Bad Animals (12 page)

What you have to understand is that I am allergic to disappointment. I have had so much disappointment in my life that the tiniest amount of it is now enough to drive me to despair. I am so brimful of disappointment that even one more tiny drop will send me spilling over the edge.

I suppose I am drawn to writers who feel the need to write a theme into a corner in order to understand it. Writers who appear to have no clue what they are going to say, let alone do next. I believe in variables, and complications, the absolutely reliable fallibility of human behaviour. That is what literature provides and what behavioural science won't, can't. If a character in a novel or a memoir does A, then proceeds logically to B, then on to C, he can be dismissed, in literary terms, as not credible or, worse still, dull. So, even as I'm filling in these little boxes, I want to believe neither my son nor I can be so easily reduced to data, to ABCs.

By now, Jonah is so angry at himself he occasionally hits himself in the head. Usually, it's a tap but sometimes it's more like a clunk—the sound dismaying, even to him. He looks at his hand like it's someone else's, like it had no right to do that. Unfortunately, I can't witness this with anything resembling neutrality or objectivity. He sees the disapproval on my face and probably sees more—despair, worry, disappointment. By the time he's down to his last spoonful of Cheerios, he might as well be reading my mind:
Jonah, eat properly. Jonah, sit properly. Jonah, behave properly.

In addition, he's spilled some milk on the kitchen table and the floor, and that's given him some new mishap to focus on, to blame himself for. He's riffing on his failings now with an impressive dexterity, like a jazz musician improvising on a standard—John Coltrane doing “My Favourite Things.”

“Of course, my very angry father will be mad at me because I didn't do well. I spilled my milk,” Jonah says, his voice relentlessly sing-songy now. He appears to be interrogating himself. “I am not excellent, not an excellent boy. I have a problem. How do you solve your problem? By being excellent and Jonah is not excellent.”

This is untrue, too. He is often excellent. But to explain what I mean by this I'd have to resort to even more exposition. I'd have to explain, in particular, everything he's up against: how autism affects his brain; how it makes it so much harder for him to learn, to play, to make friends, to just have a simple conversation, and how, despite this, he goes to a regular school with regular kids; how good he is at speaking French to his grandfather and spelling words like
hippopotamus
or
irrelevant;
how, despite the stereotypical view of autism, he is, much of the time, a charmer. I'd have to explain, in other words, things for which there are not enough little boxes, things I don't really understand myself, even after all this time. I'd have to explain how he is constantly one thing
and
another.

By the time we arrive at school, Jonah has calmed himself down. It's as if nothing ever happened. The key to dealing with Jonah, The Consultant has told us, is to let things go. Don't dwell on the difficulties of the past hour or two or, for that matter, the past day or week or month or year. Look, instead, for some way to be reinforcing, positive, in the moment. The key for me, in other words, is to be a completely different person than I am. Just before the school bell rings, I hug Jonah and straighten his backpack. Then he tells me his old joke about the elkaholic and I pretend I've never heard it before. Perseveration or the endless repetition of a word or phrase is common in autism. Think of it as perseverance, only run amok. Sometimes, when I am trying hard to be analytical, I think Jonah's fondness for a running gag goes back to those final trimester lectures of mine: the knock-knock jokes and Abbott and Costello routines I shared with Cynthia's belly. Of course, there it is: your antecedent. I point to some of Jonah's classmates in the schoolyard and encourage him to go up to them and tell them this joke I know too well. “Just say it once, though, Jonah, just once,” I advise him. Then I put my arm over his shoulder and half-hug him. A different
ten-year--and-eleven-month-old would resist. He would find this unnecessary
show of affection embarrassing. But Jonah puts up with it. He puts up with my apology for this morning, too, for my part in making things worse before they got a little better. He looks at me as if to say we're even. We both drive each other crazy. I'm about to tell him how much I love him, about to take a stab at it anyway, when he interrupts.

“Daddy,” he says and I wait for the setup yet again.
What do you call an animal with antlers
... But instead he says, “I don't like that word.”

“What word, Jonah?”

