Bad Animals (21 page)

In the end,
A Child Is Waiting
was admired but not especially successful. Or, as Gill bluntly put it, “We have no business watching them.” It would be easy now to say that the failure of
A Child Is Waiting
was a sign of the times—that no one would write a review as appallingly offensive and cruel as Gill's any more. No one would use that phrase “the host of pitiful children” without losing their job and deserving to. No one would dare call attention to that gap—the one between “the charming, the successful, the gifted” and their opposites. But even so, Gill's reaction remains disturbingly and undeniably candid. The catch-22 for anyone telling this kind of story honestly is inescapable: people don't want to know about it. They never have and never will.

A few years ago I started looking for a copy of
A Child Is Waiting.
It had been years since it had been on TV and it wasn't easy to find in video stores or libraries, so I ended up watching it in segments on YouTube. I wanted to see it because I remembered it from decades ago and because it occurred to me, not long after Jonah was diagnosed, that the title character must have autism. That would likely make his portrayal the first feature film depiction of the disorder, which it is, even though the word
autism
is never used. Instead, the title character is described as “defective.” But his symptoms—his solitude, his blank stare, his difficulty communicating, conversing, his tantrums, his underestimated intelligence—clearly place him on the autism spectrum.

Watching the movie proved to be a bad idea, a fact I realized once I began shouting at my computer screen. In particular, there's the scene in which the no-nonsense psychologist who runs the institution (played by Lancaster) and his staff are recovering from a regular Wednesday afternoon visiting day Lancaster has been besieged by a variety of hapless and clueless parents, who are either undone by or in denial about their children's potential. They are portrayed, in other words, as monumental pains in the neck. Some miss their kids or feel guilty about not missing them. Others would secretly, sometimes not so secretly, like them to disappear. They all feel helpless and, as a result, prevent Lancaster from doing his job, which is to treat these children with a kind of tough but respectful love. Fair enough. But Lancaster's paternalistic tone leaves no room for argument or ambiguity. He views all the parents who pester him with their foolish questions or requests—if my child could just learn his catechism; if he could just speak—with a transparent combination of contempt and pity. Back in his office, with visiting day finally over, he comments to his secretary, “Sometimes I think we should be treating the parents and not the children.” Then he shakes his head regretfully and says, “What a pageant! What a pageant!”

What a fucker!
That's what I was thinking.
Fuck you and Stanley Kramer and Abby Mann and John Cassavetes. If you're all so smart, whose idea was it to make visiting day Wednesday afternoon?

This is an insignificant detail, I know, one that probably nobody ever notices, let alone comments on. But as I watched
A Child Is Waiting,
I couldn't get it out of my head.
Wednesday afternoon.
Talk about retarded. How are ordinary working parents expected to get to the place and have any time to spend with their child? They've probably already been hectored into institutionalizing their kids; now they're supposed to quit their jobs to visit them, take their other kids out of school. Why isn't visiting day on a Saturday or Sunday? The whole system is nuts. Why doesn't anyone complain?

LAST NIGHT, I ALSO expected to be shouting, before long, at
Rain Man,
and, no doubt, waking my family. The movie has its infuriating moments. The director Barry Levinson's depiction of autism hasn't done anyone who has to cope with the disorder on a day-to-day basis any favours. Made before there was such a notion as a spectrum, the movie puts all the emphasis on the extreme end of the disorder. Hoffman's character turns out to be a whiz with numbers and ends up winning Cruise a small fortune by counting cards at blackjack on a trip to a Las Vegas casino. Ever since
Rain Man
there has been no shortage of stories on television programs like
60 Minutes
about true-life savants: piano-playing geniuses and math wizards. A couple of years ago I saw a local news story about a teenage boy with autism who finally got his chance to play for the high school basketball team and astonished everyone by demonstrating a remarkable knack for hitting three-point shots. He'd been a kind of team mascot before that appearance. Nobody even thought he knew how to play. Rumour has it that this story will be turned into a feature film.

