So Far, a Year For Stainless Steel
Book Thinking

Spelling Out the Différance

At the start of the 21st century, it is expected that people can read. It is expected that, if they cannot read, they can be taught to read; it is just a matter of finding that right methodology, technology, curriculum, or glasses. 

I wouldn't go so far as to say that it is thought (assumed) that being able to read is equated with 'what makes us human' but truly, it is presumed that people read. In age of texting and touchpads, reading, it could be argued, has become more 'fundamental' than ever.

What would Derrida say? Writing is more entwined than ever with speech and thought. 

So there it is with Charlie. He keeps trying and we keep trying but reading eludes him. He knows the letters, mostly; he types them on the flat surface of his iPad keyboard, though still with a prompt from me so as to not confuse b and p and sometimes y  and v and w (u seems all right, for the most part). But I wonder why didn't the Romans make the letters more distinct. There had to be other choices.

The other obstacle, as Jim observed the other day, is the flat surface that is the way you encounter letters and text in our world, once you've left the preschool age and stage. And Charlie takes his blue blanket, his clothes, a paper towel he's used to wipe the counter dry of water, into neat boulder-bundles. 'So he can see them' was Jim's positing and he knows, Jim has a hard time finding anything for the life of himself and anyone's efforts at organizing him don't help. (The real solution: Be alert all the time to where he last left something, which could be anywhere.)

Charlie's always had troubled with 2-d. I stopped showing him cartoons when he was 5 or so, if not younger. I could tell he simply couldn't follow the movements (all those animated cells) before him; he looked away after a minute or less. From the time he was 2, we had noted that he had extreme struggles recognizing drawings. We used photos for his flashcards and the little square cards in his PECS and picture-schedule books (in the age, which was not long ago, before mobile phones with cameras were common -- how easy it could have been). Also he had trouble with depth perception, evinced in the time it took him to learn to get down a ladder on a play structure. Eye doctors have found that he has trouble with convergence, with getting both eyes to look at the same thing at the same time, especially if it is moving. But I wonder if it may be eaiser for him to something real and moving than a drawing. Cows, horses, dogs in pictures can still all look alike to him.

So there is no enmeshment, imbrication, of writing and speech and thought for Charlie or at least no writing. Of speech, we can't be certain because Charlie has little. I mean, I think Charlie thinks in words but I don't, can't, know for sure; maybe he thinks in musical phrases, or colors or shapes, or moving images?

I also don't think we can say how much he is bothered by his text-free way of being. Of course, it's another way his options are extremely limited as far as future work and learning and all of it. It does mean he exists outside of and beyond the reach of contemporary cultures to a degree that, I suspect, many think a tragedy and travesty but that means he is free in ways that most could not ever imagine. You can't sorrow about the usual litany of 'things autism means kids will never do' -- graduate from high school, go to college, graduate from college, get a job, get a place to live, fall in love, get married, have kids, provide grandchildren -- if you're not worrying about contemporary culture and, even more, belonging to it and trying live a fixed narrative.

And not to romanticize Charlie into the embodiment of Rousseau's 'noble savage' in all his Schillerian naïvité. All of this high-falutin'-ness is beside the point, the very cultural trappings Charlie does not have to learn to let go of -- commodification, reification, commercialization, Disneyfication. 

Words don't have to have anything with writing. They can exist as sound and phoneme, embodied only in voice and not set into the fixed forms of letters on a page. It means you've got have to have a strong memory or at least one that gets a lot more use because you're not setting things down on some physical entity, paper or rock or chalkboard, to remember. It means you're not going to study philosophy or not the tradition of it. It means music becomes much more important. I think it could also mean the sensory phenomena of the world mean more or don't have their meaning so overlooked and under-valued. Color, shape, placement of these and of objects and pattern mean not just a lot but possibly everything -- everything in your (immediate) environment means.

The  deferment and différance that define language vs. writing in deconstruction: Always a problem for Charlie about language, that words (food, names of people, places and experiences) can be said and there is a deferral, a pause, a damned waiting before the goods are produced and made present.

Over the years, I have tried to write things out for Charlie, such as a schedule of 'what is to happen,' to help (I hoped) for him to get through a day. It's has never helped, or not as I thought it would, or made things worse. I can't say for sure if Charlie understood what a column of words was meant to represent. If he got the idea of them supposed to serve as a stand-in for him actually having or doing or experiencing what the words said as I read them out, the lack of immediate and obvious connection between lines and swirls on a piece of paper and what they signified was a killer. It enraged and perhaps all the more so because he needed me, mediating and moderating with my voice and a deictic finger, to make the page more than lines. 

Homer might be a halfway point, or one for me, as Homer, whoever he really was or wasn't, knew and experienced his poetry -- epics -- without writing or certainly without any sort of ready access to it. I'm in danger of doing the whole Schiller naïvitizing thing with Homer -- but perhaps that's a sign of how we can't imagine a writing-less, reading-less world. Studying the things here around me, I'm getting a sense of the works and considering all the words there are to pour through in this early 21st century, it can be a relief.

