Fearfully and Autistically Made
It took seven months on a waiting list before my son could be evaluated for autism.
That time was a curse in many ways. Things got worse. He gave himself black eyes and gashes on his forehead because his body craved more input. He slept without clothes because he became too overwhelmed by changing them in the morning. He went on unaware of how to commune with other people, oscillating between entirely ignoring his peers and tackling or laying on them.
But those seven months were a gift, too, because that turned out to be the amount of time I needed to make peace with autism. Despite the fact that Declan could have benefitted from an earlier evaluation—despite the fact that close friends and family encouraged us to seek one—my own fears inhibited me. While we waited, I began to reconcile a disorder I understood little about with the child I’d rocked to sleep for three years. That reconciliation resulted in a drastically different understanding of autism spectrum disorder, one that enabled not just awareness of ASD, but also acceptance of it.
The word autism is derived from the Greek “autos,” which means self—as in “implying a narrowing of relationships to people and the outside world.”
When my son goes to children’s church every Sunday, the routine is mostly the same. He holds my hand as we wait to check in, rocking from one foot to the other. One of his classmates, a vibrant little girl, excitedly approaches to say hello. Declan ignores her. We walk into the room. The teachers say hello. Declan ignores them. Without a word, he sits on the rug; he’s near others, but he’s not. Not really.
I enter the service similarly. I worry about Declan. What if, eventually, his peers grow weary of saying hello to the boy who doesn’t wave back? What if nobody ever knows that he’s funny and bright and kind? Beautiful voices culminate in praise around me; I blindly shake hands with my neighbors whom I do not see. Autism: “implying a narrowing of relationships to people and the outside world.”
When my husband and I finally walked into the neuropsychology evaluation room, a small space outfitted with a smattering of toys, we were asked when our concerns began. I had no idea how to answer. There was the time, when Declan was just 18 months old, that he head butted a brick wall. That was concerning. The fact that he smiled and tried to do it again was even more worrisome. His speech delay, of course, should have been a red flag. He threw big, violent fits. The sound of laughter or popping gum sometimes scared him. He has an obsessive interest in circles. He asks to hug fire hydrants when we pass them.
As I recounted these things to an autism specialist, I felt simultaneous relief and guilt. Relief that we were there, speaking aloud the things we’d silently worried over. I felt shame that these things didn’t compel me to seek an evaluation sooner. In retrospect, the signs were there. I just wasn’t ready to interpret them; I was not ready to have an autistic child.
There is a stigma tethered to autism, inspired by a combination of misinformation and fear. The result is a sort of cultural boogeyman. The idea that my child could be autistic inspired a uniquely paralyzing fear in me. For at least three years, autism was a tragic affliction with no known cure. My son did not seem like someone suffering a tragic affliction; he just seemed like a person—the one I carried and bore; the human being I dignified with a name.
Declan: man of prayer; full of goodness
Autism: a narrowing of relationships to people and the outside world
For a very long time, these two things seemed to war with one another. I perceived autism as something that would detract from my son’s identity, not something that could be central to it. It took seven months, countless fits, and many awkward conversations with friends and family before I could think of my son as an autistic child rather than a child with autism. The difference is subtle but profound. The latter is a person afflicted with something—my dad has diabetes. My grandfather had cancer. The former is something weightier but freeing. It is the culturally absurd notion that autism might be part of someone’s personhood. It is an absurd notion that my own experiences with autism affirm.
When Declan was evaluated, the professionals conducting the exam didn’t scan his blood for a disease or take x-rays in search of something broken. They asked questions about his mannerisms. They observed him play. They knelt on the dusty floor and interacted with him. The question implied by such things is not “What does he have?” but rather “Who is he?”
Once he was declared autistic, it didn’t feel like our relationships were narrowing; it felt like they were expanding—making room for a God-knit little boy who isn’t typically developing. I felt relieved. My heart swelled with joy for who my son is. We felt peace.
That night, we ate cake. We commemorated the end of one journey and the beginning of another. We rejoiced over the fact that doors to much-needed therapy would finally open. We affirmed the personhood of an autistic little boy; we celebrated the face of a boogeyman.
Declan has big brown eyes set into a round face. His smile, when he graces you with it, is angular and cheesy. He spins in circles, around and around like a colorful top. He loves music. His hands flutter like the steady thrum of a heartbeat, clasping and unclasping with rhythmic beauty. The only unprompted observation he has ever made about God was informed by his obsession with circles:
“Look—circle!” he exclaimed from the backseat.
“That circle is called the moon. Did you know that God made the moon?”
“Thank you, God.”
I cannot find the place where Declan stops and his autism begins. I struggle with it at times, as I’m sure he will. But I treasure relics of hope, too. There are the obvious things—patient speech-language pathologists, kind preschool teachers, weighted blankets, and fidget toys. And then there are smaller, stranger pieces of hope. Sometimes it is as miniscule as a gas station clerk who has bothered to remember your son’s name. It is the fact that God dotted his creation both with circles and little boys who love them.
And sometimes hope is a spunky girl at church who still waves to the boy who doesn’t wave back. It is his faint whisper when she walks away—her name, uttered so softly I can barely hear it, but uttered nonetheless.
In my experience, autism isn’t simply the narrowing of relationships to people and the outside world; it is the altering of relationships to people and the outside world. Perhaps that’s something that needs to be accepted, not cured.
Valerie Dunham is a staff writer and sports columnist at Christ and Pop Culture. She lives in Blacksburg, Virginia, with her husband, Matt, and son, Declan, where they attend Northstar Church. She enjoys sports, reading, and reminding everyone that she is originally from New England. You can connect with Val on Twitter @ValDoesWords.