As I went through the paperwork, I was aware of a familiar hollow feeling in my chest. It was the one I had when my older son was diagnosed with autism.
This past March, while the world was still in COVID-crisis mode, my husband and I were in a crisis of our own. We had applied for guardianship of our son Peter, who has mild to moderate autism and had just turned 18. We felt an urgency to secure it as quickly as possible, because if he became sick with COVID and were hospitalized without guardianship, we could find our ability to direct his care severely limited.
But when we received the documents from our attorney, stipulating in black and white that my husband and I would be, technically, adversaries of our son in the guardianship court case, I felt a flash of that soul-deep anguish I had felt at Peter’s diagnosis. His limitations, both personal and social, were spelled out in the paperwork. I cried.
I was taken back to December 2005 and the moment when the developmental pediatrician first spoke the words, “Your son has autism.” At first, I couldn’t breathe. It was probably only a few seconds, but it felt much longer. And then, suddenly, I was sucking in great gulps of air as I tried to control my distress and tell the doctor the story of our son. I began by recalling that while I was pregnant with Peter in late 2002, a marker for Down syndrome had showed up in a routine ultrasound.
I was sent to a perinatologist for follow-up and a more thorough screening, but I got in an argument with him because he insisted that I have an amniocentesis. When I said I didn’t want one, the doctor—who had seen me for all of five minutes—persisted, arguing that “some couples like to terminate the pregnancy.” His words made me angry. I told him that we would be keeping our son no matter what and that I was refusing to have an amniocentesis. As he was leaving the room, his parting words were, “Well, you have a 25-percent chance of having a child with Down syndrome.”
He wasn’t telling me anything I didn’t already know—I had a 25-percent chance of having a child with Down syndrome based on my age alone. He said it to show that science was on his side and to scare me into agreeing to the amnio, which just made me angrier. But it also made me sympathetic toward women who feel compelled to consent to extensive prenatal testing only to be pressured into having an abortion if their unborn child is diagnosed with a disability.
Instead of getting the amnio, I saw a different specialist who ordered additional ultrasounds to check for any other markers or health issues that could require Peter to have surgery after birth. The doctor was astonished at Peter’s size—he weighed four pounds while most babies at 26 weeks weigh a little less than two pounds. She eventually concluded that the marker for Down syndrome was probably related to how big Peter was at such an early stage of pregnancy. After two months, we were told that he did not have Down syndrome.
Now I had just been told that he had autism. As I recounted the story about the Down’s marker to Peter’s pediatrician, I wanted her to know—and I guess I needed to say the words out loud—that we would fight for our son. We had before and we would again.
All children are miracles, but my husband and I were told we would have trouble having them—if we were able to conceive at all. Our daughter was born on our fifth wedding anniversary; two years later I suffered a miscarriage. Becoming pregnant with Peter two years after that was no less of a miracle than the birth of our daughter. After concluding that we would be blessed with only two children, our youngest was a surprise, arriving seventeen months after his older brother.
I have never regretted for a moment having children with special needs (our younger son was diagnosed with autism about six months after Peter) but I know the world can be cruel—espousing acceptance of people with disabilities on the one hand while on the other pushing to “eliminate” disabilities by pressing abortion on the expectant parents of children who don’t pass the sonogram or genetic test.
Not surprisingly, in a December 2020 article in The Atlantic, the chief scientific officer of Genomic Prediction, a New Jersey company that screens embryos for IVF treatments, said that the one test customers continually ask about is for autism. Such a test doesn’t exist—not yet. Scientists have identified several genes that can indicate a probability of an autism diagnosis but so far, no test can reliably pinpoint it in utero.
I feel a special affinity with people who learn an unborn child has Down syndrome. These children are often targeted for abortion, with doomsayers like the perinatologist I saw pointing to all the negatives that await prospective parents. Children with autism likewise will be targeted as soon as the science makes it possible.
For all the problems it can solve and all the wonders it can create, science has a dark side, manifest in the quest to identify—and discard—those who are not “normal.” As science advances, our society retreats from extending true, life-long (from conception through natural death) compassion to those with disabilities.