Putting a label on my child’s glorious, sometimes confusing personality traits was harder than I expected. But now I know my hesitation was really ignorance.
The umbrellas were a bit of a giveaway.
My son’s obsession started when he was 18 months old and still just called them “baaa.” There’s a video of him in a rain jacket in our backyard from that time, glaring at the patio umbrella, saying “UP baaa, DOWN baaa, NO baaa, AWAY baaa,” over and over as my husband chuckled and followed his directions, putting the umbrella up, down, away, then up and down again. There’s another video from that time, but inside. My sister was feeding my son lunch at the table with one hand, holding a rain umbrella over him with the other, while he gave her firm instructions that she dutifully followed. Up baaa. Down baaa. No baaa.
At first, it was cute. But then his demands started becoming more frantic. Then he started having inconsolable meltdowns when any umbrella he encountered wasn’t set to his exact specifications, up or down or away, or when he wasn’t allowed to adjust them himself (like in restaurants or stores, or driving by people’s houses). I spent many drenched days standing in the pouring rain, pleading with my son to stop adjusting the umbrella and start walking. I had to drag my wailing son out of our first Father’s Day brunch because he wouldn’t stop screaming at the patio umbrella. I once heard our neighbours mutter “I’m sure it’s just a phase” from their side of the fence as my son once again spent another afternoon sobbing and screaming “UP BELLA! DOWN BELLA!” when he was two.
Eventually, we hid the patio umbrella in the garage, hoped my son would forget about it, and by the time he was three he’d moved on to becoming obsessed with the hose (FML). He’d spend hours spraying the water straight in the air, taking the nozzle apart to see how it worked, attaching different heads and tubing to adjust the stream, seemingly ignoring us when we’d tell him enough, and screaming with frustration when we’d finally shut the water off.
Now that my son is five, we know the underlying reason for his fixations: autism. Diagnosing him was simple enough—the psychologist only needed two hours. For me, though, feeling comfortable calling him autistic has been a much longer process that meant dismantling biases and reframing misconceptions I didn’t even know I had.
Approximately one in 66 children in Canada between ages five and 17 are diagnosed with Autism Spectrum Disorder, a neurodevelopmental disorder that affects how people experience the world, and affects each person differently. Some of the markers can include impairments with language, communication skills, and social interaction, as well as restricted and repetitive behaviours, interests and activities.
Autism is often misunderstood, outside the autistic community. Maybe on one extreme you picture Dustin Hoffman counting cards in “Rain Man,” or Sheldon Cooper, the endearingly persnickety genius in “The Big Bang Theory,” or Dr. Shaun Murphy and his photographic memory in “The Good Doctor” (all of which are problematic portrayals that perpetuate the harmful myth of the autistic savant, critics have pointed out).
Maybe on the other extreme you picture someone who doesn’t appear to make eye contact or communicate verbally, who flaps their hands or seems antisocial (emphasis on seems), which may ring true for some autistic people, sometimes, but not others, and doesn’t tell us anything about a person’s agency or abilities.
Maybe you can picture a little boy obsessed with umbrellas and the hose, but you can’t picture that same boy talking a million miles a minute, smothering you in kisses, singing lullabies to his baby brother, and proudly showing off his mountain biking skills. I couldn’t picture it, at first, either.
Diagnosing someone as autistic is like looking at a map of the stars and seeing them come together as a constellation, my son’s psychologist told me. I’d asked her what made her so sure he met the criteria, after only meeting him once? At this point, my son was four years old (nearly five), and we had been working with a counsellor for his bedtime meltdowns for about a year. The counsellor, after observing some rigid behaviours and mannerisms, encouraged us to pursue a psychological evaluation.
There was no one specific sign, the psychologist told me during the assessment, but rather a lifetime of behaviours, patterns and traits that can only mean one thing. These traits and behaviours are him, his personality, his essence, what I love about him—and, sometimes, what pushes me to my breaking point. These traits are also autism.
My son is constantly excited, loves to dance, asks a million questions, jumps out of bed ready to play and doesn’t stop until he passes out in an exhausted, snuggly heap at bedtime. He does well in school, loves swimming and gymnastics, gives amazing hugs, and lives for other people’s birthdays so he can buy them presents. He has a curious, imaginative mind, and can tell you why the moon glows, what happened to the dinosaurs and why a helium balloon floats.
