This was an unpublished entry that had been lurking with the other drafts.
A couple of years ago, when I was working with autistic children, I learned the versatility of using “head” as part of a compound word. The children were absolute masters. A small selection:
Seven months’ work with seven autistic children came to an end last Friday, the last day of school. “I feel I’m a better person for the experience,” I said to a colleague. So many daily lessons – as Elie Wiesel often says of his students, I learned far more than I taught.
I learned how to separate the behavior from the child. The child and the behavior – and I’m talking of crises: spitting, hitting, screaming, kicking, crawling under a table, self-destructive behavior, etc. – are not equivalent. Indeed, it is very seldom the child actually behaving that way, but rather the condition taking over and running things for a few moments, or minutes. You can see it in the eyes, and hear it in the voice.
I learned that there are far more difficult things to deal with as a teacher than a belligerent teenager. Countless times during the last seven months I was at a complete loss as to what to do, what to say, how to behave. This was partially a function of my lack of education in the EC field. When a child is in crisis, it’s a natural reaction to try to discuss it, to try to “talk him down.” In the world of autism, that seldom works. I learned to do so many things in exact opposition to my every instinct.
I learned what true student progress can entail. A couple of the students finished the year as completely different children than when they started. Gains in reading ability, social interaction, verbal expression, math skills, and general life skills left me simply astounded, and understandably proud that I had something to do with it.
I learned that even many regular education teachers feel they wouldn’t be able to work with such “difficult” children. “You guys are the saints of the school,” someone once told me, and a couple of others expressed an inexplicable admiration of “what we do.” What we did was not very different from regular education: try to teach children and minimize the behavior issues that impede learning. It’s just in special ed, the behaviors can be more concentrated. It’s sometimes a triple espresso to regular education’s thin, pale diner coffee.
As something of a correlate of the previous two points, I learned how to recognize true appreciation in the eyes and voice of parents. When I began working there as a substitute teacher, I was told that most subs last one day and refuse ever to come back. Full-time aides must be relatively difficult to find as well. Almost to a parent, everyone told me, “We really hope you’ll be back next year, though given the pay, we’d all understand if you didn’t.”
Finally, I learned that I have a patience I never knew I had, and it also has its bounds.
I leave with a greater understanding of autism, a greater respect for the parents of autistic children who live with autism every day.
Most of all, I leave with greater sympathy and respect for children with autism. They are the ones caught in a trap with varying degrees of understanding what that trap _is_, let alone how to get out. And yet they so often show those of us working with them things we never would have noticed because of the unique perspective from which they see every little thing.
I recently wrote about the disappearance of Federal funding for autism support programs.
To its credit, the Asheville city school system refused to let Bush’s tax cuts harm students under its care. They have hired several of the individuals who provided one-on-one support for more severely autistic children so that their education is not disrupted by Bush’s idiocy.
Children, it seems, sometimes like to have things just so. Everything in its place — as they deem it — and everything arranged just so. Perhaps that’s why Rudyard Kipling named his book of children’s stories Just-So Stories.
What happens when things are not just so? If the child has autism, she might have difficulty explaining how things are not just so, and once that’s explained, might have further difficulties accepting the fact that things must remain as they are, just so or not.
Imagine a child — we’ll call him Samuel — is sitting in a blue chair at a table, working on an art project in his free time. Another child — we’ll call her Jen — is getting ready to do her math work with me. She starts heading over to the table where all the materials are laid out: the worksheet for answers, the manipulatives (in this case, plastic blocks) to help with counting, and a few horses because, well, Jen just likes horses.
But her blue chair is not there. Who knew she had a blue chair? I didn’t. When did she get an attachment to this particular chair? No idea.
Still, she needs her blue chair. The one Samuel is sitting in.
Who knew Samuel could so quickly develop an attachment to that very same chair? I didn’t know, but would have suspected it’s possible.
Who knew this would all to amount to crisis for Jen? Once I saw where things were heading, I did.
The thoughts running through my mind then: Whom do I upset? If I leave the chair under Samuel’s bottom, Jen is not going to do any work and will in fact only scream at me for trying to work out a compromise with her. If I try to get Samuel to relinquish the chair, he’ll go ballistic because he’s having a go-ballistic-at-everything day. Besides, it really isn’t fair. He was sitting in the chair long before Jen decided she had to have it. And it will be more difficult to work while he is in crisis than it will be to try to get Jen to compromise, so I left the chair there, got Jen to go to the quiet area for calming down, and waited.
“I’ll give you two minutes to calm down,” I said, then walked away, set the timer, and waited.
“Are you ready for some math, Jen?” I asked when the timer’s bell finished ringing.
“No!” came a shriek. “I hate math! Stupid math! I want blue chair!”
“The time is not ripe,” I thought.
