The umbrellas were a little giveaway.
My son’s obsession started when he was 18 months old and still just called her “baaa”. There is a video of him in a rain jacket from that time in our back yard staring at the umbrella and saying “UP baaa, DOWN baaa, NO baaa, AWAY baaa” over and over while my husband giggled and followed his instructions to the umbrella up, down, away, then up and down again. There is still a video from that time, but inside. My sister fed my son lunch with one hand at the table and with the other she held an umbrella over him while he gave her instructions, which she dutifully followed. Up baaa. Down baaa. No baaa.
At first it was cute. But then his demands became more hectic. Then he got heartbroken breakdowns when an umbrella he came across didn’t meet his exact specifications, up or down or away, or when he wasn’t allowed to adjust it himself (like in restaurants or shops or while driving on people’s homes ). . I spent many wet days standing in the pouring rain and begging my son to stop adjusting the umbrella and start walking. I had to drag my whining son out of our first Father’s Day brunch because he wouldn’t stop yelling at the parasol. I once heard our neighbors mutter from their side of the fence, “I’m sure it’s just a phase,” while my son again spent another afternoon sobbing and screaming, “UP BELLA! DOWN BELLA! ”When he was two.
Eventually we hid the parasol in the garage, hoping my son would forget about it, and by the time he was three he became obsessed with the hose (FML). He spent hours spraying the water straight into the air, taking the nozzle apart to see how it worked, attaching different heads and hoses to adjust the jet, and seemed to ignore us when we told him enough, screaming in frustration when we finally turned off the water.
Now that my son is five, we know why he was fixated: autism. Diagnosing him was easy enough– the psychologist only needed two hours. For me though Getting comfortable calling him autistic was a much longer process that meant breaking down prejudices and revising misunderstandings that I didn’t even know I had.
About 1 in 66 children in Canada between the ages of five and 17 will be diagnosed Autism Spectrum Disorder, a neurodevelopmental disorder that affects how people experience the world and affects everyone differently. Some of the markers may include impairments in language, communication skills, and social interaction, as well as restricted and repetitive behaviors, interests, and activities.
Autism is often misunderstood outside of the autistic community. Maybe at an extreme that you imagine Dustin Hoffmann Card counting in “Rain Man” or Sheldon Cooper, the lovably astute genius in “The Big Bang Theory”, or Dr. Shaun Murphy and his photographic memory in “The good doctor“(All are problematic representations that perpetuate what is harmful Myth of the autistic savant, have critics pointed out).
Perhaps, at the other extreme, you imagine someone who neither seeks eye contact nor communicates verbally, flaps their hands or appears antisocial (emphasis on appears), which sometimes applies to some autistic people, but not to others, and tells us nothing about a person’s ability to act or be able to act.
Maybe you can Imagine a little boy obsessed with umbrellas and the hose, but you can’t imagine the same boy talking a million miles a minute, choking you with kisses, singing lullabies for his little brother, and proudly his mountain bike Skills shows. At first I couldn’t imagine it either.
Diagnosing someone as autistic is like looking at a map of the stars and piecing them together into a constellation, my son’s psychologist told me. I asked her what made her so sure he met the criteria after meeting him just once? At that point my son was four years old (almost five) and we were working with a counselor for him Collapse before bed for about a year. The counselor, after observing some rigid behaviors and mannerisms, encouraged us to conduct a psychological assessment.
There was no specific sign, the psychologist told me during the examination, but a life full of behaviors, patterns and character traits that can only mean one thing. These traits and behaviors are him, his personality, his being, what I love about him – and sometimes what pushes me to my limits. These characteristics are also autism.
My son is constantly excited, likes to dance, asks millions of questions, jumps out of bed ready to play and doesn’t stop until he passes out exhausted and cuddly before bed. He does well in school, loves swimming and gymnastics, gives great hugs, and lives for other people’s birthdays so he can buy them gifts. He has an inquisitive, imaginative mind and can tell you why the moon is shining, what happened to the dinosaurs, and why a helium balloon is floating.
