Thursday, March 21, 2013


I was discussing this with a few friends the other day. Autistic pain and neurotypical pain, and well, everyone's pain, is not the same. The other day I was told something would be VERY painful, but it wasn't. It was however VERY unpleasant and INTENSE, but not really too painful. These are different sensations and they make a BIG difference to me in how I prepare mentally for them. 

At the physical therapist or the doctor, I'm asked to rate my pain on a scale of 0 (or 1) to 10. Sometimes, it is merely a binary- pain? yes or no. 

A lot of the time, the questions have to do with what KIND of pain. 
For example, WebMD asks; Q: How would you describe your headache? The possible options to this question are: 
1) sharp or stabbing
2) dull or achy
3) burning or stinging
4) pressure or fullness
5) throbbing
6) none of the above 

I'm often at physical therapy and can't describe the sensations. It is tenderness and discomfort, but not exactly pain. There are just so many ways we can feel things, so many unpleasant ways, and so few words we know how to use for it. The types of analogies we use are also lacking. 

Then, when you get to autistic descriptions of pain/discomfort to NTs it is sometimes just totally baffling and impossible to communicate. 

I read this excerpt from the wonderful magical and highly highly acclaimed (by me) anthology, Loud Hands: Autistic People Speaking which pointed to some of this.  
"When I was six years old, people who were much bigger than me with loud echoing voices held my hands down in textures that hurt worse than my broken wrist while I cried and begged and pleaded and screamed"  (Bascom, Julia. "Quiet Hands." 119). 
Certain things HURT us (autistics) that aren't physiologically supposed to be related to pain. It is very complicated and confusing and there is just a lack of terminology for talking about how our bodies feel. I have noticed through physical therapy that in general I don't know the right words for the right feelings. I know good or bad and painful or itchy but I don't really know how to explain to a non-autistic what it feels like, really FEELS like to sit still for too long without stimming. Or to explain what it feels like to have to eat the wrong kind of foods. 

I think it would be great to have some way of comparing feelings and sensations that we feel and understand and know about ourselves to the more traditional and medical and NT ideas about sensation. 

I don't have ideas. Just thoughts. 

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