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ASD and the importance of words & choice

I’ve said, in my previous post, that ASD children are afraid to make mistakes; they’re afraid to be wrong. They speak of the things that interest them because, in some ways, they feel secure in their knowledge - secure enough to talk. If they become comfortable enough about speaking - even if it is about their current obsession - they then develop confidence in the act of conversing, and since conversation itself is now familiar, it becomes a second comfort-zone from which they can then begin to tackle topics which are not as relevant to them.

I think this is true, on a vastly smaller scale, of anyone. Hold that point for a moment.

Two days ago, I wrote about communication, and this post, although it’s in theory about my son at age seven, ties in with comments made on that post, which was about two adults who were both working toward a goal of mutual understanding - when words alone were not enough of a bridge. The right words for me, in that post, were not the words that worked for my husband. He wanted to understand what I was saying, but the first several times, it didn’t happen.

I felt that I understood my son as well as - or better than - a raft of experts could. I lived with him. I observed him daily. But I’m also myself, and I come at things from the paradigm of my interests. Even the things I observe are coloured by me.

My son had a successful, if trying, grade one year. His teacher was a godsend. More. I can’t emphasize how much of a difference she made to my six year old. She had him for five and a half hours a day for ten months of the year - and everything she did during that time laid foundations for all of his school life thereafter. In my universe, she would be paid more than most CEOs. Sorry, that was a digression.

My son’s grade one teacher was worried about his grade two life. She made it clear to me that while he was extremely challenging, she liked him, and she thought that any teacher who understood him could work with him. Reading between the lines, I understood that there were no grade two teachers who were likely to understand him, and that that would be courting disaster. So: we were all anxious, to say the least.

But a funny thing happened. When I say happened, what I mean is this: the principal of the school, who I’ve spoken about before, pulled every string she could reach to hire an educational aide for my son’s grade two year. He was not there for the full day, but was there for 3/4s of it.

He was a younger man, Manjit Virk, with a quirky sense of humor and incredible charm. He worked with adult autistics outside of the school, and with some children with developmental difficulties as well. But he was assigned to work with my son in grade two, and we also asked if he would be interested in working with my son outside of the classroom setting, at least for a while.

He was, in part because he was curious about my son’s household environment. So the first night he came to visit, he spent an hour with my son - who I think found it slightly unsettling, because teachers/adults in the classroom did not normally show up to invade his home-time - and then another hour with us.

He knew about the diagnosis; he knew what my son’s theoretical difficulties were. He had a few suggestions about how we should attempt to arrange my son’s life; we had a few reservations. But the most important question he asked was: “If your son asks you about his diagnosis, how do you handle it?” Which made me blink. I said: “Honestly.”

His was silent for two beats. “You tell him?”

“Yes. It’s not a perjorative, and it’s what he’s going to have to deal with for the rest of his life. It’s not - to us - unlike having to wear glasses. If he needed glasses, would we make up excuses to spare his feelings? No. It would be ridiculous. There is nothing wrong with the diagnosis; the perjorative - if one attaches - would have to come from us. It won’t, and regardless, this is the hand he’s been dealt. If we hide it or attempt to sugarcoat it or make excuses for it, we’re implying it’s somehow shameful, and it’s not.

“We answer any question he asks as honestly as we can; there are some answers - like, say, group primate theories - that he can’t fully understand yet. But if he asks a question, we answer it to the best of our abilities.”

He nodded. He nodded, and then, he began to work with our son. Work, in this case, involved outings for coffee (to the local Second Cup), and a variety of word-based games - like Hangman. Mr. Virk was a fabulous story-teller. I watched him in the class a couple of times; he would tell stories to the entire class, and he was so engaging, all of the children would listen in the kind of rapt silence that makes a writer envious.

If my son did the work, Mr. Virk would tell a story. Woe betide any parent who interrupted the story-time.