“Properly.” His criticism is a welcome surprise. When it comes to telling me off, he's long overdue. After all, he's heard it—that word—far too many times, especially from me.

“All right, Jonesy, from now on, I'll say something else. After school, we can think of other words I can say instead, okay?”

“Well do it ... nicely,” he says. I watch him until he disappears into a crowd of kids, all around his age and size, all looking, in their bulky winter coats and hats, vaguely similar.

Every second Friday our ABA team meetings are held in what used to be our dining room. Now, there's just us—Cynthia, Jonah, and me—as well as The Consultant and Jessica sitting in a semi-circle, discussing what we will be focusing on in the next couple of weeks. But in the past, with as many as four therapists doing three-hour shifts seven days a week, the room could get crowded.

Once Jonah was diagnosed and his therapy was about to begin, Cynthia and I returned the dining room table and chairs we'd bought with money from our wedding reception. We replaced the set with a room full of functional white plastic furniture. All that remains of our former dining room in its brief, wannabe grownup glory is an ornate chandelier we also received as a wedding gift. The chandelier no longer suits the room or its reappointed purpose; instead it serves a new purpose as a reminder of a time when we thought we had real problems. Like what we were going to do with a chandelier. We also filled our reconfigured dining room with IKEA bookshelves and stocked them with empty binders, now with years of data, as well as a serious and seriously expensive collection of new educational toys and games. The special-needs market is a seller's market. They see you coming, as my father would have put it. There is no better motivation to spend money than hopeless desperation. In the beginning, throwing money at the problem, even money we didn't have, felt good; it felt like we were doing something. We bought everything The Consultant recommended, anything she even mentioned in passing.

One of the first deficits noticeable in a child with autism is an inability to play appropriately, which is to say the way neurotypical children play. In addition to parallel play, repetitive play is an early indication of a problem. Jonah's response to a package of animal figurines or toy soldiers or a set of blocks we bought for him was always the same—he lined them up. He was, at this activity, impressively focused. So much as nudge a piece out of line a half an inch and he'd spot it, even if you distracted him and did it when he wasn't looking. That half-inch was enough to induce him to line up his animal figurines all over again. He did this without complaint or resentment. It was his job, that's all, a job I obviously couldn't understand.

Before we knew Jonah's diagnosis, his preference for order over imaginative play appeared to be just that, a preference, albeit an unusual one. It was as if all that information on ordinary early childhood development you find in the
What to Expect
books were beneath him somehow; as if he, a self-assured toddler, had better things to do with his time than to bother making things up. “A chip off the old block,” I joked to Cynthia. “Real life is strange enough for him.”
I'll explain it to him one day,
I thought—the quote from Philip Roth that's always pinned to the bulletin board in my office, part credo, part admonition: “If only I could invent as presumptuously as life.”

However, after Jonah's diagnosis, I realized that a genetic predilection for memoir was not the issue. Jonah didn't know how to play. Yes, we had to teach him that, too. It was one of the many moments at the beginning of all this when a new or at least renewed understanding of exactly what I was dealing with hit me so hard it left me winded, practically gasping for air.

Turn-taking games, for instance, are crucial in a child's development and are learned by imitation and instinct. We couldn't rely on either. Instead, we had to show Jonah what he had to do step by step and then show him again. Everything we did we did in increments; likewise, every success was measured in components so small sometimes you couldn't help wondering if this really could be called success. Still, we experimented, then waited to see if the new information would stick: “Now it's your move, Jonah; now it's Mommy's.” We watched to see if he took his turn and then waited his turn. First, we'd use a physical and verbal prompt together; then a physical prompt; then fade the prompt; then there's no prompt at all; then in another game or circumstance we'd see if he'd generalized that tiny but essential bit of information. Everything had to be broken down—jigsaw puzzles, Legos, Hot Wheels, board games—hand over hand, step by step. It would take days to finish a game of Candyland. Nothing could be taken for granted; everything had to be reviewed. Later on, his therapy sessions included a script for him so he could play cops and robbers or doctor and patient. He memorized his part quickly, but never altered his lines, as he was eventually expected to, as a neurotypical child soon would. When this issue came up at one of our Friday meetings, I could see a shadow of concern cross The Consultant's characteristically confident face.

