by Bruce Kirkby
The first contractions began during the third period, and by midnight, it was clear this was no false alarm. We set off for the hospital in neighbouring Cranbrook, and as our rusty Toyota raced through darkness, snowflakes streaking toward the windshield made it appear as if we were travelling at light speed to a distant galaxy. In some senses, maybe we were.
Eighteen hazy hours later, amid screams and body-wracking exertion, the dilation of Christine’s cervix remained stubbornly stalled at eight centimeters. Eventually the midwife and obstetrician agreed: the huge baby inside Christine was not going to pass through her narrow hips.
“You need a Caesarean,” the obstetrician explained. “Right now. OK?”
Christine gazed at me, her muscular body exhausted, hair matted. She was beyond deciding. We had discussed a “birth plan” beforehand, both agreeing that the only thing that mattered was a healthy baby. The manner in which our child entered the world was not important. Still, I hesitated. The doctor glanced at me over his eyeglasses and waited.
I nodded. Immediately the room was bustling with activity. An anesthesiologist, whose meaty hands looked more like a mechanic’s than a surgeon’s, deftly slipped an epidural into Christine’s spine. Then she was wheeled to the operating room, where the shocking physical process unfolded out of her sight, beyond a hanging sheet.
“Have they started yet?” Christine asked weakly.
“Just getting going,” I lied as a team of doctors used fists and forearms to press on her distended belly, as if popping a gigantic zit. For an eternity, nothing happened. Then a tiny head burst out, dark hair glistening, eyes staring directly at me. The room was silent, apart from the ticking of a wall clock. Then a scream shattered the universe.
Shoulders followed, and the entire glistening body slipped out like a foal.
“It’s a boy!” someone yelled. “A healthy boy.”
Behind the sheet, tears streamed from Christine’s reddened eyes.
* * *
That first year passed in a haze of cotton onesies, milky skin, curious blue eyes, wonderment and love. And exhaustion. And stretches of boredom.
Neighbors and friends had long encouraged us to procreate. You’ll be such wonderful parents. A child brings joy and love like you’ve never known. Now they were suddenly singing from a different song sheet. A full night’s sleep? A quiet dinner? Sex? Bahahah! At times, I wondered if those bastards had simply been seeking company for their misery.
Our lives had been seismically altered, and along the way, Christine and I discovered that parental life does not entirely resemble the broadly marketed myth of soft blankets, cooing babies and unicorns. Yet despite such challenges, those early years felt normal to both of us, and everything appeared to be progressing the way it was meant to—until the age of two and a half, when Bodi abruptly began displaying both unusual behaviors and extraordinary abilities.
While his peers watched cartoons, he perused Lego instructions online, scanning schematic diagrams for models he didn’t even own. At other times, he sat alone and lined up toy trains, perfectly straight, over and over. Sensitive to sounds, he screamed whenever the freezer drawer squeaked open. Sensitive to touch, he refused to wear shorts or short-sleeved shirts, and insisted Christine tear every tag from his clothing. He wore a specific shirt for every day of the week (“my Monday shirt”) and vehemently refused all others. Christine began cutting his sandwiches in half; he begged her to stop. When she asked why, he explained between sobs that he couldn’t decide which half to eat first.
At the local supermarket, Bodi memorized the grams of sugar per serving for every cereal in stock, a habit he picked up from Christine, who checks such statistics fastidiously. When he spotted a woman dropping a box of Sugar-Crisp into her cart, young Bodi accosted her.
“That has seventeen grams of sugar!” he shouted. “It’s no good for you!”
The confused woman shuffled off, leaving our son in hysterics.
“Why did she take it, Mom? Why?” he screamed. “I told her it was bad.”
The tiniest transgression was capable of triggering a tantrum: arranging apple slices the wrong way, putting a book on a different shelf, pausing to chat with a friend on the street. Our days became a cacophony of tears. Bodi cried before breakfast, during breakfast, on the way to preschool and on the way home, while shopping, during dinner and as he drifted to sleep. He even sobbed in his sleep, haunting screams that brought us sprinting to find him bolt upright, drenched in sweat, clawing at the darkness.
