Living Out Loud: : Code Baby Snowsuit

Julia and autism

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Last Sunday I sat in a booth at LaRosa's, waiting for my mother and younger sister to join me. As I sipped my Cherry Coke, a loud and unmistakable noise filled the dining room, like a combination of a long burp and a porpoise calling to its mate. Other diners, unsettled by this interruption, looked up from their plates. I simply stood up and waited for my younger sister Julia to come into view. The noise was her latest habit, the "reverse burp."

My sister Julia is 15 years old, charming, talkative, and relentlessly odd. She has autism, a developmental disorder that affects communication, social skills, and sensory integration. Persons with this disorder differ greatly in their abilities, but they all possess a wide variety of ever-changing anxieties, pathological obsessions and bizarre physical habits, such as the reverse burp. Living with Julia, it's amazing what my mother and I have come to think of as normal over the years.

During the Record Obsession, for example, my sister would sit cross-legged on the living room floor in front of a Fisher Price record player with dozens of my mother's old 45s fanned around her. Julia preferred the records that skipped, and her favorite of these was a Jerry Lewis recording entitled "The Noisy Eater."

A visitor to our house might hear the phrase "fiddle-faddle-fiddle-faddle-foo," repeated 20 or 30 times before one of us realized that our guest probably wasn't used to this kind of thing and changed the record.

Anxiety in children with autism often seems to come out of nowhere. Julia's longest-standing phobia was of a spiky, soft rubber toy called a Koosh ball. Anything resembling a Koosh would terrify her, including pom-poms, toy hedgehogs and women with certain hairdos. Plastic squeeze bottles were another object of horror. At Skyline, my sister was so disturbed by the ketchup and mustard bottles at each table that she was unable to eat. I once tried to sympathize with her aversion by imagining how I would feel if a pair of shrunken heads were placed at the end of our table, just behind the sugar packets. After that, I made sure the server put away the squeeze bottles as soon as we sat down.

I often watch in disbelief as mothers of typical children snap at their kids for minor transgressions, such as calling their sibling a "butt face" or refusing to floss their teeth. I think to myself, "I'll bet they've never seen a kid throw an hour-long, floor-kicking, clothes-tearing tantrum because she doesn't have a tail."

Julia's fits are legendary and completely irrational. Of course, because children with autism have a perfectly normal physical appearance, onlookers instantly attribute their outrageous behavior to sheer bad parenting. You can imagine the glaring and eyebrow-raising my mother garnered from fellow Target shoppers when my sister, then age 11, stomped her feet, flailed her arms and roared because she couldn't fit into a baby snowsuit she was determined to wear. "Baby snowsuit" has since become family code to evacuate a public place before a fit starts to erupt.

In all of her histrionics, Julia never shows a sign of embarrassment. My mother and I have tried to show her how ridiculous she looks by mimicking the strange dance that begins all of her fits. We'll start with the Butt Bend, which involves stiffening one's legs and bending towards the floor, butt out, all the while clenching one's fists and grunting "ooooh." Then we move on to the Leap, where one dramatically jumps into the air with one foot, arms raised menacingly. This must be accompanied by an angry monologue memorized from a favorite children's film, such as the Wicked Witch of the West's "How about a little fire, Scarecrow? Ahh ha ha ha!" or Veruca Salt's "Give it to me nooooow!" number from Willy Wonka. My sister will grin as we imitate her, then knit her brow and say, "Stop it. Stop doing what I do."

Occasionally I worry that living with Julia has permanently warped my sense of what's normal. I've gotten to the point where I start to slip into a Butt Bend when a store doesn't have the shoes I want in my size. I'm afraid one day my co-workers will hear me chanting, "Poppies will make her sleep . . . sleeeep . . . yeeess," as I shut down my uncooperative computer. I don't know how I would justify such behavior. Maybe I could explain it as a result of growing up with a person whose experience of the world is wildly different from my own. Or maybe I could just say, "I don't feel like telling you," emit a nice loud reverse burp and leap away.

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