Michelle (msagara) wrote,

Things about my school-age ASD son prior to JK.

Before I continue, I want to offer a PSA. The next few posts will likely be about having an ASD (Autistic Spectrum Disorder) child in a system in which a new principal was hired to completely squelch all problems with bullying. She was enormously successful, and in part I'm aware that my son's school experience was radically different from the experiences of many, many ASD children entirely because of the way she ran her school, dealt with the parents of her children, and supported her teachers.

But I can understand that as this isn't what I normally post, people might have zero interest in it, and for those new to this LJ because of the previous posts on reviewing and entitlement, I do apologize in advance.

There are reasons my son had social difficulty. Understand that everything I'm saying at the moment we learned by trial and error and a lot of observation, because that's what we had at the time. At a certain stage of development, children really do think their parents know everything. This ends sometime between the ages of two and three for most neurotypical children, and at three and a half most children understand that this is not, in fact, the case.

My son did not develop this awareness until he was seven, going on eight.

I'm a writer. I'm a reader of SF and Fantasy. One of the things I've always loved about SF and Fantasy of a certain kind is the way the authors develop aliens and external cultures; they posit certain changes and then they work those changes through their characters, from the ground up. If they do it well, the character feels like a product of the culture. I loved those moments in books in which a totally made up word or phrase became fraught with meaning, and ultimately moving, because I had read that book, and had come to understand what those words meant. It was like going on a journey.

What I didn't expect was that those thought experiments would prove invaluable in the raising of my own child. But in their own way, they were, because my son didn't understand that the world couldn't read his mind. He didn't understand that what he knew, the events that occurred when we weren't around, weren't actually somehow transmitted to our parent-group-mind.

If you know, however, that your parents do already know everything, there are certain conversations you don't have with your parents; they're irrelevant at best. So imagine Michelle, trying to think like her child all the time. I mean, all the time. What does the world look like to an ASD child when that child believes that everyone knows everything he's experienced?

Probably pretty bad, actually. Take the example of the incident at school. My son did believe that the teachers knew he was being hit or picked on. He hadn't said a word about it, because he knew they knew. He was aware that every household had slightly different rules, and that made sense to him, because every house belonged to different people. But in school, the rules he was beginning to learn? That the teachers didn't care what happened to him. The fact that the other children told the teachers didn't mean anything; what he saw was: he gets hurt, the teachers don't care. He hurts someone--anyone--back and he gets the timeout.

What he was teaching himself, absent the understanding that the teachers did not in fact know what they couldn't see and he hadn't told them, was that he didn't matter. That the rules applied only to him and never to anyone else. They were unfair and he couldn't do anything about it.

This made him angry and upset, because this was so unlike the environment in which he lived. It was also, of course, untrue, but from his point of view and in his context, it was also true. In large part, our parental understanding of this came from considering - and constructing - a viewpoint based on the axiom. My husband and I would talk about this, stretch, test, apply our possible outcomes with his actual behaviour. Sadly, I'm not making this sound like fun. We didn't have lab notes or books; we didn't take physical notes. But time and again, we looked at possible outcomes of various decisions, stretching from Right Now to as far as we could see.

No one teaches us how to parent. It's very much a trial and error effort, and we frequently fall back into familial patterns with which we're familiar. We attempt to avoid all the pitfalls that scarred us in our own childhood--and doing that, we're probably bending over too far in another direction, invisible to us, that will cause scars in entirely new and different ways. There's nothing as deeply, viscerally important as the emotional and physical well-being of our small children, and out of that stress, many other factors become infinitely more stressful.

What did I know about my son by the time he had finished junior kindergarten?

He required consistency. I don't mean that he required religious consistency: If he woke up in the morning, he did not immediately need to see a purple shirt, or wear black pants, or eat certain breakfast foods.

No, he required consistency of household rules. By the age of two, if he had a meltdown, he could scream uncontrollably for hours. This was not, as you imagine, a great source of joy. But it was also not entirely voluntary; that much was clear. We learned to see it coming because if we could head it off early, we could curb it. If we couldn't, nothing brought him back; we had to wait it out.

So oddly enough, we chose our fights. No hitting people. No taking away their toys. No deliberate destruction of anything that isn't yours. i.e. do not harm others.

Inherent in consistency, however, are a set of rules that everyone in the household follows. Everyone had to adhere to those rules if they were to make sense as rules on their own merit.

For my own part, I also had: questions deserve answers. Any question that my son asks, I will answer to the best of my ability to explain at the level of his ability to comprehend.

You will notice that blind obedience is not actually listed in any of that, because it was never part of the household. My son had a ferocious imagination, of which only glimpses emerged. He needed to know what the rules for everything were, and what they were based in. Obedience for its own sake, in any situation, always implied threat, to him. Always. So "Because I said so" was literally (and to the amusement or disapproval of others) never said in our house.

