Bad Animals (17 page)

What is love? What is autism?

These two questions were ranked one and two a few years ago on Google's top-ten list of the most frequently searched for “what” questions.
Google knows everything,
I remember thinking. But how? How could Google possibly know you have to answer the first question before you can even attempt the second? That they are inextricably linked? More to the point, how does Google know Jonah and me?

Obviously, the two Google questions aren't linked. That they ended up combined in this online survey is random. For most people, for instance, the neurotypical and the parents of the neurotypical, one question will have no conceivable connection to the other. The first states the obvious: everyone is bewildered by love. The second question is pure percentages: it's an indication that autism—and the public concern about it—has become ubiquitous. The second also explains why personal writing on the topic of autism has boomed in the last decade. It's simple: autism is booming. Statistics are all over the map, it's true, but when Leo Kanner first identified the disorder in 1943, he reported a rate of incidence at 1 in 10,000 children; now the Centers for Disease Control (CDC) in Atlanta report a rate of 1 in 110 (just a few months ago it was 1 in 150). The numbers for boys are even more alarming, as high as 1 in 70. The reasons for this increase are open to debate. Is it an epidemic or is it just more likely to be diagnosed today? Is it environmental or genetic? A curse or fluke?

In his book
Unstrange Mind: Remapping the World of Autism,
Roy Richard Grinker, a professor of anthropology at George Washington University, makes a case for over-diagnosis. “The incidence of autism has not increased,” he says flatly in his introduction. “We are defining it differently and counting it differently than in the past.” For Cynthia and me, the count goes on in classrooms, playgrounds, shopping malls, restaurants. Something we were never aware of before is now impossible to miss. It's like when you fall in love and all you hear on the radio are love songs. Wherever we are, Cynthia and I will catch each other's eye once we've identified another member of the special-needs tribe—our tribe now. What did I do before this became a part of my life? I was oblivious, of course. Either that or I looked away.

Still, with the reason for the increase in autism anybody's guess, literature has done what it invariably does in the absence of scientific certainty or credibility—filled the vacuum with stories. There are countless websites and blogs; there are documentaries and memoirs on the subject, all more determined than ever to locate the meaning at the core of this elusive disorder. Most of these are the work of parents of children with autism or organizations begun by these parents. Grinker is an example. He wrote his memoir because of his daughter Isabel. She was two and a half when she was diagnosed in 1994, and Grinker admits he didn't know anything about autism then; neither did anyone he knew. His book, published thirteen years later, is part anthropological study—he focuses on how different cultures view autism—and part tribute to his daughter's brave struggle. He also talks about his own struggles: “I am not a religious person,” Grinker writes, “but there is something profoundly meaningful, if not spiritual, about being the father of a child with autism that has pushed me to consider lofty, abstract principles of life like truth, beauty, and goodness.”

What's hinted at here is the central theme in what has become a new kind of autism narrative: one dramatically at odds with what has been, in autism's brief history, a narrative that has invariably blamed parents for their children's behaviour. “The view of the parent as sinner,” Kamran Nazeer writes in
Send in the Idiots,
“is even present in the scientific literature on autism.” The earliest scientific literature, he means. Leo Kanner lectured, “often aggressively, on the cause of autism, which he summarized using the term ‘refrigerator parents.'” Kanner would apologize twenty-five years later for this label—“Herewith, I especially acquit you people as parents,” he told a gathering of parents of children with autism—but by then the damage was done, repeatedly by Kanner's successors; in particular, the charismatic author and talk-show guest Bruno Bettelheim. When Bettelheim, an Austrian-born psychologist and self-proclaimed disciple of Freud, published
The Empty Fortress: Infantile Autism and the Birth of the Self
In 1967, it instantly became
the
book about autism. It also became
the
book for blaming parents, specifically mothers. Bettelheim popularized the term “refrigerator mothers.” (The role of fathers, I'm guessing, was deemed too inconsequential to matter.)