Daniel Tammet, a British man with Asperger's, was featured on
60 Minutes.
In the press release for his memoir
Born on a Blue Day,
Tammet is described as “a real-life Rain Man.” He has an extraordinary facility with numbers; he's also able to become fluent in a new language in a matter of days. His memoir concludes with his successful debut on the
Late Show with David Letterman.
“This experience showed me more than any other,” Tammet says, “that I really was now able to make my way in the world.... I felt elated by the thought that all my efforts had not been in vain, but had taken me to a point beyond my wildest dreams.”

Almost twenty-five years after
Rain Man,
the savant angle, with the adjective
idiot
usually dropped, continues to influence the public perception of autism. And for the same old reason: the message is ultimately uplifting. What the audience goes away with is the understanding that people with autism may not always be able to function in society, but they have been given some unique gift as a kind of counterbalance—compensation for all the ordinary, unspectacular things they're incapable of doing. This gift can rarely be accounted for except, perhaps, as an example of God or the human brain, whichever you prefer, working yet again in their own mysterious ways, making lemonade out of lemons. At a dinner party one night, the new boyfriend of an old friend pressed us to reveal what Jonah's talent was. He assumed there had to be something. He also assumed we were keeping whatever it was a secret until we could book Jonah on a late-night talk show or sign a major motion picture deal. “What does he do?” he kept asking. When we finally convinced him that our son was not secretly a genius, the inquiring man was disappointed but reassuring. He suggested we just hadn't found Jonah's special talent yet, whatever it might be.

So, yes,
Rain Man
plays fast and loose with the everyday realities of autism, and,
yes,
that hasn't always been helpful, but it's also a surprisingly endearing movie that succeeds where
A Child Is Waiting,
with its cinéma-vérite good intentions, fails so miserably
Rain Man
stumbles into an important truth if not about autism then about what it's like to find yourself suddenly living in the world of autism. Scene to scene,
Rain Man
is also a comedy, an extended Abbott and Costello routine. (Hoffman's character recites the “Who's on First?” bit whenever he's stressed or whenever there is a change in his routine.) Watching the movie this time around, I was struck by how closely dealing with Jonah mirrors the comical, absurd, confusing back and forth between the person (Lou Costello) being drawn unwillingly into a looping, loopy conversation about a baseball line-up and the person (Bud Abbott) already comfortably immersed in it. “Who's on first?” Costello asks repeatedly. “Naturally,” Abbott answers repeatedly. Meanwhile, the frustration builds, and, after a while, you have a simple choice if you're a participant or an observer: you can laugh or scream.

The other takeaway from
Rain Man
comes late in the movie when Cruise and the doctor responsible for Hoffman confront each other. Their meeting is being refereed by another psychiatrist, who is assessing what is, in effect, a custody battle. Cruise has, without meaning or wanting to, taken on the role of a parent or guardian to Raymond. Like a parent, he tends to be defensive and emotional. He argues that he has had more success making a human connection with Hoffman in six days than the experts have in thirty years. The first time I saw
Rain Man,
I probably viewed this scene the way the filmmakers intended it to be viewed—as a noble but quixotic gesture by Cruise, mainly constructed out of a love for his new-found sibling. Now, I know different. I know Cruise is simply right. On that six-day road trip, Hoffman learns to dance, kisses a woman, improves his taste in clothes, and becomes a part of a family. Insofar as it's possible, he is on his way to being integrated into the neurotypical world. You don't know him the way I do, Cruise protests to the patronizing psychiatrist, an updated, slightly more sensitive version of the Burt Lancaster know-it-all character. You haven't been with him twenty-four hours a day, Cruise goes on. Of course, this is what every parent of a child with autism thinks every time they're told what to do by people who haven't a clue—by the experts without expertise. If
Rain Man
didn't exactly set out to make this point, if that's just me talking—
projecting, sweetheart,
as Cynthia might say—the movie is clear on the fact that the hero of the story is not Hoffman, it's Cruise. Cruise changes. He's the schmuck who stops behaving like a schmuck, the one who learns something about his brother and himself. He gives the movie its redemptive Hollywood ending. He snaps out of it.

