Prenatal Test for Autism: Would You Want to Know?

Right after Casey was diagnosed, I went to an autism convention. They brought up the fact that there were new genes being linked to autism all of the time. I got all excited. That would mean I wouldn’t have had to jump through all of those hoops to get him diagnosed! It would be like it is with Down syndrome; I could have just known in advance and been prepared.

Fast forward several years. I have a baby with Down syndrome. A baby I thought everyone would just think was beautiful, wonderful, etc., because that was the bubble I lived in. I thought anyone would want a baby with Down syndrome. I remember being so jealous of the kids with Down syndrome in Casey’s Early Intervention classes because they didn’t scream and kick every time they were dropped off. I knew somewhere in the back of my mind that some people aborted babies because they had Down syndrome, but I thought that was rare.

That bubble burst when I learned most of babies who are prenatally diagnosed with Down syndrome are aborted.

It is for this very reason that I hope there is never a prenatal test for autism. I once did an informal poll in a very large debate group online. I asked if there were a prenatal test for autism, would they get the test, and, if the results were positive, would they abort? I said that the test would only determine if there was autism, that it would say nothing of severity of the disability. Even with that uncertainty, more people in the group said they would abort than those who said they would not.

It should have taken me by surprise. It did not. Not in a time when if you Google “People with autism should…” some of the first auto-fill results come up as “die” and “not exist.” (However, I gleefully inform you that due to the work of some wonderful autistic bloggers, this will soon no longer be the case!)

This isn’t about abortion. It’s about living in a society that no matter what it preaches, still sees people with disabilities as sub-human. That people with disabilities are ONLY a burden and have nothing to offer society.

I think about the “wrongful birth” suit in Oregon that awarded the parents of a child born with Down syndrome three million dollars because the results of their prenatal testing were botched and she ended up with a child that she would have otherwise aborted.

It will be like it has been in California since the 1990′s.

“They flatly admitted that California’s prenatal testing program’s purpose is to reduce the number of children born with Down syndrome through earlier abortions.” Mark Leach, The Examiner

And by so doing, they have saved the state money in what they term, “preventative care.“ They see these tests as being overwhelmingly cost effective because they prevent the extra cost to society that people with special needs sometimes incur.

I’m not against prenatal testing. I’ve had the blood tests and/or in-depth ultrasounds looking for Down syndrome and markers for other things with each of my pregnancies (We did not do the blood tests with Abby because it was a twin pregnancy, and those aren’t very reliable anyways. None of the higher-level ultrasounds showed any markers for DS.)

It’s good to know going in what you are dealing with. Had we known Abby had Down syndrome prior to her birth, we would have elected to have her at a bigger hospital, and we would have probably known beforehand that she has a heart defect. We would have read the books about Down syndrome and reached out to the Down syndrome community. We would have used that information to prepare to have a child with a disability.

However, if we’re truly being honest though, how much of prenatal testing is about preparedness as opposed to pre-selection?

I hope there’s never a prenatal test for autism. This world doesn’t need less autism; it needs more understanding and acceptance.

I think about my son. I think about how much he has taught me about how unnecessary some social norms are. He’s taught me that I care too much about things that matter too little. He’s challenged me to look outside of my own box and try to see into a world that is colored with amazement, but also with noises that are too loud, lights too bright and sheets too “sandy.”

I think about my friends who are autistic. Who have shown me how lucky I am to have autism in my family. They help me to better understand my son. They advocate for changes in every area for people with disabilities. They speak for themselves, and they speak for the future generation. The changes they are pushing for now will affect how my son is treated. Their voices are vital and necessary and we need to listen.

I am grateful every single day that I was given a life less ordinary. My children have taught me a whole new standard for happiness and success. I am grateful for what they’ve taught me about the need for diversity and acceptance. It’s not always easy. There are days that are harder than I even have words for, and not just for me. My kids, all four of them, are raising me, too, and it can’t be easy for them, either.

Most of my days are filled with a lot of joy, and there is no prenatal test for that.

If a prenatal test were available for autism, would you have taken it?

Lexi is a writer and stay at home mother to four children. She has three boys who were born in less than 3 years and one daughter. Her middle son has autism, her daughter has Down syndrome. She writes somewhat honestly about all of this at Mostly True Stuff.