Yesterday evening, Jonny (my NT 8-year-old) noticed I got a package in the mail from Amazon.
Now an Amazon package to a kid, (and to many adults) is like a mini-Christmas and that UPS truck may as well be a sleigh pulled by flying reindeer.
It was the shirt I ordered for Jonah (my nonverbal autistic 3-year-old).
We are taking a trip on a plane soon and other parents who have travelled abroad with their autistic children said they seemed to fare better when other passengers were aware that your child is autistic.
So I got Jonah a t-shirt with the word “AUTISM” — written upside down — and a tagline reading “seeing the world differently.”
After opening the package with the shirt, Jonny asked me what it said. I told him. He didn’t understand.
I realized the time had come. I had been agonizing about how to tell Jonny his little brother has autism since we learned about it.
Here is a quote from the linked article I wrote several months back,
Autism is hard enough to explain to full-grown adults. How do you explain it to an 8-year-old?
So far, I have just left it alone, but I know that the topic will come up soon. Jonny is just too observant. I don’t have a real good answer for him that will keep Jonny from worrying about Jonah or try to get us to take him to the doctor to try to fix him.”
So I decided to just lay it all out there.
Here is a bit of the conversation:
“Jonny, have you heard the word ‘Autism?’ “
“Well, this shirt says Autism is ‘Seeing the world differently.’ I got this shirt for Jonah, because he has ‘Autism.’ He sees the world a little bit differently. A lot of people have Autism so you may know other people who are autistic. Autism makes it harder for Jonah to learn to talk, and sometimes he gets frustrated by that. Sometimes he hits us because he is frustrated by a the breakdown in communication.”
“And sometimes he has trouble calming down when he is frustrated. And that’s why sometimes he gets so upset.”
“Here let me show you some videos about autism.”
I proceeded to show him first a video with Julia, the new autistic character on Sesame Street.
Jonny quickly lost interest.
I went on to show him this video, which does a fantastic job of explaining autism.
Surprisingly, Jonny STILL was not very engaged. About 30 seconds into the clip, he had already moved on.
Not wanting to lose the moment to explain all the things I’ve been thinking and feeling and worrying about for the last 6 months, I asked him if he understood and if he had any questions.
This conversation ensued:
Me: “Do you have any questions?”
Me: “Do you understand about autism, buddy?”
Jonny: “Yeah. Dad I need to do a timeline project for school.”
Me (completely broadsided): “um. oh… okay. When is it due?”
Me: “and how much of it do you still need to do?” -(already knowing the answer)…
Jonny : “ALL of it.”
And that was it. Jonny learned about Autism. And that knowledge was completely dwarfed by a last-minute school project.
Do you know why? It wasn’t because he doesn’t care about autism, and it wasn’t because that school project was SO important.
It’s because Jonah is his brother. And he ALREADY knows his brother. Julia from Sesame Street isn’t Jonah. None of the characters in the video clip are Jonah. I’m sitting there trying to explain a profound truth about autism to my 8-year-old and he seems to have already learned it.
What has taken me the better part of a year to accept, was hardly a ‘blip’ on Jonny’s radar.
He doesn’t need the help of a “label” to understand his little brother. Jonny’s little brother isn’t “autism”… Jonny’s little brother is JONAH.
I have been agonizing about this conversation for months. I thought it would be a long, drawn-out exposition on all the nuances of autism and literally explaining the whole “spectrum,” because Jonny is so inquisitive and curious. I thought I would have to console Jonny, or tell him not to “worry” or explain to him that Jonah doesn’t “need fixing,” because he is who he is.
But it wasn’t that at all. Here’s why.
My projection of Jonny’s reaction is the same as the reaction that I had upon hearing Jonah’s diagnosis. I had to come to terms with autism. I feared autism. It took a whole journey for me to accept autism and to see past the label.
Not so for Jonny.
Jonny sees his brother. Jonny is not afraid of his brother. “Autism” may as well be a made-up word.
It is THAT SIMPLE.
Sometimes, the way we want to teach children to see the world, is the way they ALREADY see the world. Sometimes, it is US who need to be taught.