My oldest son, Zach, has an official diagnosis of Asperger’s. When he starts being his Zachy self, and we explain to family and friends, sometimes even the odd stranger, we often hear, “But you really can’t tell.” I’m not sure if that’s supposed to be comforting or not.
Sometimes when we’re out in public and both boys are acting up, I wish they had huge neon flashing signs above their heads to let people know what the deal is. Why my 9 year old, whom most would think would know better, is running his hand along the shelves. Why he keeps antagonizing his brother. Why just in general my kids are acting like they’re 5 and 2 even though they’re 9 and 4.
Appearances set an expectation. Because my 9 year old looks his age, people expect him to act accordingly. My 4 year old looks 6 because he’s very tall. People expect him to act older than his age. Sometimes the looks we get…I know they’re judging my parenting, but I honestly don’t care anymore. I’m just doing the best I can with the tools I have. When my husband is with me, and the boys are having a particularly stimmy time, the looks are even worse.
The comments don’t help either. I admit, being pretty sarcastic by nature, I’m not one to usually let these comments go without a smart remark.
“Wow, they’re all boy, aren’t they?”
“Yes, last I knew they both still had penises, thank you.”
“You sure have your hands full, don’t you?”
(Looking at my hands) “Nope, they’re empty”
“I don’t know how you do it.”
“I don’t know any different.”
“Did I sneeze?”
I get that some people are trying to understand, but read an article, a book, something on autism, because I think the one phrase that grates on me most is “My kids do that too.” Really? Your days are spent as one giant OCD routine that’s not your own? Meals have to be certain foods made a certain way? You encounter meltdowns if you say you’re going to the grocery store and then drive a different route? You have to shop in certain stores and make sure your child tries EVERYTHING on because some clothes just don’t feel right? You’ve had a child meltdown because the meat fell out of their sandwich because they couldn’t problem solve to just put it back in – at 4, 5, 6 years old? You’ve had a child decide he’s not eating melted foods, to include melted cheese? You and your husband have to stand in the same exact spots each night to hug your child or the routine is lost? You have a 4yo who is barely sleeping through the night – for the first time ever in his life? I really could go on and on, but I think you get the point.
Just because my kids don’t look different doesn’t mean they are the same as yours.