Let me first tell you about two recent outings with Georgia.
1. A few nights ago we went to the grocery store much later than we normally would. We stopped in on our way home from an evening event – something we don’t generally do – but hey, we needed cereal and milk. Stuff happens. Of course, when you’re dragging Georgia along with you, she is far less nonchalant. Her reactions appear, from the outside, to be worry or anxiety. Really, it’s just a way for her to figure out what’s going on. We’re doing something different from our usual routine, and she simply wants to know if the rest of the night is going to be equally as askew.
Her way of doing this? Repeating questions and statements loudly. Loud Repetitive Talking.
Picture us in the dairy section. She’s in her Marley T-shirt and jeans, pushing the cart with me. I’m still in work clothes and looking the typical Thursday night working mom: dark circles under eyes, slightly frazzled, cartoonish hair.
She’s repeating over and over and over loudly: “Nearly done, right? We’re nearrrrrly done! Nearrrrly done. Yep, we’re nearrrrrly done!”
Now picture the shoppers around us. One woman abandons her shopping cart to walk down the dairy aisle to get a better look at Georgia. Others pass by (looking for longer than is … let’s just say, polite) with furled brows and grouchy expressions. People peer across soup can displays and glare at us over piles of vegetables to check out who was daring enough interrupt the otherwise obviously much-sought-after pleasant muzak’ed ambience of the urban windowless sterile grocery store with Loud Repetitive Talking. It’s the stuff of horror movies.
Forget chainsaw-wielding dolls! Let’s make horror movies super scary and add Loud Repetitive Talking!
*cue ear-piercing scream*
2. Last week Georgia and I decided to spend a rainy Saturday at the movies. The theatre is on the fourth floor so we used the elevator. When the movie ended, Georgia really (really really) wanted to know what was happening next, as is her way. Were we going to the car? What would come after that? There was also some disappointment that the movie was over and the popcorn was all eaten, so we talked about that. You know, Loud Repetitive Talking.
This is normal for us. I’m used to this kind of reaction from her; I expect it and have developed ways to (try to) deal with it and not lose my patience. I engage her in other kinds of conversation and less repetition. But guess what? Sometimes this seemingly ceaseless stream of Loud Repetitive Talking happens.
And it happens in public. Shocking, I know. If you ever hang out with Georgia it is very likely you’ll experience this. And you know what? It’s okay. It’s simply okay. It isn’t scary nor is it cause for alarm.
On this particular rainy Saturday it wasn’t so okay. We were in a very crowded elevator with about ten other people. Silent people. Rainy-day, not-happy-looking people. All standing stiffly and trying not to touch each other and occasionally shuffling in their two square inches of space, the way people do on elevators, in complete denial that their elbow is resting in someone else’s midriff. Cue Georgia, more than a few shades too loud, repeating tenaciously and just slightly melodically, “The movie’s allll done. It’s all done now. All done. The movie’s all done, right Mommy? It’s all done, right!? The movie’s alllll done. Done, right?”
It’s absolutely amazing how fast twenty eyes can simultaneously lock on a kid repeating herself. In a split second, we were locked in the collective unfriendly glare of the crowd. I was surprised I didn’t hear a ‘click’ as their eyes shifted into place.
The elevator was slow. Slow as in I-feel-as-if-I-lived-a-lifetime-and-then-some slow. I met most of the glares and tried to match them, but you know what? I was tired. I was simply too tired to either open my mouth and try to educate the crowd [“She’s fine – just a bit anxious right now. She has autism and this is her way of working things out. It looks like anxiety to you, but she’s actually just fine”] or reassure them [“She’s fine, not in any trouble, just wants to talk about the fact that the movie’s all done”] or berate them [“Seriously? You need to stare at her? You’re okay with demonstrating this kind of behaviour to your own kid standing there?”] or be sarcastic [“Maybe you’ll figure her out if you stare long enough. Keep me posted”].
But I didn’t say any of these things. Instead I just replied to Georgia every single time and put my arm around her.
The stares felt palpably threatening in a way that’s difficult to describe. It’s the taste of something not unlike mob mentality, when you’re not part of the mob. The fact that each of these ten people had the same reaction and were seemingly unaware their behaviour had a negative effect on us was worrying and almost frightening to me.
I imagine this is what it might be like in the future to be the only non-Borg, the only one not in the collective, on the elevator.
The eyes on me made me feel hot. I started to sweat. I felt claustrophobic. And I went into full-on protective mom mode: arm around Georgia, I hugged her and I talked to her the way I always try to do: with patience and calm. I wasn’t in the mood to educate but I was not going to miss an opportunity to demonstrate basic human compassion, and try to show people that everyone should have the chance to just be in the world the way they are, without constantly being judged or evaluated by others. Especially those without all the information.
* * *
I went home, poured a glass of Chardonnay and sat down at my computer to do a few Google searches. I got 734,000 hits for the keywords “staring, autism.”
There were a number of hits for T-shirts that read, “Hey, keep staring — you might actually cure my autism!”but mostly they were questions in from parents — and some from people who have autism — who deal with this every day and are baffled and tired of it. There were lots of answers that cited cultural differences in eye contact and social norms. There were some answers suggesting that those who stare may simply be unsure how to ask if you need help.
Uh huh. I’m sure that sometimes it’s an issue of cultural norms, or merely a helpful stranger. But it happens too often to write it off as an altruistic phenomenon.
I don’t know what to do about this. I’ve read about mothers who carry business cards with information about autism on it to give to others. Or mothers who take the time, every single time someone stares at their child, to stop and calmly educate them on the spot about autism spectrum disorder. Good on them.
And I’ve done it occasionally.
But you know what? Some days I’m tired. I work hard, I parent hard and I’m tired. I just want to buy my butter and milk and double-stuff Oreos and cheesies (okay, and my vegetables) like everyone else and go home. I want to go to the movies with my kid and talk and eat popcorn and laugh and get on the elevator to go home, like everyone else does. Believe me, I am used to the fact that my experiences in public will differ from those with neurotypical kids. I’m okay with that.
I don’t worry about it — but the rest of the world seems to worry about it for me.
I notice those who stare far more than Georgia does — which makes me very happy for her and less happy for me. It bothers me that people can’t come to grips with something one degree off what they consider “normal.”
Normalcy, in a world of wonderful diversity is actually an outdated and unhelpful guiding construct.
Here’s what I want to say to them: At the end of the day, there is no impact upon your life, as an absolute stranger, to ride the same elevator as a kid with autism for 30 seconds. I don’t feel sorry for you if you have to experience this: If that’s your biggest problem, you’re doing pretty well.