He also will only wear clothing with soft tags, gets very agitated by traffic noises, doesn’t have much sense of personal space and often appears to be ignoring you. He says whatever is on his mind and is extremely literal (by far his most frequent question—and there are a lot of questions—is “how many numbers?” or “What should I count to?” This is his response to any abstract concept of time, such as “the butterflies should hatch soon,” “we have an appointment coming up,” “or “Daddy won’t die until he’s very, very old.”)
He has a hard time with transitions, especially getting out the door, sitting for dinner, or getting ready for bed. He has big feelings that he expresses in big ways, like screaming until my ears ring. He can’t stand the smell of peanut butter or the feeling of having cold fingers, and tries to control his environment in very specific ways when he’s feeling anxious (which is often).
The stars were all there, shining, ready to be connected. But to be willing to put a label on my child’s glorious, sometimes confusing personality traits was harder than I expected. I now know my hesitation was really ignorance.
I balked when his counsellor first suggested he showed signs, thinking, “But he’s so social!” I’ve since learned many autistic people are incredibly social, and many others are very good at acting social when they’re actually incredibly uncomfortable. For instance, my son will tell me he had a great day at school, but will walk out of his class with stiff legs and clenched fingers, only relaxing his body when he’s back home.
I initially worried that labelling my son would make people perceive him negatively, but I’ve since learned that this fear is my own ableism showing. A label helps us understand him, support him when he’s overwhelmed, and access services such as occupational therapy that will hopefully make living in a neurotypical world easier for him. I thought that since he seemed “high functioning,” calling him autistic wasn’t even necessary. I now understand that “functioning” labels are also ableist, harmful and inaccurate, because how do we really know how well someone is functioning? And what even is “functioning” anyhow—does it mean acting like everyone else? I would never want my son to be anyone but himself. He is who he is, whether we name it or not.
Educating myself, confronting my own biases, and connecting with autistic adults in Facebook support groups has helped me reframe my perceptions and expectations, although I am still learning, and always will be.
Now, with a diagnosis, I’m able to give my son and myself more grace and patience. If eating buttered noodles on the couch with his tablet five nights in a row during hard weeks means he’s able to self-regulate and relax and have peaceful evenings, neither of us have failed. Not even close.
Now, I know that softly tickling my sensory-seeking boy’s ribs while he’s lying in bed helps his body and mind slow down for sleep. I know that asking questions soothes him, and knowing exactly what to expect eases his anxiety. So, I’ll tell him he gets to ask a few more “how many numbers?” Three more questions, then have three songs, and then it’s time to close his eyes.
Some days are harder than others for us both, and I know my son will likely face more challenges and adversity as he gets older. But as I sing “Twinkle twinkle,” each night, and stroke his soft curls, I’m grateful the stars aligned the way they did. Because I wouldn’t change a thing about him. And that means calling him what he is, with confidence: autistic. Not just “a little on the spectrum” (there’s no such thing) and not just “spirited” (although he certainly is).
I finally told him that he’s autistic five months after his diagnosis. I should have told him sooner, I know that now, but I thought I needed time to educate myself and learn how to tell him properly. At first, I didn’t want him to feel like he was different, not realizing at the time that he probably already did feel different, and not telling him why was a disservice.
Still, I read everything I could, talked to other parents, ordered children’s books that I decided not to give him (he does not need the pressure of thinking he has “special gifts” or “sensory super powers”), asked his paediatrician for advice, and asked questions of autistic adults in my support group who called me on all my biases and told me to tell him, like, now. Finally, I sat him down on the couch, held him, and started on my carefully prepared speech.
At the end, I asked if he had any questions.
“Yes,” he said. “What do lions drink?”
Satisfied, he ran out the back door and made a beeline for the hose.
My son is autistic, and perfect, and I love him.
Do I love getting sprayed as he sets up yet another backyard water feature? No, but by now I’m used to the occasional shower.
FILED UNDER: Autism first person Parenting Special needs Special-needs parenting