Illustration by Elissa Turnbull
One night when my firstborn, Max, was 4 years old, our family was camping on the South Pacific island where we lived when I woke suddenly. It was long before dawn, dark and unusually cold. I could hear the rhythmic bass of the restless surf — and something else. Something moving outside the entrance to our tent. Something much larger than a coconut crab.
I thought it was a stray dog trying to get into our food, so I was somewhat alarmed when I heard the tent zipper go up and a medium-sized shape pushed its way inside.
I was scrambling up to protect the boys, about to call my husband’s name, when the shape spoke.
“Hi Mama,” it said companionably.
“Max?” I asked.
Max crawled down the length of the tent and over the round lump that was his 2-year-old brother, Alex.
“Did you know I was outside?” Max asked.
“Um, no, actually,” I said.
“The dogs were barking and they woke me up,” Max said. “So I went outside to see. And then I went to see the fire. Did you know it’s still this high?”
Max touched my shoulder, and I sucked in a deep breath. The campfire we had made that night out of a fallen tree trunk was more than a hundred meters away, down by the ocean.
“You went all the way down to the fire by yourself?” I asked. The moon was almost full. Outside the tent, I knew it would be splashing silvery light across the sand and tracing the surging waves with flickering white. Inside the tent, though, it was too dark for me to see Max’s face clearly.
“But I put my shoes on,” Max said.
“Do you think it’s a good idea to go out of the tent in the middle of the night by yourself without me or Daddy?” I asked.
“But it’s not raining,” Max replied calmly, as if that could be my only concern.
I could see that this conversation — like so many others — wasn’t going to take me where I wanted to go anytime soon. So I deferred further discussion and put Max back into his sleeping bag. Then I repositioned my own sleeping bag so that if he decided to do some more midnight wandering, he’d have to crawl over me first.
By the time Max turned 6, we had been living in Vanuatu for three years. He could swim like a dolphin, open a coconut with a machete and resurrect a campfire from ashes you would swear were safely cold. Yet my husband, Mike, and I were constantly battling to get him to accomplish the most elementary of daily tasks — to get dressed, to eat or drink, hop in the car, accept the application of sunscreen, respond when we asked a question and stop when we said “no.” Max’s intransigence when faced with any request or demand that didn’t align with what he wanted to do in the moment was extreme.
Our friends called Max a “live wire” or a “pocket rocket,” and they mostly thought his escapades were funny. Mike and I, however, were the ones who regularly found Max running around naked on the roof, lighting fires, trying to catch snakes and wanting everything done exactly according to his — often unarticulated — expectations. We sometimes called him “The Maximator” or “Cyclone Max,” and while he often made us laugh, his volatility had us walking on eggshells. Over the years, Mike and I learned to recognize obvious flashpoints, such as turning off an iPad, but our child’s spontaneous emotional tornadoes were just as often evoked by things that hadn’t previously caused distress, like peeling the lid off a yogurt container, cutting a sandwich on an angle, opening the car door or letting his brother have a turn on the swing. Long after other kids seemed to have outgrown this sort of unpredictability, we were hyper-alert to setting Max off — always aware that a Category Five meltdown with inconsolable screaming, kicking, hitting or biting could occur at any moment, over anything.
When Max was little, Mike and I spent a great deal of time exhausted, wondering what we were doing wrong and how parenting our eldest child could possibly be this hard. But it wasn’t until Max entered kindergarten that our sense of things began to solidify: There might be more to this story than inept parenting and a particularly strong-willed child.
In kindergarten, Max was way behind his peers in learning to read. Interactions with his peers were often difficult: Either he didn’t seem to care much about playing with other kids, or he was invading other kids’ spaces. He was pushing or hitting when kids got in his space. He wouldn’t sit still on the mat, stay at a desk or complete a task.
Once, Max was caught pulling up all the marigolds in the school garden (whereupon he argued with the facility of a lawyer that marigolds weren’t native to Vanuatu and so should not be growing at a school in Vanuatu; therefore he was entitled to remove them.)
By the middle of first grade, he was diagnosed with dyslexia. Three months after that, attention-deficit/hyperactivity disorder. A year later, autism spectrum disorder.