Comments

Alice

Does Charlie like the plastic magnetic letters? My sons seem to prefer those to printed letters and find them easier to recognize.
I am curious how a doctor was able to test Charlie's vision. Did they do the usual kind of tests, or were they adapted for him in some way?

Kristina Chew

The doctor specialized in kids with disabilities -- unfortunately, she stopped doing eye exams. She used some of the regular materials for testing (eye charts) with numbers and letters and was able to put in drops and look at his eyes and retinas. But that was quite a few years ago when we went to her. I do know he has a very keen eye for tiny things on the floor (like a crumb) and can tell when a small object has been moved less than .0001 mm, or so it seems.

Charlie never really warmed up the magnetic letters or to others made of wood. Something about the letters and how they always change seems to be an issue too.

Karen Chiara Dito

..." if you're not worrying about contemporary culture and, even more, belonging to it and trying live a fixed narrative."

A thousand times, YES.

Also, have you read Andrew Solomon's new book? It is currently blowing my mind.

Tim

Kristina, Happy New Year to you, Jim and Charlie. I've been reading your blog for years now (i'm Tim, formerly of Miami, now living in Denver), and I always find your writing insightful and thought provoking.

Your family is always in my thoughts... wishing Charlie, you and Jim a great 2013!

mamacate

I love this. I remember reading Lacan and (a little) Derrida in college and trying to find a way that my mind existed without language. I could never find a way that mine did, though as I've gotten older I've noticed moments that are outside the code. Living with Henry, even if I can't see it my own mind, I know there is more to the world than signifying, at least the language kind (is there an autism kind? Is it language when it's not words?). I don't know if there's anyone engaging with these ideas in the context of autism (other than a couple of literary/philosophical autism moms here on a blog), and I know they're out of fashion intellectually, and I am not sure I'd want the Freudian/French psych(o) cohort abstracting autism anyway, but I like your reflection on the non-languaged world in an over-languaged society. And it makes me think about what we all can learn (and the risk of objectification that you allude to, that I even struggle with in this little comment).

Kristina Chew

@Tim, happy new year and wishing you more than well! I see your FB postings--

Kristina Chew

@Karen, there is plenty to worry about in raising our kids but often I feel a sort of sense of freedom, that there isn't a set path. Liberating, but a bit scary too!

I have been reading Solomon! Initially I felt dubious on starting it as Jim and I feel with Charlie it's more and more that he is "another branch from the same stock"; we see more and more every day that he is like us and connected to us, far from him being 'far from the tree.'

But I have been really struck by how much of what Solomon says speaks to my own experience with my own parents and larger Chinese American family, especially the part that has made more of its 'Chineseness.' Sometimes I think the alienation and different-news I felt from all that was a good precursor to wanting to be more accepting with Charlie and his differences. Jim had a similar experience growing up in a rigidly, devoutly, super-religious Catholic culture that brooked no patience with his ADHD and much else.

I would love to know what you think! I'm taking my time to read the book.

Linda

My wise mother-in-law said, (in response to a worry about out son) "It's HIS life".
Comforting to remember.

Linda

"our" son.
An "out" son would be okay, too!

Kristina Chew

@mamacate,

Thank you!

The MLA is holding forth in Boston as I type and, in my guerrilla reading of the program, I was not surprised to see autism with mention of some Simon Baron-Cohenish notions ('mindblindness') and cognitive science. The neurology of reading is on trend (as is, apparently, literature and genetics).

I don't know if you might have ever thought this with Henry: With Charlie, I have often thought, observed and experienced that the whole business of signifying is not 'natural,' as far as the way his mind works as much as I can determine. The whole division/deferment/difference between a word/verbal utterance and some concrete thing seems absent or not at work. It's as if there is none of that distinction (which has spawned an awful lot of literary and other theory) between the signifier and the signified.

At the risk of 'romanticizing' In the way you note, I suppose it could be said that Charlie experiences languages in the primal? 'pre-lapsarian' way before there was any division between word and thing. But it's hardly an idyllic state for Charlie as it means that (as illustrated by a 5-hour plus panic attack on Friday night on realizing that his school week was over after 3 days instead of the habitual 5), an utterance of 'school' in an attempt (on our part) to explain that he had 'school Monday' only led to more agony for Charlie, because to say 'school' meant that it had to happen, or had to happen on the next day to complete that 5 day routine.

So often I simply say nothing at such moments, in order not to, as to were, fuel the fires, woes and worries -- even an 'ok' or 'uh hmm' can be rather deadly, those count as words full of meaning to Charlie (who was able to sleep on Friday, exhausted by all that agony and anxiety and having knocked over a chair and screamed in a primal way expressing what a scream does, and then woke up on Saturday ready for his usual bike ride on the horse country trail almost as if there had been no such panic).

The screams were signified + signified altogether conjoined, meaning and sound one and the same. (they did not go on for long; emergency medication alleviates.)

Of Freud and Lacan, probably awkward to bring up but I think I'm going to, but in another comment!

Kristina Chew

@Linda, yes! And so the business or necessity of translating (we for Charlie, that is) is ever more pressing, given all the words in the world and how few he has to cope with it all -

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