Bad Animals (24 page)

WHEN IT WAS PUBLISHED in 1967
The Siege
was the first account of autism written from a parent's point of view—the first “inside” story, as Oliver Sacks has called it. Not coincidentally, it was also one of the first memoirs that let other parents know they were not alone. The ambivalent feelings you have about your child, the love and the anguish, the daily heartbreak and heartbreaking work of living with a child with autism, the anger you harbour for the professionals whose advice can be hit and miss, at best, and cruel, at worst, are all painstakingly documented in
The Siege.
“This is what she did,” Park writes of her daughter Elly, “and what we did with her. I have put down almost everything.” It reads, in fact, like everything.
The Siege
must have been a gruelling book to write; it's certainly gruelling to read.
The Horse Boy
is, with all its rugged, swashbuckling adventures, a breeze by comparison.

What can feel overwhelming about Park's book is her meticulous account of her hard-earned, incremental accomplishments.
The Siege
is deliberately devoid of highlight moments to put on the cover. There is, instead, a photograph of a very young, very pretty girl looking lost in thought. “We were doing something terribly hard,” Park writes, and that is, on every page, indisputable. She and her family were also doing it all alone. Park really was in the wilderness when she began writing
The Siege,
and, at first, everything she and her family did on behalf of her daughter they did without guidance. Her intention, even so, was to find a clearing, if only to enable her to see a few steps ahead. At one point, Park refers to her daughter as having a “strange integrity,” and that's as good a description of autism as I've read. It's what you learn about autism eventually; it is always what it is. Park's own “strange integrity” made her unwilling to accept that fact of life with autism. She was indefatigable. She never quit.

If
The Siege
is one of the earliest memoirs written by a parent of a child with autism,
Son-Rise,
by Barry Neil Kaufman, has the distinction of being one of the earliest memoirs written by a father of a child with autism. What the two stories have in common is their protagonists' stick-to-it-iveness. Like Park, Kaufman is fiercely determined to do whatever he has to in order to reach his son Raun, who is diagnosed with autism at just seventeen months. Even at that age, his symptoms—isolation, passivity, lack of eye contact—are unmistakable. Unlike most parents with a child with autism, the Kaufmans have the dubious advantage of knowing, almost from the start, what they're dealing with, knowing, too, that they are dissatisfied with the treatments then available for their son. Kaufman and his wife Suzi, even their babysitters and friends, are way ahead of the curve, and the book has barely begun when Kaufman and Suzi institute a program of their own. It's mostly improvised, mostly a matter of following their gut, and their hippie-style instincts.
(Son-Rise was
published in 1976. And the Kaufmans are nothing if not in tune with their times.) For example, Kaufman and his wife begin their son's self-styled therapy by talking endlessly to each other about their own concerns. All their toxic, negative feelings, as Kaufman puts it, are spewed out in carefully and deliberately planned “rap sessions” wherein emotions run high and the prose runs purple: “We looked at each other through the mist in our
eyes
... our ears soaked with our explorations.”

“If it is a housecleaning of our feelings, go all the way,” Kaufman says of these sessions which often lasted until daybreak. “Fertilize the unhappiness. Get it out. Deal with it so we could be free ... a confrontation with the phantoms of fear.” Those phantoms are, admittedly, everywhere—in particular in the advice they receive from professionals and from the literature on autism at the time. This goes hand in hand with the labels they keep hearing applied to their son and his future. Raun, they are told, is “a tragedy. Unreachable. Bizarre ... hopeless.... Unapproachable ... irreversible.” But Kaufman, to his everlasting credit, is not undeterred. A new attitude is what they need, he decides, and so, simple as that, he gets himself and his family one. “We would kiss the earth that the literature had cursed,” he explains. “We would embrace all the beauty of our son. Raun would become for us a beautiful and enriching journey into our own humanity. We would walk together.”

