Fast forward several years. I have a baby with Down syndrome. A baby I thought everyone would just think was beautiful, wonderful, etc, because that was the bubble I lived in. I thought everyone wanted a baby with Down syndrome. I remember being so jealous of the kids with Down syndrome in Casey’s Early Intervention classes. I knew somewhere in the back of my mind that *some* people aborted babies because they had Down syndrome, but I thought that was rare.
That bubble burst when I learned that OVER 90% of babies who are prenatally diagnosed with Down syndrome are aborted. I’ve said that statistic before, but I still just can’t get it through my head that the number is so high.
So it brings me back to the topic of this post. THAT is why I hope there’s never a genetic test for autism. Because, again, in my experience (I am not a spokesperson for Down syndrome or Autism) autism is much, much harder. But the rewards are every bit as great as they are with Down syndrome. Casey is amazing. Every day I get to see little glimpses into what his brain is working on and it is FAR superior to what mine does. We just don’t get it.
A few months ago Abby and I visited Dr. Rosenbaum, a geneticist extraordinaire at Children’s National Hospital in Washington D.C. While taking Abby’s medical background, he asked if there were other family members with genetic conditions. I mentioned Casey, but then said, “but that’s not really genetic.” Whoops. He very quickly corrected me. He said it’s totally genetic. I sort of breathed a sigh of relief (his autism wasn’t my fault), then at the same time felt the bile rising in my throat.
If it’s purely genetic, it won’t be long until there’s a test. And when there’s a test…what would happen to the next generation of people with autism? People like this:
This is Stephen Wiltshire. CBS took him on a 20 minute helecopter ride over Manhattan. Over the next three days, he drew this amazing picture.
The rest of his story can be found here.
Or how about Derek Paravicini? 60 Minutes has covered his story a couple of times. Here’s an excerpt:
The entire story can be found here: http://www.cbsnews.com/video/watch/?id=6734911n
Or how about this handsome young guy?
This is my Casey. You can’t tell by the way he looks that he has autism. You wouldn’t guess it when you saw him cuddling next to me on the couch. You wouldn’t think he had autism when you saw that he was the first person every night to tell me he loves me. He’s fabulous and he’s funny. He’s amazing to me in every sense of the word, and I truly believe we are only scratching the surface of the magnificence his future will hold.
If (and I believe it’s more of a “when” thing at this point) there’s a genetic test for autism, I’ll tell you what I see happening:
90% of them would be aborted. If not more. I believe that the number of abortions of children with Down syndrome will now increase because of the ease of testing (I wrote all about that here), and I’m sure the numbers would be the same, if not worse, with children with autism.
CRAP like this will happen:
Sue. They SUED! This is not the time or the place for this rant, which I REALLY want to go off on. Holly, over at Not A Perfect Mom’s Blog does a better job putting into words what we are ALL feeling on this one. Read it.
What I’m saying is there would be cases like this. Cases where the parents were the very rare few that are told definitively that their child does not have autism…and then does…and those parents will SUE because this isn’t the child they had wanted. Where doctors would be forced into offering the testing and the abortions based on their own fear of “wrongful birth” lawsuits.
It will be like it has been in California since the 1990’s. “They flatly admitted that California’s prenatal testing program’s purpose is to reduce the number of children born with Down syndrome through earlier abortions.” (Leach, source below). And by so doing, have saved the state money in what they term, “preventative care“. They see these tests as being overwhelmingly cost affective because they prevent the extra cost to society that people with special needs sometimes incur.
Listen, I’m not against prenatal testing. I’ve had the blood tests and/or in-depth ultrasounds looking for Down syndrome and markers for other things with each of my pregnancies. It’s good to know going in what you are dealing with. Had we known Abby had Down syndrome prior to her birth, we would have elected to have her at a bigger hospital. We would have read the books on the subject before her birth. But let’s be honest. That’s not really what they are used for most of the time. And the statistics show that.
I would not have signed up to have a child with autism in the beginning. I would have never aborted him or any child with a disability because that goes against what I believe. But, when I mapped out my life when I got married to Lance, autism and Down syndrome were not a part of that picture.
Which makes me glad that I’m not the one responsible for mapping out my life. I’ve learned just to leave it up to my Maker. The One who created these children. These children, and really all people with special needs, are here to teach us. Here for us to learn how to be a better, more compassionate and patient society. What will happen when we lose that in an attempt to create a race free from those lives that some believe are better thrown away? Who will we be then? I shudder at the thought.
More on the subject:
Eugenics, American Style by Tucker Carlson
Repeating an Atrocity with ‘Preventative Care’ by Mark W. Leach
Better Genetic Test for Autism?, Science Daily
and my Angry Down Syndrome Awareness Post (the same reasons people choose to abort a child with Down syndrome will definitely carry over to children with Autism)