The Autism Lie

 

This post is the fourth part of a series for Autism Awareness Month.

Here is the lie we tell ourselves about autism: People on the spectrum don’t want friends.

We tell ourselves this lie because we don’t always understand people with autism; we believe it because it’s easier not to try.

I’ve encountered a lot of myths about autism—I have knowingly and unknowingly perpetuated some of them. But this is not a myth, it’s a lie—and I cannot stand for it.

My son began attending public school this year, and I went out of my way to buy him the perfect first day of school shirt. It was one of those Ninja Turtle numbers with all the bells and whistles. I spent ten too many dollars on it knowing good and well he’d outgrow it before spring. The funny part is that he doesn’t even really like Ninja Turtles that much. But then, I didn’t really buy the shirt for him—not directly, anyway.

I bought the shirt for the other kids—the primal little creatures who, even at four years old, smell “different” from a mile away and swarm like sharks in bloody water. I bought it on the outside chance that one of those kids might think “sweet shirt” and mistake my boy for one of the PreK approved cool kids.

They did not.

A few weeks ago, at his school’s annual “Fine Arts Night,” I watched Declan chase down his classmates with an incessant “Hi! Hi! Hi!” mantra. Most of those kids ignored him entirely and, here’s the kicker—Declan was not remotely surprised. At four years old that’s what he knows to expect from interactions with his peers: a lopsided communion, one in which he’s ignored at best.

I doubt his classmates know what autism even is, let alone that Declan has it, but I won’t be surprised if, one day, even the kind kids tell themselves “he doesn’t want friends.” The magic little lie that turns exclusion into a mercy.

I sometimes joke that Declan likes dogs more than he does people. This isn’t true, exactly. Declan approaches dogs with confidence and kindness because there are no unwritten human rules to sidestep—landmines you’re only aware of once you graze one.

We have intricate, systemic social codes and the majority of people understand them. They’re useful things, sometimes—and when someone deviates from this system it’s easily noted. It’s often awkward. And I get that.

So feel uncomfortable when my son quotes wrestling songs at you—Lord knows I did when the lyrics happened to be “I hear voices in my head, they council me they understand,” quoted at a store clerk. Help him along when he can’t get past the “hi” part of a conversation.

But know that when you refrain from interacting at all, the only charity you’re extending is to yourself. The fact that he doesn’t engage in friendship in the usual ways doesn’t make him an island unto himself, content not to engage in friendship at all.

Maybe this is why Declan loves dogs: When he calls Fenway’s name, our pup comes running eagerly. He has never noticed the Ninja Turtle shirt.

 

The Fire Hydrant Incident

 

When I was pregnant with Declan, people talked a lot about motherly instincts—an intuitive power that, when unleashed, would unlock secret swaddling knowledge and steer me toward breast feeding and Target. I have concluded that my motherly instincts are dormant—still awaiting that radioactive child bite, I guess.

There are a lot of things about my son I didn’t pick up on intuitively. One of them is this: Declan does not like anything half-heartedly. He loves things with an all-consuming, overwhelming fierceness that the world is okay with if we’re talking a Sheldon Cooper affinity for science but less so if we mean, say…John Cena and fire hydrants.

The wrestling obsession is its own blog post, which I’ll save for another day.

Here’s the thing about a kid who loves fire hydrants, though: sometimes that kid asks for a fire hydrant themed birthday party, and sometimes when you try to artistically render a fire hydrant it looks…not like a fire hydrant.

Praise God we had more sense than to try a themed cake. If there’s a silver lining it’s that. We did, however, order fire hydrant decorations, some of which turned out well and other that really did not. The cups were great! The fire hydrant center pieces were unfit for a child’s party.

“I have so many questions,” I murmured. My husband and I stood in the middle of the low-budget gymnastics shed we’d rented, heads cocked to the side as we tried to make the yellow phallic shaped centerpiece look less like a yellow phallic shaped centerpiece.

“Why would they not have just made it red?” Matt asked.

We tried to arrange the fire hydrant discreetly while Declan bounced happily from one trampoline to the next. The teenager charged with overseeing our party cranked up her kind of inappropriate music. I thought about asking her to put on something more befitting a four year old, but I was attempting to hang what looked like tacky bachelorette party decor from the ceiling and thought “never mind.”

I have made peace with the fact that my son’s interests will always be intense and infrequently “normal.” We’ve decided as a family to honor that—to live in his world rather than mandating he join ours. I’ve become aware that some of the social constructs I subscribe to as a neurotypical person are reasonable, but many of them are complete nonsense. We try to strike a balance between creating space for Declan’s personhood and helping him to cope with the more reasonable neurotypical social standards. Often this balance is tricky.

