"No Thanks" to This Line of Autism Research
My daughter asked, "Will there be a vaccine against people like me?"
Posted Nov 04, 2016
My family’s DNA is a coveted commodity. Our older daughter is autistic, and researchers want our blood and saliva. Once upon a time I would have willingly, enthusiastically donated, even given my limbs or organs, if a doctor assured me that doing so could cure her, but our daughter is old enough now to make such decisions for us. She says no to the cheek swab and blood draw. No to anyone trying to “fix” her.
When she was diagnosed in 2002 the developmental pediatrician explained, “Her test results are consistent with mental retardation. Unfortunately, I don’t think that’s what’s going on. She has autism.” That was the day my child disappeared. If someone had offered me a child who looked into my eyes; uttered words such as “yes” and “no” instead of reciting passages from books on the rare occasions when she spoke; played with toys instead of lining them up; and sat on chairs instead of on other children, oblivious to their presence, I would have taken that child. If someone could have given me the child I had planned to have, a “normal” child, I would have jumped at the chance. Make her life easier for her, for her sister, for her father and me. Make her want to hug me.
Many parents, educators, and scientists share the goal of helping with autism—until they are asked to clarify their exact goal. Then the “shared” vision becomes less universal. Sponsors of the two major genomic databases say they want to understand the genetic complexity of autism.
SPARK, an initiative of the Simons Foundation, aims to collect 50,000 DNA samples for researchers all over the world to access. Their principal investigator, Wendy Chung, explains that “SPARK will help researchers make new discoveries that will ultimately lead to the development of new supports and treatments to improve the lives of people living with challenges.” Autism Speaks, cosponsor along with Google and Toronto’s The Hospital for Sick Children of the second genomic database, MSS.NG, just changed its mission statement in September to eliminate the goal of searching for a cure. Its new agenda advances “research into causes and better interventions for autism spectrum disorder and related conditions.” Some of these new interventions and supports will help autistic people to communicate if they are non-verbal, to react less painfully to sounds, textures, and pressure, to reduce anxiety to a level that allows them to pursue their ambitions. Who could argue with such improvements to quality of life? Certainly I will not.
If I could believe these goals were the only focus of the research, I’d be all in. But not all researchers are limiting their agendas to supporting autistic people as they grow. Identifying the genetic foundation of a “disorder” usually precedes efforts to create tools for early detection (best case, in utero), and then either treat the condition with a medical intervention or allow parents the choice of termination. A press release from Autism Speaks this summer proudly announced that researchers have found “an abundance of autism linked changes in DNA outside of the gene-coding regions of the genome. Traditional genetic testing largely ignores the non-coding regions of the genome.” Surely some researchers will insist that they want to create a test for early detection so that they can provide early intervention services. But anyone who believes this is the only motivation for locating genetic markers is a fool. Already researchers are identifying the genetic markers for empathy; improving mouse sociability through epigenetic modification, and stimulating repetitive behaviors in rats by altering gene expression. With the advent of CRISPR technology, the time will come when relevant genes in humans can be rewritten to alter the offending traits. In other words, eradicate the scourge of people like my child being who she is.
My daughter still does not look me in the eye. She eats alone at school. Her anxieties can still crush her and exhaust me. No one has ever said that she doesn’t seem autistic; she cannot “pass” for a minute. (Although she no longer sits on people.) However, her autism gives her a window onto the world that I value. She has no need to impress anyone, to conform, to accept the values and behaviors of her peers without question. She notices details in everything she sees that contribute to her considerable artistic talent and creativity. Without going through a list of famous artists, musicians, inventors and scientists who were likely autistic, I worry about a world bereft of the contributions of people whose brains work in such unique ways—unique ways that are part and parcel of autistic behavior. We cannot keep the benefits without accepting the challenges.
“Mom, will there ever be a vaccine for autism?” The question comes out of the blue. Leaving aside the challenges of addressing a condition of such genetic complexity and such varied expression, I ask my daughter if she thinks an autism vaccine would be a good idea. Her answer is, “Autism is not a disease the way polio is, and I’m worried about people treating it like a disease. I think it’s important to have autistic people in the world!” It has taken me years to reach a point where I can say this, but I agree with her. Other parents will choose to donate their DNA and I will not judge them harshly. But I am glad that a cure was not available when she was diagnosed, or even when she was ten years old. I would have taken it without hesitation and lost the amazing young woman she has become. For our family, we will not sign up.