by Bruce Kirkby
“Bodi, have you ever heard Mom and Dad using the word autism?”
“Nope,” he replied, without glancing up from his Lego.
“Everyone is different. Some people have dark hair. Others have red hair. Or blond. Some people, like you, have blue eyes. Others have green. One way isn’t better than the other. It’s just different.”
Oh god, it already felt so stilted.
“So we all exist on a spectrum, like the different colors of the rainbow. And autism refers to a group of people who see the world just a little bit differently than most.”
Bodi was looking at me now. Had he heard Christine and I talking about ASD before? He was an astute boy.
“When we say someone is on the autism spectrum, it might mean they don’t like loud sounds. Or they might be bothered by tags in their clothing. Many don’t like changes in plans. Some find it hard to play with other children. Or to look in their eyes. Some don’t like wearing shorts. Some spin to calm down.”
I paused, unsure what to say next. Finally I asked, “Does that sound like anyone you know?”
“Yes,” Bodi said, looking down and fidgeting with his Lego. “Me!”
My heart was hammering.
“Autism can mean a lot of different things. Some people struggle to talk. Others like to flap their arms, like a bird. You have just a touch, and we used to call that Asperger’s. Or Aspie for short. Now we just call it being on the spectrum.”
Although Asperger’s syndrome had recently been removed from common usage,I our counsellor still suggested using the term “Aspie” with Bodi in a lighthearted, almost joking manner, to prevent his diagnosis from feeling like a stigma or burden. As in, “Oh Bodi, that is the Aspie in you talking!”
Bodi stared at me, and I felt a wave of emotion.
“We love you so much, Bodi. Autism is just a small part of who you are, and of course, we love it too. But it means you will have some challenges that your friends might not—little things, like getting annoyed when people aren’t precise. If someone says it’s 3:20, when it’s actually 3:23, that can frustrate you. And it might be hard for you to play with other boys and girls at times. But it’s important to remember that being an Aspie brings lots of good things. You are very sharp. You spot details most others miss and understand things in a way that many others don’t. You are very honest. And you care for others. You are a great friend.”
I glanced at Christine, and she nodded. That was enough for now.
I asked Bodi if he had any questions, but he shook his head and returned to the Lego.
A stillness settled on our room.
* * *
Despite modern prevalence, and hints of widespread historical occurrence, Autism spectrum disorder is only beginning to be understood.II And public awareness lags woefully behind.
The story begins in the late 1930s, when a young Viennese clinician named Hans Asperger noted a group of aloof, awkward, and socially removed young patients, who all displayed remarkable abilities with math, language, and memory. He affectionately dubbed these boys his “little professors” and identified a surrounding constellation of behaviors he described as “autistic psychopathy”—“autistic” derived from the Greek word for self, autos, because such children seemed happiest when alone.
Notably, Asperger considered autistic psychopathy to be part of a spectrum we all exist on, and went so far as to characterize the condition as an extreme variant of intelligence. He implored colleagues to never give up on similar cases, confident that if such children could be taught to harness their skills, immense capacities would emerge.
But Asperger’s research was cast aside as Nazism swept Europe, buried in favor of extermination and sterilization programs designed to eradicate “deviant” children, including those with autism, cleft palate, cerebral palsy, schizophrenia, and physical disabilities.III
Meanwhile, in North America, a different interpretation of the condition began taking hold—one far less accommodating. Child psychiatrist Leo Kanner had noticed young patients who appeared to inhabit private worlds, capable of amusing themselves for hours with ritual behaviors such as arranging toy cars in sequence or banging on the floor. Apparently happiest when left alone, these children often threw violent tantrums at the slightest changes in their surroundings. In an uncanny parallel, Kanner also dubbed the condition autism.
But unlike Asperger, Kanner perceived autism as an incurable and devastating mental deficiency, advocating that autistic children be sent to asylums and suffer forced sterilization. In his cold view, those affected by autism could never contribute to society in a meaningful way and were capable only of menial tasks, such as garbage collection, floor scrubbing, and ditch digging.