Jonah was born on Christmas Eve in Montreal's Jewish General Hospital. That wasn't how we'd planned it. Cynthia had had a midwife rather than an obstetrician for her entire pregnancy, but once she was a week past her due date, we checked into a hospital to be on the safe side. Secretly, I was relieved. Our sessions with the midwife had been a little too new-age-friendly for me. In the final days of the pregnancy, there was a lot of talk about how Cynthia might want to position herself during her contractions—whether she should be standing, crouching, walking.
Walking?
Lying down, evidently, was old-school, impractical, and vaguely misogynistic. There were birthing chairs, too, or we could opt for an ordinary stool.
Like a barstool?
How about a bathtub?
How about it?
We could always try that, complete with whirlpool attachments, our midwife went on. And, she added to me, if I wanted to I could be in the bathtub with Cynthia.
No one ever suggested that, sweetheart.
Most men also want to catch the baby, I was informed, but you have to be careful. That placenta can be slippery.
Catch?
You mean like a fastball?

As it turned out, no bathing or game-saving catches were required. Jonah was already nine days late by the time we arrived at the hospital and was either unprepared or unwilling to cooperate. He was then, as he remains, a hard kid to read. Cynthia was induced, but the procedure had little or no effect. Jonah simply refused to budge. Shades of Mr. Potato Head. So the doctors ordered an emergency C-section and Jonah's entrance into the world was quick, startling, and not really his idea.

Because Cynthia had a C-section, our stay in the hospital was extended from a day and a half, maximum, to four days, minimum: hospital policy. After the four days, we were informed that we'd be staying a day or two longer. Jonah had jaundice, a common problem in newborns, but one the doctors wanted to keep an eye on. Two days later, as we were packing, Dr. K., the chief of obstetrics, entered our room and explained that there was a complication, that Jonah's jaundice wasn't resolving itself as quickly as he would have liked. He explained slowly, reassuringly what was going to happen next. Jonah would require phototherapy; basically he would be placed under a set of lamps in order to lower his bilirubin count. I still couldn't tell you what bilirubin is, but, evidently, when it's elevated, it isn't good.

Cynthia was squeezing my hand. She'd already spent most of the morning answering leading questions about her emotional state from a succession of OB/GYN residents and interns. A lactation nurse had apparently tipped off the rest of the staff when she spotted signs of what she presumed to be post-partum depression. From then on, no one bothered asking Cynthia why she might be feeling down. They assumed they knew. The answer was right there on her chart.

“We want to go home,” I said, as yet another resident dropped off pamphlets explaining how post-partum depression was nothing to be ashamed of. “You won't let us go home,” I added as the young woman smiled at me and exited. “Seriously,” I said, sinking to my knees and pleading with the slowly closing door, “can't you just let us out of here?”

“My stitches. Don't make me laugh,” Cynthia said.

“Where are they now? They should see you now.” I ran to the door and shouted down the empty hall, “Come see her now. She's hysterical.”

“Sweetheart ... the stitches.”

But once Dr. K. arrived we weren't laughing any more. Phototherapy was simple and safe, he explained, but it required a few precautions. Namely, someone had to stay up with Jonah until he fell asleep.

“He'll be wearing a mask to protect his eyes and we wouldn't want that displaced at any time. It could damage his vision somewhere down the road,” Dr. K. added matter-of-factly. Then he looked me up and down as if he were measuring me. “This is a job for the father, obviously.”

I spent that night in the nursery while Jonah squirmed and scratched at his face and at the paper mask covering his eyes. I talked to him, mainly, about his mother and my late parents, about my sisters, his aunts and Cynthia's parents, his grandparents. “It's a small tree, Jonah, but your tree.” It was our very first one-sided conversation, though it didn't feel that way at the time. When I ran out of personal stories, I told him about fictional characters and what jerks they could be: Holden Caulfield and Molly Bloom and Jay Gatsby. Literature is one long parade of human folly, kiddo. If it teaches us anything, it teaches us that no one ever learns from their mistakes. We just make the same ones again and again. We are flawed creatures, every single one of us.

