Illustration: Nayoun Kim
I love and accept my boy unconditionally, but does that mean—if it is a fundamental part of what makes him him—that I must also love his autism? This is a question that hangs in the air and, much like autism itself, punctuates my every day. Even a beautiful morning in late summer…
We were meeting a child from my son’s former school. My nine-year-old was excited. This was his first playdate in months. When we arrived at the park, it was quiet. No one was on the climbing structure. Good, I thought. Too many kids may overwhelm him. Two nannies sat in the shade while their charges ran toy trucks back and forth beside the nearby wading pool. My son waited by the gate, and when he saw his friend arrive, his face lit up. She smiled and then made a beeline for the swings. For some reason, he refused to follow. He used to love this park, but in the past year something had changed with him or with the park—it wasn’t yet clear which one it was.
My son has autism, but I refuse to let it limit our family“Come on,” she called out to him. The swing beside her was free, and she wanted him to claim it. But my son stood rooted to the spot, his body rigid. Abject terror distorted his normally soft features. On the outskirts of the playground, where a band of grass met sand, he froze, as though taking one more step could cause him to stumble into a pool of scorching lava. The sand. It had always been there, and he had managed just fine when he was younger. But his sensitivities change over time, and I saw it was now a problem for him. Even with shoes and socks on, he was worried about his feet touching the sand.
Sucking in a breath, I gently touched his arm and coaxed him to join his friend on the swings. “You were so excited to see her. Now go and play.” He shook his head and then stared down at the sand. He was becoming agitated, and I knew he could quickly reach the point of no return. This playdate—which he’d been so looking forward to until just moments ago—was over before it had begun. My shoulders slumped as discouragement set in.
Play may be the work of children, yet for kids like mine, it can seem more like impossibly hard labour. My son is all too often held hostage by his own neurology. His almost pathological fear of sand is just one in a long list of anxieties—like getting his teeth brushed, his nails cut, his hair washed, his hands dirty—that makes day-to-day living so much harder than it should be for any child.
After making our apologies to his friend and her mom, we left the park. In the car I gripped the steering wheel too tight. The familiar lump rose in my throat, as it had on countless occasions in the six years since my son was diagnosed with autism. I had no idea what to do with the tangled knot of sadness, frustration and worry I felt rising, except to swallow it back down.
A developmental disorder, autism spectrum disorder (ASD) is characterized by social and communication difficulties, as well as restricted or repetitive behaviours. Not so long ago, the solution to autism was to lock it away in an institution. Mercifully, “autistic” is no longer the shameful or egregious label it once was. The neurodiversity movement, championed by the likes Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, regards neurological differences like those present in people with ASD as natural variants in the human brain—simply put, they’re alternate ways of thinking and being.
In this view, those inherent variations should be respected, even valued. In recent years, there has been a move toward embracing the neurodivergent and treating autism as a mere difference rather than a disability. In fact, to some, autism is seen as a special gift or a badge of pride.
With the hashtags #Neurodiversity and #ActuallyAutistic, self-advocates are using social media to help shift negative perceptions of autism and allow those with ASD to shape the public discourse about autism—one from which they were historically excluded. This change is overdue.
Then there are celebrities, like Dan Aykroyd, Daryl Hannah, Jerry Seinfeld and Courtney Love, to name a few, who are coming out and self-identifying as high-functioning autistic. Today’s autism is at once quirky, brilliant and charmingly eccentric. At least that’s what we are led to believe.
While I admire attempts by recent TV shows such as Atypical and The Good Doctor to give autism spectrum disorder a face other than that of Dustin Hoffman’s Rain Man, all too often the characters they offer up represent the Hallmark version of autism. Savants do exist, yet they are so much rarer than the media would have you believe. Perhaps there are people who experience autism as some kind of a cool idiosyncrasy. But theirs is not the autism that I and many other parents out there know so intimately.
The autism I know doesn’t get its own TV show. There is no Netflix drama about a child who peels so many layers of skin from his thumbs that he looks like an extra from The Walking Dead. There is no plot line about a kid who can learn the alphabet in a dozen languages and yet cannot hold a meaningful conversation. There is no sitcom about a nine-year-old kid with no friends or interests beyond playing with foam letters and watching his favourite Peppa Pig episodes on a loop. There is no pilot featuring a boy who has changed schools four times in as many years and who has been politely asked to leave most of the extracurricular activities he has ever joined. There is no series about a child who has never had a holiday to visit his grandparents because crowds, airplanes and, well, just about everything that travel entails are deeply distressing to him. That kid’s reality would not make for particularly good TV. And yet that kid is mine, and this is our life—our sometimes funny, sometimes brutal, sometimes heartwarming and always exhausting life.
In this brave new world of neurodiversity, parents of kids with autism aren’t supposed to complain about autism, lest it damage their child’s self-worth. While I do believe that difference in all its permutations makes our world a richer, more colourful place, I also understand the flip side. Where I see flashes of my son’s amazingly unique mind and his cheeky, lovable nature, I see his suffering, too. Because of his autism—whether through extreme anxiety, not being able to communicate, misreading social situations or exhibiting compulsive and sometimes aggressive behaviours that are part of his disorder—he feels distress every single day.
Even though he craves friendship, my son often ignores his peers or says rude or confusing things to them. Rather than go to a movie theatre, he’d sooner study different fonts or watch countdown videos over and over again on YouTube, because the loud noise and all the people, and all the unfamiliar sights and smells would just be too much. And when he is overwhelmed, he has been known to throw things, spit, strip off his clothes, kick and scream.
I see him struggle with the symptoms of his condition, and I want so badly to make things better for him. Over the years he has endured countless hours of therapy. Speech pathology, occupational therapy, emotional regulation therapy, applied behavioural analysis, Relationship Development Intervention, the Greenspan Floortime Approach—you name it, we’ve tried it. He’s tired. And so am I. He will never be free of his autism. And in striving to improve his overall ability to function in this world, I question whether I am somehow dishonouring his authentic self. Am I inadvertently trying to rid my zebra of his stripes?
Even those who are at the so-called high-functioning end of the spectrum, who can speak and grow up to live independently, struggle in their own painful way. They are acutely aware of being unable to fit into a world that isn’t designed for them. And it doesn’t end with childhood. Finding and keeping a job, starting and maintaining a relationship, trying to fake it till they make it day in, day out, can lead to debilitating mental health issues such as anxiety and depression. Compared with 15 percent of the general population, approximately 40 percent of adults with autism have an anxiety disorder.
I already see what this difference is doing to my son—how it takes his life and shrinks it to the size of a keyhole, leaving him staring out at a world replete with things that are impossibly scary, impossibly hard. Show me a parent who wouldn’t wish away their child’s distress. And wouldn’t my son, if given the chance, do the same for himself?
As long as my family lives in the shadow of ASD, I cannot view the disorder in a positive light. Though I bristle at the term “cure” (because autism isn’t a disease), I am quietly hopeful that researchers will learn more about the enigmatic disorder, and that there will be a brighter future for my son.