Causing even further damage, Kanner squarely placed the blame for autism on parents, suggesting the condition arose from a lack of household warmth, spawning the term “refrigerator mother.” The bestselling book The Empty Fortress by Bruno Bettelheim (1967) went so far as to suggest “the precipitating factor in infantile autism is the parent’s wish that his child did not exist.” The New York Times painted an equally bleak picture, describing autism as “an illness, a suicide really, of the soul,” and psychologists routinely prescribed tough-minded, physically punishing therapies aimed at reining in a child’s unusual behaviors—severe techniques that to my mind seem akin to training a dog.
This dismal outlook would persist for decades.
As recently as 1989 (when I was twenty-one years old and studying engineering at Queen’s University) my hometown newspaper Toronto Star described autistic children as nerds, incapable of friendship, who could burst into tears for no reason “like stroke patients who have suffered brain damage.” In 2001, respected epidemiologist Walter Spitzer pronounced autism “a terminal illness… a dead soul in a live body.”
It is numbing to think this was the professional opinion of autism spectrum disorders just six years before Bodi was born.
But thankfully, a revolution is now underway.
It began quietly, in the late 1970s, when British psychologist Lorna Wing began questioning Kanner’s long-held assumption that autism was rare and always apparent at birth. Converting a London railway hostel into a school, Wing and her colleagues began seeking children who displayed traits reflective of Kanner’s autism, but on a more diverse continuum. Within months they were overrun with applicants. And nearly half of those had been born symptomless, experiencing developmental setbacks in early life.
Drawn to Winston Churchill’s concept that “nature never draws a line without smudging it,” Wing began to postulate that instead of being a singular condition, Autism existed on a spectrum. “All the features that characterize Asperger’s syndrome,” she wrote, “can be found in varying degrees in the normal population.”
In other words, we all carry bits and pieces of autism within ourselves.
Wing launched a determined campaign to transform the medical understanding of autism, persuading colleagues that diagnosis was not categorical (yes or no) but dimensional (what type?). Conscious of the stigma carried by Kanner’s term autism, she proposed a new diagnostic model, where a gamut of shades and hues were contained beneath the broader umbrella of autism spectrum.
But it was Steve Silberman’s 2001 article in Wired magazine, “The Geek Syndrome,” that launched a quantum shift in public understanding. Silberman meticulously detailed how brainiacs and high school outcasts, who once played Dungeons & Dragons in their parents’ basements, were now congregating in Silicon Valley, overtaking companies like Facebook, Apple, and Google, and refashioning the modern world in their image. His groundbreaking book NeuroTribes, published in 2015, argues powerfully for a broader acceptance of all those with cognitive differences—it is a book that has profoundly influenced my understanding of autism, as described in these pages.
Suddenly autism had become more visible, seen in movies, television series and books. Healthy role models began to emerge—scientist and activist Temple Grandin, actors Da
n Aykroyd and Daryl Hannah, professional surfer Clay Marzo—autistic individuals who were living successful, creative, engaged lives.
But despite such advances, the unvarnished truth remains that those on the spectrum face a maze of daily challenges that go beyond anything I could ever imagine.
* * *
“Bruce!” Christine screamed. “Come here!”
She was outside the hobbit door, and from the tone of her voice, I knew that something either incredibly good or terribly bad had just happened.
“Come, come, come!” she yelled as I rushed down the dark passageway. Outside I found her and the boys staring toward the sky.
“Birds!” she gushed. “Big birds. Overhead. Hundreds of them!”
I assumed it was a gathering of choughs, for they were now congregating in great flocks with the approach of winter. But in a glance I knew it wasn’t choughs. What were they, though? My eyes strained to recognize the silhouettes.
Golden eagles!
The raptors were descending on the monastery in outrageous numbers, swooping along cliff faces, soaring out over the open valley. I had never seen anything remotely similar, and counted over a hundred before losing track. More and more continued to appear, drifting over the summits above us. Were they harbingers of the coming winter?
