I’ve just encountered two extremely different responses to the way my body moves on my videos, and they’re highly interesting to me in terms of who said them and what was said. It may have just made something click about what I see in other autistic people, versus what non-autistic people see in the same other autistic people.
A non-autistic person said that if she wanted to see an autistic person stim continuously for two minutes, she could just think back to her son doing “the exact same thing” all day long. She didn’t see the point of the video.
This is what Bryna Siegel, an autism “expert”, has to say about these kinds of movements:
Some repetitive behaviors that look odd an an older age would have seemed more typical at an earlier age. In treating some overly repetitive behaviors, the same approach can be taken as with some persisting undesirable behaviors in typically developing children, like a seven-year-old’s sucking his thumb, or a four-year-old’s still in diapers. The parent can just set things up so it is more rewarding to stop the behavior, and less rewarding to continue the behavior. This is what “redirection,” moving a child to a nearby, acceptable, alternative activity is all about. Sometimes parents ask if it will be harmful to make the child stop flapping his arms, staring at postured fingers, or tapping objects held to the eyes. I’m asked, “Does he ‘need’ to do it?” The answer really seems to be “no.” The main reason to stop some stereotypies is that (like thumb sucking) they may have a self-satisfying quality that tends to promote withdrawal from the rest of what is going on around the child.
By contrast, two autistic people said they saw something very recognizable in my movements in the videos, in that they seemed to be intelligent rather than random. One of them added that my mannerisms made no sense with the sound turned off, but with the sound turned on, they were clearly integrated with the sound.
While the idea that these movements are voluntary was incorrect on the part of one of the autistic people watching the video, I know what they were picking up on. I physically — through my body — get into the pattern of what is going on around me, including but not limited to sounds. My body movements are not random events tied to nothing, but are a pretty complex automatic system for dealing with, among other things, sensory input. I’ve found over time that hindering them, in addition to being impossible to sustain (and more and more impossible to sustain over time, for that matter) is a bad thing for understanding my environment.
Two autistic people viewing the videos picked up on the pattern behind this, and said so in rapid succession a few minutes ago. While these movements are non-deliberate (and the non-deliberateness can lead even an autistic person to assume there’s no point to them if that’s what they’ve been told), the idea that they are intelligent in a sense is probably right — they are not random, they are not tics (I have tics, these are not tics), they are in a way complex physical expressions of my surroundings. I don’t think “I’m going to do this now,” but they are actually a physical part of my thought processes.
But what’s interesting to me in all this is that it’s autistic people who noticed. I notice these things in other autistic people, and it’s one of the reasons I find it so hard to understand other people’s assumptions about us. I see autistic people reacting in complex and detailed ways to their surroundings, and I see a pattern. This is totally the opposite of how other people (some autistic, some non-autistic, but more non-autistic percentage-wise I think) perceive how we move, as far as I can tell. So much for the “purposelessness” of autistic behavior.
I wonder, if I saw the son of the woman who said that her son used to do the exact same things as me all day long, if I would find his movements totally comprehensible rather than “symptoms” of something.