Eventually, Samuel finished with his project and moved on to another part of the room to do more work. I grabbed the blue chair while I had the chance, put it at the table where I’d set everything up, and walked quickly over to the quiet area. Tapping Jen on the shoulder, I said quietly, “Look what I have for you over at the table.” She hopped up, virtually bounced to the table, sat down, and we had a truly delightful time working together on math.
Here’s a story about an autistic teen — worth the read, and make sure you watch the embedded video to the right.
One thing that can cause massive amounts of problems for autistic children is lack of consistency. Our classroom is strewn with visual reminders of one sort or another to help the children stay calm by giving them a pattern to their day. At the basic level, it consists of schedules given to each student — rather, placed in “his/her” area — that outline what we’ll be doing the whole day.
Unexpected changes can send more profoundly autistic children into spirals of panic, which manifest themselves usually in a meltdown of screaming and other “typical” autistic behaviors.
Even with this, some children have trouble navigating through the day without having someone assist them exclusively throughout the day. These services are supplied by the Autism Society, which receives a great deal of federal funding.
Well, the Federal funding has been cut, and that means that all services in our area end 17 March. No tapering off; no warning — just BOOM!
“Sorry Joey, but your one-on-one had to leave. You won’t see him again. The entire structure of your school day will now be instantly and violently disrupted. Have fun!”
Thanks, W. Really — No Child (who isn’t autistic, and whose parents are middle or upper class and contribute to my campaign) will be Left Behind.
Chess, from beginning to end, is a game of patterns. Steven Pinker, in The Blank Slate, writes that chess grandmasters are no better than non-players at remembering randomly arranged chess pieces. They rather remember the patterns of threats, attacks, defenses.
Patterns are the stock and trade of autism. Arranging, rearranging, obsessing with shapes.
At school I’ve been finding that chess is in fact an excellent activity for children the higher functioning spectrum of autism. During their choice time, several kids have taken to playing chess, taught primarily by yours truly. Elementary chess; chess without much “strategy”; with some kids, chess without all the pieces (minimizing input and thereby confusion) — still, chess all the same.
Today, much to my surprise, one of the children with more intrusive autism (read: closer to low-functioning than most of the other children) decided he wanted play with the chess pieces during his choice time. He knew that they go one to a square, and he’d even picked up from watching the other kids play during the last few weeks that all the pawns go in front of all the major pieces. Once he’d got them all situated, I asked him if he’d like me to show him how the back pieces were to be arranged. He readily agreed, and I showed him: castles (using “rook,” “knight,” etc. was a level of abstraction that I decided was unnecessary) go on the outside; the horses go next, because they’re riding out of the castles; next we have these tall, funny, pointy looking pieces; and then the king and queen. I tried to get him to turn the board around and set up the white pieces, using the black pieces as a model. Nothing going there, and I simply backed off. I returned in a few minutes to find that he’d done it himself.
Impressive.
But more was to come.
Another young lad decided to join in the fun, and the two were soon having a blast simply moving the pieces around randomly, taking with rooks by jumping three pieces at a diagonal, but still obviously grasping the object of the game.
And then the real shock – the first boy put all the pieces back perfectly and they played again.
Once choice was over, I used the chess pieces and board with the first boy to segue into math, working on which numbers are bigger. Instead of using the workbook and coloring in blocks of a chart to give a visual for the young lad, we used the chess board. Once he’d arranged the correct number of pieces on the board, he then colored in the squares in his workbook, and we had a short little quiz.
“Which number is bigger: six or eight?” A quick to the chess board or the workbook gave him the necessary help when he wasn’t sure. By the time we got to ten (I added two squares on a piece of paper, since a chess board is only eight by eight), he was carefully arranging the pieces by alternating color and size.
And we continued working, without a glitch, even when the rest of the class left for the library.
Homosexuality used to be considered a mental illness. The placing of heated glass bulbs on a bare back and the resulting bruises were once considered treatment for all kinds of ills. Medical science has shown both these medical assumptions to be false. Despite that, many still claim that homosexuality is an illness of some sort, and cupping is still performed in many places in the world.
Such interpretations of autism are possible as well.
“Autism is not a disease but social construct.” Such is one position on the causes of autism. Wikipedia explains it thusly:
This is the belief that autism is not really a disorder, but instead is a social construct. That is, supporters of this theory do not believe autism exists at all; they believe (partly supported by recent reference to the rising cases of diagnosed autism) that autism is just the way some people are–that is, a part of the person’s personality, which might explain the apparent difficulty in finding a model and a cure. This is further supported by the fact that autistic people have normal lifespans and their condition often comes with advantages, not just disadvantages.
I can imagine another, even more radical explanation for the tantrums and screaming of autism: “overly-permissive parenting.” When working with autistic children, I see from time to time a glint in their eyes that make such a thought pass through my mind. “They’re faking it, just throwing a tantrum to get their way, and taking it to a higher level than most children.” That’s the easy answer, and I realize that that “glint” I think I see is simply my interpretation plastered over the incident.
