February 27, 2005

Newsweek on Autism

The latest Newsweek cover story is on autism, and though the link goes to the front of the main article about the early signs, there's a series of three other articles available in a 'Related Stories' sidebar midway down the page.

The story about a nonverbal autistic adult who communicates through typing into a device similar in nature to the one Stephen Hawking uses seemed particularly interesting. She describes how her mind "began to wake up" when she discovered typing, and she's quite responsive in writing even though she can still only speak a few phrases.

I've never been anywhere near as hampered in communication as that, but I can very much relate to her descriptions of shifts in her own consciousness after happening into a frameshift that finally let her order her perceptions of the world. I was sort of hyperlexic when I was young, and you can surely still pick up the traces of it, but it ended up being a very good mask for the fact that I often had no idea what was going on around me.

There were a lot of words I knew how to say, but in addition to not understanding nonverbal cues from others very well, my sense of time was messed up in ways I can't quite explain even now. I had an arbitrarily shaky grasp of the order certain events had occurred and where or with whom a given memory was properly connected up until I was a preteen, at which point this gradually began to resolve itself. Things I read would stay clear, and there were times when there was no disorientation at all. Then sometimes it would all just get jumbled up horribly, but based on how people in my family reacted, the inconsistency seemed to give more of an impression of selective and perhaps purposeful inattention.

That's possibly what made my arcane personal rituals so relaxing to me. (Monk is one of the few screen characters that I particularly identify with.) They were something I could focus on, done at my own pace, and they sorted my days into manageable blocks. I still lose track of time very easily, and will probably never be rigorously punctual, but the sense of disorientation is pretty much gone now.

What it seems finally helped me sort out a frame to relate to the world was the science fiction and fantasy books I read obsessively from as soon as I discovered them. Because they're set in an imaginary place for which only the author has a frame of reference, the rules of social structure, organization and strictures on personal interactions have to be explicitly spelled out at some early point. You aren't left guessing what things mean because the author assumes in the beginning that, of course, the reader can't interpret these things in relation to a place no one has ever been.

Obviously, the authors of fiction novels usually build on something in the world of their experience, but the lack of explanation made much of that inaccessible. I didn't know what I was missing out on seeing, and my assumption would be that most people assumed I was just deliberately ignoring signals that were perfectly clear to everyone else. I lived in a world where things happened for no reason that I could see, and you can't build a useful internal model of how things work based on unexplained gibberish.

Through these unintentional parables, the rest of the world slowly began making more sense. I still enjoy fiction, but I no longer cling to it like it's a roadmap through hostile territory.

The other thing I wonder about is how common it is across the spectrum of autism and related conditions to have such a heavy preference towards written communication. The autobiographies and self-descriptions I've read tend to make me think it's extremely pervasive.

The difference is something anyone can verify in their own experience, but I expect that most people have roughly similar fluency in spoken and written communication. Still, it only takes a minimal amount of self-observation to prove to yourself that different machinery kicks into gear depending on whether you're speaking or writing, or to know how different words can seem from thinking of them to saying them out loud. Even in the mainstream of human experience, it's well established in every culture with written language that writing and speaking have linquistic conventions almost different enough to be dialects.

What is it about this machinery of spoken language that seems to trip up autistic people who understand much more than they can say? Again, this hasn't been nearly as severe a problem for me as for many others, but I do notice the difference. If I've written about something, it's so much easier for me to talk about it clearly, those words and patterns become readily accessible to me. When I hear people talk I understand as well, I think, as anyone else. But if it's a complex or new topic, I have a difficult time speaking about it unless I write it down or write about it on my own, regardless of how well I understand what's being said.

It feels like the act of needing to speak shuts off certain pathways, and if there isn't anything handy in what my speech center can access, then I am seriously out of luck if I don't want to freeze or need to say things that won't make me cringe later. Before I started interviewing people for the blog, I'd always just put it down to shyness, but it's different. I've never really been afraid of being around people that I don't know, I was just very, very bad at responding verbally for much longer than most people seem to be.

Probably explains why I do so much better in school now, having finally acquired the habit of taking extensive notes. It's likely quite common for people to remember better when they take notes, the advent of the written word decreased the urgency of committing everything to memory along with the cultural machinery for memory training, but I'm not sure how common it is for people to need to write something down before they can easily use it in a conversation.

Though this gives me an idea for a new project. Maybe it would correct my (lack of) casual conversation skills if I started writing down random phrases from other people's casual speech. You know, TV dialogue and loud conversations in the hallway at school, or things I remember people saying to me during the day. That might just be the ticket to sounding completely normal at long last.

Posted by natasha at February 27, 2005 12:16 AM | Health/Medicine/Health Care | Technorati links |