My young son has autism, but I might not tell you about it. Not because I’m ashamed or it’s a dark secret, but because I think he has a right to decide if and when people know about the inner workings of HIS brain.
He was diagnosed as a toddler, and many people told us to wait to get him tested. “Some kids are just late bloomers” and “don’t worry, he’ll catch up” – these were phrases I heard a lot. But we knew. We just knew, and my husband (thank God) insisted we get him evaluated as soon as possible.
My sweet boy went from saying 8-10 words to barely saying three. It was like those other words fell out of his head. He was flapping his arm when he was excited, poking himself in the eye, rubbing his face along the carpet, and obsessively lining up toys. We got his hearing tested because he wouldn’t respond to his name. All of these things individually could be “normal” – let’s face it, toddlers do some weird stuff. But together, these actions were red flags.
We are among the lucky ones. We got him tested quickly, and our insurance covers his behavior therapy (not the case for many people). He’s been receiving this therapy for four years. He loves his therapists, and so do I. They helped me with potty training and behavior charts and have given me ideas I never would’ve thought to try. They are my village, and I will forever be thankful for these women who love my kid and have made his life better.
If you met my son, you would never know we once thought he’d be nonverbal. In fact, you very well might not even suspect he has autism, because he’s had the advantage of intensive therapy that not everyone can get. After spending some time with him, you might notice he has some “quirks,” but you might not realize his tendency to talk to himself is his latest version of stimming. If you observed him crying or screaming, you might just think he’s being a brat, when in reality he could be having a meltdown because transitions are hard for him.
He is about to begin kindergarten. In preschool, he had an aide with him much of the time. We phased out his aide last year, and he did well without that extra help. We will begin kindergarten at his new school without an aide. I’m nervous, but I also believe he can handle it, thanks to all the help he’s had along the way. In preschool, I did tell several other parents he had autism. Sometimes it was because I felt like I should explain if they witnessed a meltdown; other times because I’d heard them asking who the extra adult was in the class. But I’m trying something different for this new school, because like it or not, people make assumptions when they hear a child has autism. And I won’t let my kid be pre-judged because people think they know what a person with autism can or can’t do.
To be clear, I’ve never encountered a mean parent, but I wonder what they envision when they hear me say autism. Many have said, “wow, I had no idea. He doesn’t seem like he has autism at all.” I don’t know what to say to that. Is it supposed to be a compliment? Make me feel better? In fact, it makes me feel weirdly defensive of his diagnosis, like I have to prove it or something.
If there’s one thing I’ve learned, it’s that autism is not one size fits all. Not everyone is Rain Man or the kid from The Good Doctor (most, actually, are not savants).
So, his teachers and school administrators will know about his diagnosis. We will have IEP meetings, he will continue working with therapists, and he may receive some therapy at school. But his autism is HIS. Therefore, the choice to tell friends about the way his brain works should be entirely up to him. That’s not possible if his mom has told other parents during kindergarten. He loses the chance to make that decision in middle or high school if his classmates have always known him as “a kid with autism.”
Autism doesn’t define him. It’s part of who he is, but it’s just one part. He’s so many other things – creative, silly, smart, adventurous, interesting – and yes, autistic.
That’s why you won’t see me lighting it up blue or adorning my car with puzzle piece decals. For some people, that’s helpful, and while I don’t want to do it, I see how it could be comforting to publicly share information. Some might think I’m ashamed of his diagnosis or of HIM. I assure you it’s the exact opposite: I simply want my boy to control the narrative for his own life. I want him to know he doesn’t owe anyone an explanation for the ways he might approach things differently. That his brain is beautiful and amazing, and he’s capable of anything.