If you found out the baby you’re expecting would be autistic, what would you do?
Currently there is no prenatal genetic test for autism, the neurological developmental disorder that numerous children – 1 in 88 or even 1 in 50– are being diagnosed with. Such prenatal tests exist for other conditions such as Down’s syndrome. On learning their fetus could have this intellectual disability, between 70 and 85% of pregnant women in the US choose abortion, writes Amy Julia Becker, whose 7-year-old daughter Penny has Down’s syndrome, in The Atlantic.
On March 26, North Dakota became the first US state to prohibit abortions after detection of “either a genetic abnormality or a potential for a genetic abnormality,” with this defined as “any defect, disease or disorder that is inherited genetically”. Down’s syndrome is specifically cited in House Bill 1305 (pdf).
Some disability advocates have hailed the law as a step forward to create a better society for individuals with disabilities. As Mark Leach, a lawyer and parent of a child with Down’s syndrome, writes, banning the discrimination of a child with disabilities even before she or he is born is an example of how
“public policy starts with the statement that discrimination is prohibited and then states enact policies to create a society where discrimination is no longer a barrier.”
A result of passing such laws could indeed be “to increase the number of advocates for … social supports” – for education and other support services for individuals with disabilities, he argues.
Knowing that society is not a place where individuals with disabilities are fully supported and integrated is why many women have terminated their pregnancies when they learn that their child has Down’s syndrome, Alison Piepmeier, whose 4-year-old daughter, Maybelle, has Down’s syndrome, is writing a book on prenatal testing and reproductive decision-making. In a preview in the New York Times, she shares that the many women she has spoken to all emphasized that “abortion was an incredibly painful decision,” but one they chose in no small part because “they recognized that the world is a difficult place for people with intellectual disabilities”.
As parents of children with Down’s syndrome, Becker, Leach and Piepmeier have all been confronted with the news that their fetus had genetic abnormalities and chosen to have their baby. It’s different for autism because children typically are diagnosed when they are around preschool age. My son Charlie was diagnosed with autism after his second birthday in 1999. Just when most parents are delighting in their little one’s every-growing vocabulary, my husband and I realized that Charlie might never talk at all.
Scientists have been making gradual but continued progress in finding genes linked to autism, so the prospect of a prenatal text is not out of the question and it is often forced me to ask myself the tough question: would I have aborted my disabled child?
If I had known before Charlie was born that he would be severely autistic, I would still have decided to have him. I remember my OB-GYN finishing her explanation of amniocentesis by saying that “you just need to know your options” in case something “was wrong”. I had long felt Charlie moving inside me. With memories from my college days advocating for a woman’s right to control her body echoing in my head, I said to myself, Charlie’s not even born, but I can’t imagine life without him.
Weeks shy of his 16th birthday, Charlie is a loving young man with profound challenges. He attends a school specifically for students with severe behavior problems and will always need 24/7 care. His EEGs reveal brain abnormalities that confound neurologists: Charlie does not have seizures but, at times, something goes “off” in his brain. The last time this occurred, we had to call 911 and were soon surrounded by a crowd of police and EMTs.
April has been dubbed Autism Awareness Month and also Autism Acceptance Month. Understanding the differences of autistic individuals also means recognizing that caring for an autistic person profoundly changes people’s lives, affecting career choices and relationships. An expecting mother confronted with the news that her unborn child may have a disability isn’t the only one who has to make “incredibly painful” decisions.
Autistic individuals have a normal life expectancy. Every choice we make for Charlie influences his entire life and ours. What if we choose wrong and he ends up neglected in a state facility, sedated with drugs rather than (as he does every weekend with his dad) enjoying bike rides on nature trails? What will happen after we are dead? Who will seek out Charlie’s favorite bagels and sit with him through bouts of anxiety-fueled insomnia?
In The Atlantic, Becker writes that we err in turning the debate about abortion into a matter solely of individual rights, whether the fetus’ or the mother’s. Rather, “our whole culture is implicated in the selective abortion of fetuses with disabilities.” It is one thing to champion the rights of the unborn. The fact of the matter is, there are few places in the world that do an adequate job of caring for an individual with disabilities.
As I walk behind Charlie (he’s almost six feet tall with a stride to match), I know I can’t imagine life without him. I regret none of the choices I’ve made. But given the state of services for adults like Charlie, I can only fear. Faced with the results of a prenatal test about their unborn child, we must still have the right to choose what to do.