I remember a nurse glaring at me and conspicuously clearing her throat as if to say, “Is that really appropriate? Here?” I ignored her and told Jonah about Anna Karenina—“I know, I know, how could she choose Vronsky?”—and Oedipus Rex. “This one you won't believe.” All the while I kept both hands on Jonah's protective mask. He squirmed, half-asleep, for hours. Then he was awake and agitated and crying in that way infants cry: with every ounce of energy and commitment they have. As if he were a competitor on
American Idol.
There wasn't much I could do to comfort him so I looked for the nurse, for instructions, but she was gone. I knew I couldn't pick him up, so I just patted his head and told him about all the things we were going to do together, about Expo games and Preston Sturges. I sang a few lines from Lou Reed's “Beginning of a Great Adventure.” I quoted what I remembered from the beginning of
Ulysses.
The kid might as well know, right from the start, that his father was a pretentious clown. I was tired, and the heat from the tiny block of lamps—they were attached to each other like a miniature section of lights at a ballpark—was as irritating as fibreglass on my skin. All Jonah wanted to do was scratch; for that matter, so did I. Still, whenever his crying became unbearable, his squirming unsettling, I focused on the hot-shot doctor's words “damage” and “down the road” and I kept the mask secure. It was, to that point, the hardest thing I ever had to do.

The following afternoon an intern glanced at our son's metal chart and explained that while Jonah was doing better, his boss, Dr. K., had recommended an additional round of phototherapy. “Better safe than sorry,” the intern said or words to that effect. By then, we'd been in the hospital for eight days and I knew one thing: we needed to get out. If Cynthia didn't have post-partum depression by now, another day was likely to push her over the edge. I'd started reading the pamphlets—symptoms included insomnia, intense irritability and anger, overwhelming fatigue—and I was convinced I already had it.

“We're leaving today, this morning, as soon as possible.”

“But Dr. K. ...”

“I don't care who said what. We're taking our baby home today.”

It was frustration talking, fear, too. I couldn't bear another night with Jonah under those lamps. Mostly, though, it was conviction. In that moment, I was certain I was doing the right thing for everyone involved, for what was now my family. I was certain we'd be fine once we were home, the three of us. (We were, as it turned out. Once we got Jonah out into the sunlight, the jaundice disappeared. “That's all you had to do,” our midwife told Cynthia later. “You just had to take him home and put him in the window. Like a houseplant.”)

“My hero,” Cynthia said as we got into the car quickly, like we were planning a getaway. Still, even with my hands gripped tightly at ten and two on the steering wheel, I couldn't quite keep them from shaking. I was ready, even as I turned the key in the ignition, to do a 180, take the hospital's advice, and stay another day or two, if necessary. What difference would it make? What was I trying to prove? I was new to conviction, and I was learning that even for a new father it is a fleeting thing.

Close calls. When you become a parent for the first time you get a crash course in the close call. How parenthood, like most sports, is a game of inches, of “if this, then that.” True, all those novels I'd read had taught me the world was a precarious, fragile place, but it was likely a fact I took for granted. Now, I no longer could. Is the kid's car seat attached securely? Did I buy winter tires? Am I a good enough driver? You might as well be a hack Hollywood screenwriter pitching a disaster movie for all the time you spend dreaming up worst-case scenarios. Eventually, you relax. But the first time you notice your baby picking up a marble and putting it in his mouth or the first time you take your eyes off your toddler in a bookstore and he disappears, for a second, just a second, you are reminded.
Yes,
you think,
I remember that feeling
—
that's dread.
Of course, when you learn your child has autism, that dread not only returns, it settles in for the long haul.

“Now what?” I finally asked Cynthia as we drove out of the hospital parking lot. Both my hands were still stuck to the steering wheel. Her spirits had lifted in an instant. She was smiling and unwavering, a woman in charge. At last.

“Take us home, sweetheart.”

