Ed note: Warning, what follows is deeply personal, intensely honest and pretty damn raw. I’m fairly certain that one could take sentences and even full paragraphs out of context and I’d pretty much look like an @sshole. Hell, maybe even when taken in full I look like an @sshole. But I think the chances are far lower if presented in its totality.
That said, I ask two things as you continue on – 1. That you reserve judgement until you’ve read the entire post. 2. That you link to the post rather than quoting it.
And I’ll add a third – that you read it in the spirit with which you’d want your own diary to be read.
The Thinking Person’s Guide to Autism has a wonderful initiative this April. In honor of Autism Awareness Month they’re publishing interviews with autistic people. One by one, they are showing the faces of autism, and in so doing offering the world a glimpse at the people behind the label.
It’s exactly what I preach day in and day out, isn’t it? Ad nauseum really. Tell your stories, demystify autism, pull back the curtain to reveal the amazing people behind it.
So I was thrilled when I got the interview questions in my inbox. I began to think about which picture of Brooke we could use for the post. Perhaps one of my beautiful girl laughing her incredible, whole body laugh. Or maybe one of her doing happy. Whatever it would be, I looked forward to choosing together.
On Saturday morning, Brooke and I were cuddled together in my bed. She was playing on her iPad, her head propped up on my hip. It seemed like the perfect opportunity.
I opened my laptop and looked at the questions.
What is your name?
Do you have a website?
What would you like a one-sentence description of yourself to say?
Do you have any autistic superpowers? What are they?
What are some situations that make you happy, or satisfied?
What are some situations that make you sad, or anxious?
Are there specific topics you find particularly compelling?
What are your preferred ways to be social?
What traits do you prize in a friend, or companion?
Are there parts of your life you wish were easier?
What’s the next big goal you have for yourself?
What does bliss feel like to you?
I’d already asked TPGA’s managing editor, Shannon if it was OK to modify the questions to make them accessible to Brooke. There was no way my girl was going to remotely understand words like compelling or concepts like bliss. Of course, she’d readily agreed.
So what I planned to present to Brooke that morning were the now significantly modified questions.
“Hey, Brooke, Honey,” I began, “can you tell me what it feels like when you’re really, really happy?”
“I smile,” she said.
“Well, yes, Baby, you do. That’s a great answer. But how do you feel on the INSIDE when you’re smiling?”
“Like I’m happy.”
I tried again.
“How do you like to spend time with your friends?”
“When I’m with them.”
“Right, Baby. When you’re with your friends, what do you like to do with them?”
“I like to be with them. You’re all done asking now.”
And I was. Because I knew that we’d get no further toward really answering the questions. Sure, I could eventually get her to tell me that she likes to do Ring-Around-the-Rosy or Hands-in when she’s with friends. I could probably tease out that the fire alarm makes her anxious. But her answers would be an inch deep and a mile wide and as much as they are fabulous and wonderful and BROOKE, well, if we’re being even remotely honest here, they were not really answering the questions in the spirit of their intent. Not even close. And most importantly, we were done because I knew that to continue on was going to be really difficult for my girl. She had made her choice and I planned to honor it.
So I gave up. And as much as I’d like to claim that it didn’t, it made me really, really frustrated. And sad. And somewhere deep, angry.
I didn’t want to be angry. And anger wasn’t warranted or justified or right, but there it was.
Because I had looked at the interviews with the autistic people who had already posted and by God they lived in another stratosphere than my girl. And they struggled too (and by no means do I mean to imply that they struggled or struggle any less or any more than my girl) and God bless them, they talked about those struggles and I was grateful – overwhelmingly grateful – for that, but so too I was so painfully aware in that moment that they COULD talk about their struggles and their bliss and their anxieties and their superpowers and the ways they like to socialize.
And that is just not where my girl is.
And maybe someday she will be there – I believe with all my heart that someday she CAN be there and we work and we work – oh how SHE works – to get there. And if she gets there, great. And if she doesn’t, fine. But it’s not where she IS. And in that moment, that mattered.
Because I looked at those faces in the posts and I knew – so palpably I knew – that they were – that they ARE – the faces of autism. And yet – they are not OUR autism.
And that’s OK. It’s more than OK, it’s wonderful, right? Because aren’t I the one who preaches (again and again and again) that autism is one word but there is no one autism? Yes, I am. Because I believe down to the depths of my soul that it’s true – that autism comes in so many and such widely varied manifestations as to make their shared title a ludicrous farce. For God’s sake I say it so often I could type it in my sleep.
But nonetheless, I had this moment. This awful, ugly, human moment where I wanted to stand up and shout, ‘Stop! That’s not OUR autism! That’s not what WE live. That’s not my girl!’
And I hated it. But so too I was grateful for it. Because in it I saw the mothers and fathers and the autistic adults and their siblings who read about my girl – my girl who talks – by God she TALKS! – and who reads and who is identifying emotion and practicing self-calming and connecting and Jesus, making a friend, and I see them shaking an angry fist and saying, ‘Stop! That’s not OUR autism! That’s not what WE live. That’s not my child!’
And I felt it. I viscerally, painfully, intensely felt it. What it must be for the parent whose child has no words, who feels as though they live under siege – desperate to keep their autistic child and his siblings safe, cleaning feces from the walls again and again, awake around the clock, saying, how DARE you? How DARE you present your shiny, happy story to the world and say, ‘This is autism’? Cause that sure as hell ain’t OUR autism.
And in that awful, ugly, human moment I got it. And I wanted to apologize to half the world and curse the other half and then throw up my hands and walk away in defeat – because HOW? How the hell do we do this? How do we explain that they’re ALL autism? Cause ludicrous farce or not it’s the only word we’ve got.
And then, as so often happens when we allow ourselves to feel the things that we don’t want to admit to feeling, the shattered pieces began to come together and just like that, it all made perfect sense.
I realized that it’s exactly why TPGA needs to keep running those fabulous interviews with the brave and wondrous people who are willing to bare their souls to tell the story of autism – the beautiful, frustrating, complicated, messy, overwhelming story of autism. To break down the walls, to find understanding and compassion and validation and celebration and support and community and all of the things I want so badly for my girl.
And it’s exactly why I need to keep writing – at least until my girl can tell me to shut up or join me or take over and write for herself if she so desires. It’s exactly why EACH AND EVERY ONE OF US in this community has to keep talking. To each other and to everyone else out there who we and our children will encounter.
Because autism is one word, but there is no one autism.
This is our autism.
What is yours?
Photo by David Land