Was this easy? Why no, no it wasn't. But the long-term results of imposing behaviour from above would not have been helpful to my son. So we didn't. And better yet! We had to abide by our own rules.

We did not, however, have to be perfect, because I explained to my son, always, that everyone--mommy, daddy, baachan, jiichan--has a bad day now and again. What I could not do, ever--and I know this because in a fit of tired, stressful near-withdrawal I almost did this once--was blame my anger on his behaviour. Or more precisely, I could not blame anything I did in anger on his behaviour.

I could be angry about his behaviour and I could make it clear that it had angered me--with words. I could not then do something--shout, scream, throw a hockey-stick off the porch (don't ask)--and blame the result of my anger on him.

Because that would be a game-changer, and it would be a bad one. So, if I did lose my temper and throw a hockey stick off the porch, I would then say "Mommy should not have done that. She needs a time-out." And I would go upstairs and sit in my room for twenty minutes trying to breathe. Which meant twenty minutes of peace and quiet, not a bad side-effect.

This, however, he understood. He could understand that I could get angry. He could understand that I could lose my temper. These are both things he himself experienced. I could not, however, without visible consequence, act out on that anger--because it was not acceptable for him to act out on his anger--without a timeout and an acknowledgement of my human fallibility.

So, he understood what the rules of the house were.

My sister also taught us both something important--entirely by accident--when he was less than a year old. She had a phrase that she sometimes used, and while she was changing him one night--and he was screaming because he totally hated to be changed--she said, loudly, "Okay, nephew, here's the deal. You are going to stop kicking and screaming, I am going to change you really quickly, and then we will go back outside and play with the cat."

He stopped screaming. She changed him in two seconds. She took him outside.

We were a little in shock, because we hadn't expected this to work. But…it did. She had her "here's the deal", and it became a phrase that I also began to use frequently. It was used for very specific circumstances, and applied to things that we considered normative preferences, but not rules. For instance, sometimes he wanted chocolate before dinner. He knew that chocolate wasn't part of dinner, but he wanted a piece, and he knew it wouldn't actually affect his appetite.

If we said no, it was a matter of our preference, because it clearly made no difference to safety or dietary functions. In his mind, we were then forcing our inconsequential preferences on him for no reason; it felt totally arbitrary to him. Arbitrary was always very difficult for our ASD child. So, this would be an instance in which we would compromise. Which is to say, we would let him have a piece of chocolate before the meal, and he would then peacefully eat the rest of the meal. He felt his desires were being considered (he gets a piece of chocolate) and felt that ours were being considered (not the whole bar, and he eats his dinner).

So, he required consistency, and he required some semblance of say or control in his own life. He required an explanation of what was about to happen, if something bad was about to happen. He hated an abrupt change of state. If we said "We're leaving now", no matter where we were, there was going to be Upset. If we said, "We're leaving in fifteen minutes", and then "ten minutes" and then "five minutes", there was no upset.

I think that at an early age, my son familiarized himself with a terrifying and non-sensical world by feeling as if he had some control in it (negotiation), and by requiring his endless explanations of everything (knowledge).

Had he not been able to do that? We would have probably had to schedule his whole life, the way ASD children's lives are often scheduled, because I think ASD children can substitute predictability and certain knowledge for control and safety.

Let me try that again. If you believe you have some say in your environment, the environment does not have to conform to all your expectations in order to feel like a safe one. If you do not believe you have any say, and you do not understand your environment at all, you will live in terror of every single little perturbation or deviation because you don't know what the results will be.

It is therefore vitally important, in all negotiations, to honour our side of the bargain. A child like my son, who agrees to a compromise, cannot have it broken willy-nilly. He requires honesty. If I fail to live up to my obligation, he will learn that he can't trust me.

If he can't trust his own parents, there is nothing that he will trust. And in the literal mind of an ASD child, there's not a lot of wiggle room. If you tell a neurotypical child never to lie, they might still understand why you said the burned remains of an aunt's desert were tasty. If you tell an ASD child not to lie, you'd better have made clear exactly what all the exceptions to this rule are--and why the exceptions exist--well in advance of using them.

I'm sorry this is so long, because I'm trying to do two things here, and I think I should probably have split them. Let me close with a list of things which made social interaction for my ASD child very difficult.

1. Laughter. Many children know what it means when someone smiles or laughs. My son knew what it meant when people he knew smiled or laughed. But in his logical mind, because we frequently laughed at different things, he had to learn what each particular case of laughter meant. He didn't generalize the idea of laughter and superimpose that generalization on other people.

