Why I'm not hiding my autism any longer
CBC Radio | Posted: March 23, 2018 9:17 PM | Last Updated: July 5, 2018
I was a very curious, overachieving, Type A child. So when I found myself in the middle of a bullying situation so terrible that I was forced to switch schools at 11, it only made sense to apply all of these traits toward making sure that something like that never happened to me again.
I couldn't figure out the exact thing about me that made me so loathsome to my peers, but I soon found ways to work around that. I studied what made other people likeable and rebuilt myself in their image. In my teens, I developed an obsession with celebrity gossip and etiquette message boards, figuring that it was a great way to find out what people really thought about personalities and behaviour when they were too polite to say such things to my face. I changed everything from my voice to my gait to my conversation style, desperately trying to shape myself into someone who could be accepted. Or, at the very least, mildly tolerated.
My results weren't perfect. I was never popular. My grade nine year was a disaster for a number of reasons — including a minor dose of bullying — and I wound up home schooled for the rest of high school as a result. But I made some headway and some friends. I definitely wasn't normal, but I wasn't such an obvious target anymore, either.
'On paper, I look like an autistic success story'
My efforts to fly under the radar were good enough that it took medical and psychological professionals a full 27 years to officially figure out that I was autistic. Almost a decade after I finally received my diagnosis, though, I'm beginning to wonder if the vast amounts of time and energy I dedicated to this project were truly worth it.
The goal of many of the most popular treatment programs for autistic children today is to make them virtually indistinguishable from their peers. Knowing how tired, frustrated, and anxious my makeshift version of this training has made me, I worry that our efforts to integrate people like me into society aren't running the risk of isolating us further instead.
On paper, I look like an autistic success story. I have meaningful (and slightly gainful) work, friends who genuinely care for me, and a good marriage. People tend to say things like: "Well, you don't look autistic," when I tell them that I am most definitely autistic. When parents of autistic children want to discount my writing on the topic of autism, they usually bring up some mixture of the above to argue that I'm "too high-functioning" to have a relevant opinion on the matter.
'Being a 'high-functioning' autistic doesn't mean I'm any less autistic'
In my personal experience, though, being a so-called high-functioning autistic doesn't mean that I'm any less autistic. It just means that I'm more capable of hiding the issues that seem to make non-autistics so uncomfortable with my neurology. And at no point have any of the things that I've learned to do to try to earn other people's tolerance become any easier to perform.
Passing as a "normal" makes my chronic anxiety significantly worse. It exhausts me. It rarely leaves me with enough energy to dedicate to my loved ones and my work. And I can't help but wonder what good this emphasis on blending into society is if it leaves me with so little for the things that truly matter to me — to the very things that parents claim they want for their own autistic children.
These parents often tell me that they wish their children could be like me. I've started telling them that I want more for all of us.
Listen to Sarah's full conversation with Now or Never by clicking the play button above.