When I began writing about the actions many take that are labeled “self-injurious behaviors” I had some ideas from my past of self harm (bulimia, anorexia, compulsively overeating, etc) about what that might be like. When my daughter began biting her hand and arm, punching herself in the face or chest, I knew I was seeing something different, but there seemed to be enough of an overlap that I felt I had a small degree of insight into her experience. But there is a difference between self harm and the actions many take to mitigate external pain such as cluster headaches and the pain brought on by a variety of sensory issues. Others have described the action of biting, pinching, head banging as a way to center themselves, they describe the calm they feel afterwards and many describe a sense of relief as well as others who say they are able to make sense of space and where their bodies are. Many described how when the underlying source was treated the desire to bang, punch, bite went away.
Anonymous 1 (who I quoted in yesterday’s post) said, ”When I bashed my head, though, the screaming stopped. It just cut off, and then the pain spread over my entire scalp, like a blanket over my brain.“
I couldn’t stop thinking about this sentence. So I reached out to ask for more about the “screaming”. Anonymous 1 responded:
“I can hear shapes and colors, and sometimes I feel music in a very literal way. Like, slow adult contemporary stuff my mom plays makes me start itching and it makes my clothes feel too tight. The scream in my head works the same way. When I’m having a sensory day, it starts wailing away and makes it hard for me to maintain emotional equilibrium, until I lash out (either through SIB or by becoming verbally abusive to people around me). Similarly, if I’m put off emotionally by something, like someone being selfish, then the scream will start up until I’m scratching at myself and teasing the broken bones in my hand just to give myself a pain-stim that will shut it down.
“If I had to describe it, I would say that emotions are a sense, in the way that sensory issues work for me. They mix with the other senses, bleed into them synesthetically, and the integration issues for both emotions and sensory input have exactly the same process in my head. The act of both of them happening at once, where I can’t focus on just one or the other, produces the scream. Some days, I can clamp down on it and keep it in my head. Other days… meltdown. SIBs. Crying. Fighting with family.”
Anonymous 4 wrote: “I like to bite my arm. I know. It sounds weird, but I love the feeling of the shimmery yellow and blue and white sensation that flows down my arm. There is nothing like it.”
When I read this I thought about how easy it is to assume we understand until someone describes their experience and it is very different from what we assumed. It seems to me this is an important piece. I know Anonymous 1 and 4 are not the only ones who have this experience with synesthesia. Judy Endow discusses how she perceives words through the sound and movement of color. I have heard others describe variations on this as well. If ones neurology finds meaning in spoken words through movement, sound and color, it would stand to reason, emotions and sensation would be perceived this way as well leading them to do things that might cause those witnessing it as something to be stopped. I have to wonder how many, who are in the field of Autism are hearing these kinds of experiences. So much regarding autism comes from those witnessing it, people who want to understand, but whose own neurology may make it very challenging, if not impossible, for them to do so.