But if the stories were the incentive, it was the work I found arresting, because Mr. Virk created word-games and exercises that were entirely about social interaction. I watched my son struggle with a game of Hangman, and saw that the word was a five letter word. Four of the letters had been filled out: they were T R _ S T. My little linguist and excellent speller was staring at those four letters and he could not guess the word. Mr. Virk was, of course, defining the word. He offered different variations on its meaning, as a ‘clue’.

Other words followed: Friendship. Cooperation. (Love was an easy one, for him, but that was one of the emotional words in frequent use in the house. Any of the parent/child emotional words were entirely familiar - but words like ‘friendship’ were not.) Most of his work with my son involved nothing but this accretion of social terms.

It had never occurred to me to do this. It should have, but it didn’t.

Mr. Virk also accepted the “we answer any question he asks as honestly as we can within the limits of his comprehension” and ran with it. My son asked questions of Mr. Virk that he had never asked of us. Those questions and answers folded into a growing ability to talk about social interactions that he had not had before.

I think this is in part because he was not familiar with, and not comfortable with, all of the words. We all have fall-back positions, we have things that are so automatic they’re like breathing - we don’t think about the mechanics.

(For years, he had a definition of ‘friend’ that I couldn’t quite understand; I couldn’t map it to any of his real-word interactions. I knew that he used it consistently. I just didn’t understand the way in which it was used. The use now is the more standard, social use - but the fact that I couldn’t quite figure it out then still puzzles me.)

Mr. Virk had, initially, suggested ways in which we could regiment our household, because in his experience with autism, that regimentation was necessary. Sadly, the Sagara-West household is famously disorganized, and our lives are pretty seat-of-the-pants; the stress involved in turning the household into a smoothly running machine would have, in my humble opinion, just added a different set of difficulties.

But he found, as he visited and worked with my son after school, that the chaotic household did not, in fact, cause stress for my son. So we talked about this, because it seemed so counter to his experience (and he had far more experience than I did).

My theory at the time - and it hasn’t changed - was this: Our household rules were a constant. Since any disagreement with my oldest son involved a two to four hour meltdown on his part, there were very few fights that were worth having; we chose them with care. They were pretty basic: don’t hurt other people. Don’t break other people’s things. If you can’t be in public (where this meant, outside of your room) without screaming and yelling, you go to your room and sit there until you can. Do not do things that will cause physical injury to yourself.

These rules, however, were applied across the household. If I couldn’t stop myself from shouting, yelling, or cursing, I went to my room. Seriously. I called it a time-out; I thought of it as a mental-health break. He understood from this that the rules were meant to be followed by every person who lived in this house. Or visited it.

These rules did not cover things like food, table manners, appropriate states of dress. They didn’t cover television or play - not directly. All of the small rules were evaluated through the larger ones. If he wanted to eat a piece of chocolate before he ate his meal, we let him. The idea that meal came before desert was irrelevant because eating the chocolate first did not a) hurt anyone or b) break anyone else’s things.

We filtered this way in part because that’s what he did. He filtered the social rules through the rules of the house. If they could not be made to mesh, he stuck to his own preferences. And we let him. If, for instance, we had the fight about the chocolate, he could very correctly point out that the personal preference did not inconvenience any of us, and that if we withheld the chocolate we were doing it because we felt like it, not because we had an explicit, rational reason. And this upset him enormously. And, frankly, it would upset me if someone did it to me now. We all like to have some say; we like to have a voice in our own lives. I don’t think this is age dependent. We might not want all the responsibility, but we want some.

I believe that this measure of control gave him a sense that he had a voice, and a say, in his own life. Regimentation of schedule was not, in fact, important if he had say in little household events. If he could speak and be heard, if his wishes - outside of the rules that governed everyone’s lives - were respected, it didn’t matter that he couldn’t predict everything by schedule.

I also don’t know that this would work for every ASD child, or even any other ASD child. Mr. Virk was dubious at first that it would work with ours, because, as I said, he had a lot more experience across the spectrum than we did. He saw children, adults, highly verbal and totally non-verbal autistics; he had a strong sense of what worked successfully, and what did not.

