Bad Animals (2 page)

Jonah is ten and starts grade five in a few days. We have bought his school supplies in bulk. We have stocked up on the grey jerseys and sweatpants that constitute his nondescript uniform at the public school he attends. We have talked to his teachers in advance. (That is, my wife, Cynthia, has.) We have a meeting scheduled with his principal. (Cynthia, again.) We've gotten up to speed, going over his previous Individualized Educational Programs, or IEPs, compulsory for special-needs children, as well as his previous report cards in case someone at the school misses some detail about him that might be helpful. They always do. And when we remind them of this detail, they will label us oversensitive, interfering parents, code us trouble-makers, helicopter types, and we will be off again on the wrong foot, learning to be solicitous, diplomatic, subtly manipulative. Autism is an education, a crash course.

As each school year begins, Jonah's world, and ours as well, becomes more challenging, and I can't help thinking this is the year the other shoe drops. This is it—grade five—the year autism beats us in a landslide. The year we can't overlook this impossible-to-overlook fact and can no longer keep clinging to the small, incremental victories, the two-steps-forward-one-step-back life (or could it be the other way around?) we are now expected to live.

Jonah and Cynthia are better at challenges than I am. It should come as no surprise to my teachers in elementary and high school, particularly my math and science teachers, that I've turned out to be a bad student, often grumpy and unprepared, behind in my reading, tardy on crucial assignments, either unwilling or unable to learn anything new. Except I have to now, and have to hope it's not too late. Lucky for me, for all of us, it's only September.

Oh that my words were now written! oh that they were printed in a book!

–THE BOOK OF JOB

When [the animals] got to school, they worked and worked in math.... They worked on addition. They had lots of fun. They got a prize for doing well! They were never bad again. The End

–JONAH, AGED 10, FROM
BAD ANIMALS

“What's our motto, Jonah, our motto? Say it with me: ‘You can't always get what you want,'” Cynthia says. She's speaking deliberately. Her voice is calm—better yet, neutral. I marvel at its neutrality and always have.
It's nothing you can't do, too, sweetheart
My wife's words are always in my head. That “sweetheart,” the slightly cloying inflection I give it, is hardly fair to her. It diminishes the soundness of the advice I imagine her giving me, the heartfelt concern I know is real. She's not being sarcastic when she says it, even in my head; still it's sarcasm I hear. I guess I never expected marriage to be like this—so intimate, so unnerving. Incidentally, Jonah is having a meltdown in the back of the car. This is not unusual, but that doesn't mean I'm used to it. We're twenty minutes from home. Or less, since I'm driving significantly above the speed limit. Even so, it seems as if we're barely moving, as if we're stuck in one of those interminable traffic jams that have you craning your neck out the window to see just a little farther ahead. Or if that's not doing the trick, maybe you put the car in park, step out, and commiserate with your fellow drivers, all the while searching for a better vantage point, as if there really might be some explanation for what caused this mess in the first place.

Jonah's latest tantrum started when he asked for a chocolate ice cream cone and Cynthia said he'd have to wait until after dinner. It has escalated from there. Now he's teary-eyed and practically hoarse in the backseat, carrying on an argument we are doing our best to ignore. The crying and the petulance I can just about tune out, but it's the whining that's so unrelenting I catch myself in awe, almost envious, of the sheer force of will required to sustain it. So when Cynthia tries to explain to Jonah that there is such a thing as limits and that a limit is when you can't have what you want at the exact moment you want it, like when you're driving in a car, Jonah is unappeased. “What's a limit?” he keeps asking, getting more and more worked up. He will keep asking the same question or some variation on it—his impatience rising and mine with it—until he will settle for nothing less than our full confession that we are deceiving him. Better still, that we are wrong and that ice cream before dinner will, from hereon in, become a new family policy. I worry, too, that if I were alone with him I would confirm this belief and capitulate. I would head for the nearest Dairy Queen or backtrack to find one, anything to make him stop. Now, I can only daydream about doing that. His mother is more effective at ignoring him at times like this, so his question is invariably directed at me. “Daddy, what's a limit?” “A limit is a bummer,” I say and Cynthia gives me a sideways glance.

Jonah is too old to be having this kind of fit, but, still, I try to remind myself that it was worse when he was younger. He used to scream and kick, too, often until he gagged, sometimes threw up. Or he used to say, “I'm mad; I'm not mad. I am; I'm not,” launching into what was, at the time, his standard self-contradictory soliloquy. It was the kind of thing that if you weren't stuck in a car with him or at a holiday dinner, if you were in the right mood, could be funny. Like a bit right out of the Marx Brothers or Abbott and Costello. The kid would agree to nothing, not even how he felt.