When Max’s behavior and abilities are viewed using a western medical-model lens, he is considered “disabled.” And when it comes to accomplishing many of the tasks that our society values (such as eye-reading, connecting easily with peers, paying attention to something he doesn’t naturally find interesting, disengaging from things he does find interesting, controlling his impulses and managing anger) he is starting way behind the eight ball. He is undeniably “dis”-abled in these ways when compared to most of his peers.
Yet while the medical model can prove helpful when you’re struggling to make sense of difficulties and identify strategies that may help, it is not enough.
It is not nearly enough.
If you only look at Max through this deficit-focused lens, you’ll miss the remarkable creativity, his talent for systems thinking and problem solving, the fact that his restless mind never stops working. If you only see his extreme resistance to authority, you’ll miss his natural egalitarianism and independence and other qualities we hope will render him relatively immune to dangerous peer pressure. If you buy the party line that autistic people lack empathy, you’ll miss the reality that Max appears to notice and feel so much so intensely that life regularly overwhelms him. His literal mind may not interpret social exchanges in quite the same way that most people’s do, but he is empathetic, compassionate and generous.
Parenting Max has forced me to confront my own culture-bound assumptions about what is “normal” and how so much of what we call disability is contextually defined. I began to suspect that if he had been born into a First Nations community in North America or Australia a few hundred years ago, he would have been hailed as a skilled and fearless hunter rather than labeled “disabled.”
But he wasn’t. He was born to Mike and me. To this time and this culture. As a result, he’s stuck wading through sixth grade, still working hard to learn to read.
I know all this, but even as a parent it’s difficult to flip the “disorder” narrative and consistently embrace a more neutral “differences” one. Very few schools are truly designed to accommodate the learning style of those wired differently and build on their strengths. The negativity bias to which we are all susceptible keeps us focused on what’s going wrong, not on what’s going right. And, let’s be honest, these kids tend to be exhausting to parent.
Quite apart from the challenges created by their relative inability to regulate their emotions and attention, kids like Max do things like super-glue sewing needles into Nerf bullets so they can “hunt bush turkeys in the backyard” (and then get furious when you confiscate their lethal creation on the grounds of health and safety.) They tape steak knives into paper airplanes and launch them from the roof to see how far they’ll fly. They rarely leave a “no” unchallenged.
One day when Max was 9 and Alex was 7, I found the boys taking a running leap onto a foam mattress to go sledding down the stairs. To be fair, it looked like a great deal of fun, but as I didn’t actually want that mattress destroyed, I told them to stop.
“Oh, c’mon,” Max said. “One more time.”
“OK,” I said. “One more time.”
“Two,” Max said.
“One more time,” I said.
“Three more times,” Max tried.
“ONE more time,” I said.
“Four more times,” Max replied, as if this was a reasonable contribution to the dialogue.
“Max,” I said. “This conversation is a great summary of your personality.”
Max is 12 now. While he knows about his diagnoses, Mike and I mostly don’t talk with him about his “dis”-abilities. Instead, we talk with him about his “differences”: attention-deficit/hyperactivity differences,
autism spectrum differences. We talk about his “differently wired” race-car brain, and how it has the power to go really fast and turn on a dime but comes equipped with bicycle brakes. We talk about how everyone is smart in different ways, and how effort matters more than results. We try to talk about creativity, hyperfocus and other strengths just as often as we discuss the significant challenges we all encounter because of Max’s wiring.
This sort of deliberate celebration — this attempt to explain neurotype and identify strengths — is a critical undertaking. All too often those wired like Max never find success but instead limp through life extra vulnerable to addiction and awash in frustration and failure, amid a cacophony of admonitions to try harder and get with the program.
But if kids like Max can harness and cultivate their strengths, we will all benefit. After all, in the face of an alarming array of complex global challenges, now more than ever we need people who pursue answers for the problems and puzzles that capture their interest with a persistent intensity that is often labeled “obsessive.” People who process information in unusual ways. People who refuse to take “no” for an answer. People who weren’t afraid to leave the tent alone in the middle of the night to check on the fire when they were 4 years old.
Lisa McKay is a psychologist who specializes in trauma, resilience, international humanitarian work and parenting demanding children. She is the award-winning author of a memoir, Love at the Speed of Email, and a novel, My Hands Came Away Red. She lives with her husband and two sons in Australia.