“COME SEE,” Cynthia says. “Really.” She peeks her head into the kitchen from the therapy room where she and Jonah are working on a timeline together. This is the latest in an ongoing series of arts-and-crafts projects Cynthia and Jonah have embarked on. They paint and glue and colour together. They've made calendars and plaster masks and invented a board game called
Let's Discuss Picking Your Nose and Other Adventures.
The game, Cynthia explained, is made up of useful everyday advice, social stories we can act out with Jonah. You roll the dice and learn something about “Waiting in Line” or “Using a Kleenex” or “Speaking in a Normal Voice” or Jonah's current favourite, “The Rules of Farting.” (Rule #1: Don't do it in public. Rule #2: If you have to do it in public, say excuse me.)

“I got the idea from you, when you were reading those
Let's Talk About
books with Jonah for his homework; you said you should write a book called
Lets Talk About Autism.
I thought that was a good idea.”

“And you did it instead?”

“You're not mad, are you?”

I'm not—does anyone really think I'm the kind of person who should be writing a self-help book? Still, it probably doesn't hurt for Cynthia to think I am a little bit pissed off. Which makes me think of another potential title for the Joy Berry catalogue:
Lets Talk About Passive-Aggression.

“This time I think he's interested ... really.” There's that word again—“really.” Cynthia repeats it like she's preparing for a debate. Like it's just the gimmick she needs to win some future and inevitable argument we are likely to have. I allow myself a minimal amount of skepticism. Show me, in other words, why this is different. This is, incidentally, the way Cynthia and I always seem to end up talking about Jonah; we weigh everything. What might be good and what might not be; what can be done about what is good and what has to be done about what is not. We were helicopter parents long before either of us had ever heard that casually disparaging term. When you are the parent of a child with autism you hover. What else can you do? The dishes, I suppose, which I'm up to my elbows in now.

“Leave them,” Cynthia says. “And come in here.”

“I just want to finish,” I say over the sound of the running water, not to mention my running internal commentary. Still, I can hear enough to eavesdrop and gauge how things are going. So far so good, it sounds like. Jonah is not stimming or giggling, not getting frustrated or angry, which are his usual options when he's not doing exactly what he wants. Instead, he seems genuinely involved in estimating how old he might have been when we drove to Toronto for a cousin's wedding. We have a photo of him, in a sports jacket and clip-on tie, holding a microphone. He wowed the crowd with a karaoke rendition of “Swinging on a Star.” On his favourite line about “all the monkeys” not always being in the zoo, he jumped up and down, his arms waving, his hands scratching his sides. He was three then, but he still asks me once in a while about that line, about why it's so funny. “Because we're all monkeys,” I tell him. One day, I figure I'll use it as an opening to a social story about the spectrum, about how it's really overrated. Trust me, Jonesy, I'll tell him, we're all part of it, life's rich pageantry.

“Was I a baby then? Or a toddler?” Jonah asks Cynthia. These questions are persistent, but encouraging nevertheless. They qualify, around here, as conversation starters because they are a rarity—questions Jonah doesn't insist on first knowing the answer to. They are asked spontaneously, without his usual twisted syntax. This is what's called dynamic as opposed to static conversation, and it is, according to Cynthia, what we need to start cultivating. That's because in a dynamic conversation, a person is no longer just concerned with their side of the conversation. That's also why the first time we hear Jonah say anything new or unexpected, we get a glimpse of what it might be like if he talked like this all the time, if he had a capacity for real conversation, one where no internal script is followed, no outcome predetermined by either party, where he doesn't freeze up or give rote answers like a person struggling to understand and speak a second language. It's easy to take for granted—this capacity to engage with others through conversation, to chat, shoot the breeze, schmooze, gab, make small talk. “Communicating with one another for no immediate reason has to be the most quintessentially and exclusively human of all our behaviours,” author and editor Daniel Menaker writes in
A Good Talk: The Story and Skill of Conversation.
But even though Menaker is right, I still resent the way he puts it: “has to be,” “quintessentially ... exclusively human.” I'm guessing he's never spent an afternoon in the company of an eleven-year-old with autism.