Today, though, the typical autism story is more likely to feature super parents—mothers, of course, but more and more fathers who are willing, happy even, to do everything in their power on behalf of an afflicted child. Books like Catherine Maurice's
Let Me Hear Your Voice,
Clara Claiborne Park's
The Siege: A Family's Journey into the World of an Autistic Child,
and Barry Neil Kaufman's
Son-Rise
are early dispatches from a frightening frontier. They bear witness to parental perseverance. Their aim is to inform, but also comfort and inspire. These memoirs follow a common narrative path. First comes the realization, as Maurice writes early in
Let Me Hear Your Voice,
that “'the experts' I was consulting didn't know a whole lot more than I did.... Worse, they could delude themselves, with their degrees and their windy verbosity, that they were ‘helping.' I could afford no such pretensions.” In
Son-Rise,
Kaufman reaches a similar conclusion: “The professionals offered no real hope or help, but in our love for our son and his beauty we had found a determination to persist.”

This leads to the battle plan; namely, the decision to take matters into your own hands—“The Siege” of Park's title. Of her strategy to reach her daughter Elly, who dwells in “a solitary citadel,” Park writes, “We must intrude, attack, invade.... We would use every stratagem we could invent to assail her fortress, entice, seduce her into the human condition.”

In other words, it's the kind of narrative that puts most books about autism at odds with the books I've spent most of my life reading, reviewing, caring about. If literature has taught me anything, it's that believing you can understand the human condition is a mistake. Worse, it's hubris. The human condition, like the human brain, will always confound and defeat you. Or as Chekhov said: “It's about time that everyone who writes—especially genuine literary artists—admitted that in this world you can't figure anything out.” But while this kind of uncertainty may have worked fine for Chekhov, most people dealing with the incomprehensibility of autism nowadays are more likely to be drawn to the somewhat less eloquent prose of model/ actress and now autism activist Jenny McCarthy. McCarthy keeps it simple. In
Mother Warriors: A Nation of Parents Healing Autism against All Odds,
McCarthy recalls appearing on
Oprah
to talk about her son Evan for the first time. She was terrified, she admits, but she focused on her only reason for being there: “to offer hope, faith, recovery”

This promise of recovery probably explains why I'm inclined to avoid books like McCarthy's or why I approach them gingerly. I read them only when I absolutely have to and only then for bits and pieces, fragments of information. I also don't want to put myself in the position of criticizing another parent's good intentions on literary grounds. What kind of person would do that? All right, a professional critic; it's an occupational hazard.

So if I started Rupert Isaacson's
The Horse Boy,
as an example, but didn't finish, it was because I didn't like
my
reaction. I didn't like how irritated I became when Isaacson compared autism to the experience of being an immigrant to the United States, “living with one foot in (your) home language and culture, the other in the West, walking in two worlds. It's a rich place to be.”
Rich?
There's more to it, though. I also didn't want to be reminded of something I already knew—how hard it was going to be to measure up to what is attempted and achieved in books like McCarthy's and Isaacson's and Park's and Kaufman's. I didn't want to know how much superhuman effort was going to be required of me.

In
The Horse Boy,
Isaacson demonstrates that he's the kind of father, not to mention writer, for whom nothing is out of the question. Quite simply, he will do anything, go anywhere, to reach and rescue his six-year-old son Rowan from the devastating isolation of autism. If this means an arduous, seemingly foolhardy trip to Mongolia so Rowan can ride horses and be analyzed by shamans, so be it. When do we leave? Isaacson reportedly received a million-dollar advance for his book proposal. A documentary was made to coincide with the release of the book, and there are plans for a feature film for which Isaacson is writing the screenplay. The book's dust jacket says it's a “dramatic and heart-warming story of ... impossible adventure ... of a family willing to go to the ends of the earth to help their son.” The blurb on the front cover, from Temple Grandin, says: “This is a story everyone needs to hear.” Isaacson's publisher told the
New York Times
something similar: “I felt this was a story entirely driven by the chances you'll take for love ... who's not going to want to read [it] ?” So the question clearly is: what's wrong with me?

I suspect the problem I have with memoirs like
The Horse Boy
is the same as the problem I have with the memoir I've been trying to write for the last seven years: I have trouble believing it. Read enough contemporary fiction and you can't help thinking every narrator is unreliable, that everyone is leaving out something crucial. What is Isaacson leaving out? What am I?