But the simplest tasks, even broken down, sometimes proved impossible. In early books on autism, like Clara Claiborne Park's
The Siege
and Barry Neil Kaufmann's
Son-Rise,
the extraordinary patience required to instruct a child with autism in even the simplest task is described in painstaking detail. It can make for dreary or, if you find yourself in a similar situation, terrifying reading. Park even warns her readers about what they're in for. Her account of teaching her daughter Elly to speak is accurately titled: “Towards Speech: A Long, Slow Chapter.” It's as if she's saying, “You might want to skip this one.”

Jonah revealed himself early on to be an impressively stubborn child. The Battle of Mr. Potato Head, as we eventually dubbed it, became the first major struggle Jonah's therapists would lose to him. They tried for weeks, months in the end, to get him to put Mr. Potato Head's body parts in the appropriate slots, but Jonah steadfastly refused. “As if” is the way Park describes her daughter Elly's behaviour in
The Siege
—“as if she could but wouldn't.” “As if” she had her reasons for deciding not to learn, not to connect. In Jonah's case, it was “as if” there were some as yet unannounced principle behind his obstinacy, “as if” he fancied himself a kind of abstract sculptor following his own aesthetic credo. “Every child is an artist,” Pablo Picasso said. “The problem is how to remain an artist once we grow up.” No problem, Pablo. Jonah happily put the nose where Mr. Potato Head's mouth should be. He jammed the bright red lips over the eye holes like a unibrow. His matter-of-fact resistance was met with a disproportionate urgency by his therapists. They ramped up their efforts “as if” they were invested in making sure the toy tuber looked the way it was supposed to. And when their efforts failed repeatedly the feeling of disappointment shared by everyone involved, except Jonah, seemed palpable and out of all proportion. “Well have to shelve it for a while,” The Consultant finally concluded, stolidly giving us the bad news at the end of a meeting. Cynthia was depressed for days, while all I could think was:
Mr. Potato Head?.

If those early setbacks began to feel ominous, the good news was that there wasn't a lot of time to dwell on them. New toys replaced old or rejected ones; old and rejected toys were eventually stored in the basement next to the office where I work. Back then, our weekends were given over to garage sales. We'd be up early to cruise the neighbourhood, searching for the perfect deal on the perfect toy. Usually, I'd wait in the car with Jonah. I quickly had my limit of rummaging through other people's junk. I'd get in the backseat with him and we'd belt out “That's Life” along with Frank Sinatra. We learned the P-part together—the paupers and pirates and poets. Not to mention those appealing opposites: riding high one month, shot down the next. Meanwhile, Cynthia pursued her own obsession. “I'm going a little crazy,” she'd confess once the weekend was over. “It's just that you have a child and he can't play and you think there's something, some toy or game or book that will make a difference. So you buy everything. You fill up the attic, the closets, the basement.”

I still pass the remnants of our consumer craziness every morning on my way to my computer and my manuscript, so-called, where I spend my time, weeks, months, years now, moving fragments around, trying to fit the right words into the right slots. My own Mr. Potato Head. We don't go to garage sales much any more, but the pile of ineffectual, discarded stuff still seems to grow higher and more chaotic each day. As if it's reproducing. The pile overshadows what now seems like the mere handful of things we bought for Jonah before we knew his diagnosis. It's hard to remember now that there was a time before outsiders took over the job of telling us what toys our child should be playing with. I can still spot my purchases, though—my little corner of clichéd expectations. So predictable: a tiny, plastic Montreal Expos baseball glove—the city still had a team then and I still daydreamed a few years ahead to taking Jonah to a pennant-clinching game—a foam basketball; a poster of the Marx Brothers; an illustrated, abridged version of
The Three Musketeers
I bought months before Jonah was born. There's the honking red clown nose I bought at a dollar store across the street from the hospital the day after Jonah was born. “In case he's colicky. You know to cheer him up,” I explained to an indifferent clerk. Every now and then the pile of junk—that's what all of it is now, junk—shifts and Mr. Potato Head rears his asymmetrical plastic dome. His ears are where his eyes should be, but they seem to be judging me nonetheless.