Neither firmness nor compassion seemed capable of corralling his tears. Ignoring the outbursts only made the situation worse, and we felt increasingly powerless. At malls and supermarkets, Christine and I shrank from withering glances. Control your child.
I’d always blithely assumed I’d be a great dad, fun to hang out with, full of wit and wisdom, and able to cheer up my kids on even the greyest of days. But if those first years were any indication, it seemed I’d grossly overestimated my aptitude.
Worst of all, Christine and I were both plagued by a vague sense that Bodi was drifting away from us. Whenever we nestled beside him, on a sofa or bed, he would shuffle away, insistent on maintaining a space between our bodies. If I stooped to kiss him, he would look aside. When I held out my arms for a hug, he turned his back and then slowly inched toward me in reverse, as if my love were a spotlight too blinding to endure head-on.
Such signs and symptoms are so classic—so “textbook”—that if there is someone in your life facing similar challenges, you already know what is going on. Otherwise, the behavior probably appears to you just as disconcerting and mysterious as it did to Christine and me.
From the outside, I suspect we appeared happy. We had a healthy boy, lived within a supportive community, were blessed with a network of wonderful friends. We both remained physically active, jogging with Bodi in a stroller and cross-country skiing with him in a backpack. During the evenings, Christine continued to pursue her academic studies. I’d been recently cast to host an adventure television series for CBC and was writing for increasingly prestigious publications. Everything, it seemed, was on the upswing.
But behind closed doors, we were drowning. Taking Bodi to any type of social function was torturous. At backyard barbecues and neighborhood dinners, while the other little children ran in packs, our tearful son clung to our knees, demanding to return home.
“Never again,” Christine sobbed after attending a neighbor’s birthday party. “Why do I always fool myself into thinking it’s going to be better the next time?”
Having lost the capacity to deal with any social interaction, we stayed home, where every bleary-eyed day felt like an eternity, stretching from morning coffee to ever-more-copious glasses of evening wine. Along the way, Christine and I bickered, fought, grew depressed, went to counselling and then fought some more.
Our parental instincts clashed. Christine’s impulse was to smother our child with love, regardless of his behavior, while mine was to respond to Bodi’s outbursts with firmness. Neither approach worked, and as our frustration grew, I lashed out in anger, at times leaving the entire family in tears. We took a parenting course together—not a very romantic way to spend our first evenings alone since Bodi’s birth—but it didn’t help.
Early parenthood is supposed to stand among the happiest times of life, yet as we slipped deeper into despair, an unsettling divide existed between how I thought I should feel, and what I actually felt. For that, I was beset with guilt, sorrow and, at times, resentment.
* * *
One beacon remained in our lives. Christine and I always cherished our wilderness journeys together. So when Bodi arrived, we just kept going—and packed him along.
Looking back, I’ll admit I was driven at least in part by a desire to prove the naysayers wrong, to show that our adventurous lifestyle was not doomed to evaporate with the arrival of children. Yes, safety was our foremost concern, and yes, we modified our ambitions, but without question we stretc
hed the boundaries of what is considered “normal.”
When Bodi was just three months old, we packed him up into the alpine spires of Canada’s Bugaboos. Soon after, he spent a month camping on the windswept coast of Vancouver Island. At seven months, he was sea kayaking in Argentina. At eight months, we trekked through the Torres del Paine in southern Chile with our infant bouncing on our backs. By the time he was eighteen months old, Bodi had spent a quarter of his life in a tent.
To those who questioned our choices, I trotted out the standard arguments about the intrinsic value of fresh air, the wonder of sleeping under the stars, the improved immunity that comes with ingesting a bit of dirt, but in retrospect, the real reason we planned such long, challenging journeys—and took Bodi along—was selfish: the wilderness was the only salve we knew.