The most radical explanation would probably come from the church I grew up in: they’re demon possessed. What person in their right mind would suggest such a thing is beyond me, but I can think of groups whose members would probably easily jump to that conclusion.
But all three explanations (though quote-unquote is probably needed there) deal with our perception of the condition and our notion of what is acceptable in society. Our society considers, in most cases, kicking and screaming as an inadequate adult response to disappointment or coercion. Yet if that _were_ the appropriate reaction, autism would not suddenly disappear. Linguistic difficulties, lagging social skills, an inability to see things from another’s perspective, repetitive behavior, and exaggerated or depressed sensory systems would all remain.
If you’ve never heard the scream of an autistic child, count your blessings. It’s inconceivable how a single, shrill sound could convey so much pain, confusion, and anger. The scream comes from so deep inside them it sounds more animal than human. And yet, it’s so shrill and hollow that it’s ethereal.
Often words are woven into the scream — “I hate you!” or “Get away from me!” — to produce a genderless voice. Add the repetitive nature of what they’re screaming and it’s not difficult to see how this could have once been labeled “demon possession.”
Autism, in the time of a rage, wipes away all differences between afflicted children — gender, intelligence, everything — and replaces it with a screech. The rage contorts the face, flails the limbs, and lashes out at anything in the vicinity. The scream fills whatever space you’re in, seeming at times almost like another entity, hovering around the child as you try to isolate her so that so can calm herself.
If it happens around children who are not accustomed to it, the bewilderment and pity in their eyes is striking. And it’s impossible to deny the spark of fear as well.
Often the screaming subsides as quickly as it comes on. A raging child might notice there’s an echo in the room where he is, and that will be enough to derail the rage and pacify the child.
Working with these kids takes so much out of you. It’s a constant struggle — physical but espcially mental — to keep the kids on-task, to keep them calm, to maintain a semblance of order and progress in the room. One day they can be going off like popcorn. The slightest thing can set them off.
This one runs around the room, evading all efforts to stop her, gradually getting more and more angry until the rage hits, and the screaming, kicking, biting. That one sits at his seat, sarcastically chanting his mantra of defiance. Leave him alone and he’ll continue ad infinitum; try verbally or even physically to get him back on task and he’ll be running around the room too. Another sits, watching, cheering the eruption on. “Kick him! Kick him!” is the cry. I’m trying to calm one and the other’s cat-calling us both.
Sometimes you feel as if you’ve been thrown into a lake with bound hands and wearing jeans–it’s a struggle just to survive.
Take nothing personally. That’s critical in all teaching, but especially when working with children cursed with autism. The biter might be a hugger in fifteen minutes. No, scratch that. In fifteen seconds. “I hate you! Get away from me, stupid teacher,” from the mouth of a nine-year-old who later says, “I really love you. You’re awesome.”
All your angry adult reactions sometimes build up, though, and in a flash, you see yourself screaming back at the child yelling at you, giving them exactly, word for word, what they give you. But not only does the cruel unreasonableness of this idea force the image out of your mind, but you also really don’t have time to indulge in such perverse pressure-releasing fantasies, for you see that as soon as you get this situation under control, there’s bound to be another explosion. You see it coming. He’s reaching for her pencil. She’s forcing an apology on an irritated student. They’re arguing over the finer details of an episode of _Star Wars_. And even if all’s calm except for the child you’re struggling with, you know that in a flash it can all disappear.
And yet. And yet there’s the hope that you can make the cliché difference. “If I’m just this much more patient, this much more ingenious, this much more educated about the condition,” you think.
The trick is to see the child and not the condition. The autism perverts the child’s real personality, adding hatred where there is none, confusion where clarity is simple, and fear where there should be none. When you see the real child, not the child whose face is smeared into a scream by a condition he has no control over, all the frustration and anger disappear and your heart is both soothed and broken.
It’s a full moon, and I’m starting to wonder just what effects that can have on a person’s psyche.
For the past week, I’ve been working elementary school children, the majority of whom have various degrees of high-functioning autism. Today was an especially difficult day, with rages set off every few minutes. Almost to a child they had a breakdown of some sort or another.
“It’s a full moon,” one of the assistants said.
There was a time I would have been skeptical of such a claim. However, with a week of experience under my built, I know how these children usually behave. I saw today that there were quantifiably more eruptions than usual.
While I’m more than a little skeptical about the effects of stars on humans, moon and wind can certainly have demonstrable effects on people. In southern Poland, there’s a warm wind that blows during autumn and spring that brings with it sleeplessness (Once, during one of these periods, I couldn’t sleep for four nights) and an increase in irritability with everyone from students to office workers. Could I have been seeing the effects of the moon today?
It seems so medieval. “Beware the full moon!” Our issues today are attributable to most everything but phases of the moon, but perhaps the ancients got it right.
Yet, it’s not the cause. This article discusses the impact of environmental issues on autistic children.