We are less wistful about our old dining room. If we had some plan to have impromptu, banter-filled dinner parties every weekend, the casual kind they always seemed to be having on
thirtysomething,
for instance, it was never a real plan. We have gone to dinner parties where our hosts have the menu for the evening printed on a tiny chalkboard. We've sat down to a real dining room table set with real dishes and an array of forks, with cloth napkins and crystal ware.
How ridiculous,
I remember thinking,
how wonderful!

The fact is we became, after Jonah was born, isolated and self-sufficient. We were a content, busy little island. Permanent population: three. We all got used to each other fast and, at the same time, kept surprising each other. Cynthia and I hadn't been together very long after all, and that made it easy to let go of our short-lived coupledom and carry on living our lives as a trio.
The Three Musketeers-.
one for all and all for one. Jonah didn't change our family dynamic; he provided our family with its dynamic. The situation suited us fine for long stretches. My sisters were in and out, videotaping, bringing new clothes. Cynthia's parents also visited regularly. Other relatives and friends would show up now and then. Otherwise, they waited for an invitation that we simply forgot to extend. Whenever the phone or doorbell rang we jumped like we'd received a small shock. My initial reaction to visitors, however welcome or needed, never changed.
What do they want now?

This may explain why I still can't get used to our regular Friday meetings, not even after all this time. The meetings can be hard on everyone—on our consultant, who feels pressured to show that, even in the last two weeks, there has been some small but identifiable progress; on the team of therapists, who are likely to be criticized if things aren't going well; on Cynthia and me, who can't win either way. We are not usually criticized directly by the team or directly critical of it, but we are keenly aware of how most meetings will encompass both possibilities, switching, without much warning, from our feeling blamed to our feeling like blaming someone else. We are always aware that while we are an essential part of the team, we are apart from it, too.

The meetings are also hard on Jonah. He doesn't deal well with the expectations of others, no matter how modest those expectations might be. Often, it's my job to distract him at those times during a meeting when it might be better if he didn't hear what's being said about him. Mostly, though, he needs to be around, so the therapists can practise new programs and strategies on him and so The Consultant can observe and take notes. Of course, hypersensitivity is a characteristic of autism, but—who am I kidding?—it's also a family trait. What, then, is the determining factor in Jonah's personality? Would he be hypersensitive even if he didn't have autism?

This is one of the controversies stirring around autism now, one of the debates you'll find addressed in websites like
Neurodiversity.com
or “Demystifying Autism from the Inside Out” at
williamstillman.com
. William Stillman is the quintessential insider. His website identifies him as “The Autism Whisperer.” He has Asperger's syndrome himself and advocates for others on the spectrum. He's a fierce opponent of treatments like ABA and encourages parents to accept their children for who they are. His books—like
The Soul of Autism, The Autism Prophecies,
and
Autism and the God Connection
—go way beyond acceptance as a matter of fact. They identify autism as a kind of supernatural gift. Stillman believes autism can imbue in people psychic and spiritual powers. “What if it has a purpose?” he asks. “What if there is a plan?”

These are not questions I've ever asked myself. Still, I wonder sometimes, as most parents of a child with autism do, what is the dividing line between an autistic personality and simply personality? Autism, like so many other things these days, has become politicized, an issue of equal rights and advocacy for some, including some very high-functioning and highly motivated adults on the spectrum. More and more, these are individuals who, as they grow older, refuse to be defined by their disorder or even view autism as a disorder or disability at all. For them, it's hardly more than a difference, a variation on our infinitely various human nature. No different from skin colour, say, or sexual orientation. They also insist that if a vaccine were created or a magic pill introduced that would cure autism and make them neurotypical overnight, they would not take it. They wouldn't even consider it. Take away their autism and you take away a fundamental part of who they are and what they have achieved. Not to mention what they might one day be capable of achieving.