The boys were beside themselves, jumping and pointing.
“I wish Lama Wangyal could see,” Bodi shouted.
The old monk had been gone six days, and we’d received no word of when he might return.
“Maybe he can see the eagles from where he is?” Taj suggested. “He’s got good eyes.”
Bodi scoffed.
A group of Japanese tourists came limping down the steep path from the assembly hall. But rather than admiring the eagles, they turned their cameras upon us. And to be fair, we must have presented a curious sight—four filthy, blond foreigners, giggling and pointing upward.
We stayed outside—Christine and I with arms wrapped peacefully around each other—until the convocation melted to dots over the central plains, eventually disappearing beyond ridges to the south.
A feeling of raw wonderment remained with me for hours.
* * *
Two days later, Lama Wangyal reappeared—an imposing figure striding up the trails.
Our class had been quietly working on mathematics when Changchup leapt up and began frantically pointing. It was lucky he’d spotted the old monk, for I’d left the house padlocked. And Christine was away shopping in Padum.
Lama Wangyal always insisted we lock the hobbit door, even if we were gone just for a few minutes. “Maybe bad people coming.”
“What bad people?” I asked once. A bad lama? The Nepali workers? Villagers?
“Yes,” Lama Wangyal smacked his lips with an inhale. “Bad men.”
I immediately dispatched Bodi with the key. He’d bought the old monk a gift (chocolate bar) and drawn a picture (Buddha) for him, both of which he was eager to deliver. I watched from the window as Taj chased after him, little legs churning down the dusty trail.
When class ended, I ducked out, excited to greet Lama Wangyal myself. Shuffling bent along the dark passageway, I bumped into Christine, who had just returned from Padum with a backpack full of supplies. She was wrapped in a bear hug with Lama Wangyal, and upon spotting me, the old monk pulled me close and kissed my face. His rough stubble brought a flood of memories; he was the first man to kiss me since my father died, twenty years earlier.
Lama Wangyal had returned from Leh with a trove of treasure: burlap sacks of onions, apples, dried apricots, cashews and Chinese noodles. He’d also bought our family a pressure cooker, the same type he owned.
“Now you making Zanskari food in Canada, and much brrr, brrr,” Lama Wangyal clapped.
His laughter turned into a coughing fit that left him hunched and gasping for air. Christine asked if he was sick, and he pointed to a sun-faded photograph on the wall. It showed him presiding over an outdoor puja as the Head Lama. Looking more closely at the photo, I realized his body was skeletal.
“When me Head Lama, too much sick coming,” Lama Wangyal wheezed.
At the time, he had been taken to Leh and hospitalized. The treatment was so expensive that Lama Wangyal had been forced to sell two of his yaks, liquidating what in local terms was a fortune. There had been several remissions in the years since, each treated with a regime of injections.
When I tried to ascertain what his sickness had been, the lama’s explanation was opaque. Lama Wangyal shuffled into the puja room and returned with a cardboard box overflowing with syringes and vials.
“You needling me, OK?”
“Sure,” I agreed, somewhat reluctantly.
Years earlier, during a wilderness first aid course, I’d injected saline into the shoulder of a classmate, but I was no expert. Lama Wangyal wasn’t concerned. Mixing a sachet of white powder with a vial of yellow liquid, he filled a syringe and handed me the needle. Then he peeled himself like an onion, pulling off a mustard vest, orange fleece and eventually a red collared shirt. Dropping to his knees and hoisting robes, he revealed a pair of perfectly hairless buttocks.
“Slowly, Mortub,” he commanded, for it was a large injection and, given too quickly, could hurt.
Holding the syringe like a dart, I placed my wrist on his butt cheek and with a quick flick, slid the needle deep into his gluteus. Gently, I depressed the plunger. Lama Wangyal probed his derrière for a bump, a sign the injection had been administered too quickly, and finding none, happily declared, “Mortub very good injection man.”