Son-Rise
is a story of acceptance, but it's acceptance on a superhuman scale—off the grading chart in other words. What Kaufman never sufficiently explains is how a person is supposed to arrive, admittedly after a few marathon “rap sessions,” at this level of acceptance. There are no five stages for Kaufman; he cuts right to the chase. There will be, for his son, “no conditions. No expectations. No judgments. This attitude would be the place to begin with Raun.... His behaviours ... were perfectly okay with us.” No embarrassment either? No regrets? No desire to be somewhere, anywhere else? “To love is to be happy with,” Kaufman says repeatedly, making the line his custom-made mantra. As if it makes perfect sense. As if all of history, all of the literature dedicated to human beings and their flaws, hasn't taught us the opposite. That we are, in our heart of hearts, ambivalent creatures—never quite satisfied.
To love is to be happy with.
Repeat it to yourself, say it slowly, say it again, then ask yourself: Does that sound the least bit plausible? Never mind that, does that sound anything like love?

Still, if you can get past all the Age-of-Aquarius posturing in
Son-Rise
—and if I can, you can—then there is something surprisingly solid at the book's core. That's the Kaufmans' conviction that they know more about their son than anyone else. They are dedicated; not only that, they are ingenious. Raun's early therapy is one-on-one and intensive—it shares these features with ABA. In the beginning, it consists mainly of Suzi spending all day every day in the bathroom with her son. The bathroom is chosen for having the fewest distractions, the least amount of “interference from audio and visual bombardment.” From this point on, though, any planned interaction with Raun diverges dramatically from behaviour modification. Suzi is not modifying Raun's actions and behaviours; she's imitating them. She's spinning plates, flapping her hands, reinforcing his strangeness. All of this is meant to make him feel welcome, to join her in the world, assuming that's what he wants. No conditions, no judgments, remember? As in
The Siege,
gains are hard to come by at first and almost impossible to detect. There are setbacks and infinitesimal miracles. There is vindication. There is, above all, endless patience and faith. There is not, however, any mention by Kaufman of what is perhaps the one piece of mundane information about which every ordinary reader (okay, this ordinary reader) is waiting to be informed. Do the Kaufmans have a second bathroom?

GIVE ME AN A.
It took almost an hour, a couple of rolls of paper towels, a change of clothes, for Jonah, then me, but we managed to leave the house with the kitchen floor reasonably clean. A writing teacher told me once that you need to make a mess before you can start to clean it up.
All right,
I used to think,
but then what?
I know better now. You wait for the next mess. They're like buses or shamans. Another one will be along. In the meantime, Jonah and I have our priorities. Buy more syrup. It's on our list.

Earlier, when I was on my knees handing Jonah goo-soaked Scotties to throw in the garbage, he started to mutter about the conspicuous absence of syrup for his unexpectedly delayed lunch. A tantrum seemed imminent.

“Looks like you'll have to have mustard, hot, yucky mustard,” I said, raising my head to glance at him. While he grumbled, I waited patiently for him to look at me, to see me smirking, to listen and pick up on my tone of voice. But what was intended to be a pre-emptive joke was a minefield instead. His expression turned sullen, wary. He was gritting his teeth and balling up his fists, and then he caught my eye and understood. It took a moment but he got it.

“Yeah, right!” he said, loudly, though he still glanced at the pantry, worried about the mustard. This was an A+ for both of us. Sarcasm taught, learned, and generalized. I stretched out my fist for him to bump.

So we buy syrup first at the grocery story and then stop at the dollar store to deal with the rest of our list—the one we made specifically for
More Bad Animals.
This trip, according to my original plan, has an additional purpose. It will be a lesson in the simple exchange of goods. Jonah is largely indifferent, for instance, to the idea of receiving an allowance, but this summer we have been giving him one regardless. We do it every week, with the hope that the routine significance of it begins to sink in. Jonah is indifferent to the idea of money too.
We have to teach him everything, sweetheart,
I can't remember him ever asking us to buy him anything in a store, other than food. He will eye a toy sometimes, but he will never take the next step and ask for it or recognize that he has the wherewithal to buy it himself. We will have to teach him this, too, this basic step that is intuitive to all kids who learn instinctively and early on to pester their parents for what they want. We will teach him to be materialistic like all the other little neurotypical consumers.

