Tuesday, May 27, 2008

An Adult with Autism The Story of Jamie Part 4

A few days later, Alice was at home preparing for the flight she and Rob would take to China. The phone rang. It was someone from Easter Seals.

Rob was dead.

Alice heard the words, but couldn't believe them. Her heart felt like it might pound out of her chest.

Doctors suspect Rob's death was related to his epilepsy, though they are still not sure of an exact cause. He was 36 years old.

Numb and grieving, Alice left the next day for Shanghai alone, convinced news of the coach's death had to be kept from her son. She feared it would be too much for him to handle. She wouldn't let it destroy everything Rob had helped Jamie achieve.

Jamie found himself in the heart of a neon-draped city of 18 million. Aging high-rise apartments spread across the landscape like tobacco-stained teeth, laundry covering every window in patchwork colors. Rivers of cars, taxis and rickety trucks droned incessantly and filled the tropically humid summer air with an almost sooty exhaust.

This was a city born to overwhelm the senses.

Jamie had spent several days living with a Chinese host family. They made dumplings together around the kitchen table. The mother and father tried to teach Jamie origami, but he grew frustrated and slumped down alone on the family's sofa, asking if he could just watch TV.

At opening ceremonies, he marched through Shanghai Stadium to the cheers of more than 70,000 spectators and watched sparks from a brilliant array of thunderous fireworks fall from the sky.

Through it all, Jamie seemed remarkably unfazed, as if defying autism. Maybe the weeks of mental preparation worked. Maybe a survival instinct, triggered by a world of rampant changes, kept his emotions in check. Or perhaps it was just another unexpected quirk of his mysterious disorder.

On Oct. 3, five days before his competition, he sat on a weight bench, working out in a narrow, steamy gym. A few spots down was a group of Syrian powerlifters, and past them a cluster of athletes from the Philippines.

He calmly followed his coach's commands. After one lift he looked up at Mitch.

"I did real good, right?" Jamie asked, nodding his head yes, not waiting for an answer. "I got it real good that time."

He flexed his muscles and pounded his chest.

"I'm monstered up!"

When he got off the team bus at the hotel, Alice stood waiting. After a hug she stepped back and eyeballed her son top to bottom.

"Baby you've lost weight," she exclaimed with motherly concern. "Have you been eating enough?"

"Yeah, Mom. I'm eating good," Jamie said.

She lifted his Team USA shirt and examined his belly.

"I don't think he's getting enough food," she said, shaking her head.

They chatted in the hotel lobby. Alice wanted to know every detail of the trip. But after about 10 minutes, Jamie grew distracted.

"I better go up to my room now, Mom," he said, heading off to the elevator without even a kiss goodbye.

Alice smiled.

"He's treating me like he does at home," she said, shrugging her shoulders. "So at least I know he's comfortable."

Amid all the distractions, Jamie never asked why Rob wasn't there.

In fact, he didn't notice Rob's absence until about five minutes before he was supposed to compete.

Jamie was with his mother near the front of Zaibei Gymnasium. Hundreds of Chinese schoolchildren, all dressed in white, sat in the stands rattling toy clappers that filled the room with the sound of plastic thunder. A stage rose up from the gym floor, backed by a curtain that carried a broad banner announcing the theme of the 2007 Special Olympics: "I know I can."

Racks of circular weights sat center stage, bathed in light. The recorded boom of an up-tempo symphony pulsed through the room.

Jamie looked at Alice, confused.

"So Rob's not going to be here, then?" Jamie asked.

"No, dear. Rob got sick and he wasn't able to make the flight."

"OK. So Rob's not going to be here then, right, Mama?"

"That's right, baby. But listen."

Alice pulled Jamie close. She put her hand on his chin and made sure his eyes were looking into hers.

"Rob's right here, Jamie," she said, pounding the flat of her hand on his chest. "He's in your heart."

Jamie nodded.

"You can do this," Alice said. "You can do this. You can do it."

"I know," Jamie said, unconvincingly. "I can do it. I believe it."

He tried to shake his mom's hand. She pushed it away and grabbed him, squeezing him tight.

The Team USA powerlifters were a boisterous group, nearly two dozen men and women of such disparate heights, body shapes, abilities and disabilities that no two seemed remotely alike. But they were unified, and loud:

"C'mon Jamie! Let's go!"

Jamie walked onto the stage, sank his hands into a bowl of talcum powder then clapped them together. He seemed to like the dramatic effect of the thick puff of white dust.

He was competing against five other men in his weight class.

His first attempt was light, 140 pounds, but it was critical.

Just days before the competition, Mitch had unwittingly put more weight on the bar than Jamie could handle. When he wasn't able to lift it, Jamie became flustered.

He talked about it for a day or so, asking Mitch, "You're not going to put too much on the bar, right? I'm going to be able to lift it next time, right?"

During his first lift at the Illinois State Games in June, Jamie had lost his composure when the judges' lights turned out to be white instead of the familiar green. It ruined the rest of his performance. If he failed this first lift, a similar meltdown could follow.

Jamie approached the rack, fixed his shoulders under the bar and assumed the starting position. On command, he bent his knees and began to squat, head up, eyes focused forward. He flexed his legs at the next command, driving himself to an upright position, then dropped the bar back onto the rack with a clang.

The three judges illuminated two white lights and one red. Two out of three meant a good lift.

Jamie's hands shot up in the air. This time he had been coached to understand that there would be no green lights, that white meant good.

He knew he had done it.

His second squat was flawless, so was the third.

Each time Jamie came to the stage, his confidence seemed higher. He steamrolled through three sets of bench press, pumping his fist harder after each good lift.

