The Journey to Existence

Now more than ever, the debate is raging over the advent of prenatal testing for autism. Already, prenatal testing exists for Down's syndrome, and approximately 90% of Down's syndrome fetuses are aborted. One of the biggest concerns among those in the autistic/Asperger's-rights movement is that if/when prenatal testing for autism comes to fruition, that autistic fetuses will be aborted at the same rate as Down's syndrome fetuses.

I'm a member of a messageboard for fans of the director Kevin Smith. Last night, a member of that board made a thread in the off-topic forum titled, "Would you abort a pregnancy due to fetal Down's syndrome?" Rather than engaging in a sound, rational discussion, the person who started this thread resorted to tactless and emotionally charged statements such as, "I see no good reason to sire an individual who will never be self-sufficient" and then later in the thread referred to individuals with Down's syndrome as "glorified pets."

Suffice it to say, this thread struck a chord in me. I felt a real need to stand up and say something, and so I did. I think that what I wrote is quite germane to the topic of prenatal testing, and so I have edited my response and submitted it to the magazine/journal Autism Spectrum Quarterly for publication. For those wanting backstory, here is a link to the thread. Here now is what I originally posted in the thread:

"Let me tell you a little story.

Many years ago, I attended a meeting. It was one of several, actually, but each 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 Ed at the head of the table. The other faces at the table shifted over time; Dr. Stolzberg, the elementary school psychologist; Mrs. Sigda, the guidance counselor; Mrs. Levin, the speech-language pathologist in middle and high school.

But I was 11 years old at this particular meeting, right smack dab 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 of the pavement. The light was so bright that it hurt my eyes, in stark contrast to the darkness in which I sat. And 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 were the phrases of abject hopelessness 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, never having any idea of how little faith the people who were supposed to be looking after me had in my own abilities. And 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 it was they who believed I was not capable of responding at all. How could they know what I could or could not do if they never asked?

I'm 25 years old now. I graduated high school with the rest of my peers. I went on to college for four years and obtained a Bachelors degree in English. I'm now in graduate school going for 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, 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. I do not have a "regular job." My parents pay my rent for the room in which I'm living in a house in New Jersey. Despite all of the things I've mentioned in my previous paragraph, I am not (yet) self-sufficient. And by your reckoning, Mr. Übermensch, because of this, I should not exist. I am a drain, both on the economy and on my parents. A waste.

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, to exist. There is no way to describe how I felt reading what you wrote. That you, 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 never getting there, the self-doubt that plagues my thoughts from time to time, especially late at night when I'm lying in bed, unable to sleep.

I know this reply is rather bloggish, and for that I do apologize, but this thread struck something of a personal chord in me. Individuals with Down syndrome deal with many difficulties. But I envy these individuals for one reason, and one reason only: the obviousness of their condition. The fact is that Down's syndrome is visible to the human eye, and when people see them, they know. And while I don't envy the stares and the gawking these individuals must contend with, the rude comments and questions which they and their families are no doubt bombarded with, I applaud them for being who they are, no matter what, especially in a world that feels they should not exist. They truly cannot hide who they are. I wear a mask, 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 they are happy to do it. But the guilt persists. And the last thing I ever expected or wanted was to find a thread on here that not only exacerbated that guilt, but even broadened it.

I have wondered often if my parents would have aborted me if they'd known that I had Asperger's syndrome. If they'd known that 25 years down the line, I still wouldn't have yet had a "real" job. And so I really have to marvel at anyone who can take all of these complex issues, issues faced both by individuals with Asperger's and their families, and individuals with Down's syndrome and their families, and boil it all down to a few chromosomes. I just hope that you'll never have to be in a position to fight for your right to exist as I and many others have had to do. I don't think you'll like it very much."

~*~

Ignorance is an ugly and difficult spectre with which to contend. All I really wanted was to make people think, even for just a moment. It's very difficult to shake someone out of their ignorance, and a fight over such things has nowhere to go but back and forth. What I want is to elevate people, to lift them up from where they are now and to show them something different. A view of the world that they've never seen before. That's why I'm in the field I'm in now, why I speak at conferences, why I'm writing my book. To educate people, to help them learn how to help people like me, people with Down's syndrome, people with all sorts of neurobiological disorders. That's one of the biggest reasons why the prenatal thing drives me bonkers--because as important as the lives of future people are, the lives of people who are already here matter, too. There are so many people speaking for the unborn, but hardly anyone is speaking for those who already exist but are not truly "alive," because the world has not given them the tools to be alive. So that's what I'm trying to do.

Edited to Add, for Clarification: I am vehemently pro-choice. I am not telling anyone not to abort a Down's syndrome fetus, and while I don't think I myself would have an abortion, I'll be damned if I'm going to tell another woman what to do with her body. I wrote what I wrote in response to the person in that thread calling individuals with Down's syndrome "glorified pets" and saying "I see no reason to sire an individual who will never be self-sufficient." My point is that he meant that Down's syndrome individuals aren't self-sufficient, but there are others of us on the neurobiological continuum who aren't, either; yet, people like me would never be seen as "glorified pets" (or at least I would certainly hope not). But his idea of self-sufficiency is one that reaches across the spectrum of disorders, not just Down's. So my point was that how long would it be before prenatal testing comes to exist for Asperger's and autism? Already, 90% of Down's syndrome fetuses are aborted. My fear is that rate applying to fetuses with autism and Asperger's if/when prenatal testing for those disorders comes to fruition. That's all that I meant. I certainly do not mean that I face the exact same issues as individuals with Down's syndrome. But I have had just as many struggles, and my point is that people with Down's are more recognized--people see them and know they have a problem. People don't see that with me, don't see that I might not be as high-functioning as I appear, and that's what makes everything harder.