“Mom, in thirty years will there be a shot people can get to prevent autism?”
A new research initiative, SPARK, is soliciting the world’s largest collection of DNA from autists and their families. Just think: fifty thousand data points available to scientists studying autism. Participation is so easy. Fill out a questionnaire, receive a vial in the mail, provide some saliva, and send it back in a postage-paid envelope.
My first inclination, as always, was that I should do my civic duty. Collect those specimens. Spit into the vial. Add to the database so that people who need my cells can add to the store of knowledge. I love to feel needed. But then I thought again. How will the data be used? The SPARK website assures us that “With everyone’s help, we will be able to obtain answers more quickly to the questions we all have about autism.” Which questions are those? All of us, I think, wonder how autism develops and how people with autism can manage their anxiety and other challenges. However, I anticipate that much of the research will be used to find a cure or a prenatal test, and success on that front is not a goal I endorse.
I asked Sam where she came up with the idea about the shot. Polio has been front and center in her brain since she, as Temple Grandin, debated Jonas Salk’s representative in class, and she told me she worries about geneticists wanting to eradicate autism the same way polio was eradicated: “Autism is not a disease the way polio is, and I’m afraid of people treating it like a disease. I think it’s important to have autistic people in the world!”
Sam is no fool. Identifying the genetic foundation of a “disorder” usually precedes efforts to identify it early (best case, in utero), and then either treat the condition with a medical intervention or allow parents the choice of termination. Surely some researchers will insist that they want to create a test for early detection so that they can provide early intervention services to facilitate communication, attachment and improved sensory regulation (all of which I endorse). But anyone who believes this is the only—or even the main—motivation for locating genetic markers is a fool. Sam is no fool. She knows how many people want to treat autism like polio. For now our cells will stay with us, safely secreted inside our cheeks (pun intended).
As I’ve written before, I understand why some parents view their children’s autism as a scourge. On really rough days, I battle myself to stay out of that camp. As any parent of a child with special needs knows, “high-maintenance” only minimizes the emotional and physical toll of raising our progeny. How might I feel if Sam were non-verbal? If she weren’t so artistically and academically gifted? If she needed constant supervision? While I do not know for sure, I suspect I’d be sending our spit out today.
In an article in the March/April issue of Scientific American Mind that discusses the fragile X permutation, a woman who knows she is a carrier—her two younger siblings have fragile X syndrome—talks about her own fertility: “Having grown up watching my parents struggle, it’s not something I would take on, knowing it could be avoided in a way I feel comfortable with.” In other words, a positive result during amniocentesis would allow her to terminate the pregnancy. This woman speaks from direct experience, and I will not condemn her. I know that Kelly would choose differently if a test were developed for autism by the time she reached adulthood; she has declared as much in her own battle to dissuade classmates from wanting to eliminate all disabilities, as those classmates define disability.
I cannot imagine a good reason for wanting to preserve polio. Similarly, I would joyfully embrace news about a vaccine against the Zika virus. However my knowledge of microcephaly is based on a few newspaper articles, and I might have a different opinion if my child were born with the condition. When Sam was diagnosed as autistic, I have no doubt that I would have jumped on an antidote. Remembering that time of unblemished fear keeps me from condemning the scientists who believe they are fighting the good fight, even if I believe they are wrong.
Some day, likely within the next thirty years, our society will have the capacity to genetically reprogram all kinds of disorders, syndromes, abnormalities, disabilities, differences . . . whatever we choose to call them. I lie when I tell Sam it will never happen. She is not yet ready to carry the burden of persuading her peers to preserve the next generation of people like her, but she may have to do so. The world will be a poorer place without her gifts.