Neurodiversity Is More Than Skin Deep (#543)

On the #1 downtown train, the three young women were dressed to attract attention. Two were wearing strips of various colored fabrics and/or scarves tied around their heads, thights, waists, etc., along with gaily painted cheeks and eyes in kiddy-carnival colors. One had a large cardboard D around her neck that said “Toto” (her “dog collar”?). The third, who kindly moved over so I could sit between her and Charlie, was clad all in black, with appropriate urchin-like rips and holes in her footless fishnets, and some manner of black cloth in her hair and Goth-ish make-up to match
Subway stairs
Charlie paid them no more heed than he usually does strangers or, indeed, than anyone else in a semi-crowded subway car would. And as the train clanked on, the thought occurred to me about how invisible “diversity,” “difference,” “neurodiversity” can be. Is.

Charlie’s learning differences run deep. I prefer not to call them “deficits” or “impairments.”. It is the case that ABA has proven to be the best method to teach Charlie, and ABA of the fairly “traditional,” strictly structured sort. We have done Verbal Behavior and Natural Environment Teaching and, to some extent, both Charlie’s school and home ABA programs incorporate these other techniques or methods. But the basic ABA principles of discrete trial teaching (in which learning tasks are broken down into components) and of positive reinforcement (in which the ratio of positive encouragement is heavily out of proportion with the tasks Charlie does) have remained key to his learning. (We did had a period of trying to teach Charlie less and less with ABA, a few years ago.) At this point, Charlie’s school and home ABA are thoroughly individualized to him and his particular processing and cognitive issues.

And I have to say, I would rather doubt that anyone in the subway car had been taught in the manner in which we teach Charlie, and the reason we have created this whole teaching apparatus of prompts and flashcards and token boards and “the language matrix” and data-taking on and on is because of Charlie’s neurological profile. The difference of Charlie, if you will, is on the inside and no face painting or colorful scarves tied onto various parts of his anatomy are necessary to be “different.”

Jim and I do think, more and more, that Charlie was born the way he is—was born autistic. I love everything about Charlie and yet it is apparent how his neurological wiring does not make things easy on him. For instance, last night Charlie did not fall asleep until 1am. He was tired and went to bed before 10pm and all seemed quiet in his room by 10.45—-then we heard his voice and when I went in the blankets were strewn all over and the sheet half pulled out. I tucked Charlie back in and sat quietly with most of the lights off; he rocked and rolled and, a little after midnight, suddenly got out of bed and ran up the stairs and around the house, chattering at full volume. At 12.45am I heard him crying and went in to pick up a pillow that had fallen to the floor; Charlie seemed frustrated that he could not, try as he might, sleep.

Charlie was not easily roused this morning but still made his way to the bus and to school and two hours of ABA. He was all smiles to see his two therapists, grinned and lay down on his bed when one teased him “you’re crashing, you’re so tired” (his eyes were drooping) and when he got a piggyback ride from another. Afterwards, Charlie and I drove to the train station and met Jim and one of his graduate students at Penn Station and Charlie got one of his favorite dinners, sushi and frozen peas from Whole Foods, all of which he munched away sitting in an ergonomic swivel chair in Jim’s office.

Charlie was quiet on the ride home (curiously dressed young women on the subway and all); it is nearing 1am now again and he is again not asleep: It is usually the scond night after he stays up late that he is completely fatigued and, indeed, crashes.

A little different neurology can go a long way; can certainly make for one fine boy to ride trains with, and with whom to admire the bright lights of the city.

13 Responses to “Neurodiversity Is More Than Skin Deep (#543)”
  1. DeeDee says:

    sleepless nights here too. it’s seasonal for my son. and for me too, and not just because of him. it’s hard for the mind and body to rest when there is so much going on every day.
    merry christmas kristina

  2. So you would program Charlie not to be a Goth?

    Maybe Goth dressing is a statement, I am not sure about Moondog and his Viking garb, it was his very difference that led him to dress in a way he obviosly thought was most suited to him.

    I don’t dress as I do to attract attention, he said, I attract attention because I dress as I do.

    I remember in a pyscology class, a discussion about conformity and whereas I thought I am a non conformist, I was told I am conforming because I was wearing clothes. Well really!?

    I wear my hat because it is funtional and I would rather not wear my shoes when they are not.

  3. Lisa/Jedi says:

    Brendan is well aware of his differences,so I suspect that he does not dress flamboyantly in public because he doesn’t feel the need to assert that he’s different 🙂 When he does dress up, it’s to express ideas & images of the stories he writes in his head & wants to act out- lately he’s been making ninja gear out of k’nex & is impatiently waiting for school break so we can make his new wizard’s robes.

    Sleeping-wise, it never ceases to amaze me that, when he’s had a spell of wakefulness or early-waking, he never shows signs of fatigue the next day. It has become a bit of a joke with his teachers- we’ll warn them that he didn’t have much sleep & he’s just fine at school 🙂 Sometimes it feels like an internal re-setting of his clock (or something…).

  4. Danni says:

    Sammie had a bad night last night (well, bad for us ;)). She normally stays at her nanna’s on a Friday night, but at 1.30am nanna came around telling us to pick her up as she was wide awake. It was 3am before she went to bed (and that was only because mammy went to bed too).

    She was always such a good sleeper as a baby…

  5. I don’t like the assumption — at all — that dressing a certain way is meant to assert difference or attract attention.

  6. Eva says:

    Everybody is talking about some ways of therapie for autistic people. I had further training on TEACCH and I announce for further training on ABA today. Be glad to live in the USA. All these therapies are hardly known in Germany, but I try to learn a lot about them for my pupil.Lots of greetings!

  7. zilari says:

    I agree with Amanda here…I didn’t realize until I was 25 years old that some people actually DID dress primarily to get the attention of other people. I’ve always worn things according to comfort and the fact that I like them. And for some people, clothing is like wearable art; you do it because you like the way you look in it when you look down or in the mirror.

  8. Charlie, as far as I can tell, seems to care little about what he wears—shirts with varying lengths of sleeves and pants or sorts in the summer. He does have a preference to blue, green, and orange shirts, but that’s about it. If he desires to be a Goth, so be it….

  9. you know what these bloody blog accounts more often than not I write my comment and the bloody system throws a wobbly and rejects my post.

    Oh well I shall try again.

    I was saying my Landie is not a car I drive to be different but because I cannot tolerate post 1980 cars that are a lie, they consume more of the erths resources in there hidden production costs and technology than something simple and repairable like my landie does.

    Any way clothes, so what my brother dressed like a Goth long before the fashion was ever herd of.

  10. Sorry about the “lost comment”—a few nights ago, I lost an entire post right as I was going to hit “publish.” Growing up next to Berkeley CA, saw many different styles of dress/ways or being; then there was the man (performance artist?) who wore a jumpsuit, cap and backpack all done up in white and red polka dots. He used to lie in the middle of Sproul Plaza and bask.

  11. Danni says:

    I very rarely wear proper clothes- I spend most of my time in my pyjamas as they’re very comfortable. I even go shopping in them (at midnight when it’s quieter).

  12. Julia says:

    I dress how I do because it’s comfortable and people close to me who care how I look have advised me on what sort of clothing to have in my wardrobe. I would think nothing of being on the subway with a friend dressed in a goth-like manner, nor would I think anything of being on the subway with a friend in a desiger suit.

  13. Clothes maketh not the person, it seems…..

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