Why Prenatal Testing for Autism Scares Me
Warning: This starts out with ideas that are hard to think about, and gets harder. Brutally honest, even for me, but the only way I can say things that need to be said.
Two stories in today's news have me worried about the issue of prenatal testing and autism.
1. A blood test which is claimed to identify Downs syndrome 95% of the time has been approved for sale in Switzerland, despite the objections raised at the European Court of Human Rights by the international federation of Down's syndrome organizations:
The federation, grouping 30 associations in 16 countries, said in June that the Strasbourg court should 'recognise the human condition and protect the right to life of people with Down's syndrome and those handicapped'.
2. Mark Leach claims that our popular media are leading us down a path toward "A Eugenics Common Sense":
In his recent column for Slate—headlined “Fetal Flaw”—Will Saletan praised the advances in prenatal testing for informing mothers if they are pregnant with a “defective fetus.” Saletan used the new tests as a wedge in abortion politics. Citing various polls, he argued that it will be difficult for pro-lifers to persuade a majority to be opposed to this new testing, even though Saletan rightly expects that the numbers of abortions will increase. Because it would be difficult to enforce any prohibition against aborting for specific reasons—such as the recent attempt by the House of Representatives to make sex-selective abortion illegal—Saletan almost gloats that the new tests will allow for even more eugenic abortions, i.e., abortions due to the fetus’s genetic make-up.
A month before Saletan’s article, Newsweek reported on the “epidemic of special needs kids.” As the charged word “epidemic” suggested, the article discussed the growing burden of caring for more children with autism and Down syndrome because of the costs of medical care. Almost lamentably, the article notes that these burdens have been somewhat compounded because, due to societal advances in medical care and inclusion in mainstream society, individuals with intellectual and developmental disabilities are now enjoying longer—and therefore costlier—lives.
Burden. Defective. Epidemic. These were terms commonly used in the eugenics era at the turn of the last century to justify compulsory sterilizations and involuntary euthanasia. But raise concerns at the turn of this century over prenatal genetic testing, and, as Mr. Saletan shows, the critics will be dismissed for simply being Luddites, against the advances of technology in the information age. What Mr. Saletan and other proponents of prenatal genetic testing ignore is that while technology may be value-neutral, how it is administered is not.
I have known that I needed to write about this issue for some time, but I did not realize exactly why it is so painful for me to do so until the last couple of days.
Part of the reason, of course, that this is so painful for me, is the likelihood that I would have been aborted myself had a similar test that identified autism been available to my parents. And probably the most painful thing about that is that I have mixed feelings about it. My life, which has been pretty functional by autistic standards, has so been so painful for me and so expensive for others that I'm not sure ending it before birth would have been a bad idea.
Some people will be angry at me, maybe even accuse me of encouraging genocide by saying that. But all I have to offer you that can ultimately be of any value is my truth, and this is part of it.
And it's not even the hardest part.
The hardest part, and I really did not realize it until this week is this:
Almost all of the people I have loved most in my life would be in danger of being aborted if there was a prenatal test that identified autism.
And some people will be angry at me for admitting that most of the people I love most have significant autistic tendencies. Certainly some of my best and closest friends are and have been neurotypical. But the people I've been involved with romantically, the people I've been in love with-- those have been people who I think might have been diagnosed with some ASD had they gone through school today.
Some guys are into long legs or big chests. I'm into brains that makes connections in unusual ways.
And then there is my family. Would either of my parents have been born?
Depending on how it is defined, autism is a spectrum that includes many people who are completely functional, not disabled in any way. Can anyone imagine a test so sensitive that it could tell the difference between me (sort of a mess) and my boyfriend Max (sort of a genius) in utero?
A world without me? Maybe. I can see the arguments pro and con.
A world with Max? Unimaginably depleted.
A world that might label my mom unwelcome before she was born? Just unimaginable.
So-- when I am thinking about these prenatal tests, I am not just imagining a world without people like me. I am also imagining a world without the people who make the world worthwhile for me.
So that is incredibly difficult to be rational or polite about.
It hits at the root at not only who I am but the kind of world I want to live in.
And here's the thing that is worst of all: