I knew I was having a boy—and I knew, after spending many late nights poring over forgotten studies in obscure medical journals, what that meant. For a boy with an older sister with autism, the chances that he had it were as high as one in four. If I factored in the fact that both of my son’s biological parents have conditions genetically linked to autism, the results were clear. It’s far more likely that my baby boy will be autistic, than that he won’t be.
I was thinking about this, and what it meant for my family’s future, while a nurse looked over my daughter at a visit to the pediatrician’s office.
“A boy,” the nurse repeated back to me, “Are you going to get genetic testing? They seem to be able to test for everything now, if you ask for it. Do they offer that for autism?”
“No,” I said, fidgeting with a pen, “No, they don’t have genetic testing for it. Not yet, anyway.”
But they’ve been trying.
The Basics on Prenatal Testing for Autism
Genetic research into autism has advanced miles in just a few years, and we might be only a few more years away from being able to diagnose it prenatally. Already, Baylor College offers a prenatal chromosomal microarray test, the closest thing to prenatal testing for autism that we have to date. The test reveals tiny duplications and deletions in genetic material, which together are behind about 20% of cases of autism. At the rate we’re going, autism could join Down’s syndrome, sickle cell disease, PKU, and cystic fibrosis as one of the many diseases that high-risk moms will test for, and make decisions about.
To date, our best studies—those that have examined identical twins—have estimated that over 90% of the differences between autistic and non-autistic people are genetic. The remaining 10% are believed to be environmental influences like nutrition and early care, which in some cases might influence a child’s development so strongly that one child can be “genetically autistic,” but appear to have few or no symptoms. The test also would not test for how the child’s symptoms will appear. Identical twins sharing 100% of their DNA can, for unknown reasons, present completely differently: one nonverbal and reserved, the other verbal and explosive. The fact remains, though. Prenatal testing for autism could change everything about the way we, as parents, live our lives and make our choices.
Prenatal Testing for Autism… and Abortion
The outcome could be grim, and could result in a plummet in the number of autistic children and, later, autistic adults we share our planet with. Although we live in a nation where roughly half of women oppose all abortion and where the vast majority oppose abortion after the first trimester, a whopping 91-93% of pregnant women choose abortion after learning that the fetuses they are carrying have Down’s syndrome. This is even higher than the rate of women who will terminate a pregnancy because the fetus has anencephaly, or no brain. In other words, women are on the whole more afraid of having developmentally disabled children, than they are of having children with no hope for survival.
If science does succeed in making prenatal testing for autism available, how many parents will believe the same thing? If the abortion rate for prenatally diagnosed autism is anywhere near as high as it is for Down’s syndrome, spina bifida, and even relatively minor differences like Turner syndrome and Klinefelter syndrome (which cause abnormal reproductive development), the vast majority of autistic fetuses will never survive to birth, and the consequences, for parents and for society at large, could be devastating.
Any woman who has terminated a wanted pregnancy for medical reasons can tell you that this is not a decision that is ever taken lightly. It hurts, deeply and completely, and it never entirely stops hurting. The loss of a wanted pregnancy often triggers every bit as much grief and despair as the loss of a newborn. It is a choice that even otherwise anti-abortion moms will make not because they don’t love or want to be mothers, but because they genuinely believe that they will be unable to parent a disabled child, or will believe that a disabled child’s life isn’t worth living.
Our Duty as Autism Parents
My heart aches for the one woman in five hundred who terminates a wanted pregnancy because of Down’s syndrome—and that ache becomes a horrified stab when I imagine the number of women who might do the same thing because of autism, which is now estimated to affect as many as one in seventy pregnancies. Prenatal testing for autism could lead to an epidemic level of grief and loss, and much of it could be unnecessary.
That’s where we, as autism parents, come in, and it’s where we, immediately before a new era of genetic testing, have an opportunity to make a difference. If you had told me six years ago, when I was twenty and pregnant and scared to death, that the little girl in my womb had autism, I would have believed that my life was over. I would have thought that my child would never be able to learn or feel or love. I would have thought that I was being sentenced to a life of never-ending agony and that the sweet moments that make motherhood worthwhile would be forever out of my reach. I wouldn’t have imagined the brilliant, bubbly, sensitive child who has stolen my heart and touched so many lives.
If we can work from the inside out to change the myths and misconceptions about autism before prenatal testing for autism becomes available, we can prevent millions of parents from experiencing the grief and agony of ending a wanted pregnancy. If we can empower the parents of children with special needs, improve respite care, and pressure our public school systems to improve the education they provide for autistic children, more parents will hear a prenatal autism diagnosis and think, “Huh, guess I’m in for a bit of a challenge,” instead of believing that their lives have ended and that their children’s lives won’t be worth living. We need to be making a difference now, not just to create a better world for our own children, but also to prevent an epidemic of loss among the parents of the future.
Prenatal testing for autism does offer some very real benefits. If and when it becomes wholly available, it will allow parents to make preparations beforehand if they know they will be having an autistic child. It will make it so that the children who need Early Intervention services the most will have few barriers to accessing them. Genetic screening of people who have already been born will help to identify autistic traits in children and adults who might be more difficult to diagnose. But I don’t believe that we should view elective eugenic abortion as a major benefit to prenatal testing. While every woman should ideally have that option, it’s a pain that would only rarely be “worth it,” and it’s a pain that we can prevent by making sure that children and parents have what they need to thrive.
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