12:01am June 12, 2012

➸ chavisory's post-it notes: goldenheartedrose: ceilingvriska: While I love my little brother with...

youneedacat:

chavisory:

youneedacat:

feliscorvus:

goldenheartedrose:

ceilingvriska:While I love my little brother with

Funnily enough, it sounds like both of you had better early expressive language than I did.

I didn’t speak at all till age three, not even in echolalia. Though the basis for my supposedly not being autistic was that I understood everything that was said to me. My expressive language was incredibly poor up until I was a teenager, but my receptive language was always very good…though incredibly buggy and idiosyncratic.

And so, dear OP, this is how lots and lots of people have gone a very long time undiagnosed with autism that we actually had, back in the 1980’s and earlier, when incidence was supposedly something like 1 in 10,000. They were just willfully ignoring the vast majority of us, out of misinformation, false stereotypes, fearmongering, ignorance, and bigotry about what autistic people can and can’t be capable of.

I mean think about it. There was a time when only 11 children in the US were diagnosed with autism. That does not mean that only 11 children in this country were actually autistic.

Yeah. Probably. Although I’d say superficially better — actual percentage that had anything to do with what I was thinking was extremely low. That’s a common pattern with bad receptive language. Where if you do have expressive language at all, it’s intensely messed up.

And then by the time you’re old enough to understand things, your brain has already laid down pathways for speech (and sometimes writing) that have nothing to do with communication. So then instead of just learning to connect meaning to words, you also simultaneously have to force out of the way everything you’ve ever learned about words. Which is like trying to wrestle into submission a greased pig made out of language.

The good part though is that even if you can only fake communication, you get taken more seriously than someone who can’t talk at all. The bad part is you still can’t say what you mean, or not consistently or often.

Apparently the sucky receptive/highly echolalic expressive thing is a common thing with hyperlexia. It also seems tied to a bunch of other cognitive traits I have in common with feliscorvus, Donna Williams, and others. And the greased pig problem is one of several reasons I can’t use speech to communicate. (I think Donna compared it to trying to tame a wild stallion. Versus trying to urge forward a stubborn horse that refuses to move, which is more conventional speech delay. They’re both damn near impossible at times, just in different ways.)

Funny—my persistent metaphor, not just of speech but a lot of things, has been of dragon-taming.

I finally read Nobody Nowhere, btw. I didn’t identify with Williams much at all in her descriptions of early childhood, but I did immensely so in her late adolescence/early adulthood. And her descriptions of meeting another person who works like you for the first time—heart wrenched. It never gets old, hearing another person describe your emotional experience with simple perfection.

I read that book right as I was getting diagnosed. And it was like, from the first page, I was going “Holy shit. This can’t be real. Real books never have a single person like me in them. Ever.”

There are some aspects of my life that differ greatly from hers, including the way we interpret autism. But I’ve still rarely seen a book that summed up the experience of my early life better. The total confusion, disconnection, sensory chaos beyond even comprehending stuff, trouble connecting up to symbolic thought, trouble understanding language, trouble understanding everything, extreme sensory intuition stuff, connection to music and movement, terror of even existing, visual processing issues, attempts to escape ourselves, echolalia and unusual use of language and its development into real communication (and she talked even earlier than I did – echoing her grandparents having a whole conversation in their voices), her self injury, knack for perceiving things others can’t, severe chronic pain from an early age, ability to sense things about people and things that is more reliable than analytic thought, and all kinds of things. The structure of our lives was very different but many of the building blocks (including things other than autism, as well as what I’d consider basic type of autism) are quite similar. In other of her books, I found out that there were a lot of cognitive shifts and milestones (not the official ones, more like autistic developmental milestones nobody has written down) we hit around similar ages.

None of this is to say that I always even close to agree with her opinions about a lot of things. But I always found that on the level of direct experience of the world and of autism, she was very easy to identify with. My favorite of her books is actually Not Just Anything. There’s two quite different editions, one large and red, one purple or blue or something in that neighborhood. It’s poetry. I also quite like her DVD called Blah Blah Blah, going into her early language development and giving a few strategies that help with communication.

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