The Cure for Him
My wife texted me the link: “FDA Grants ‘Breakthrough Therapy’ Status to Potential Autism Drug”
I sighed. Then texted, “I don’t know how I feel about this.”
She responded, “Agree”.
The cure for autism is a problematic concept for our family. We would never thrust it upon Charlie. It would be his decision. That would require us to first explain to him the nature of his challenges, which is no simple conversation. How do you frame “autism” in the context of limitation without creating a bias toward a cure? How do you frame “autism” in the context of “being autistic” without creating a bias against a cure?
Telling Charlie that he is autistic would be impossible to do correctly. What does it mean? Was he injured? No. Was he defected? No. He was just born this way. A part of a trajectory that has run through the family gene pool for generations. And parts of that diagnosis have given him limitations that others don’t have. Verbal limits. Gross motor skill limits. Those limitations prohibit his choices in life, just as my lack of coordination prevents me from becoming a dancer. But how do you parcel out the supposed “good” from the “bad” when disclosing to a child what a drug would do to who he is?
“Charlie, this will help you talk to us better but may also result in the loss of pleasure in all the things in life that make you happy. Want to take it?”
While there are those charlatans, such as Jenny McCarthy, who claim that the vaccines which caused their child’s autism stole their child away, I often worry that pharmaceutical companies and society’s path of least resistance will eventually steal Charlie.
There will be a drug. He’ll take it. And day by day my son will become this other boy, no longer interested in the careful construction of marble run tracks, no longer flapping his arms when he’s excited. The love of learning, of immersing himself in his sensory world will be replaced with some generic desire to mean something to the rest of the herd. And the beauty of how we communicate, the uniqueness that makes him so him will be gone forever.
