Tuesday, May 27, 2008

An Adult with Autism The Story of Jamie

Autistic powerlifter's quest

For the coming wave of autistic adults, opportunities are scarce and resources are

As she turned off Roosevelt Road onto Damen Avenue, the West Side school where Jamie works grew smaller in the rearview mirror.

The logical route home would take about a half-hour, a straight shot south along bustling Ashland Avenue. But in his 24 years, Jamie rarely has followed logical routes. So the daily commute he chooses takes more than an hour, follows 18 different streets and twice crosses the Dan Ryan Expressway.

Alice followed Ashland for nearly 6 miles, then detoured west on 69th Street. The car dipped under a viaduct, the first of six along the route.

As they came out the other side of the bridgelike structure, Jamie quickly turned and looked back, staring for a moment, then looking forward again.

He turned back twice more before settling into his seat. He repeated the routine after each viaduct.

Alice had never understood why Jamie did this, or how he had come up with the circuitous route home. Autism is curious that way.

But four afternoons a week, she was a willing chauffeur. The ride relaxed Jamie, and that relaxed her.

On a June afternoon thick with humidity, Alice spoke over the whoosh of the air conditioner, asking Jamie about his day. His voice carried an innocence that clashed with his 6-foot-3, 180-pound frame.

"It was fine, Mama," he said.

"Fine" for Jamie is a day that unfolds like every other. As they drove west on 95th Street, he savored the sameness of the ride, ignoring thoughts of the changes that were coming, ones that would knock him from the well-worn grooves of his life.

In October, he was going to China. He would compete as a powerlifter at the Special Olympics World Games. His longtime coach, Rob DeSanto, had nominated him, writing essays about his accomplishments—the dozens of gold medals he had won, the two jobs he worked.

Friends repeatedly told him the trip to Shanghai would be the biggest moment of his life. He believed that.

But Jamie's quest would bombard his fragile senses and test his ability to navigate a world he couldn't predict. Fail or succeed, he would explore the potential of autistic adults at a time when the disorder looms large.

A decade from now, there will be an estimated 1.5 million adults with autism in the United States.

Jamie is a raindrop, a warning of the downpour soon to come.

At only 9 months, Jamie clumsily walked the hardwood floors of his family's South Side bungalow. He played with his 3-year-old brother, Cedric, cooing and cackling. He seemed, if anything, precocious.

By age 2, though, he had yet to speak a word, and Alice found him occasionally banging his head against the wall. She came to recognize his needs by the way he cried—a certain cry for hunger, another for sleepiness.

She figured speech would come, but the frustration in Jamie kept building.

"When he got upset, he'd just start banging his head," she said. "It was like he wanted to say something but he couldn't find the words, and he'd get mad at himself."

Jamie turned 3 and still couldn't speak. He acted out more, screaming angrily, and began to develop odd, compulsive behaviors. When the family sat in the living room, he would crawl along the floor and sniff each person's feet.

Doctors checked his hearing, tested for lead exposure, scrutinized blood samples.

"They couldn't find anything," Alice said.

Finally, at age 4, Jamie was referred to a psychiatrist who quickly reached a diagnosis.

"He told me my son has autism," Alice recalled. "And I'm like, 'What is autism?' I hadn't ever heard of that."

She asked: "Is he going to grow out of it? Is he going to get better?"

The doctor grimaced. He said Jamie's intellect would never exceed that of a 5-year-old.

"Something died inside me that day," Alice said. "I was only 28 years old. I had no idea what all this meant."

Autism still was a rare diagnosis in the 1980s, found in about one out of every 10,000 children. Few teachers or therapists knew how to handle the unique and unpredictable behavior that came with the disorder. Many autistic children are unable to express their needs or explain their often baffling frustrations because the disorder inhibits communication skills.

Jamie was a strong little boy, and when he lost control, flailing his arms, throwing clocks and lamps, Alice and her husband struggled to restrain him. It wasn't long before friends and relatives began suggesting he be institutionalized, a common fate at the time. "They'd say, 'You can't handle him.' Those four words. Sometimes I would be just about there," Alice said. "But there was always this innocence that was captivating. He'd come over, get up in my lap, and I knew in my heart and in my soul that that was the most comfortable place in the world for him. He just wanted to be right there. There was this sense of relaxation. He was at peace.

"That's why I couldn't do it. I couldn't take that away from him."

Alice joined one of the first waves of American parents who would slowly, often painfully, come to understand the complexities of autism.

Jamie's father focused on work and provided for Jamie financially. Alice's life became wholly consumed by her son.

She tried to mainstream him, sending him to the neighborhood preschool and kindergarten. But he wasn't learning anything, and the teachers couldn't handle his erratic behavior.

When he was 7, a new school opened on the West Side, one specifically for kids with autism. Alice swiftly enrolled Jamie, and for the first time her son was surrounded by people who could help unlock his mind.

Margaret Creedon founded the Easter Seals Therapeutic Day School, and when she met Jamie he was a skinny, kinetic boy, barely verbal, with a permanent scar from banging the back of his head against the bedroom wall. He had chewed his fingernails so far down they bled.

Still, she saw a capable person wrapped in an autistic cocoon. When happy, he had an ebullient personality, and he smiled ear-to-ear any time he accomplished the simplest of tasks.

"I always knew Jamie could climb the ladder," Creedon said. "You just had to show him how to get up each rung."

Jamie began speaking more and learning. Alice, now meeting other parents of autistic children, was learning too. Every child experiences autism differently, but she found solace in the common threads.

Most, like Jamie, struggled to make emotional connections. Hugs rarely seemed heartfelt. All the children had difficulty interpreting social cues and emotions, such as happiness, sarcasm or anger.

