Friday, April 29, 2011

My Fights With Autism and The Need for More Awareness


Kristen is eighteen years old and currently in her third year of high school.

A statement I have always found confounding is, “I wouldn’t wish it on anyone.”

Let me explain: I find this confusing because what if "it" could be beneficial or insightful for the whole of society? What if perspectives widen because of "it"?

Who am I? I am an unknown Aspergian. I was diagnosed at the age of three, but with no follow up afterward. My childhood consisted largely of unwanted (probably neurologist) doctor visits where doctors would run test after test, and force me to look them in the eyes. I grew up with a degrading “you’re not normal” mentality. Needless to say, my childhood, like me, wasn’t "normal." The doctors finally concluded that I had ADD and gave me Ritalin, which was useless.

If that wasn’t cruel enough, in second grade I finally realized how “different” I was from the rest of my peers. I was friendless and lonely in my elementary school, save the occasional nice kid. The realization came in spring, when my school was in full standardized testing mode. I was probably in some independent learning program full of kids who were nearly "normal," but not quite. But I’d made a friend, woohoo! The problem was that my friend, along with the rest of that friends' class, would be testing in one classroom while we the “resource room kids” would test in another.

I was devastated. I was already sad when I had to leave my class during math to go to the resource classroom. The separate testing took those feelings to a whole new level. I had been looking forward to testing with the entire class! I wanted to prove to my parent that I too fit in! So, when testing came, I was so distraught that I gave absolute minimum effort. I didn't care how “fun” the teachers made the test sound. All I cared about was that I was once again kicked to the curb.

Luckily, in my little genius mind, a plan began to brew. It finally developed and burst with magnificent ingenuity. Until then I had stimmed and murmured to myself with reckless abandon. But what if I acted like everyone else? It was a brilliant plan then, all brand new. With this idea in hand, I began to observe and parrot. With difficulty, I pushed myself to stop stimming and kept my murmuring to an absolute minimum. I stared into the eyes of my peers. Most importantly, I acted sociable and "nice."

My plan had grand success in third grade because I gained three close amigas! One moved away, and the other and I grew apart, but then I made five friends in fourth grade. Fast forward to the eighth grade -- one of the dreaded middle school years -- and I had a full lunch table of four good friends and four extremely close ones. I was excelling in my subjects and had plans for high school. Life couldn’t get any better.

Except I was forced to leave those friends behind to be dragged into an alien state where I didn’t know anybody! Fast forward, once more, to tenth grade, also known as sophomore year. I’d switched from the public high school, as this state happens to have, in all honesty, crappy public schools. My new school was private and small, like my old elementary school -- but without the warmth. As in second grade, my closest friend became the air. Oh, and the next year wasn’t better -- I developed the precious skill of dodging paper balls.

So, as Autism Awareness Month wanes -- I see no change. I was not even aware of AAM until I read the blogs of my favorite Aspies and autistics. Most awareness months kick off to something spectacular, but as I see it Autism Awareness Month only whispers its arrival from the shadows. At my school, nobody -- not an exaggeration -- knows or show interest in AAM, including some of the faculty. With all the media coverage we see about autism, it really needs to make itself heard on April.

Thus, a harsh idea would be: let autism affect everyone. In my perfect world, every family would be impacted by autism in some way, shape, or form. I’m not saying that every family would have an autistic child. I’m saying that neighbors, parents, siblings, friends, bosses, or employees could give their neurotypical pals insight. In my perfect world, autistic adults and teens -- not doctors or the latest “cure” fad -- would get airtime on the news. In my perfect world, autistics like me would be given the respect and dignity that we deserve.

Every autistic would be given the greatest therapeutic and medical support from day one. We would not become lab rats for the latest diet or cleanse. Our medicinal needs would be aimed solely at improving our lives. New facilities that support us would be created in every town and city. Most importantly, insurance would finally listen to our parents and/or us and stop denying us therapies that would vastly improve our quality of life.

Thirdly, we would not need to hide our disorder. I would be able to announce to my entire school the important lessons of autistic life. Families would not burn with shame, regret, or humiliation over their autistic children. We would hold nationally acclaimed events in the name of our disorder. A real autism expert, not a self-righteous doctor, would find a permanent place on our news. Our entertainment programs will feature more and more autistic individuals. With enough determination, we may even get our own television channel! Imagine the sight of seeing an Autism Network Channel (or something similarly named) on our TV! We would declare to every critic that if we were cured, if every piece of neurodiversity were snuffed, then society would come to resemble a nation of similar-minded clones found in science fiction novels.

Finally, my greatest desire, these outspoken autistic adults and teens would travel the country and talk to schools. They would travel to every crevice and corner of the USA and educate teens on life with autism, and dispel harmful myths. This is the best and most educational form of awareness I know of.

But we have yet to gain our rightful power of speech. Instant experts; careless, attention-greedy parents; and the token celebrity have stolen our stories and perspectives. Many of our youths are being trained to stay silent and let others guide them through life. We need to gather, and catch society’s fickle interest and make people want to listen to us.

We must also grow more motivated. We need not just to demand, but also to create more and more changes. My perfect world may be a fantasy, but if everyone, neurotypical and autistic, brought their ideas to the table and took steps to make them reality, then we would end up with a society that is perfectly win-win.

With the help of the media and our own hard work, we can create not only a more powerful Autism Awareness Month, but also a true neodiverse celebration.