10:26pm January 9, 2012

➸ My world of random, incessant thoughts :): Can anyone explain this to me, and tell me if I am completely off the...

mumma-bear:

Can anyone explain this to me, and tell me if I am completely off the mark please?

Theres a little boy at my older childs preschool centre with really severe autism. He doesnt verbally communicate with anyone, and has very little interactions with people at all. In fact, he generally tries to…

Yes. 

There is a connection. 

I have an entire binder somewhere full of descriptions of such interactions between autistic people. Some of those descriptions are written by autistic people ourselves, others by people observing us.  But such descriptions truly are everywhere if you know where to look. 

There’s a lot of reasons you won’t hear about this a lot from “experts”. Here are possibly the top three:

1.  It contradicts established theories about autism. Such theories are that autistic people are autistic because of some kind of “social skills area of the brain” that isn’t working and therefore will never work even among each other. 

(Note: Plenty of scientific evidence contradicts this theory.  Morton Gernsbacher is a researcher and mother of an autistic boy who has taken such ideas apart very well. If you Google her, her website has papers on it.  And I’ve personally seen her son absolutely blossom around similar sorts of autistic people.)

2.  A lot of the time, nonautistic people miss social signals sent by autistic people. Both because their expectations tell them there are no such signals (and expectation colors what people perceive), and because some of our signals are hard to pick up on if you don’t know exactly where to look. So our communication often goes on right under people’s noses and they can’t see it for one reason or another. 

3.  Because this happens most often among autistic people with certain commonalities between each other. So you can’t just stick two random autistic people in a room and expect it to happen. 

An important note about that last one – the groups of autistic people with common traits, are almost never the same as the official diagnostic groupings. So it also doesn’t work to stick two people diagnosed with the same type or severity labels in a room together and expect communication. 

Like personally I’m diagnosed with autism.  Usually nobody uses functioning levels on me, but when they do they usually say something along the lines of “severe”.  At this point in my life. (Long story.  Assume absolutely nothing and you’ll be better off.)  The person most similar to me in the world is an engineer who is diagnosed with variously PDDNOS or AS (of the two PDDNOS fits better due to speech issues). Most people looking at her see competence and most people looking at me see incompetence.  But people who know us both well have asked if we were separated at birth because we are that similar.  Other people I find easy to communicate with include people with every severity label, every diagnostic label, every level of spoken or written language.  Other people I find impossible to communicate with span the same range. 

People like to say autism is about communication, social skills, and repetitive behavior. I prefer to say (and much research seems to agree) that it’s about sensory perception, thinking, and movement. All the social/communication/behavior stuff is someone else’s perception of an outward manifestation of the sensory/cognitive/movement stuff.  In my observation, autistic people who “click” with each other have some degree of similarity in sensory perception, thinking, and movement even if their behavior looks radically different to a nonautistic person. 

There are also lots of different degrees of clicking.  My friend Anne and I can communicate without even trying.  My friend Laura and I read each other reasonably well but have major, major differences. I’ve met autistic people who are harder for me to understand and communicate with than nonautistic people. (My brother is one of them, unfortunately. Just trying gives me a headache.)

Also one thing I’ve noticed is that it’s not just our abilities when at our best that determine these things. In many ways it’s our abilities at our worst. Or at least our abilities when at a normal comfort level. For me, I can write language very well at my best and understand language decently. However my baseline is no receptive language and minimal if any expressive language. That means that anyone who can only communicate by language will give me migraines trying to keep up with and anyone who expects lots of language will wear me out. Also, it matters how language is used. I unfortunately can’t describe that. It’s very subtle but important. 

In my sort of default state, the world is a lot of swirling sensory patterns with no ideas on top of them. I can sense and deal with those patterns very well. When I am around someone enough like me, there’s no requirement of language at all, we may not even appear to others to be interacting, but in subtle ways how we interact with our environment we are very much aware of each other. Other times we may interact more directly.

It’s often easy for me to see when someone will make sense to me. It’s like I have different depths of awareness of different people. Some I will see very minimal threads I can piece together, other people pop out fully three-dimensional and everything obvious.  And many stages in between.  

I remember shocking a group of researchers and family members by pointing out that they had to stop talking and help an autistic man fix his schedule because he was looking more and more overloaded and antsy. They were staring straight at him and couldn’t see it. To me out the corner of my eye his movements were more stiff and jerky. 

I remember another time giving a talk to a group of parents. A boy was wandering in circles around the room. He soon walked straight up to me and stared straight at my communication device for the rest of the presentation. They said they’d never seen him do that to anyone before. He wasn’t super similar to me but he’d clearly seen a commonality between us. 

I’ve seen classrooms full of autistic people with no ability to speak or type, who still clearly were interacting with each other all the time. Each of their files said that they never interacted with each other but only teachers. The teachers couldn’t see what we could see.

This is because the communication gap between autistic and nonautistic people is mutual.  Yet the blame for that gap is placed entirely on the dysfunction of the autistic person in the interaction. The reality is it’s two people with different perceptual systems, different thinking systems, and different movement systems. The misunderstandings go both ways.  When nonautistic children are taught to interact with autistic children, autistic children suddenly look more interactive. (This is an actual study.) It’s not because the autistic people suddenly learned social skills, it’s because the nonautistic people did. 

What I describe above is how it is for someone like me. It’s different for every person. I wish I could tell you everything I know (I’m the only person I know who actively collects information on this) but it’s hard. And I’m tired and ill and my brain hurts. But I felt it was really important to tell you what I could because very few people out there are told about this. It isn’t an absolute but it’s extremely common.

Also – link – Alien Contact. An article by an autistic person about subtly communicating with an autistic woman he met in the supermarket while the woman’s mother was oblivious. Reminds me of a time I met someone who circled around my table once to indicate noticing me and my rocking pattern instinctively changed in response, which she correctly took as acknowledgement. (We talked later. At the time we were both far too overloaded for using words.) Jim’s whole website has a lot of good information about how autism is experienced (by people like Jim) as opposed to how most people assume it works. 

And you’re right. The fact that this happens means a whole lot about autism.  It changes everything.  Most people aren’t paying attention but stories like this happen everywhere daily when two people just alike enough meet. 

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