This is the paradox at the heart of raising Jonah—how much he depends on us to make him independent. Because having protected him for so long, I am also required now to stop protecting him, and having guarded him from failure I am required now to let him fail. Every parent goes through this, I know. But with autism your intuition is continually turned upside down. The counter-intuitive is commonplace. Every decision feels like the wrong one, and the funny thing is, it's supposed to. In many ways, Jonah is like other kids, only reversed. He's not clamouring for toys, at eleven and a half, but he's also not clamouring to be left alone by his hovering parents. Children don't need to be taught to separate from their parents, but Jonah does. He won't, for instance, order me to refrain from kissing him or hugging him when we're out in public. I don't embarrass him because I can't. If anything, he doesn't want me to leave him alone in the dollar store. It's up to me to make that decision—in consultation with Cynthia's voice in my head:
let him try
—and come to the conclusion that the time is right to stand back and dispassionately observe. These days every moment is a teachable moment, and not only for my son.

At the dollar store, Jonah wanders out of line to approach a stranger and launches into a knock-knock joke. It's easy to see that he's not present enough to remember what is required of him next. Next can be a difficult concept for Jonah. It's sometimes hard to say if other people notice how distracted he is, or how odd he is behaving. Or if they just chalk it up to an acceptable amount of childish goofiness or undisciplined behaviour. Cynthia and I have both seen the look from other parents, the one that plainly says:
How did you raise him?

“Knock knock,” Jonah says again.

“Who's there?” the stranger says, reluctantly playing along. Meanwhile, I'm thinking:
Should I intervene? Should I wait?

“Elk,” Jonah says.

“Elk who?”

“Elkaholic.”

The stranger, who was mostly ignoring Jonah before, is staring at him now. Then he looks around to see if he can find this kid's parents. He catches my eye and I shrug. When he smiles back the smile comes out crooked. The stranger grabs his own child's hand and walks away. I imagine him whispering something to his son. But I can't imagine what. I'd rather not anyway. I should have intervened. I should have guessed by the look on Jonah's face, the giggly, distracted tone of his voice, that this business of exchanging money for goods had him stumped. All of which is a reminder to me that he should have learned this sort of thing by now, and if he hasn't it's because I haven't taught him, and if I haven't taught him it's because teaching him has required more of me than I was capable of—more patience, more persistence, more hopefulness. Finally, this ordinary trip to the dollar store is a reminder that it's time for all of us to be better, to be different. So rather than do what I am desperate to do, stand next to my son, keep him in line and moving forward, shush him, help him, apologize for him, worry about him, I put my head down, stare at my shoes, and count slowly to ten:
one-steamboat, two steamboats.
I'm hoping now that when I look up
(three steamboats, four steamboats)
in a few seconds Jonah will be at the front of the line
(five steamboats, six steamboats
), the notebook and animal stickers I prompted him to buy for our so-called sequel still in his hand
(seven steamboats)
along with the money required to pay the cashier
(eight steamboats),
and that he will say as loudly and as clearly as he can
(nine steamboats)
what I've coached him, practically word by word and on numerous occasions, to say: “I want to buy this please.”

Ten Steamboats.
I look up and he is, indeed, standing in front of a young woman at the cash register. All he says is “please,” and he mutters that. While she can barely hear him, I can and I'm farther away. She looks puzzled for a moment, but then he hands her the items he's remembered to bring to the cash. He also holds up his five dollar bill, his allowance, and while he doesn't hand it to her, he allows her to take it from him. I exhale and feel a sense of pride out of all proportion with what has just happened. This shouldn't come as a surprise after all these years: a life with autism is a life lived out of proportion, a life lived, at the best of times, slightly askew. The stress involved in going to a family gathering or the corner store or just being out in public can be extraordinary. So, as a consequence, can the feeling of accomplishment that comes when your child does something other children do so matter-of-factly and other parents take so much for granted. There are always a disproportionate number of disappointments to deal with throughout my long day with Jonah, but there are also a disproportionate number of moments when I find myself thinking:
This really is a big deal.
Matter-of-factness is sweet. I'm only sorry it has taken me so long to realize it.