Jonah was first diagnosed with autism when he was almost four, and back then we were still not sure what we were dealing with. We were on a waiting list at the hospital for a second opinion and there were days I tried to put anything to do with autism on hold until this appointment. Some days my strategy proved more successful than others. Mostly, we were in a daze.
Speak for yourself, sweetheart, some of us were depressed.
We were never sure, for instance, if his latest tantrum was just one of those times when Jonah was acting like any other kid not getting his way. Back then, it could be difficult to distinguish between autistic behaviour and typical four- or five-year-old behaviour. (I should say neurotypical since that's the politically correct term now. It's used these days to describe, well, everyone who doesn't have autism.) Though, looking back, I suspect we were kidding ourselves. I suspect we understood or were beginning to understand our situation.

When I first learned what was wrong with Jonah I looked up the word
autism
in the dictionary. “A mental disorder characterized by self-absorption,” it said, and I remember walking around for days thinking,
That sounds like me.
Then thinking,
That sounds like everyone.

I know better now. I know the look in my son's eye, the sound of his voice, when he's gone somewhere else, somewhere deep and nearly impenetrable inside himself. I know why those tantrums were so fierce and unfathomable when he was younger, and why they continue to come and go, fade, return, disappear, mutate. Jonah has gone through a variety of overlapping phases, if you can call them phases. He has lost his temper with us and others, acted aggressively, stared off into space, mumbled, chattered, scripted, perseverated, echoed, and distorted words. Whatever he does, though, he does incessantly. At least, he would if we let him. He would, for instance, read the same books—even at ten, animal alphabet books remain his favourite—over and over again. He is intolerant of change, any change. “An overwhelming preservation of sameness,” that's what Leo Kanner identified as the primary marker of the disorder. (Kanner was the Austrian-born American psychologist who first identified infantile autism in 1943; a year later another native Austrian, Hans Asperger, gave his name to Asperger's syndrome, a milder form of the disorder.) And so we, Jonah's family as well as the people—the experts and educators—working with him, are not only preventing him from retreating to that place where nothing changes, we are
conspiring
to prevent him. Every action we take, every person we hire, every theory or therapy we purchase, everything we do is designed to keep him from doing what he most wants to: to stay just the way he is.
Who are you talking about, sweetheart? Because that sounds like you.

Autism is a spectrum of disorders (commonly referred to as ASD), and within a broad range of symptoms and deficits, Jonah is generally considered high-functioning. The first psychologist to diagnose him told us this in one session, a not-quite-two-hour introductory class in autism. He will likely have problems with communication and social interaction, she explained. He will be prone to repetitive behaviour, also known as self-stimulatory behaviour, or stims. Take, for instance, the way he lines up his toys, she said, referring to one stim she'd already observed. He will have trouble with empathy, too, with what's called theory of mind. For neurotypical kids, empathy is a natural, progressive part of development—not for Jonah. He will have to be taught that just because he feels something, it doesn't mean other people feel it too and in the same way. Right now, he is inclined to believe that whatever he experiences other people must be experiencing. In individuals with autism, that's called mind-blindness.
That's called yours truly,
I thought. Down deep, I always think everything is happening to me and only me. All
this,
for instance. The psychologist was a chubby, cheerful young woman with a framed bachelor's degree in psychology a little askew on her freshly painted but otherwise unadorned office wall. “Any questions?” she'd repeat every so often.
Were we supposed to raise our hands?
She couldn't have been more than twenty-five and she delivered the news matter-of-factly, as if it couldn't possibly come as a surprise to anyone since it wasn't a surprise to her. She got up from her chair, then smiled and said, “Have a nice drive home.”
Talk about mind-blindness.
Still, when we didn't respond or even move, she glanced at Jonah and then at us, at our evident worry and desperation, and summed up her diagnosis with an improvised pronouncement.

“He has a whiff of autism,” she said, nodding her wide face slowly and deliberately. I nearly hugged her; the phrase sounded so quaint.
A whiff? What's a whiff? Nothing. Hardly noticeable. Like a mole, a lisp. Like being left-handed.

At first, I assumed Jonah's development would just be slower than that of other children. He'd be a few years behind; that's all. For instance, when he was ten, as he is now, he'd be more like an eight- or a six-year-old. He'd be held back a year or two in school. So what? By this same reasoning, I figured that by the time he was twenty-one, well, what would it matter? We were playing catch-up, that's all. Who cared? Instead, what we're playing is a whole other game with a whole other set of rules. I find myself dreading Jonah's birthdays, thinking:
He can't really be turning eleven this year.
Or dreading another September:
He can't really be in grade five.

