At our son’s school evaluation in October, they told us he has Asperger’s syndrome. It wasn’t shocking news (we’ve had the question in our minds for over a year), but it did shock us. I don’t know who is ever ready to hear it. But the big question, now that we know, is which people do we tell about it? And by “people,” I mean close friends, acquaintance friends, his Sunday school teachers, babysitters, coworkers, or even strangers we meet at the park. We’ve told family, but so far, that’s nearly it.
Buki is three years old. In many ways he is indistinguishable from his peers. Kids this age display a variety of behaviors, and toddlers develop at different rates, so Buki fits right in most of the time. He is very verbal, he’s friendly, and he doesn’t have a lot of freakouts in public. (He saves those for when we’re home.)
So if we don’t tell people, they really aren’t going to notice. Some autism families don’t really have a choice in this regard. If their child is nonverbal or has other visible symptoms, then people already know that something is different. They still don’t have to explain the situation if they don’t want to, but they can’t avoid people noticing
On one hand, I feel as though it’s his life, so he should be the one who decides (when he’s older, of course) who gets to know about this thing that puts a permanent label on him. It doesn’t seem fair that others around him know he has a label before he even does.
And so many people don’t really know what autism or Asperger’s syndrome is. Or maybe they’ve heard some false information about it or hear the word “autism” and have Rainman or some other outdated stereotype in their mind. It seems unfair to my son to color other people’s view of him simply by using the word autism.
But on the other hand. As a parent, a significant portion of my time is spent thinking about and dealing with his issues. And so it seems strange to omit an entire portion of our lives from my conversations with friends. I want to share his successes! I want to vent about the whole afternoon spent on the phone with the insurance company. But I don’t. People don’t know about this part of our lives, so I don’t talk about it.
And at the same time, I want to be an advocate for children and adults with autism, and you can’t do that if you keep your mouth shut. People with autism shouldn’t have to worry what someone will think of them when autism is mentioned. So if people like me treat autism as though it is something to be hidden and ashamed of, then the world won’t change for the better.
It’s just difficult to know how to handle it. If anyone out there has any insight or has dealt with this question, I’d love to hear from you.
photo by Patrick Hoesly