But he initially felt, meeting my son, that his difficulties were minor and that everyone was fussing for middle-class anxiety reasons. He came to understand, with experience at school & in the home, that the difficulties weren’t minor - but he said that our son was operating at what Mr. Virk felt was his ideal “high function” level. Which, he said, he almost never saw.

His work with our son developed my son’s understanding of the actual words, and defined their use, in a way that our lives with him hadn’t. My son asked Mr. Virk questions he had never asked us, and Mr. Virk answered them all directly.

The second grade, therefore, built upon the success of the first grade.

There is one element to that second grade - and the educational aide - that I’d like to talk about; it’s not directly connected to either communication or ASD interaction. I’ll talk a bit about that tomorrow.


( 9 comments — Leave a comment )
May. 25th, 2012 10:09 pm (UTC)
I'd love to know his childhood definition of friend, if it's something you can now understand and explain.
May. 25th, 2012 11:23 pm (UTC)
I second mizkit's comment.

Also, I like your house rules. My mom told me I'd have to pick my battles because there's no way any kid is perfect and I would kill myself trying to enforce perfection. This was way before any Dx. I did pick and choose, but now I wonder if some of the battles I did pick were the wrong ones. Even now, I wonder if the rules in place are the right ones.

I started reading to him every night when he was less than a year old and continued until he was 6 or 7 - yes, old enough to read for himself, but not the particular books he wanted read to him. By the time he was in kindergarten, his vocabulary was impressive and amazed some of his teachers.t I do wonder about his internalizations of some words - the context doesn't seem quite right sometimes.
May. 25th, 2012 11:47 pm (UTC)
Mr Virk sounds like a fine tutor and a fine person. And your approach is so clear and consistent and, well, decent.
May. 25th, 2012 11:59 pm (UTC)
I love reading these posts of yours. All of the coping mechanisms you talk about seem so common sense and obviously apply to anybody, ASD or not. I wish the regular school classroom situations around here were run with that same sort of thoughtful consideration. And the household rules are wonderful.
May. 26th, 2012 02:41 am (UTC)

These posts are really fascinating. Thanks for sharing your history with us this way.

May. 26th, 2012 05:39 pm (UTC)
It sounds like Mr. Virk is an outstanding aide/teacher, giving your son new tools, and picking up a few of his own.

I'm glad your son was so fortunate in his first grade teacher and his second grade aide. I hope that he'll have a continuous stream of good people to work with throughout his academic and professional careers.
May. 26th, 2012 06:51 pm (UTC)
As the eldest of 4 children, the youngest of which is my brother who was diagnosed with ADHD and PDD-NOS before the age of 6, I really enjoy these posts.

With respect to your household rules - they make a lot of sense, and I can see why things like "I want to eat dessert first" is something you can choose not to battle over since, as you say - it doesn't break any of your rules.

Looking back at our own efforts, we had lots of battles :) I've love to hear how you applied these rules to situations where your son didn't want to do something, like have his bath or get dressed/put his shoes on for school or participate in the day to day activities of helping out (setting the table, doing dishes, doing homework) - it seems we always had conflict, and the majority of it with my brother was getting him to do something that he didn't want to do, but that needed to be done.
May. 26th, 2012 09:31 pm (UTC)
Have you tried invitations instead of orders?
May. 27th, 2012 05:30 am (UTC)
A lot of what you describe sounds very much like how my parents approached our household (with the exception that rules didn't apply to dad). Mom chose her battles, and making me wear textures that felt like my nerves were being scoured with some caustic chemical, or making my sister eat foods that she had texture issues with (which included all vegetables; she insisted veggies were poisonous until you were 18 and would have a meltdown when anyone attempted to make her eat them. After awhile, Mom just supplemented nutrition in a way that that worked with my sister), or any number of things really.

It made a pretty significant difference, I think.
( 9 comments — Leave a comment )