As I sit down to write something about World Autism Awareness Day, I find myself struggling. Part of the problem is the sheer volume of posts out there: I want to say something that hasn’t already been said. I want to offer a perspective that people haven’t yet thought of.
Then there’s the fact that as awareness days go, World Autism Awareness Day is a little strange. On the days designated for, say, epilepsy, Down Syndrome or diabetes, entire communities rally together for a common cause. They unite in an “us against the problem” kind of way.
On World Autism Awareness Day, the divisions present within the autism community become even sharper and more viciously reinforced. It’s not a case of “us against autism”. It’s a case of “us against a multitude of factions within the autism community”.
So not only is it difficult to come up with something unique to say, anything I do say is likely to make someone mad at me.
As a writer who happens to be an autism parent, I try my best to represent the autism community with grace, compassion and honesty. I try to describe what it’s like to be an autism parent. But at the end of the day, the only true perspective I have is mine. I can’t necessarily say what it’s like to be an autism parent – I can only say what it’s like to be me. I can talk about my own experiences, my triumphs and disasters, my smiles and tears – and I can hope that someone, somewhere, will read what I write and feel less alone.
One of the most important things to know about autism is that it is so unique. That is to say, it manifests in countless different ways. It cannot be diagnosed the way most conditions can, by checking off symptoms on a checklist. Preoccupation with routine, for instance, is a quality that many people with autism share, but it’s not common to all of them. And many people who don’t have autism are preoccupied with routine. It’s same with communication deficits, sensitivity to light, sound and touch, cognitive delays and every single other thing that is commonly associated with autism.
If you’ve met one child with autism, you’ve met one child with autism.
I would like you to meet my child with autism. Here are a few little factoids about him that make life both a joy and a challenge:
- He is described as “functionally verbal”. In other words, he has the physical ability to talk, and he has the vocabulary, but he does not have the social incentive. He talks when he has to.
- He is a stickler for routine, but he can just about tolerate changes as long as he’s given advance warning. A lot of advance warning. Like a month or two.
- Everything in the house has its place. If the toaster is moved three millimetres to the left, it can cause utter consternation. My boy loses sleep over things like this.
- It’s the same with people. The kids in his class at school belong at school, and he gets badly disoriented if he happens to see them anywhere else.
- He will defend to the very last his right to wear his hat at all times. Even while he’s sleeping.
- He will defend to the very last his right to reject any shirt that does not have horizontal stripes.
- He is totally obsessed with my hair. If he could spend all day, every day, with his hands buried in my hair, he would. Sometimes I have to threaten to cut it all off unless he stops.
- He adores his dad, but his special connection is definitely with me.
- From time to time, he comes up with a random funny statement that he repeats over and over to the background of his own giggles. The phrase currently in vogue is “Hector is a damn baby!”
- He’s eleven years old, as tall as me, and has started going through puberty. The combination of autism and puberty-related defiance is – interesting.
- I worked as a computer programmer for more than fifteen years, and my son can find his way around a computer better than I can.
- I don’t need GPS as long as he’s with me when I’m driving anywhere.
- He can do complicated math in his head, but he cannot relate it to real life situations, like shopping.
- He hates haircuts, but he’s learning how to tolerate them.
- The first thing he does when he comes home from school every day is to ask where his nine-year-old brother is. They definitely have each other’s back, those two.
- He has the most infectious laugh I’ve ever heard. When my kid laughs, the rest of the world laughs with him.
- He loves fiercely and hugs like he means it.
If autism is a part of your life, I would love to know about it. If you know someone with autism, what little quirks contribute to that person being uniquely who they are? If you are someone with autism, what characteristics make you you?
By Kirsten Doyle. Picture used with the kind permission of Autism Spectrum Australia.