Luddites, Biomarkers, and Baby Lize
What does this have to do with autism? Well, when I criticize psychologists and genetic scientists for their biased views toward autism, I sometimes get comments pointing out that life wasn't the proverbial bed of roses for many autistic people a generation ago, before the concept of the autism spectrum was developed. (That's a point I don't dispute, by the way.) And some commenters also mention that autism research has the potential to result in positive changes.
I read this statement recently, which expresses a view that many parents hold, in a post on a mother's blog:
I like the idea of biomarker research because if I had known that my child was going to have autism... or any other disorder (I really hate that word, but can't think of a better one right now) I would have been able to get her the resources she needed a lot sooner!
That's a valid point. I really hate to take a Luddite stance on this issue, especially considering that I have a futurist philosophy in general and consider the development of new technology to be a very good thing under almost all circumstances. Technological change makes us a more informed, productive, rational, and prosperous society. It's quite true that autism biomarkers could help to identify children who would benefit from particular educational methods and therapies. Biomarkers also could result in the development of better drugs for the autistic population. I don't mean psychiatric drugs, but medications in general; it's a well-known fact that mass-market pharmaceuticals are less effective and have more side effects among genetic minority groups, for the simple reason that the drugs rarely are tested for their effectiveness in groups of people who may diverge significantly from the population's genetic average. (Until recently, doctors didn't even know how young women would react to most medications because drug trials never included women of childbearing age.)
Sometimes, though, in extreme circumstances, it does become necessary to consider whether a new technological development could have devastating effects on the world in the near future. When Hitler came to power in the 1930s, several German physicists who were involved in atomic energy research understood what would happen to the world if Hitler got the atomic bomb. As a consequence, they made the decision to abandon their research in Germany and to begin their work anew in the United States. If, instead, they had thought only of their research and had decided that it was more important than political considerations, the world's democratic nations might not now exist.
I believe that we are at such a crossroads today with respect to autism genetic research. At some point in the future, it will have beneficial uses, just as nuclear energy has beneficial uses. But if we rush headlong to discover autism biomarkers without considering the political climate in which this information will be used, we risk the very real possibility that eugenic abortion will destroy most of the autistic population before we ever reach the point of benefiting from the research.
Let me make myself clear on this point: I am not, in any way, advocating Luddite-style terrorist attacks on autism research laboratories, and I hope no one is seriously considering such a thing. Instead, what I would like to see is a much slower pace for the genetic studies. We need to shift the majority of our autism research funding into such areas as determining the effectiveness of various educational programs, studying how autistic children develop language, and investigating what kinds of support services are most helpful to autistic adults. That will give our ethics and our understanding of autism more time to catch up to the genetic technology.
Here's one more historical incident I find relevant: In 1983, the abandonment of an infant in Pretoria, South Africa, sparked a major controversy over racial prejudice because the country's strict apartheid laws required that every child be assigned to a racial category. It was unclear whether the child, who was given the name Lize, was white or of mixed race. The authorities conducted an analysis of Lize's hair and concluded that she was of mixed race.
The use of hair analysis technology to classify Lize did not benefit her in any way. It had no purpose other than to assign her to a category of socially inferior people. An autism spectrum diagnosis, on the other hand, is intended to (and often does) assist families in obtaining services. Still, we need to consider the extent to which our society's classification of children as autistic—whether by prenatal genetic diagnosis, postnatal genetic diagnosis, the current behavioral diagnostic criteria, or any other means—results in enforcing cultural prejudices and segregation, rather than actually improving society's understanding of their needs.
Lize was fortunate in that South Africa's apartheid regime came to an end while she was growing up. She did not have to go through her days branded as a lesser human. Will today's autistic children be that fortunate?