Sunday, September 7, 2008

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. √úbermensch, 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.


  1. That was remarkably good-- especially the point about the "neurobiological continuum." You're really a talented, confident writer. You seem to have tightened up your craft over the years.

    That said, I'm all for genetic testing for autism/down syndrome, etc. We have limited time here on this planet, so, as a future parent (someday), why would I make life more difficult for myself if I could choose not to? Granted, someone with AS could be angel compared to a "normal" bastard of a kid. Regardless, I just wouldn't want my child to have AS.

    Maybe genetic testing presents additional problems, though. I'm sure you've thought about this much more than I have. Like, would reducing the number of people with AS (as a result of genetic testing leading to abortion) lower the quality of life for those currently afflicted or later born with the syndrome? I'm guessing there wouldn't be as diverse an AS community or support group, researchers wouldn't pay as much attention to it, etc.

    Thorny moral issues, but they don't really change how I feel.

    -Shawn J.

  2. "Granted, someone with AS could be angel compared to a "normal" bastard of a kid. Regardless, I just wouldn't want my child to have AS."

    Amazing, the power of irrational societal pressure!

  3. What a horrifying thought that my two children with AS should not exist. I have to fight hard enough to get appopriate education for them without having also to justify whether they have enough value in this world to be allowed to breathe.

    And I am one of the lucky ones. My children will most likely go to college, own property, have families of their own. And while it true that the world would be unlikely tobe able to sustain supporting individuals who weren't eventually self sufficient if their number grew to significant proportions of the population, I believe that is merely a wake up call for us to discover causes and clean up our toxic environments rather than a rush to euthanization of "imperfect" fetuses.

    Using that kind of logic, should we consider an age at which all the elderly be euthanized because they are no longer able to care for themselves and may become a burden on their children eventually?

    As with Down Syndrome, you can't even know a child's potential until after they are born and well into adulthood, whether they are on the spectrum or neurotypical or have some other kind of disability. Disability also occurs well after birth. I think of smart people that I went to school with who descended into drug addiction never to return as "productive" member of society - yet. Should we ask them to step into giant trash cans?

    I am prochoice also, but I can't see that the solution to slowing down the rapidly growing numbers of people of disabilities is encouragement of mass abortions. Research shows that high percentages of women who have abortions are heavily traumatized by the experience for life, and wish they hadn't done it.

    We have currently a large population of children on the spectrum in the U.S. who will soon be transitioning into adulthood, and we have failed at developing corresponding transitional adult programs and services that will help them lead productive, meaningful lives. That is OUR failure, not theirs. We also need to be a lot better at providing "appropriate" education so that those who could be self sufficient can be. There is a lot more to helping someone reach independence than just filling their heads with academics.

    I guess part of this discussion is why people have children, and what are parents reasonably entitled to. If we advocate reproductive freedom, are we hypocritical to argue against abortions based on genetic testing? Would I have a breaking point personally? Like I know I wouldn't abort a fetus based on DS, but might I consider it for a child who is bound to have a short painful life based on some hideous disease? And since I already know that genetic testing is still horribly flawed, could I bear the knowledge that I might risk making a terribly painful choice in error?

    I am already walking a tight rope here, because I decided some time ago NOT to have anymore birth children based on the chance that they might also have some form of autism. I am stretched pretty thin as far as parenting resources as it is, between making the decision to stay at home rather than work since my children need me so much. I also need to take into account my OWN disability level since the stress of pregnancy on my body and the stress of raising these kids with special needs have taken a heavy toll on my own health. So who am I to tell someone not to abort a fetus based on whether or not genetic testing shows disability?

    I guess it's just so hard to hear other people talk about how little value or potential children like my kids have. I dragged my son to his first IEP meeting ever, because staff at his school had already made so many offensive comments to me WITHOUT EVER MEETING HIM in regards to his future. I wanted them to be absolutely unable to deny him his humanity, and I guess I will continue the fight to prevent the rest of society from doing so as well.