different ways to try to get them to listen to me. I try to remind them that I’ve done multiple Ironman events, that I’ve delivered 3 children at home without medication, that I passed a kidney stone on my own last year and compared to that—this is a level 8. I’ve tried to explain that I’m autistic and may not show pain the way they expect, but if I’m able to speak, they don’t understand autism well enough to accept that I know my body better than they do.
And then there’s the whole problem of being immediately seen as being medication seeking when I actually do not like opioids and only take them when absolutely necessary. I often have to argue with doctors to get them, and then try to get them to prescribe me just a handful because I don’t want to have a bunch of leftovers in my house.
Sigh.
Just one of the problems of autism.