As it turns out, Jonah's developmental delay is not just a delay. It's not just a disability or a disorder or a condition either. It's something else entirely, something the mental health care profession or the educational system would never dare call it these days. Something I am well aware I shouldn't be calling it either. But there are moments when I, a reluctant but diligent student of my son's behaviour, can't think of any other word to describe him than strange. Sometimes, no P.C., no neutral, no other word will suffice.

I have also learned what any parent of a child with autism eventually learns: there's no such thing as “a whiff of autism.” It's true there are kids worse off, and some better off, than Jonah, but that has not made the gulf between my son and the world he has to work so hard to understand and engage with any narrower. It has not prevented me from noticing that it appears to be growing wider every day.

“MOTTO, JONAH?” Cynthia prompts again. She is holding up
Forty Licks,
a compilation of Rolling Stones hits we keep in the car for this kind of occasion. Jonah, who is barely catching his breath, listens and grudgingly says, “Number six: ‘You Can't Always Get What You Want.'” Jonah is not a child for whom logic will ever be simple, but somehow the simple logic of Mick Jagger's line appeals to him. That's why we need to be careful not to overuse it, Cynthia says. It's a feature of autism that anything that begins as if it's going to be a good thing—like an interest in classic British rock or knock-knock jokes or animal alphabet books—is bound to turn bad, which is to say turn into a fixation. So Cynthia saves the Rolling Stones lyric for moments of crisis or those moments of crisis we can no longer deal with. Which is another thing you learn when you have a child with autism: everything is a potential crisis.

Cynthia and I both used to avoid the A-word, as we called it, though we did so for different reasons. Cynthia because she believed, down deep, that with hours and hours of ABA or applied behavioural analysis therapy, with luck, with dedication, determination, and a positive, proactive attitude, autism was something we could overcome or at least battle to some kind of uneasy but workable truce. She believed that one day Jonah would be “indistinguishable” from any other neurotypical kid.

“Indistinguishable” was the word she repeated, mantra-like, every chance she got in the first few months after Jonah's diagnosis. It was the promise implicit in the course of action we were embarking on—ABA therapy. Indistinguishable implied Jonah would not be like everyone else but that he would almost be. At the very least, he would appear to be. We might always know the difference, of course, but there was a chance other people—friends, teachers, store clerks, future girlfriends, and employers—might not. We were determined to fool them all, now and in the future; we were depending on it. There was still no guaranteed treatment for autism, certainly no cure, but there was reason to be hopeful. Cynthia was reading everything she could about ABA back then and finding examples of kids who were doing fine, all things considered.
All things considered.
What a preposterous phrase to apply to a child,
my
child. It made me want to scream or, better yet, punch a wall or throw something, something heavy. I never needed qualifications for Jonah before. In fact, he was the only thing in my life I never needed them for. Now, I was learning that qualifications were all I had. I would have to take solace in them, but that would take time.
How much time, sweetheart?
Cynthia, meanwhile, met with the mother of another boy, a few years older than Jonah, who was in a private school where no one, not his classmates, not the teachers, not the administrators, knew he had autism. “It's true,” Cynthia said when she got home, her tone lighter, less ominous than it had been for weeks. “No one can tell.”

During their meeting, the other mother had recommended one of her son's therapists to Cynthia. This therapist had recently started her own practice and become a consultant. She was a slight, no-nonsense woman in her late-twenties when we first met her. She had long black hair and wore nothing but black; even so, it was hard to tell what look she was going for—Zorro or Morticia. Her job was her life and she undertook it with a zeal and self-assurance that was, for us, irresistible. Autism was and still is a seller's market and The Consultant, one of the kinder nicknames I would come up with for her, knew it. This was exactly what we wanted: someone who knew everything. We were more than willing, then, to believe in her methods, to believe in her as much as she believed in herself. The Consultant had only a bachelor's degree in psychology but her credentials were impressive nevertheless. She was only two degrees of separation from the California clinical psychologist O. Ivar Lovaas, an iconic, sometimes controversial figure in the world of autism treatment. What distinguished Lovaas—who began his research in the 1960s when autism was still considered a psychosis, a variation on childhood schizophrenia—was his belief that children with autism were both treatable and teachable. That was the real breakthrough in the model of behavioural therapy he used: his acknowledgment that children with autism should be treated like human beings and not locked away like animals. (When Cynthia first began reading about Lovaas, she was so grateful to have come across his research she wrote him what can only be described as a fan letter. She thanked him for providing us with something we could do for our son and enclosed a photograph of Jonah. He wrote back to wish us luck and to tell her he had shown her letter and Jonah's photograph to everyone working in his institute. He said he knew it would encourage them. His letter went up on the cork bulletin board in our kitchen and has remained there.)