Whatever our initial motivations, it quickly became clear that such escapes provided immense benefits to our family. Unplugging from busy lives allowed Christine and me to connect with Bodi (and each other) in ways we could never replicate at home. On these journeys, I glimpsed again the woman I’d fallen in love with: confident, secure, happy. And I’d like to think she recognized the same in me. Most notably, such journeys calmed our anxious son, perhaps because of the simple daily routine; rise with the sun, break camp, move, set camp, sleep packed together in a tent, repeat.
So we continued, cycling in France, hiking in Wales, sea kayaking along Canada’s West Coast, canoeing in Canyonlands National Park, even goat packing for one hundred miles across Utah’s Uintas Mountains.
The arrival of Taj didn’t slow us. When the tiny boy was just eight months old—and heroic Christine still breastfeeding—we flew to Georgia (the country, not the state), bought a pair of pack horses and spent sixty days trekking the length of the Caucasus Mountains, skirting a war zone while surviving on the yogurt, honey and bread offered by passing shepherds. Perhaps because of the length and challenge of that journey, it was particularly impactful; for an entire year after returning home, I enjoyed a previously unknown depth when gazing into my boys’ eyes.
But such glories fade, and old habits return. I bought an iPhone. Opened a Facebook account. Joined Twitter. Bodi began sleeping less and tantruming more. We sunk deeper beneath the surface.
* * *
At some point in that whirlwind I started referring to Bodi as the “stress beaver.”
It was an epithet borrowed from my days of Northern river rafting, and Christine hated it. In the high Arctic, day after day of remorseless winds can gnaw on a guide’s nerves. Gusts blow rafts helter-skelter across the river. In camp, tents are sent tumbling and hats are torn from heads. Fires become a struggle to light. Sand and grit infiltrate every meal. Plates and cutlery are tossed from serving tables. At night, tents flap incessantly and sleep proves elusive. After just a few days, the entire crew is shattered, gnawed to the bone by the “stress beaver.”
Like these Arctic gales, Bodi seemed to unintentionally make even the simplest daily tasks more challenging. He struggled to settle at night, rose long before dawn and only seemed to sleep soundly if we needed him awake. He was never hungry at mealtimes, but famished to the point of tears whenever food was unavailable. He refused to wear hats in the winter or short sleeves in the summer. The list goes on and on, and viewed individually, such issues appear trivial—it feels embarrassing even to mention them—but in concert they had become overwhelming, and although we were loath to admit it, something didn’t feel right.
When Christine shared such concerns with doctors, she unfailingly received the same response: “You are an over-anxious mother. Bodi is fine. Stop worrying.”
For years we accepted this advice and plodded along. But suddenly Taj gave us a new yardstick. While the tiny boy brought many things to our life—a mischievous, stubborn spirit with an infectious laugh—he was also the unmistakable embodiment of neurotypical, though we didn’t know the word yet. When we gazed into his eyes, he gazed back. Rather than avoiding physical contact, he sought it. He said hello and goodbye to strangers without prompting. He didn’t writhe on the floor at the mention of leaving the house. Day in and day out, Taj required just a fraction of the parenting energy that Bodi demanded, and his presence made it irrevocably clearer that something was “different” with Bodi.
Absorbed with work, I remained blithely optimistic that somehow, someday, everything would work out. But Christine would not be swayed, and driven by the seismic forces of motherhood, she took matters into her own hands: scouring the internet, calling university colleagues, and poring through academic texts. Gradually, a theory began to form. To test her suspicions, Christine slipped from her chair one day at lunch and crawled beneath the kitchen table, even as Bodi talked to her. When he didn’t pause or ask what she was doing, she knew.
A month later, we drove to the Child Development Centre in nearby Cranbrook, where Bodi was assessed by a team of child-assessment experts. Later, as he played with plastic dinosaurs, they gathered Christine and me, looked us in the eye, and gently confirmed that Bodi was on the autism spectrum.I
A deluge of other words followed, but I don’t remember any.
