Some kids are diagnosed with autism as toddlers and grow up knowing that they have ASD. But for those of us whose kids were diagnosed when they were older, telling them is a big decision. Do we tell them as soon as they’re diagnosed? Do we tell them when they’re more mature? Will they understand? Will they feel stigmatized? Will they feel like outsiders?
My son was diagnosed with high functioning autism when he was seven. Our family was in such crisis mode at the time that telling him he had autism was the last thing on our minds. We were struggling to reach our little boy who’d suddenly started pacing and reciting dialogue from books and movies for hours at a time. So we didn’t tell him that first year. Or the second. But by then he was growing and changing in leaps and bounds. Not telling him started to hang over us.
Luckily, we’re part of a wonderful social skills group (www.factfamily.org/) that not only includes typical siblings in the group, it also has a parent group that meets while the kids do. That group has gotten us through IEP’s and Regional Center evaluations and much more with an abundance of laughter, humor and incredible advice. They helped get us through this milestone as well.
One brilliant mom told me that when she felt her son was old enough (around nine), she’d left books around the house for him to read and then discussed them with him. So I carefully chose autism books written for kids and left them on the coffee table, on the bedroom floor, in the bathroom (what is it about guys that they start reading in on the toilet pretty much from the time they take off their diapers?). My son who has autism ignored the books. My younger son who doesn’t have autism inhaled them. And regaled me with questions. I answered them all within earshot of my older son, who pretended I was on another planet.
Then one day I plopped down next to him and picked up “Different Like Me: Autism Heroes” (www.amazon.com/Different-Like-Me-Autism-Heroes/dp/1843108151). I said, “Let’s read this together.” Of course he resisted. So I did what any responsible parent would do – I bribed him. If he read at least three pages of the book with me, I’d let him watch an extra episode of Sponge Bob on TV that night. TV is a legal drug in my house, so guess what? We sat and read the book. We read about Einstein, Thomas Edison, Andy Warhol – and then my son was done. No revelations, no deep discussion, just, “I’m hungry, Mom. Let’s have lunch.” Damn.
A few days later, I found him reading one of the autism books on his own. I approached him cautiously. One false move and I knew he’d be out the door. Who wanted a heart to heart with Mom when there were books to be read, Legos to build and a little brother to fight with? As soon as he saw me, he put the book down.
“Watcha reading?” I asked him, trying hard to be casual.
“One of those autism books.”
“Oh. Any good?”
Big pause. His eyes searched for another book. I plunged in anyway.
“Do you know what autism is?”
“Yeah. I think so.”
“It’s like … Can you tell me again?”
“People who have autism can be really sensitive to sounds and tastes – ”
“Like they have super powers.”
“Yeah. That’s a good way to put it. And they sometimes having a hard time saying what’s in their heads even though what’s in their heads is really cool. And – ”
“Okay. I get it.”
He picked up a comic book. Damn. He was done. But I wasn’t. Not this time.
“Do you know anyone who has autism?”
He thought a moment.
“I think I have autism.”
“Yeah. You do. What do you think of that?”
Yep. My boy is pretty damned cool.
Awesome. Thank you for posting.
WOW. I am brushing away the tears. Loved the story and love you.
The feeling is mutual.