The uninspiring everydayness of living with autism, its routine weirdness, its unbearable bearableness, its incremental ups and downs, is what so often goes unstated. Memoirs skip this part. So, for that matter, do news reports and documentaries. They don't have much to say about the frustrations of doing homework with your child or coaxing him out of bed in the morning; no conferences on teaching him to swing on monkey bars; no Power Point presentations on the effort required to have a conversation, a simple, ordinary conversation with your child rather than spending your day speculating on what that might be like. What's more, there is no behavioural therapy, no gluten-free diets for what autism takes out of you as a parent, the flaws it reveals in your character on a daily basis. All of that has proven to be either not worth conveying or, more likely, impossible to convey.

Whenever I try to tell someone about my life with Jonah it always sounds either far harder or far easier than it actually is. If the person I'm talking to looks overly sympathetic, I try my best to make it clear that Jonah is doing fine, all things considered. If the same person then complains to me about the difficulty their child is having getting along with his best friend, I wait, impatiently, for my chance to point out that Jonah doesn't have a best friend or any friends, really. The same problem arises when I try to write about autism. How do you make it clear to readers that you are coping and not coping at the same time? How can both things be true?

Of course, I know what my criticism of Isaacson's memoir sounds like—pettiness and professional jealousy. So I'm not blaming him or any of the other writers I've read or tried to read for just doing what writers are supposed to: make something incomprehensible comprehensible. So what if someone has to appear preposterously, incredulously heroic along the way? That is the tyranny of the happy ending, the perhaps unintended consequence of the ends-of-the-earth narrative, the epic quest. So what if I don't believe these stories or believe them enough to cancel out my own day-to-day experience, or the perpetual worry that maybe there are sacrifices I can't make? Chances I won't take for love? There are no anthropological studies for me to immerse myself in, no shamans on horseback for me and Jonah to ride alongside. Oprah is not waiting patiently to hear my tale unfold.

Or maybe it's just that I don't understand how anyone else does it. Gets through the day, I mean. Or manages to explain to other people—readers included—the tightrope you walk every day between despair and hope, embarrassment and persistence.

MY SISTERS WOULD RATHER not know about the time I'm spending in the basement writing a book they hope I will never finish. When the subject comes up, they counter with the latest childhood catastrophe they've spotted in the newspaper or on TV, a story about a child abducted or wasting away or set on fire by bullies. They collect these cautionary tales for me, a reminder of how things could always be worse.
Put that in your book
I imagine them saying. My sisters love Jonah unconditionally and will always defend him, especially against me. I understand this. I appreciate it too. Even so, I've never been good at putting things in perspective. In my experience, autism is uniquely cruel, uniquely elusive. It's like nothing else. As a consequence, comparisons don't apply. But if autism makes a lousy metaphor, it works well as a Rorschach test. It's often an accurate definer of character, and I don't mean my son's, I mean other people's.

On hearing the initial news about Jonah, a close friend said, “What happens in twenty years?” My guess is that the question just slipped out and that it was mainly rhetorical in any case. There was no answer. There still isn't. My guess is my friend, a lawyer, a compassionate but also a practical man, was just doing what we weren't prepared to yet, what I confess I am, after all this time, still unprepared to do—face facts, plan ahead. Cynthia insisted, when I told her what he had said, that he didn't mean it the way it sounded. This was undoubtedly true; still, it didn't change how it sounded to me. Like Jonah was being written off from the start. Either that, or accepted from the start. To be honest, I've seen too much of both—too many people who have given up on my son and too many who have accepted him too easily—and my problem is I don't seem to know which is worse.
You have to let this go, sweetheart.
So, all right, I will. I'll cut everyone some slack. That includes the husband of one of Cynthia's friends, who always looks, when he asks how Jonah is, as if his dog just died. Or the colleague of mine, a father of four girls, who, when I told him about Jonah, said: “Oh yeah, autism. We know lots of kids with that. It's no big deal; they grow out of it.” And while I'm prepared to admit that when we first found out about Jonah, no one could say anything right, it's also true no one seemed to come close.