In line today at the Piggly Wiggly grocery store in South Carolina I took note of the surfeit of tabloids and magazines whose editors are apparently obsessed with Kate and Will’s as-yet-unborn baby.
Second prize for excessive publicity goes to the new Kardashian-West
compilation baby. And then there’s the constant obsession with celebrity kids, whether Brangelina’s brood, Suri and her high heels, the tiny Beckham supermodels or Gwen Stefani’s uber-cool, mohawked small-boy-band in the making.
But in the midst of all the “breaking all the pregnancy wardrobe rules,” acquiring the perfect nursery accessories, hiring the perfect chef and trainer to get back to pre-pregnancy weight (“or better!”), the Hollywood baby showers of tiny perfect cupcakes that no-one eats, and tiny perfect presents for the imminent perfect baby, I wonder.
What if Kate and Will have a child with autism?
In the midst of the unrelenting acquisition of perfection, what if something, somewhere is just two degrees off? What if they have a wonderful baby who won’t stop crying but no one, not even the Queen, quite knows why?
A baby who can’t sit still for royal events? A baby who misses all of her developmental milestones? What about a kid who screams in public or has to wear earphones to cushion the sensory input at noisy events? What about a child who laughs too loudly and inappropriately at public events or talks loudly through movies? What if they don’t have a “typical” child but rather one who lives outside the norm?
What would that change, if anything? Would the world change at all? Would the world ever pay as much attention to autism as it does to the tiny shoes on the feet of celebrity children?
In the first course on the ethics of disability I took in graduate school, we learned about the concept of social construction. Simply put, the things we experience as “normal” in the world are only so because of the context in which we live. Because of the world we have constructed, we are socially programmed to consider certain things normal (and, of course, other things abnormal). Beauty, justice, gender, disability, romantic love – these are all examples of social constructs.
Here’s a tangible example: The modern world of architecture and urban planning was carried out by largely able-bodied professionals. Thus the norm is stairs — and ramps are the exception. If most architects and urban planners were in wheelchairs, ramps would be our norm and stairs would be something that we would add on, when we remembered to.
Autism is (still) very much the abnormal.
Even with increased awareness and a related increase in prevalence, people with autism still live outside the social construction of normal. As a mom to a kid with autism, I feel it more acutely at certain times, in certain places. In the movie theatre when she doesn’t get that she cannot talk constantly and loudly throughout the movie. In the restaurant where she wants to cuddle the neighbouring diners’ small baby. In the street when she asks strangers their name.
All of these things are outside of what we consider to be norm – unless we lived in a very different world.
We’re on vacation in South Carolina right now (thus, the Piggly Wiggly). We took Georgia out for dinner last night. We usually eat dinner in our little rented beachside home, so going out is kind of a big deal.
Now Georgia usually loves – loves! – restaurants. Especially sushi restaurants. The kid eats salmon sashimi the way other kids eat cheesies. So we found a great sushi restaurant just inland from where we are. We got her a new dress for dinner (thank you, Target). The drive started badly, as she was terribly concerned that the drive would be too long and that we were actually driving the wrong way. The constant diatribe of worry from the backseat was foreboding. On our way into the restaurant we found a thumb-sized frog in the parking lot, made his acquaintance, named him after one of Georgia’s teachers – her idea, and took his picture.
We walked into the place and it was happening: lights, televisions, big fun booths, super-looking sushi and a friendly waitress whose name was Courtney. So far, so great, right?
For some reason – and this is very odd – Georgia didn’t have a good time at all.
She was anxious about something from the moment we left home. Ruminating – she does this out loud, unlike most of us silent ruminators – increasing her anxiety level by the minute and my level of anxiety along with it.
As soon as we sat down, she began repeating that “the food isn’t here yet” and demanded her iPod and headphones. Once the food did arrive and the technology was confiscated, she continued to worry that the food wasn’t ever coming, despite it being in front of her. She then vocally worried that we weren’t going home yet, and refused the sushi she would normally love. Her agitation increased, and with it, her volume. While the waitress thought we were just hungry (“My, you ate that up quickly!”) we just wanted out. A loud scream of frustration as her iPod was taken away in preparation to go home drew the attention of our already-curious fellow diners, and was the crowning jewel of the evening.
I was acutely aware that Georgia’s behaviour, while bafflingly new to us to some degree, was making others uncomfortable. It was, so to speak, outside of the norm for restaurant behaviour.
I read somewhere that Brad Pitt had rented an entire pizza restaurant for himself and his 6 children. They ate pizza, threw stuff, ran around like crazy and just generally wreaked havoc. Stuff you’d never let kids do in a restaurant full of other people. He knew that. So he made sure that no one else was there whose dinner, whose sense of peace and quiet, would be rudely interrupted by their presence.
What if we changed the social construct of normal for a moment? What if the world considered persons with autism the norm – and those without to be the ones who are just a little off? I chuckle to think of it. What kind of a world would we live in? It’s impossible to say; take 50 kids with autism and you have 50 very different little people.
But if Georgia constructed the world, it would be interesting, colourful, sweet and even a bit mystical. It would be difficult to figure out. Baffling at times. It would be normal to talk through movies and call out even the most minor character (e.g., a bird that appears in the sky for a micro-second flying over a minor character’s head). Christmas could be on any day you wanted it and there would be merry-go-rounds on every street corner.
You could cuddle any stranger’s baby. Every T-shirt would have a team number on the back. Vanna White would live next door. You could dance much more on the beach. Pizza would never be too hot right out of the oven and you could sing loudly in restaurants.
Without, of course, renting the whole place out first.