7:36am July 15, 2013

➸ Trying to find the right words: Lack of...

Much is written about fellow autistics, by autistics, which focuses on those who are overwhelmed by sensory input. Much advice is given on ways to navigate this world while doing as much as possible to avoid being overstimulated. This advice is good and needed.

Yet, you…

I’m also like… not sure how much the two are opposites the way they’re always presented. Because I’ve always sight out some sensations and avoided others. Or both at different times, or in different ways.

I honestly think the way all these things are usually framed (including the idea they’re opposites) comes not from autistic people originally, but rather from the people who invented sensory integration dysfunction.

And yes, I say invented. I’ve read a lot about the topic and what I’ve found is depressingly simplistic. It doesn’t come from experience. It comes from trying to apply intellect and logic to something that has its source in neither. It’s too damn tidy. Sensory seeking versus sensory defensive. Checklists of what constitutes each, for each sense. Lists that never, every seemed to fit my experience or the experience of anyone else I know. Solutions that don’t actually work for most people – and I know, I was in sensory integration therapy all through my eighteenth year, and my brother was in it from childhood with no discernible effect on problems that seemed more motor than sensory.

Autistic people adopted the ideas and the terminology because the creators of sensory integration dysfunction were among the only people describing perceptual issues in autism at all, while for many years mainstream scientists said (despite many reports) that sensory issues had nothing to do with autism at all.

In reality, autism is a combination of perceptual, cognitive, and motor at its core, different amounts and kinds of each varying by person. But the people defining autism still insist on defining it by its most superficial qualities and making up ridiculous theories that never pan out, making only the smallest concessions to sensory issues that autistic people have been reporting forever.

But never make the mistake of believing that autistic people’s self-reports are pristine and unsullied by outside ideas. I’ve read autistic autobiographies from over the years and they always reflect the theories the person was most familiar with, even as they also reflect our own experiences. Autistic people aren’t islands any more than anyone else, uninfluenced by our culture or surroundings. And our self perception is influenced by skill of those things.

Including influenced by each other, so that each autistic community emphasizes different traits over others. And also influenced by theories. Including sensory integration.

And sensory integration is one of the most ridiculous, oversimplified theories I’ve ever come across. Everyone force fits themselves or their children into its pigeon holes, but nobody really fits them a hundred percent. And a huge amount of what autistic people have to say about our sensory issues comes from that source unfortunately. Unfortunately because the real thing is much more complicated and interesting than anything cooked up by sensory integration.

And that includes dividing things up into sensory defensive versus sensory seeking, or hyper sensitive versus hypo sensitive. As well as considering them opposites.

If autistic people would really make the effort to disentangle our actual experiences, from sensory integration theory, and also from what we are used to hearing from other autistic people. Things would be both a lot more realistic and a lot more interesting. But it would require being able to detach experience from abstraction, and come up with words for those experiences independent of sensory integration terminology. Both of which can be very difficult.

But I seriously bet a lot of those people who only talk about hypersensitivity aren’t actually purely hypersensitive, they’re just repeating the things they’ve heard that are easiest to communicate. I’ve rarely met an actual person who fits into sensory integration theory nearly that easily.

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