Driving home, I felt numb. Fuck. Then confused. What the hell is autism anyway? Then hopeful. I’m going to love Bodi so damn much that I’ll love this right out of him.
Beside me, Christine was sobbing so hard I doubted she could see the dashboard. Even before the grief began to ebb, she had entered protection mode. “No one can know about this,” she wept. “Ever.”
She’d grown up in a small town. She knew how rumours spread.
* * *
Unless you have family or close friends on the autism spectrum, or are on the spectrum yourself, there is a chance you know as much about the condition as I did when Bodi was diagnosed: almost nothing.
In a nutshell, autism spectrum disorder (ASD) encompasses an extremely broad palette of neurodevelopmental challenges, ranging from non-obvious eccentricities (such as aversion to eye contact or tendencies toward repetitive behaviors) to the completely non-verbal (individuals who may suffer from impaired motor function, sensory processing deficits and self-harming behaviors, such as headbanging.)
Despite talk of a modern “epidemic,” autism is not a disease (i.e. an illness caused by a known biological agent), but rather a syndrome, or a cluster of symptoms.
While sweeping generalizations are dangerous, one characteristic common to many on the spectrum is difficulty interpreting social cues. Tony Attwood, author of the definitive Complete Guide to Asperger’s Syndrome, uses this analogy: Imagine a driver unable to comprehend traffic signs. While perfectly capable of driving in isolation, they would suffer disastrously on a shared road. Similarly, a child blind to common social cues—the green light of a smile; the slow down of crossed arms; the stop of a teacher’s “ahem”—is prone to mishaps, misunderstandings and, ultimately, isolation.
Today, the US Center for Disease Control estimates one in fifty-nine children are on the spectrum, making ASD twice as common as it was just seven years ago. Despite raging conspiracy theories, this increase is completely unrelated to childhood vaccinations. Rather, it is driven by expanded diagnostic criteria (the funnel has grown wider) and improved diagnostic opportunities (more children are passing through the funnel).
What this all means is someone in your life is almost certainly affected by ASD, and there is an equally good chance you don’t know it.
* * *
Somewhere deep inside every parent live unspoken dreams for their children: happiness, freedom, a loving partner, an engaging and meaningful career.
In the days following Bodi’s diagnosis, such aspirations were cast aside as Christine and I found ourselves considering, for the first time, if he might succeed in more modest goals: making a friend, getting a job, living independently. It felt, at times, as if our lives were balanced on the edge of oblivion.
But oddly the diagnosis was also a source of hope.
For one, it explained our strugg
les. More importantly, it gave Christine and I something to work on—together. In that respect, it might have saved our marriage; or in all fairness, I should say Bodi saved us. Suddenly we found ourselves facing the most difficult and confusing challenge of our lives.
Parenting a child on the autism spectrum is not intuitive, at least it wasn’t for me, and our support counsellor began by explaining that Bodi was awash with anxiety caused by noise, people and changing routines. In such an emotionally elevated state, he was incapable of responding appropriately to even simple requests. Thus our first job became finding ways to methodically and repeatedly reduce Bodi’s angst, calming nerves jangled by the clamor and uncertainty of a modern world, bringing some measure of certainty to his life. Then, and only then, could we start making headway with his behavior and relationships.
We also faced a race against the clock, for research suggests that early intervention, notably before the age of five, offers profound advantages to children on the spectrum. Bodi was diagnosed at age four and a half.
While I was determined to help our son as best I could, my efforts were dwarfed by the ferocity with which Christine addressed these challenges. She devoured books, subscribed to scholarly journals and attended conferences, quickly becoming an expert in social theory and behavioral modelling. She sought expert help and ferried our son to endless appointments. Her laminating machine worked overtime, preparing visual schedules for every part of Bodi’s day—little Velcro-backed images organized his life into series of discrete and manageable events.II Together, we used a five-point scale to help him understand and manage both external noise and internal emotions. Week after week, we prompted Bodi to say “hello” when meeting a friend and “goodbye” when we left.