I let him hug every fire hydrant he passes. I celebrate the fact that Renee Young (who is a WWE broadcaster) is the one who taught him the back and forth of conversations.  Declan is quirky. He likes what he likes, and I’m trying to be okay with that.

But you better believe I threw those centerpieces in the trash before any guests arrived.

 

A-Word Awareness

 
 

I used to toss his name out like a boomerang with a silent prayer that it would come back to me. Sometimes it did. A lot of the time it didn’t.

I sat on our swing pretending to read while he toddled in the flowerbed. We never did plant anything there. I just wanted eye contact. Or a smile. I kept a tally in the corner of page 151. He heard me twice. Four times his name sailed by him, a baseball he didn’t know to catch. My stomach sank.

We had his hearing checked more than once. I started using words like “sensory integration” and “selective mutism” because they made me feel more comfortable. I crumpled the page of printed research my mother-in-law sent home. It’s in a landfill somewhere now. I snapped at my sister for using the a-word. She’s since forgiven me.

We took a vacation to Myrtle Beach when he was three, and we ate out a lot. I had no explanation for the baffled waitress when he began compulsively peeling the entire basket of restaurant crayons. His coloring page stayed blank. It was the first time I wished for the label “autism”—a term that might help the world forgive my quirky boy.

We have the label now but it doesn’t usually make much difference. That’s okay, though. The glances don’t bother me as much anymore.

My son is bent toward patterns and there is something kind of beautiful about that. He sees the parts of people I’m trained to overlook and he pockets them like treasures. He drinks in the world with a fierceness that compels him to spin. He frames life with a rigid order and yes, sometimes that’s hard, but it breeds a certain kind of honesty, too.

Autism isn’t the worst thing that’s ever happened to our family. I wish somebody had written that on a blue puzzle piece when I was quietly worrying over page 151. I wish I’d known that the fear tied up in the a-word isn’t a good representation of what autism really is.

He hears his name now more than he used to, but when he doesn’t I get to graze his still baby soft cheek with my finger. I’m thankful for that.

Wanted: One Poetic Kumquat Tree

 
kumquat 3.jpg

I once took a college poetry class that turned out to be exactly how you envision a college poetry class. A young-ish professor with ironically cool glasses and good hair toted in a vintage trunk full of lamps every Tuesday and Thursday, and under that soft hipster glow we learned to write poetry. Kind of.

In this class was a purposefully quiet boy who listened to Bob Dylan and wrote a poem about kumquat trees. He was quirky—but, like, the kind of quirky that is intentional and understated and undeniably cool.

The work I produced was not that kind of quirky. It was off-kilter but not in the “my grandmother’s kumquat tree” kind of way. The first poem I submitted for critique was about waiting for a train.

Two of my peers—one an edgy red-head and the other a sassy blonde boy—theorized that the poem was a euphemism for suicide. It was not, but I intentionally fed that theory because I knew nobody with a poetic tree. That anyone was crafting theories about my train poem felt like the only momentum I had and I wasn’t going to let its absurdity slow me down.

Kitschy lamps and suicide theories aside, I’m not sure if a semester-long workshop made a poet of me, but it did illuminate something important: I’m not a traditionally great writer. The proficiency I’ve gained in this field has come in spite of a distinctly not cool quirky voice. This class illuminated a second thing, too, though: I have never written because I wanted to be a good writer.

A number of things compelled me to sneak into my parents’ office at six years old and staple together my first book—none of them had to do with becoming a good writer. I wanted desperately to scratch out the world as I saw it. I wanted to voice the questions I couldn’t phrase. I wanted to be heard. I wanted to use my parents’ stapler.

This is largely why I still write, and as a result my portfolio is fairly eclectic. I write young adult fantasy, science fiction, and contemporary fiction. I write poetry (poorly), short stories, and essays for Christian publications about things like school choice and sports. And yet, these genres don’t feel like opposite ends of a spectrum to me—maybe because I have always explored the world through stories. I found truth via fiction and fiction via truth, and that’s the thread that ties my writing together still.

The strange synergy between truth and fiction is what will guide this blog, and I invite you to follow along. This will be a space for essays, short stories, creative non-fiction, and bad poetry.

My first series, which I’ll launch on Saturday, will focus on autism awareness. Though most of April’s entries will have to do with autism in some way, this won’t be an autism blog.

I can’t forecast precisely how this thing will turn out because I have no idea, but I hope it will be worthwhile. And I can say with firm certainty that if I ever find that poetic kumquat tree, I will write an inspired free verse poem.