8:55pm October 24, 2014

More about cognitive-emotional and sensory-motor autistic experiences.

I honestly think that this difference – this split – whatever it is, results in a lot of misunderstandings that happen among autistic people.

When first confronted by Tito Mukhopadhyay, Temple Grandin flat-out insisted he wasn’t autistic. He didn’t think in pictures, his biggest skills were in language, his main working sense was auditory, he had very normal thoughts and emotions in many ways, and he was completely different from the sort of person that Temple had been saying “autistic” meant. This is even though by that point she’d come up with the idea of regressive-epileptic autistic people, she still couldn’t handle the thought of Tito until she’d known of him for awhile.

I see that reaction a lot between autistic people whose primary differences from the norm are cognitive and emotional, and those whose primary differences from the norm are sensory and motor. (Or for that matter those whose primary differences from the norm are only in one area, like cognitive, and people whose primary differences from the norm are in another single area, like sensory or motor.) They’ve defined autism based on their own experiences and the experiences of those others that they are aware of, and they become completely baffled by the existence of people who are seemingly so different from them, yet also autistic.

I still believe a lot of the reason for these differences is allocation of scarce resources. We have only enough spoons to go around, and autistic people tend to dump them into one or two areas and drop them from all the other areas. This happens both between the broad categories (cognitive vs. sensory), and within them (within the sensory category, an autistic person may favor one or two senses over the others). Some of us make these changes on a permanent or long-term basis, and some of us adapt by changing constantly to fit the shifting needs of our brains.

And so many misunderstandings – so many “How can this person possibly be autistic, she’s nothing like me!” moments – seem to be settled around this.

And especially around the input-output differences versus the internal-processing differences. We all have differences in all of those areas, but for a lot of us one is more prominent than the other. For me, it’s the input-output differences that become really apparent. But those input-output differences, and this is where it gets interesting for all of us, end up shaping the way my internal processing works. You can’t have a sense working differently than normal without having cognition that is affected and often emotions as well. Same goes for movement.

If I had to rank it, it would be sensory above all, then motor, then cognitive, then emotional. I think. That’s right now. It could change tomorrow. But for me, motor and cognitive are blurred together – initiating a movement, initiating a thought, initiating a memory, they’re all hard in the same way. Which is why none of this is simple. Which is why even dividing this into categories can never truly convey the complexity of what goes on in our brains.

I remember a letter by Donna Williams describing ths beginnings of the autistic community, back when it was a mostly-offline thing with some online tendrils. And she talked about how the ‘aspies’ and the 'highly sensing auties’ were utterly and totally baffled and confused by each other. Their experiences just couldn’t compute, they didn’t understand how they could be so different, they didn’t even understand what their differences were.

There’s just so much… so much to explore, and I wish we were all exploring it together. Exploring what it means to be autistic. Exploring what our real experiences are – not what we’ve been told our experiences are. When I spoke to D.J. Savarese on national television, CNN tried hard to make it look like it was just D.J. being inspired by me. But they couldn’t quite edit out what we were actually saying to each other. Which was that D.J..was interested in political organizing What kind of politica organiing, I asked him. He said telling our own stories, as ourselves, not as what everyone else tells us we ought to be. CNN did not focus on that, because they were busy turning D.J.’s story and my story into something they weren’t. Oops. :-P

Anyway, I think this is important. I think it’s important to find out how we differ from each other, and how we are the same. In our own words, in our own minds, not just in the words of researchers and clincians and people who are supposedly more qualified to tell us who we are or who we ought to be. And while I don’t think “Kanner-Asperger” and “Regressive-Epileptic” are the way to go exactly… they’ve made a start, in my brain, towards something it was already starting towards, and that’s meaningful to me.