Prenatal Genetic Testing for Autism: Two Perspectives
August 1, 2006 by Kristina Chew, PhD
Filed under Health
I have posted before about how a prenatal genetic test for autism evokes a highly charged response in autism circles, to the point that the very term prenatal genetic test for autism can be considered a fighting words. Two fellow bloggers (and parents) provide some thoughtful commentary on this issue.
Hsien at Genetics and Health provided a scientist’s perspective on a recently published research study suggesting that different genes cause autism in boys and in girls. Writes Hsien today in Multiple Genes for Autism:
What I’ve repeatedly said here about genetics research on controversial diseases, disorders, or characteristics is that it is not about the elimination of “undesirable” people from the population. Genetic testing isn’t always about prenatal diagnosis and abortion. Certainly, there are some who believe in eugenics but the majority of scientists are looking for genetic information that enhances diagnosis and treatment.
Autism father Ian Parker at A Shade of Gray has written a post (Thoughts on Prenatal Genetic Testing) that addresses many of the issues that can make the mention of a prenatal genetic test for autism the topic of heated and passionate debate. Ian does not shy away from presenting on his own views and on “joys, trials and tribulations of raising special needs children.”
One of the arguments used against testing is that after the development of a Down Syndrome test, 90% of detected Down Syndrome fetuses are aborted. The fear is that the same would happen with an autism test. To me this is a defeatist argument. Through education of society, counseling of parents, progress in terms of interventions to mitigate the negative consequences of autism, improved teaching methods and methodologies to help autistic children learn, and proof of better outcomes, we should be able to change that number. Rather than attempting to deny parents a test that is coming anyway, or deny them their legal right to choose because we don’t like how they may exercise it, a more worthy goal is to provide them with hope and the likelihood of a better outcome.
Education of what prenatal genetic testing is and isn’t—and, even more, of what autism is and isn’t—-is what we need first, and most all. Discussions such as those at Genetics and Health and A Shade of Gray provide a good, and thoughtful, start.
Go here to read Multiple Genes for Autism.
Go here to read Thoughts on Prenatal Genetic Testing.
We need to start an ad campaign to combat the defeatist attitude of organizations like Autism Speaks. Only when they are silenced will we be able to begin to relax.
Life with autism is not a tragedy, and neither is autism.
Yes, Kristina, but the prevailing “conventional wisdom” is that it is. And that “conventional wisdom” is buttressed by the megabucks of Autism Speaks and the mind- and media-share of “Autism Every Day”.
And the same “conventional wisdom” exists regarding Down’s. That is why there is a 90% rate of termination of trisomy-21 pregnancies in this country — with many of those decisions being foregone conclusions regardless of whatever genetic counseling might be available.
Genetic counseling regarding autism prognoses, if and when it is organized in the wake of breakthroughs in medical testing, is likely to be a barn door shut after the horse has long since escaped, as ineffective as it is for Down’s, unless we force and *shame* the “establishment” autism organizations — the old and possibly malleable, such as ASA, and the nouveau-riche brittle in their arrogance, such as Autism Speaks — into changing their public messages.
Prenatal testing brings a tremendous amount of fear into a woman’s pregnancy. The information you learn from these tests — that your child has x% chance of having a particular disorder, which you can do absolutely nothing about — is useless. A positive test for Down’s syndrome, or in the future autism, is no more a prediction of the child’s quality of life than a negative result it. But the test makes women scared. The worst case scenario will always be anticipated. It’s like saying to someone, tomorrow you will have a hurricane, but we don’t know if it will be a minor category 1 or a major category 5. So stay home and wait or take the next flight out. Which would you do?
I agree that autism needs more advocacy and less fear-based propoganda, but prenatal testing will be a setback for this re-education.
Check out this article for an interesting take on the Politics of Prenatal Testing:
http://www.firstthings.com/ftissues/ft9304/articles/kristol.html
When an AFP result concluded my second child would be born with Down’s my members of my extended family were vocal regarding “termination”. Both for and against. I kept my own counsel and my son. He does not have Down’s. He has a very high IQ. An irony in that the pro-terminator’s are IQ snobs. He is however an aspie. A Dx which took years and years to get correct. Now I wonder how many Aspie are mis-dx with the AFP. Also I think of all the time lost in treatment and all the frustrations our son and those who love him endured. What if we had had the right dx from the beginning!
If we had a genetic autism test and applied it to the fetus then then we could better predict whether the genetic transition happened after birth or prior to birth. May people are scared about mercury based vaccines, they likely don’t cause the abnormality but at least we would know for sure with some genetic testing.