“Profound Autism” Isn’t Going to Assist the World Love A- the Means He Loves Himself — THINKING PERSON’S GUIDE TO AUTISM
What I want the most is for the world to see A- the way (I think) he sees himself. As an amazing human being.
Maybe this is my contribution to why not “profound autism.” It’s not about the term itself. It’s about the reason people want it, and what that would mean for my son.
It’s not that there’s a bunch of autistic people out there asking for Profound Autism because they’re going, “We are autistic too but we have a different experience in the world and society as other autistic folks do. So we want our own word. To represent us. To acknowledge how society punishes us and so we can celebrate who we are! What we contribute to society (a lot). Our joy. Our love. Our existence.”
Cuz if that’s what was happening, I would get behind that. An attempt to have the world see my kid the way he sees himself. A way for my kid to affirm his own positive view of himself.
And this is no small feat. I think. That we have a seven year old (looking ten year old) visibly autistic Black kid who’s made it this long and, I think, primarily feels like he’s smart, amazing, curious, funny, loving. I understand now why Disability Joy is the most radical thing of all.
We’ve been intentional about this.
We’ve been intentional about telling him he’s autistic, yes, and reading Just Right For You. But also because we know that he is going to think, one day, “Then why am I not like all those other autistic people? Why do the cops keep showing up at me? Why do people keep making comments about me? Why can they talk so easily and I can’t?” So we quickly moved into a next phase.
After the “You’re autistic and all brains are different” part… It’s been “What is a disability?” so that we can immediately go into explaining disability pride.
A- with his favorite purple sheet
He’s part of something so much bigger and wonderful than just him, than just the autistic community. He’s not alone in his struggles and challenges and judgements and dehumanization. It isn’t just him. It isn’t just autistic folks. And he can fight alongside many other disabled people if he wants to. That’s the part we’re at now.
Something else I do is I prioritize reading things that disabled adults write for disabled kids. Not just for parents or other disabled people. A- can’t read those things himself, so it’s important I read them and understand the messages and translate them to the appropriate communication platform for A-.
Again, not just autistic people. The essay I remember the most from Owning It is one by a man with one leg writing about his struggle to accept that he didn’t want a prosthetic and it was being pushed on him by those with a desire for him to be “normal” and “passing.”
And thanks to our amazing SLP, she had us early on making material for A- to develop positive self talk. Because of her, we made the book and Pictello early on full of “I am amazing,” “I am smart,” etc. and programmed them into his AAC.
One of my proudest parenting moments ever was that couple of weeks where A- started saying “I am A-. I love me” on his AAC and then with his mouth. He’d walk around saying “I am A. I love me” over and over all day long. F* wanting your kid to say they love mom or dad. This was a moment where we knew we were doing it right. More parent influencers need to share the moment their kid said “I love me.” I still get emotional thinking of it.
And we surround A- with people who loooooove him. Sure there are asshole strangers, but hopefully he sees that the people that matter are all people who will say “We can’t stay in the lobby” 100 times while loving dragging a flower sheet back and forth.
What I want more than anything is a word or a term that will make other people love A- as much as we do, and as much as he does himself. He actually really doesn’t need a word for people to see him as difficult, challenging, a problem, something that requires empathy for our family, or a “gift god gave us to test us”, or even a cute little thing they feel charitable towards. Even with no agreed upon word, he already has that in abundance.
I fear that a label specific to him, for the purpose of ensuring the world to understand how big his challenges are, will make him reconsider his entire perception of himself. A perception that is accurately grounded in self love and awesomeness.
The two videos at the bottom of the original post are A- listening to the Magnificent album by Lachi—by disabled adults, for disabled kids. He’s listening to I Like Me, which I just turned into a bus video, Magnificent, and Up Next which is about disability heroes.