We were sipping tea when Lama Wangyal pulled a newspaper-wrapped parcel from his backpack. “In Leh, I buying you thanka.”
Weeks earlier I had asked Lama Wangyal if it was possible to buy a thanka, one of the ornate Buddhist paintings framed with silk and seen hanging in the assembly hall. Instead of answering, he asked for the exact time and place of birth for each member of our family. I assumed that was his polite way of saying no. But unbeknownst to me, after consulting scriptures and performing complex astrological determinations, he had commissioned four thankas to be painted by a well-regarded artist in Leh, each depicting Buddha in a pose considered auspicious for our individual births.
Now he unrolled the paintings, hanging each over the pallets where we slept. “This for Tashi. This Norbu. This Angmo. And Mortub.”
The thankas were stunning. Both Christine and I were overcome.
“You buying thanka, too much money,” he explained. “Tourist money. But me, no problem. Little money. Lama money.”
The four paintings had cost eight thousand rupees in total (two hundred US dollars), and I reimbursed the old monk immediately. Before departing our room, he declared that he would perform a blessing puja in the coming days.
“Very important,” Lama Wangyal said, as if an unblessed thanka was of no use at all.
* * *
The next day after dinner, Lama Wangyal arranged eight silver bowls on the low table in our room. A damaru was unwrapped. (This small traditional drum, with garnet-encrusted handle, had two pieces of coral attached by strings and created a racket similar to stovetop popcorn when twisted quickly.) A book of scripture appeared along with a silver bell and dorje.
Lama Wangyal began to chant, and our boys snuggled into his lap, one on each side. Saffron was added to water. The dorje and bell wove. An hour passed. Four tsampa statues—ascending in height like matryoshka dolls and eerily reminiscent of our family—were smashed on the cliffs as a reminder of impermanence. The puja reached a crescendo, and Lama Wangyal began tossing handfuls of rice toward the thankas, the grains pattering off the paintings like rain on a window.
“How are we ever going to clean all of this up?” Bodi whispered gleefully in my ear.
Christine pointed to Taj, who had fallen asleep beside her. “One landed on his forehead. And another on his heart. It must be a sign.”
Then it was over. The scripture was restacked between wooden plates; the d
amaru placed in its velvet-lined case; the silver bowls polished. Lama Wangyal disappeared.
After we tucked the boys in, Christine and I crawled quietly on hands and knees across the carpet, cleaning up rice by headlamp.
“You looked so shocked when he started tossing rice,” Christine laughed. “I’m almost certain Lama Wangyal tossed even more when he saw your face.”
* * *
Despite our shared affection for the old monk, Christine was losing enthusiasm for his planned visit to Canada. During the puja ceremony, Lama Wangyal declared that all four thanka must hang side by side in our home, occupying a single room absent of any other furniture. Needless to say, such redecorating was not high on her (or my) agenda, but Lama Wangyal could be bullheaded, and I sensed a standoff.
“I’m burnt out,” Christine sighed. “And the last thing I want to do when we get home is spend my days taking care of Lama Wangyal.”
I understood what she was getting at. Lama Wangyal’s presence in Canada would be an imposition on both of us. I foresaw it tearing me away from book writing, firewood gathering, house maintenance, ski training and all the other things I’d ignored since leaving home.
On the other hand, wasn’t the rush of modernity the very thing we were hoping to avoid on our return?
I hoped that the monk’s visit might bridge the divide, and carry some whisper of Zanskar’s tranquility back home with us. But most fundamentally, I cared for the gruff man, and bringing him to Canada—if that was what he wished for—simply felt like the right thing to do.
Whatever our individual feelings, it was too late to change course.
That afternoon I’d had a tough conversation with Lama Wangyal, explaining that our family’s departure from Karsha Gompa was just three weeks away, and if he wanted to return to Canada with us, he needed to submit his visa application to the Canadian consulate in New Delhi—in person, within the week.