I know that prenatal testing is somewhat of a controversial topic, and while it is not the heart of my piece, it does play a strong role in it. The genesis of the piece actually came after a post I'd read on a message board months ago that referred to individuals with Down's Syndrome as "glorified pets." The same person who wrote that also pondered why anyone would want to bring into this world "someone who will never be self-sufficient." Those words pierced me like a blade, as I am not yet what one might define as "self-sufficient," and I wondered then how many people, both in the past and now, have or would call my existence into question because of that. So this piece was born of that fear, that pain, and my desire to redefine what "self-sufficient" really means.
Also, if anyone is wondering, yes, I did write a blog about this, and that blog is what became this article. I've edited it and tweaked it a bit since the original writing, so the finished product is different from the initial blog that I wrote.
So, without further ado, I present you now with my article, "I Can Cook, I Can Write: Asperger's Syndrome, Prenatal Testing, and the Journey to Existence," currently featured in the Spring 2009 issue of Autism Spectrum Quarterly:
EDITED TO ADD: Here is the original text, for those having difficulty reading the article (I apologize if anyone has had trouble with the jpegs).
"I Can Cook, I Can Write: Asperger's Syndrome, Prenatal Testing, and the Journey to Existence"
by Amy Gravino
Let me tell you a little story.
Many years ago, I attended a meeting. It was one of several, actually, but each one was the same. I sat in a conference room at my old elementary school, my parents on either side of me, and the director of special education at the head of the table. The other faces at the table shifted over time, but those I remember most were the school psychologist and guidance counselor in elementary school, and the speech-language pathologist in middle and high school.
At this particular meeting, I was 11 years old and right in the middle of fifth grade. I knew very little about what the adults around me were discussing, or why I was there. Words like IEP didn't mean anything back then. Only the grass and the long, asphalt path outside the window caught my attention, flanked by the red, yellow, green, and purple-painted walls of the school building. The sun was so hot that I could “feel” the heat radiating off the pavement. The light was so bright that it hurt my eyes, in stark contrast to the darkness in which I sat. My ears strained to listen to the sound of children's voices off in the distance—the sparkling, youthful laughter I longed so much to be a part of, but could not.
What I did not know then was that phrases of abject hopelessness were being whispered into my parents' ears, phrases like—sheltered workplace, special school, will never go to college. I sat there, oblivious to all of this, not having any idea of how little faith the people who were supposed to be looking after me had in my abilities. No one in that meeting—or any meeting before or after—spoke a word to me, or asked me how I felt. Perhaps I would not have been so articulate in my response, but what mattered most was that they acted as if I was not capable of responding at all. How could they know what I could or could not do—or how I felt or what I thought—if they never asked?
I am 25 years old. I’ve graduated from high school, along with the rest of my peers. I went on to college for four years and obtained a Bachelor’s degree in English. I'm now in graduate school working toward a Master of Arts degree in Applied Behavior Analysis. I cook. I shop. I do my own laundry. I drive. I write. I speak publicly at conferences, workshops, and meetings. I tell jokes. I can still fit into my original purple Cabbage Patch slippers from the '80s. I tutor undergrads in the writing lab at school. I'm writing a book about my experiences in the world of relationships and dating. I can program pretty much any electronic device without looking at the instructions. I moved 3,000 miles away from home and lived on the other side of the country for two years. I memorize phone numbers and lyrics to entire Broadway musicals. I travel.
BUT, I do not pay my own bills, and I do not have a "regular job." My parents pay the rent for the apartment in which I’m living in New Jersey. Despite all of the things I've mentioned that I CAN do, I am not (yet) self-sufficient. I can’t help but wonder—is self-sufficiency the standard by which I (or we) are judged?
"Collateral Damage" in the Quest for Prenatal Testing
There are those who advocate for prenatal testing who would look at a person like me, and instead of seeing my accomplishments and all that I’ve achieved, focus only on what I’ve failed to do. They would argue that I should not exist, that I am a drain, both on the economy and on my parents. A waste—at least that’s how it seems.
I have struggled for a very, very long time. Although I have not had to do so explicitly, I have, in many ways, had to fight for my right to have dreams; to contribute to the world; and, yes, to exist. There is no way to describe how I feel when I consider that there are people in the world who would be happy to do away with my existence; that they, or anyone, could feel that because I am not self-sufficient, I should not exist. Those people in that meeting years ago—those so-called experts—believed that I would never be self-sufficient. I admit that I am not there yet, and I have to deal with the constant fear of perhaps not getting there, and the self-doubt that plagues my thoughts from time to time, especially late at night when I’m lying in bed, unable to sleep. But I still have hope that I will get there.
For those who think my thoughts resemble a science fiction film depicting a far-off and dystopian future, consider this: ninety percent of fetuses detected to have Down syndrome in prenatal testing end up being aborted. Individuals currently living with Down syndrome deal with many difficulties, to be sure; but I envy these individuals for one reason and one reason only: the obviousness of their condition. Down syndrome is characterized by an appearance that is visible to the human eye, and because of that, the difficulties of those with the condition are recognized and understood. And while I don't envy the stares that some of these individuals may attract, or the rude comments that they and their families may have to contend with, I applaud their ability to be who they are, no matter what, especially in a world that calls into question their right to exist simply by creating medical tests that all too often result in their eradication.
Unlike people with Down syndrome who cannot hide who they are, I wear a mask of "normalcy." But it doesn't change who I am. It doesn't change the fact that sometimes I feel sickened by myself, and the fact that my parents are supposed to be enjoying their retirement years, instead of continuing to support me. I know that they are happy to do it. But, even so, the guilt persists, and it is exacerbated by the fervent race for medical tests that can detect autism in utero.
I have often wondered if my parents would have aborted me if they had known that I would be born with Asperger syndrome; if they had known that 25 years down the line, I still wouldn't have a "real" job. These and so many other questions are even more difficult to ignore with the rapid development of a prenatal test to determine if a child has autism.
These are complex issues, faced not only by individuals with autism and Asperger's and their families, but also by individuals with Down syndrome and their families. In my opinion, it is a foolhardy endeavor to boil these issues down to a few chromosomes and medical tests, especially when it places many of us with autism and Asperger’s syndrome in the position of having to fight for our right to exist.
Editor’s Note: Amy’s interview by Liane Holliday Willey appeared in ASQ’s CEO column in the winter 2008 issue of ASQ.