He will too only wear clothes with soft labels, gets very upset by traffic noise, has little sense of space and often seems to ignore you. He says whatever is on his mind, and is extremely literal (by far the most common question – and there are many questions – is “how many numbers?” Or “what should I count on?” every summary time concepts such as “the butterflies should hatch soon”, “we have an appointment”, “or” Dad only dies when he is very, very old “.
He’s struggling with transitions, especially when he’s walking out the door, sitting for dinner, or getting ready for bed. He has great emotions which he expresses in a big way, as if he were screaming, until my ears ring. He can’t stand the smell of peanut butter or cold fingers and tries to control his surroundings in very specific ways when he’s feeling anxious (which is often the case).
The stars were all there, shining, ready to be connected. But being ready to label my child’s glorious, sometimes confusing personality traits was more difficult than I expected. I now know that my hesitation was really ignorance.
I hesitated when his advisor first suggested he show signs and thought: “But he’s so social!” Since then I have learned that many autistic people are incredibly social, and many others are very good at being social when they are actually feeling incredibly uncomfortable. For example, my son will tell me that he had a great day at school but walks out of class with stiff legs and clenched fingers and only relaxes his body when he gets home.
I was initially concerned that labeling my son would make people perceive him negatively, but I’ve since learned that this fear is my own ableism. A label helps us to understand him, to support him when he is overwhelmed, and to access services like occupational therapy, which hopefully make life easier for him in a neurotypical world. I thought it wasn’t even necessary to call him autistic as he appeared to be “highly functional”. I now understand that “working” labels are also detrimental, harmful and imprecise, because how do we really know how well someone is working? And what is “functioning” anyway – does it mean to behave like everyone else? I would never want my son to be anyone other than himself. He is who he is, whether we call it or not.
I educate myself, confront my own prejudices, and connect with autistic adults in Facebook support groups helped me reformulate my perceptions and expectations even though I am still learning and always will be.
Now, with a diagnosis, I can have more grace and patience with my son and myself. If he eats butter noodles on the couch with his tablet five nights in a row during tough weeks, it means that he is able to regulate himself and relax and spend peaceful evenings, none of us failed. Not nearly.
Now I know that the gentle tickling of my sensory-seeking boy’s ribs while he lies in bed slows his body and mind to sleep. I know that asking questions is reassuring, and knowing exactly what to expect eases his anxiety. So, I’ll tell him to ask for itThree more questions, then three songs, and then it’s time to close your eyes.
Some days are harder for both of us than others, and I know that as my son ages, he is likely to face more challenges and adversities. But while I sing “Twinkle twinkle” every night and stroke his soft locks, I’m grateful that the stars are aligned like they did. Because I wouldn’t change anything about him. And that means confidently calling him what he is: Autistic. Not just “a bit in the spectrum” (there is no such thing) and not just “witty” (although it certainly is).
I finally told him that he was autistic five months after his diagnosis. I should have told him earlier, I know that now, but I thought I needed time to educate myself and learn how to tell him correctly. At first I didn’t want him to feel different, at the time I didn’t notice that he probably already felt different and didn’t tell him why was a disservice.
Nevertheless, I read everything I could, talked to other parents, ordered children’s books that I didn’t want to give him (he doesn’t need the pressure to think he has “special gifts” or “sensory superpowers”), asked his pediatrician Advice and asking questions to autistic adults in my support group who called me about all of my bias and told me to tell him now. Finally I sat him on the couch, held him tight, and began my carefully prepared speech.
In the end, I asked him if he had any questions.
“Yes,” he said. “What do lions drink?”
Satisfied, he ran out the back door and hurried straight to the hose.
My son is autistic and perfect and I love him.
Do I love to be sprayed when he puts up another water feature in the back yard? No, but I’ve got used to taking a shower now and then.