Eugenics, Fear, and Pain

The new neurologist has requested that my son have some genetic testing done, specifically for the PTEN and MECP2 genes, both of which have been connected to autism (and the latter to Rett Syndrome). Which means, there's been some evidence linking these genes to individuals on the spectrum, but nothing definitive.

And this is one reason why, according to some, genetic testing is a so-to-speak "waste of time" due to the amount of resources that are expended on such studies. Further, as the results do not translate readily into treatments and, even more, solutions, some have suggested that we really ought to focus on research that leads to, well, treatments and solutions. Another concern about genetic research is the possibility that a test to detect autism---prenatally---will be developed. About 85% of parents who find out that they are expecting a child with Down Syndrome currently decide not to have the child: What would happen if parents found out that their child was going to be on the autism spectrum?

Genetic research on autism was one of my main focuses when I started writing Autism Vox (three years ago---time is flying). And one question I quickly encountered was the possibility of a prenatal genetic test for autism. A recent Newsweek article entitled Erasing Autism: Scientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried? looks specifically at recent genetic research on autism via a portrait of Ari Ne'eman, the President of the Autistic Self-Advocacy Network (ASAN). Reporter Claudia Kalb hones in on the question of genetic research:

When I press Ne'eman on genetic research—doesn't it have some merit?—he says he doesn't oppose it outright, but he believes scientists must consider the ethical implications of their work far more carefully. Already couples are testing embryos for diseases like Huntington's, then choosing to implant only the healthy ones. And who can blame them? But autism isn't a fatal condition. Should people without the disorder be allowed to judge the quality of life of someone who has it? "That is a message that the world doesn't want us here," says Ne'eman, "and it devalues our lives."

The prospect of no more Ari Ne'emans—whether you agree with him or not—is haunting. Termination of fetuses with Down syndrome is routine today; given the fear that autism inspires in parents, why wouldn't it follow? And what would our world be like without autism? The vast differences among individuals on the spectrum make the notion even thornier: will parents start demanding to know whether their fetus will be low- or high-functioning? But it's also impossible to ignore the parents who say they'd do anything to free their children from isolation and pain. Some feel so hopeless so much of the time, they do wonder in private if their children would have been better off not born. And who can blame them?

Fear and pain: Kalb singles in on these as why parents might choose not to have a child who they knew in advance might have some kind of disability.

There's currently no prenatal genetic test for autism; as research into the genetics of autism continues, there's been plenty of speculation about such a test. As Ne'eman notes, the notion of a prenatal test for autism is haunted by the specter of eugenics. Should such a test exist, what would parents choose?

Writing as someone who is a parent, and whose son is on the moderate to severe part of the autism spectrum, I can say I understand why parents might fear to have a child with disabilities like my son, and why a parent can get to the point of wishing they'd do anything to help their child and, as Kalb writes, "free their children from isolation and pain." But never once have Jim and I wished that our child "had been better off not born," and I'm not writing that as a starry-eyed sentimentalist. Charlie has been through a lot and Jim and I, too, in our daily efforts to help him and to keep him with us. It's a very personal matter, but I can say that our lives have only been better because of Charlie.

Jim and I met Ari Ne'eman a couple of years ago, when Jim was putting together this conference. I've been glad to have been able to speak to Ari and to watch his advocacy work grow and evolve, and I've been fortunate to meet his mother, Rina Ne'eman, who is interviewed in the Newsweek article. In regard to accusations by critics (hello, we know you're thinking of saying it) that her son is "not really....autistic," Rina Ne'eman states that "'people who see Ari today have no idea where he's been.'" As a mother, I can only say the same thing for my son, who's got many a challenge on his plate---many different ones from those Ari has, but challenges are challenges.

Charlie, too, has come a long, long way. And I think we need to make sure that kids who might start out with "issues" and, yes, "problems" have every chance they can to show us just how much they can do, and how far they can come.