A father speaks to his son for the first time through the world of Disney.

In honour of Autism Awareness Month Time magazine journalist Alexandra Sifferlin has put together a collection of in-depth, real life stories about the condition. The stories encapsulate what it’s like to be autistic as well as the heart wrenching agonies that a parent can endure through caring for an autistic child.

The first story is entitled Reaching My Autistic Son Through Disney where father Ron Suskind tells of his family’s desperate attempt to connect with their son Owen.

The story begins: “In our first year in Washington, our son disappeared. Just shy of his 3rd birthday, an engaged, chatty child, full of typical speech — “I love you,” “Where are my Ninja Turtles?” “Let’s get ice cream!” — fell silent. He cried, inconsolably. Didn’t sleep. Wouldn’t make eye contact. His only word was “juice.”

“I had just started a job as The Wall Street Journal’s national affairs reporter. My wife, Cornelia, a former journalist, was home with him — a new story every day, a new horror. He could barely use a sippy cup, though he’d long ago graduated to a big-boy cup. He wove about like someone walking with his eyes shut. “It doesn’t make sense,” I’d say at night. “You don’t grow backward.” Had he been injured somehow when he was out of our sight, banged his head, swallowed something poisonous? It was like searching for clues to a kidnapping.”

As the family struggles to make sense of what is happening to their child something remarkable happens at the birthday party of Owen’s brother Walter.

The story goes on…. “It’s Walt’s 9th birthday, September 1997, in our new house near Chevy Chase Circle. Owen is six and a half. After roughhousing with buddies in the backyard at the end of his party, Walt gets a little weepy. He’s already a tough, independent kid, often the case with siblings of disabled kids. But he can get a little sad on his birthdays. As Cornelia and I return to the kitchen, Owen walks in right behind us. He looks intently at us, one, then the other. “Walter doesn’t want to grow up,” he says evenly, “like Mowgli or Peter Pan.” We nod, dumbly, looking down at him. He nods back and then vanishes into some private reverie. It’s as if a thunderbolt just passed through the kitchen. A full sentence, and not just an “I want this” or “Give me that.” No, a complex sentence, the likes of which he’d not uttered in four years. Actually, ever. We don’t say anything at first and then don’t stop talking for the next four hours, peeling apart, layer by layer, what just happened. Beyond the language, it’s interpretive thinking that he’s not supposed to be able to do: that someone crying on his birthday may not want to grow up. Not only would such an insight be improbable for a typical 6-year-old; it was an elegant connection that Cornelia and I overlooked. It’s as if Owen had let us in, just for an instant, to glimpse a mysterious grid growing inside him, a matrix on which he affixed items he saw each day that we might not even notice. And then he carefully aligned it to another one, standing parallel: The world of Disney.”

For this family this momentous occasion proved to be the breakthrough that was to help Owen reconnect with his family. Little did they know that the world of Disney would provide the key to unlocking Owen’s world.

But the world of Disney also provided the vehicle for uncovering the heartbreaking reality of Owen’s true feelings. Owen had been drawing Disney characters in his sketchbook. But it wasn’t the heroes in the films that stole his heart but the sidekicks which feature in the films he loves.

“What is a sidekick?” Cornelia asks him. “A sidekick helps the hero fulfil his destiny,” he chirps. Rolls right off his tongue. A classical, elegant definition. “Do you feel like a sidekick, Owie?” Cornelia asks him softly. Their eyes are aligned, just the two of them now, looking into each other, until he suddenly breaks into “happy face.” “I am one!” he says. His voice is high and cheery, no sign of a quaver. “I am a sidekick.” The words come out flat, without affectation. But he compensates, giving them expression by nodding after every two syllables.

“And no . . . sidekick . . . gets left . . . behind.”

“There’s no doubt, now, that he sees what we see: that kids of all kinds, including his classmates at Lab School, are moving on, while he’s left behind. The sidekicks have emerged, sketch by sketch, in the difficult months since his ejection from Lab. His response has been to embrace it, the pain of it, and be a protector of the discarded. He starts giving sidekick identities to his classmates at Ivymount, so many of whom are heavily burdened — some with physical infirmities, and plenty of autistic kids with little speech. But they have qualities that he’s identifying — this one was loyal, that one gentle, another one silly in some lighthearted way that makes him laugh……..

The story goes on to reveal how autism affects the rest of Owen’s life as he grows from a child into an adult.

The article is adapted from “Life, Animated” by Ron Suskind, published by Kingswell, an imprint of Disney Book Group.

The second story which featured in Outside Magazine is called Catch Me If You Can and  is by Dean King. It tells of when Robert Wood Jr, a severely autistic young boy, disappeared in a densely forested Virginia park. The eight-year-old boy could not speak but to him this situation, which to others would more than likely prove to be pretty scary, was more than likely just a game.

The third story was published in The New York Times and is called “Navigating Love and Autism.” Two people on the autism spectrum reveal how they deal with relationships.

The final story in this collection is  “Autism’s First Child” and was featured in The Atlantic. John Donvan and Caren Zucker introduce us to Donald Gray Triplett, the first person to be diagnosed with autism.

You can read all four articles in full at http://time.com/49034/the-best-longreads-on-autism/

 

Rachel Harrison, Speech and Language Therapist.

Written on behalf of Integrated Treatment Services

April 2014