a diary of a mom

Last night, I posted the following on Diary’s Facebook page:

Oh, Brooke. I’m so sorry. I saw that worksheet that came home in your backpack. The one on which you’d so diligently parroted back the lessons about what’s necessary to convince people that you’re listening to them, writing in “eye contact” so neatly, right there on the line.

I promise I’ll talk to your teachers, kiddo. We’ll make sure that they all know what it means to “respect your autistic identity,” just like it says in your IEP.

You see some people – a lot of people – are, well, pretty confused. For some reason, they perceive eyes as ears. I know that sounds bizarre, baby, but it’s a very real challenge for a lot of us. Even for your mama.

You see, we don’t have the same innate ability that you do to understand that there are as many ways to listen as there are to communicate. That there are as many equally valid and effective ways to engage with and show interest in and pay attention to the world around us as there are people in it.

We’ll keep working on it, honey. With your lead, we’ll start earlier and we’ll give people like your teachers and me the tools we need to compensate for what we don’t intuitively understand.

We will need your help. We’ll need your compassion and empathy and, heaven knows, your patience as we learn. You accommodate us every day, making allowances for our challenges. And for that I’m so grateful.

Keep the faith, my love. Just keep leading the way. We’ll get there.

Love,

Mama

I’m talking to Brooke’s team leader today. Because this matters. It matters in so many ways that we’ve read and talked about ad nauseam. But there’s one in particular that I just can’t stop thinking about.

Aside from all of the usual ways that teaching autistic kids that if they don’t make eye contact (something we’ve learned time and time and yes, time again is often not just uncomfortable but distracting, overwhelming, and even painful for autistic people) they will be perceived as rude, disinterested, poor listeners are problematic, it’s also teaching our kids that their autistic friends aren’t listening to them. And that’s not okay.

My daughter has been blessed with an incredible autistic community. In school, she is in a program with six other autistic kids with a class of seven more behind them in the next grade. About half of the people in her inner circle are autistic.

I’ve written before about how magical friendship can be with people who share this fundamental connection. It’s an incredible thing to see, and I consider myself blessed simply to bear it witness.

These friendships tend to be chock full of the things that doctors told us autism would eliminate or at the very least severely limit from Brooke’s life: meaningful connection, engagement, joint attention, shared enjoyment, empathy, compassion, communal concern for one another’s well being and comfort.

These kids listen to each other in ways that neurotypical folks often don’t. They listen beyond the words that they know well are often unreliable and hear the language of behavior. They sense emotion in prosody and tone. They recognize distress, fear, discomfort in the pattern of one another’s scripts and when they do, they help each other find safety.

And wonder of wonders, they do it all without making eye contact.

Perhaps that’s why they see and hear so much that the rest of us miss. Because while we’re staring at each other’s pupils to prove that our ears work, while we are formulating responses rather than actually, truly listening to each other, while we are convincing ourselves that it must be right because it’s what we’ve always known, they are absorbing it all.

And despite all of that, we’re teaching them – the autistic kids – and just the autistic kids, that if they’re not looking at us with their eyes, they’re not hearing us with their ears. Forget for a minute just how lacking is the logic in that concept. Let’s just think about the effort we’re choosing to make.

Why not just teach everyone else that eyes aren’t ears and that one has nothing to do with the other? How about teaching every kid in kindergarten that there is simply more than one way to take in information and all of them are equally valid if not effective? That some people need to move to process information because keeping their bodies still takes up the energy they need to listen. That some people are overwhelmed by the onslaught of emotion in eyes – that it’s just too much to take in while trying to also hear and decipher words. That some people are just really, really good at reading patterns and understanding different kinds of language and maybe, just maybe, they’ve got something to teach us.

But instead of learning from them, we’re teaching them that they aren’t listening to each other. That because they’re not doing it OUR way, they’re not being good friends to each other. That because they’re not listening in the ways that are intuitive to US they’re not showing care and concern and interest in each other. There is so much wrong with that I don’t even know where to begin. Delegitimizing these beautiful, authentic friendships does all of us such a grave disservice.

All because some of us lack the ability to understand what they know intuitively – that eyes are not ears and there are as many ways to listen as there are to communicate.

Brooke and Becky hugging after Brooke’s concert.