2. Gender. Gender is actually frequently difficult for all small children. For my son it was difficult until about grade 3. What happened in grade 3? The girls all got tired of being referred to by male pronouns -- which he used for everyone, including his mother and his grandmother, even though he knew we were female. The second pronoun had no practical use for him because differentiating gender was something that made no sense in the context of his life. Since he had to learn individual behaviour individually, the dividing category had no meaning. People were already strange enough. He could tell you were female if you had breasts. He initially tried the breasts/long hair identifiers, but too many adults had long hair and no breasts, so that one didn't work.

3. Greetings. When my son was in grade one, he was invited to a birthday part. It was a class birthday party, so all of the kids were invited. He wanted to go. He was afraid to go. So I went with him. He was sitting in the hall taking his shoes off, and four of the kids came out to the hall (one of them shouting, "Hey, Daniel's here!" They all said hi, and…he didn't hear them. It was not until the end of the grade 2 school year that someone could shout "Hi Daniel!" and actually have half a chance of getting an answer. Often by the time he'd processed the words, they were out of sight--but not always, so sometimes, by the age of 7, he could turn and shout "Hi Andrew!" at their disappearing back.

The birthday party, however, really drove it home for me. I knew he felt lonely and isolated. But I also saw, with my own eyes, that these kids were trying to be friendly. A normative child probably can't take much of being totally disregarded, and without someone to explain that my son can't actually hear them while he's concentrating on something, they're going to give up. So I was heartbroken for him, because I realized his sense of loneliness wasn't only because kids were ignoring him or shutting him out; they were trying. He simply couldn't process it in time.

4. Extreme over-focus. There is nothing my six year old could not tell you about Age of Empires. Nothing. Sadly, there is also nothing he wouldn't tell you about Age of Empires. Nothing. He could talk about that game for four hours on end. Some common ASD wisdom dictates that parents should break this habit of over-focus. We didn't elect to do that because he was so engaged while he was discussing things he loved, and we reasoned that if he was willing to engage and talk about things he loved, he would gradually be able to wait his turn to speak, and to talk about things that did not engage him as much. And this proved to be true.

In a speech therapy class I attended for other reasons--which was actually an ASD children class, with both children and parents in attendance--most of the children did not speak, although they could. They answered yes or no. One of the parents asked me how I'd gotten my older son to talk, because by the time he was ten years old, he could have a reasonable conversation (and did, with one of the woman who helped teach the class; they taped him because she thought he was such a blast). I told him we let him talk about whatever interested him in the early days. He said that when his son started to talk about his obsession (weather and firetrucks), they would cut him off because it 'wasn't normal'. I hate those words, by the way.

I pointed out that it was only for the sake of sharing things he loved that his son would try to make the effort to speak at all. And only by sharing would he learn that there was pleasure in conversation with other people. The father was really surprised, because it had never occurred to him to make that connection, and because he was trying so hard to do what was right for his son ( by helping him to be normal), he wasn't allowing that initial rush of shared obsession to flower into something larger.

But, I will admit that this kind of endless drone does wear on other children, and it does make it harder.

5. Melt-down. When my son was just under the age of two, he could throw a tantrum that would last for hours. We would put him in his room to time-out, and we would wait it out--but it was difficult. He very seldom did this, however; it was always over a perceived injustice on our part, or after a period of intense stimulation. We couldn't travel with him at all. Even as an infant. He could spend one night away from home, but if he wasn't at home the next day, he would hit his limit and scream his lungs out.

I went to one convention with him at ten months of age, and I had to take him into a room and shut all the lights off and hold him tightly while he screamed in my ear. It took him 45 minutes, and my beloved husband, coming to see if we were all right, opened the door and turned on the lights. Instant screaming. Another 45 minutes of waiting it out. We didn't try that again until he was older.

He could, however, melt-down at school--see the previous post about Peter--and when he did, it took just as long. And this almost inchoate rage is also very difficult for other children, although in his defence, once he hit the screaming part, he was never, ever violent.

6. Touching. The absolute worst part of the sensitivity spectrum he had in a school situation: he always wanted to be in physical contact with something--or someone. So he would, if he were stressed, try sitting in the lap of the girl beside him. Or the boy. He'd reach out absently to stroke their arms. He had no sense at all of appropriate physical boundaries, no matter how often we tried to --gently--explain why this frightened other children. Our explanations made no sense to him.

This was the worst, and the hardest - because I know, absolutely and unequivocally, that I would have hated him had I been a girl in his class. I hated to be touched and if a total stranger was trying to sit in my lap or stroke my elbows, I'm sure that I wouldn't have felt entirely safe with it as a child.

There are many other little things, as well, but I think that's enough to give you an idea of how difficult it would be for normative children--even the nice ones--to accept or understand him. And yet, in the end, they did.
Tags: asperger child
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