When I was four years old, my parents and I moved out of the house we were living in, to another house one town over. It was just three blocks away, but this seemingly insignificant move had far-reaching implications: it put us in another school district, which was supposed to be a very good one. This isn’t so strange, though; plenty of parents have moved to different towns to ensure that their children can have a quality education.
But “quality” tends to take on another meaning entirely when you are someone on the autism spectrum.
As I type this, I am trying to write an article for AHA-NY’s “On the Spectrum” newsletter. I was asked to write about what positive interventions were done with me when I was in school, and how I learned over time to advocate for myself and become a self-advocate.
The problem here lies in the fact that there weren’t any positive interventions done with me. This was before early intervention, before token economies, inclusion classes, behavior analysis, all of it. I was diagnosed with Asperger’s Syndrome when I was 10 years old, in 1994—the same year that Asperger’s was added to the DSM-IV. There were no puzzle piece ribbons, magnets, t-shirts, bumper stickers. No celebrity endorsers, no Autism Awareness Month. Nothing.
The word “autism” or “Asperger’s Syndrome” was on no one’s lips, and I was only the second child to go through my school district who was identified as on the spectrum. Which meant that absolutely no one knew what to do with me, and all that was left was my own gumption, which somehow kept me from killing myself, even though it was all I wanted to do, every day, for eight long years.
I was asked to give this article a “positive slant,” which I am attempting to do, but I know I can’t sugar-coat the things I went through in elementary, middle, and high school. I can’t hide the fact that I truly believed that almost no one cared about my well-being, that everyone wanted to make me “someone else’s problem,” instead of getting to know me themselves. Most of all, I can’t hide that this school district gave my parents next to nothing to hope for, and, more or less, failed me.
In reality, it was the entire lack of positive interventions that made me want to be a self-advocate. Because somewhere along the line, I realized that nobody was going to stand up for me or speak for me, so I had to do it myself. Being a self-advocate came, at first, more out of obligation than actual desire. Now, it’s a necessity, and I am trying to impart these hard-learned lessons to parents, professionals, and others on the spectrum who have found themselves on the same road that I once traveled.
I became a self-advocate not because of what the faculty and administration did (or didn’t) do to help me when was in school, but in spite of it. Through opportunities that I never would have expected (such as appearing in the documentary Normal People Scare Me), incredible doors have opened, and my confidence in myself has grown as I’ve realized that my voice has the power to help others.
My hope is that individuals with Asperger’s Syndrome can learn to become self-advocates, can “pay it forward,” as it were, and act as a voice not only for themselves, but for those who don’t have one. The autism community is a chorus of voices, singing in unison; only by listening closely, however, can people begin to understand just how different each voice is.