Yesterday, a friend told me about an incredible conversation that she had had with her Autistic niece. The girl, like Brooke, is ten, soon to be eleven.
The conversation is not mine to share, but truthfully, the details don’t really matter anyway. What matters for this post is that it left me feeling something. Something uneasy. A disconnect. Even envy perhaps, though I don’t dare to say that out loud.
You see, the conversation that my friend had had with this extraordinary kid was so far removed from where we are with Brooke that it was nearly unrecognizable to me.
I was happy. God, I was happy for this kid. For her self-awareness and her emotional maturity and her ability to express herself and her feelings. I was happy for her.
And yet, something nagged at me.
That’s not my kid.
It’s not where we are.
It’s not our autism. Not even close.
Over the weekend, Brooke said to me, “Mama can you see?”
“See what, baby?” I asked.
“See my face of how I feel,” she said.
I looked at her face, a caricature of sadness. “You don’t look very happy,” I said.
“I feel sad,” she said.
“Oh, sweetheart,” I said, “what can I do to help?”
“I don’t know,” she said.
“Do you know why you feel sad?” I asked.
She said, “No.”
“Do you want to talk about it?” I asked.
Her answer was as huge as it was heartbreaking.
“I don’t know how.”
The amount of progress that she’s made to get to a place where she can tell me that much is mind-blowing, not to mention the work that she’s done to get there. I don’t discount it, nor do I allow it to be cheapened by comparison. I really don’t. And yet, my friend’s story about her niece … it lingers in the air.
Because as happy as I was for her, somewhere deep my heart hurt for Brooke — my girl. For her frustration, her confusion, her overwhelm. For the fact that she cried into her mama’s shoulder that night with no words, no framework, to tell me why.
And I thought of you – you who come here and read my words. You who so generously revel with me in Brooke’s consistently astounding progress. You, the parents out there who read these stories about a kid who can say, “I’m sad,” and who think, “That’s great, and I’m happy for you, but that’s not my kid,” or you, the Autists who say, “That’s not me.” And who, while genuinely celebrating with us, are also hurting somewhere deep for someone who’s just not where we are.
And I want you to know that I get it. That I don’t ever pretend to know what you live — what your children live. I don’t.
And I don’t know what to do about it other than to say it out loud. To tell you that I get it. And to say again what I’ve said a thousand times before, that while Autism is one word, there is no one Autism. That its iterations and manifestations are so varied as to, at times, make their singular title, as appropriate as it may be, feel like a cruel joke.
What Autistic people share is important. Their commonalities deserve attention and demand validation. Shared experiences create community and community creates empowerment. That matters – a lot. But so too, we have to acknowledge the differences. We have to say at every turn, assumptions based on a single word don’t work. Bifurcation of a spectrum of human beings by what we perceive to be “levels of functioning” doesn’t work.
Autistic people may all be Autistic, but, by God, first and foremost they are people. And people, no matter how much they share, are different from one another. One characteristic, no matter how pervasive, cannot be the sole descriptor of an entire group of human beings.
So if you read my stories and say, “That’s not my kid,” or, “That’s not me,” I get it. I really do.
A former colleague of mine once said, “I don’t get why they call Autism a spectrum when it’s really not linear at all. Why not call it a prism? The Autism Prism.”
I tell my story here and I help my daughter share hers. It’s all I can do. Only you can tell yours, or, if you’re a parent, help your child tell theirs. And if you do, if they do, if we all do, eventually we’ll be able to show the world just how varied, how three-dimensional — and how beautiful — this prism really is.