This put her son and his sometimes robotic behavior in perspective.

Not long after he arrived at Easter Seals, Jamie joined many of his fellow students competing in local Special Olympics events. Autism provided him boundless energy and a desire for rules and structure. Competition became a central part of his life, as did a need to win.

There were ups and downs, but Jamie continued to make progress, gaining responsibility and self-control. When he reached adulthood, Easter Seals counselors helped him get a job at a South Side produce store. After he graduated, they gave him a second job as an assistant in the school's adult vocational program.

Work is vital for many adults with autism, and scarce. Jamie didn't know it, but he was living a dream, working seven days a week and fulfilling the common autistic need to stay busy.

As he grew up, the incidence of autism diagnosis in America began to explode. Now, one out of every 150 newborns will have the disorder—for boys the figure is a staggering one out of 90. Researchers are struggling to understand the steep increase.

Alice saw progress made in early intervention, but that wasn't going to help her adult son. Life with Jamie remained difficult.

A minor change in routine, like arriving a few minutes late for work, could upend his world. In a tantrum last year, Jamie shattered the mirrored doors of a closet near his second-floor bedroom, partially tearing them from their hinges.

Still, Alice considered herself and Jamie lucky. Most adults with autism age out of the school system at a critical point in their lives, ready for further challenges and needing a new focus for their energy.

In the decades-long push to raise autism awareness, the focus has been primarily on children. Until recently, little thought was given to what will happen once these children grow up. Most end up stuck at home, spiraling deeper into isolation.

Eventually, their parents will die, leaving many to rely on relatives or the state.

With no clear plan, Alice wept at the thought of Jamie trying to live without her.

"We're not going to be here forever, but he's going to need someone to take care of him, always," she said. "It's my responsibility as a mother to make sure that happens."

She shook off fears of the distant future, focused on the present.

Jamie had his jobs and his competitions. He had a measure of independence.

And he would soon have a chance to travel halfway around the world.

Jamie weaved through the aisles of Pete's Produce, eyes scanning the shelves for anything that needed restocking—pasta, soup, spices. He grabbed a broom and swept the tile floor just past the registers, then began methodically mopping the aisles in the produce section.

For seven years, he had worked three days a week at the store on West 87th Street. His manager never tired of watching him, calling him "the greatest stock boy ever."

"He's amazing," Manuel Alvarez said as Jamie zipped past, a tall, apron-clad blur. "If I could have a whole crew of Jamies, I'd be in business."

It's here at work that autism allows Jamie to shine. He craves movement, familiar actions and a sense of purpose. Without them, he becomes anxious and agitated. So aside from a mandatory lunch break, he works briskly and ceaselessly.

Throughout one regular Friday shift, Jamie obsessively monitored the drink coolers in front of each register line, making sure they were fully stocked and in perfect order. He never stopped to examine them. Instead, he glanced in passing, instantly assessing whether any drinks were missing.

As he carried six heads of lettuce to the produce section, he once again eyed the drinks. Jamie dropped the lettuce heads gently in their bin and then returned to the coolers. He deftly replaced a single bottle of Tropicana peach-papaya juice before moving, thoroughly satisfied, to the next chore.

Jamie supplements his state disability checks with money he earns at his two jobs, but order and predictability are the true currencies of his life. Without them, his senses get overwhelmed and the world fragments into kaleidoscopic swirls of baffling information.

So he's at the produce store Friday through Sunday. Every Monday through Thursday, with metronomic rhythm, he works as a teacher's assistant at Easter Seals' vocational program, organizing projects for other autistic adults.

On Thursdays at 11:45 a.m. he hustles up the stairs and out the door to a nearby cafeteria. He grabs one slice of cheese pizza in a triangular box and a pack of chocolate Pop Tarts.

The register reads $3.90, just as it does every Thursday. That seems to make him happy.

At 12:30 p.m. sharp he's back at his work table. An hour and a half later he'll race to his mother's car in the parking lot, ready for the mazelike ride home.

On a hot morning in May, Jamie paced the firm, green turf of Soldier Field, preparing to speak at the opening ceremonies of the Chicago Special Olympics games. For days he had practiced scripted lines with his coach and family, over and over until he had them memorized.

Before the crowds arrived, he walked confidently to the podium to rehearse.

"Hi, my name is Jamie."

His voice boomed through the stadium's public-address system and ricocheted off the cavernous concrete stands. He froze—the echo had tripped him up.

He started again, tentatively, spoke one word—"Hi"—and stopped.

His eyes grew wide, frightened. His confident grin vanished. He turned in a huff from the podium and shouted: "I got messed up. That microphone is not good. It's not good!"

His coach, Rob DeSanto, rushed to his side to comfort him.

Rob, a jolly bear of a man, had coached him in Special Olympics events across Illinois for nearly a decade, watching him develop from a lanky kid who ran track to a sturdy, gold medal-winning powerlifter. In competitions, Rob's emotions rose and fell with Jamie's, and he routinely was in the ear of any judge who questioned his athlete's form.

The two met in the late 1990s at the Easter Seals school. Jamie was a student and Rob had just become a teacher, following a dream to work with kids with disabilities that dated back to his own childhood, when he struggled with epileptic seizures.

Rob immediately recognized Jamie's competitive drive. He became Jamie's coach and, sharing an almost childlike sense of humor, his friend.

Jamie's mom—protective as a bulldog—wasn't sure what to think about Rob at first. Here was a white man from the suburbs, almost a caricature of your typical Chicago guy: heavyset, quick with a wisecrack, passionate about his Chicago Bears, right down to the team watch wrapped tight around his wrist.

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