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If you were there in my middle-income suburban home, you would find us in the hallway at the top of the stairs. If it were not for the darkness, you would be able to see us better.
I am the thick, six-foot-tall, 40 year-old man; arms crossed with a face that betrays my rapidly diminishing patience. I am inches away from my seven year-old daughter, a tiny girl who is half my height and a quarter of my weight. Her fists are clenched at the end of straight arms that appear locked to the side of her body. Her legs are close together, but her weight rests slightly more on her right foot as she has just completed another stomp.
Considering this event was triggered by an argument over turning on and off the lights, the severity of the emotions involved appear out of place and give the entire scene a sitcom-like quality.
The roots of this moment go back years. It began with birth of my daughter and spanned across several different doctors, psychologists and psychiatrists, hundreds of hours of therapy, and thousands of dollars worth of medical bills.
Along the way, we stumbled upon the diagnosis of high-functioning autism spectrum disorder (ASD). In other words, my daughter has Asperger syndrome. The diagnosis explains many things, but changes nothing.
“ASD affects executive function,” the doctors tell me.
This is what explains my daughter’s tendency to fixate on things. This fixation can express itself in a number of different ways – for example, my daughter’s love of marine animals. She can spend endless hours reading about dolphins, watching videos about sea turtles or wandering through the aquarium. The depth of her knowledge rivals that of a marine biologist (parental subjectivity acknowledged).
But the tendency to fixate has a dark side, such as the two hours it took us to get to school one morning because my daughter didn’t like the colour of her socks. I felt helpless, unable to provide the socks she wanted or to distract her from the depth of her sock crisis. I am constantly at a loss to explain why she is focused on certain things, or predict when the next sock crisis will occur. Throughout it all, the same doctors, psychologists and psychiatrists have constantly reassured me that I am not a bad parent.
“ASD affects sensory function,” I learn.
This is what explains my daughter’s affection for anything mushy: Play-Doh, mud, sand or water. It also explains her large collection of soft, comfy sweaters and blankets, the latter of which form the large nest she builds in bed each night to sleep in. She finds this kind of touch soothing.
But the opposite extreme exists as well. It took four tries for us to make it through our first movie, and that only happened after I discovered earplugs – to cushion the blows of the theatre’s surround sound. Theatres, concerts and trips to the mall all require thoughtful preparation or I run the risk of overwhelming my daughter, which can result in unpredictable consequences. I continue to require reassurance regarding my parenting competency.
All of this I have learned before this moment standing in the dark hallway of our house. I knew all of this moments before, when my daughter and I were performing a slapstick-like routine in which first I turn the lights on, then she turns them off, only to have me turn them back on. Despite knowing all of this information, I am standing in front of my daughter with a hard face, convinced that her actions are ridiculous and can only be explained as being part of a deliberate plan she has to drive me crazy.
It is at this moment that my daughter says to me, in a voice that is halfway between a scream and a whimper, “You know the lights make me dizzy.”
It had never occurred to me that light could make her dizzy. It had never occurred to me that “sensory function” was not synonymous with sensitivity.
My daughter’s perception of the world is very different than mine, but I had not appreciated that because it wasn’t tangible. If you were born without eyes and had never seen light, could I convince you that sunshine was real? If you had always been deaf, could you possibly appreciate the feeling I get when I hear my favourite music?
The world does not care if you are blind or deaf, just like the world doesn’t care if you are autistic. The world is only as “real” as we perceive it to be.
I realize that night that I have spent the past seven years pushing, pulling, interpreting and judging all of my daughter’s actions based on how I see the world. I did this without any consideration of the way the world looked to her.
My daughter may never know how much she taught me that night in the dark.
Jonathan Lee lives in Barrie, Ont.