Jamie Smith plunked down in the passenger’s seat of his mother’s car and slipped on a pair of thick-framed sunglasses that gave him the look of a young Ray Charles.
“Ready, Jamie?” Alice Smith asked.
“Ready, Mom.”
They clasped hands over the gearshift. Jamie rattled off an awkward version of the Lord’s Prayer. Both said, “Amen,” and Alice hit the gas.
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.
But he won Alice over with one unquestionable quality: He loved Jamie.
The coach often had seen Jamie’s life transform from calm to chaos in a matter of moments. That’s why, at Soldier Field, Rob knew exactly what was coming.
“Get my mom,” Jamie said, his voice quivering. “I’m upset. I’m getting very upset!”
Jamie’s brain, like those of most people with autism, is slow to adjust to change. It takes time and repetition for him to understand that it’s OK when something isn’t the way he thinks it should be or the way it has always been.
“Jamie, it’s just that microphone, it’s making everything sound funny,” Rob said. “You’re doing fine. Just get up there and do it like you did in my office the other day.”
“All right, Rob,” Jamie said, looking anything but confident. “I’m gonna get up there and do it real good this time.”
Back and forth, the conversation repeated itself — Rob trying to comfort and cajole, Jamie answering that he would “do it real good this time.”
Rob didn’t doubt him. He couldn’t. Jamie needed him to believe.
Twenty minutes later, hundreds gathered in the stands. Jamie stood at the podium and launched into his speech. This time he didn’t stop.
“I … am … a … powerlifter…”
He wasn’t comfortable. He wasn’t smooth. But Rob had told him what to expect.
As he finished, the crowd’s wild applause thrilled him. He beamed, flashing two thumbs-up signs.
Jamie doesn’t have the build of a typical powerlifter. It’s a sport for the stocky — the shorter the arms and legs, the less distance to heave bar-bending weight. But Jamie has managed to get the most from his tall, muscular frame, grunting and roaring his way to dominance in local and state Special Olympics competitions.
With an encyclopedic knowledge of professional wrestlers — and a bedroom plastered with posters of muscle-bound pros like Stone Cold Steve Austin and The Game — the pursuit of bulging biceps seemed a natural fit. It’s also a solitary sport, one with strict rules and little variance. On the padded bench, there was only Jamie, the weights and a clearly defined, rhythmic task: lift up, lift down, rack.
In his first competition in 2003, Jamie benched 100 pounds. Legs spread wide, hips bent, he hoisted 170 pounds up to a standing position in the dead lift. He won two gold medals.
Within three years he moved up to more than 200 pounds on the bench press and more than 300 pounds on the dead lift.
“He has to do well in everything,” Rob said. “He’s such a perfectionist. He doesn’t accept second place. It’s hard to get him to accept that sometimes there are people out there that are better than you.”
Jamie kept only the gold medals. All silvers and bronzes went to his grandmother in Texas.
In June, he, Rob and a group of other Easter Seals athletes rode a bus down to Normal for the Illinois Special Olympics State Games. The event had no bearing on the World Games, but it was Jamie’s last formal competition before heading overseas in October.
The powerlifters gathered on a creaky stage in an Illinois State University lecture hall. Jamie was in a boisterous mood, pacing about and grinning, laughing about a movie he had watched in the dorm the previous night.
“‘Rocky III’ with Mr. T.,” he shouted. “Hah-hah! I watched that last night. That Mr. T, he got ’em real good.”
When his turn came, Jamie walked confidently to the bench and waited for the judges command to lift.
“Start!”
Jamie lowered the bar to his chest.
“Press!”
He forcefully exhaled and pushed the bar up.
“Rack!”
The three judges ruled Jamie’s form perfect and signaled so by illuminating three white lights. Jamie got off the bench and looked at the lights. Panic washed over his face.
Normally, those lights would be green. Green is for good, red is for bad. That was what Jamie had always known.
“Rob,” he said, “where are the green lights? What did I do wrong?”
“The white lights are good, Jamie,” Rob said, walking him to the rear of the stage. “You want three of them. That’s good.”
“But where are the green lights, Rob? The green lights are good. What did I do wrong?”
Rob looked worried. For 10 minutes he tried to explain. Maybe they ran out of green lights, he said. It’s OK. The white lights are good. You want the white lights.
But Jamie still looked panicked, confused.
On his next lift, he forgot to wait for the command to start. Three red lights.
He lifted a foot up during his third try, a form violation. Three red lights.
“This is the autism,” Rob said, shaking his head. “He’s flustered. He’s out of sync.”
As Jamie walked off the stage, he looked at his coach.
“Rob, it was kind of tough,” he said, voice cracking.
“Are you upset?” Rob asked.
“Probably so,” said Jamie. “I’m upset about it, too.”
That evening, Jamie was dancing with friends on the Illinois State football field, his smile wide, showing no signs of his earlier distress. But Rob was still concerned, faced with a stark reminder of his athlete’s fragility.
“I don’t know,” the coach said. “I sure hope they have green lights in China.”
COMING MONDAY: Jamie competes on a world stage, far from home.
– – –
Autism facts and quotes
Defining the characteristics of autism or postulating on a specific cause is akin to nailing Jell-o to the wall. It’s a nebulous communication disorder, one that can deny people the very emotions and cognitive abilities that make us human. Imagine a world that can seem devoid of love or empathy or abstract thought.
1,495,264
The estimated number of adults with autism in the U.S. by 2016
— Autism Society of America
‘It is a big, ‘Uh-oh.’ We know what the impact of this is going to be in the future. … There are a lot of people whose needs at this point we’re not able to address.’ — Lilia Teninty, director for the Illinois Department of Human Services Division of Developmental Disabilities, on the coming wave of adults with autism
1.5 in 10,000
Instances of childhood cancer
1 in 800
Instances of Down syndrome births
1 in 150
Instances of autistic births
— Centers for Disease Control and Prevention
‘If you’ve met one person with autism, you’ve met one person with autism.’
— Common saying, reflecting the wide spectrum of effects the disorder has on different people
$35,000
Amount of aid each student with autism receives from Illinois at Easter Seals Therapeutic Day School
$11,000
Amount each of the few admitted to the school’s adult vocational program receives from the state
— Easter Seals Therapeutic Day School
‘The parents who had to fight for equal education for their kids, they’re now the ones fighting to help the adults. And right now there’s no good strategy in place.’
— Stephen Edelson, head of the Autism Research Institute in San Diego
$3.2 million
The total cost of caring for one American with autism over the course of that person’s lifetime
— Michael Ganz, adjunct assistant professor, Harvard University
– – –
How we reported the series
To report this story, Tribune photographer Nancy Stone and Tribune reporter Rex W. Huppke followed Jamie Smith and his family over nine months at his home, his jobs and the car rides in between. They were with Jamie at Soldier Field in May, at the state Special Olympics games in Normal in June, at a training camp in Nashville in July, and at the World Games in Shanghai in October. Other reporting included interviews with Jamie’s teachers and counselors at Easter Seals, and interviews with more than a dozen autism experts nationwide.
———-
rhuppke@tribune.com
IN THE WEB EDITION: Join Tribune staff reporter Rex Huppke, photographer Nancy Stone, Jamie Smith’s mother, Alice, and Wendy Murphy, director of therapeutic schools for Easter Seals Metropolitan Chicago, in a live video Web chat about autistic adults at 12:30 p.m. Tuesday. You can submit questions now, then come back to watch at chicagotribune.com/autismchat
