Four years ago, when our son was so desperately sick and his condition so mysterious and
uncontrollable, we felt we had no choice but to undertake a pilgrimage to Lourdes as an act of final desperation. His medical application for the pilgrimage contained a long list of diagnoses and medications. The list was so long it felt insurmountable; I collapsed under its weight nearly every day.
Today, the list is twice as long as it was then (and my stamina to face that list has grown
apace). The latest trophy on his formidable shelf of diagnoses: Autism.
For many parents, this is their child’s one and only diagnosis, the A-word that many dread with fear and trembling; one that conjures misunderstandings both about its causes and its effects.
While it’s clear the number of autistic children is, and has long been, on the rise, it’s not yet clear why. And every new DSM edition upends the prevailing wisdom about what autism looks like, what we should call it, which traits define autism and which traits are just quirky. As the classic saying goes, if you’ve met one person with autism, you’ve met one person with autism.
I definitely carried some of society’s emotional baggage into Oscar’s diagnostic process. Was it not enough that he was already diagnosed with X, Y, Z, and also Q? Did we really want to open this next door, too?
We did, and here’s why. Due to the vagaries and whims of insurance reimbursements, labels matter. An autism diagnosis grants entry to services and tools that are otherwise unavailable. Sliding in under the autism umbrella, however vague and ever-shifting its shape, opens doors.
It also changed the way we perceived and responded to some of Oscar’s quirkier behaviors. Rather than pursuing every strange movement as a possible seizure (epilepsy has been his primary diagnosis since the age of five months), we could view them through the lens of his autistic brain: stimming, sensory-seeking, repetitive motions, and withdrawing are all hallmarks of autism. Not neurotypical, but also not pathological.
The thing that sticks in my craw now, though, is this: I have always said, only half-joking, that Oscar is an N of 1. His true diagnosis is something I call Oscar Syndrome. He is fearfully, wonderfully -- and, in his case, particularly mysteriously -- made in the image of God, just as each one of us is.
Labels undo that interpretive framework, especially labels as powerful and all-encompassing as autism. Rather than seeing my son as the sum of his own beautiful, quirky parts, he is now at risk of being lumped in to the common assumptions about what autism is, who autistics are, how autistics behave. This is true both in general society and in the medical establishment.
Labels and medical diagnoses are a means to end, not the end in themselves, and never the end of a story. One set of important words that I’ve carried with me since the first day I read them belong to Hilary Yancey, writing about her first child’s prenatal diagnosis with significant physical differences. Lying on the ultrasound table, listening to the technician’s words that would turn her world upside down, God spoke into Hilary’s heart: “She can never tell you something about this person I do not already know.”
Oscar’s autism diagnosis changed the way we see him. It changed our understanding of the way he moves his God-crafted, divinely fashioned body and mind through the world. It changed the way the world will see him now, too, both for better and for worse.
It changed nothing about him that God already knew.
Christy Wilkens, is wife to a tremendously patient and tender husband, Todd, and the mother of six tireless (no, seriously–tireless) children. They live in a tumbledown farmhouse on five unkempt acres. She drives a 12 passenger van and her family lives and breathes audiobooks. We fulfill every stereotype you have about orthodox Catholic homeschoolers. She blogs at Faithful, Not Successful.