The crowd loved him. After each round he turned to them, put his hands flat together in front of his chest and bowed like a warrior.

The final competition was the dead lift. The bar rested on the ground—260 pounds awaited.

Standing upright, Jamie spread his feet wide. He squatted down, back at a 45-degree angle to the floor, butt thrust out, long fingers wrapped tight around the shiny silver bar.

His eyes moved past the crowd in front of him and on to a green Special Olympics logo on the wall at the front of the gym.

A judge said, "Lift!"

Jamie's mouth opened in a near-perfect circle as he slowly pulled the bar up. He scowled like one of the pro wrestlers he idolized.

As his hips straightened and the bar moved past his knees, he released a guttural RAHHHHHHH!

The form was perfect. No mistakes. All white lights.

Mitch let out a whoop. Jamie had just become one of the best in the world.

He medaled in each lift—bronze in the squat, bronze in the dead lift, silver in the bench press—and won silver for the overall competition.

Alice, in the stands, smiled tearfully. Mitch, on the floor, could barely believe it.

"He was more focused than I've ever seen him," the coach said, breathlessly. "All these people and all these distractions. I just told him, 'Focus. It's just you and the weight.' I'm so damn proud of him."

It was just after 4 a.m. in Chicago. The teachers and therapists who had taught Jamie to get up every day and navigate an often frightening world didn't yet know of his success. Neither did Rob's family, who had buried the coach in his hometown of Chicago Heights days earlier. The news would reach them soon enough.

On the stage in Zaibei Gymnasium, Jamie stood tall and soaked in the attention. He bent his knees and bowed his head, as another prize was gently lowered around his neck.

In all his years of competition, bronze and silver had never been good enough for Jamie. He had always shipped those medals to his grandmother in Texas.

But not this time. These he would keep for himself.

Jamie returned from China on a Friday night and wanted to go to work at Pete's Produce first thing Saturday morning. Alice said no, he needed to rest.

She also knew she had to tell him the truth about Rob.

They sat on Jamie's narrow bed, flanked by clusters of gold medals hanging on the wall—23 to the right, 22 to the left, another batch of 24 stuffed in the closet. Rob had played a role in Jamie getting most of those awards. They paved his way to victory in Shanghai.

Alice took Jamie's hand and slowly explained what happened to his coach.

Rob's dead, Mama? he asked, over and over again.

Yes, baby, she said. He's gone. But I just know he's so proud of you.

After about 10 minutes Jamie said he needed to watch TV. Alice knew that was her cue to leave.

The next morning they drove to a drugstore and Jamie brought up Rob again. This time he cried. It was the first time she had ever seen him cry for anybody other than himself.

All weekend Jamie said over and over that he couldn't believe Rob was dead, as if repeating it would force the idea into the tight structure of his life.

On Monday, Oct. 15, Jamie returned to work at Easter Seals. He strutted, shoulders thrust back, his four World Games' medals fanned across his chest. He soaked up the pats on the back, the handshakes from those who stopped to admire his bronze and silver awards.

"You the man, Jamie," said one teacher, passing by.

"Yep," Jamie said, nodding his head, "I'm the man too."

At 9:55 a.m., the young autistic adults in the vocational program began to file into the basement room and take their seats at folding tables, signaling the beginning of the work day. Jamie watched his friends for a moment then turned on his heels and walked to his black backpack hanging on the wall.

He bent his head down, lifted off the four medals and stuffed them into the backpack.

He went to his table and looked down at the array of red bins, at the screws and washers and small plastic parts. A moment passed. Then he spoke, to no one in particular.

"I better get back to work."

An Adult with Autism The Story of Jamie Part 3

One Friday in August, Jamie took a rare day off from Pete's Produce—he went to a friend's birthday party. The following Monday, Alice took him, as always, to the produce store to pick up his paycheck.

The check amount was smaller than normal because of the day off.

Mama, my paycheck's wrong, Jamie said.

No, baby, you took Friday off. Remember?

No, Mama. This isn't right. Why is my paycheck wrong?

As they drove north toward Easter Seals, Jamie's frustration built. Alice tensed up. She knew what was coming.

Jamie hurled a roll of mints against the windshield, sending them pinging off the windows. He lifted one of his legs up and brought his foot down with a violent thump on the dashboard, his screeching drowning out the soft soul music on the radio. He smacked himself violently in the face and chest.

Though she had been through it many times before, Alice was terrified. She didn't want to pull over. She wanted to get him to the school as fast as possible, and she called ahead to tell counselors there what was happening.

When she pulled into the parking lot, two of the teachers, who had known Jamie since he was a kid, were waiting. He was still bellowing as they led him into the school.

For half an hour he paced the second-floor halls, not speaking to anyone. Finally, Melanie Gomez sat him down, talked gently about what had happened, then firmly told him his behavior was unacceptable.

If he behaved like that, he couldn't work. If he behaved like that, he wouldn't go to China.

For weeks, Melanie and other teachers and counselors at the school tried to prepare Jamie psychologically for his trip.

Melanie, who was Jamie's boss in the adult vocational center, made up a calendar outlining precise details of the journey—where he would be each day, what time his flights would take off and land, how many hours he would need to set his watch ahead. She knew a schedule and an understanding of what was to come was the best going-away gift she could give him.

Though Rob wasn't chosen as a World Games coach, he was going as a spectator. He had his bags packed days before leaving. He wondered aloud what the experience would be like, and played out different scenarios in his head, all involving Jamie winning the gold.

"He deserves this," Rob said. "He's worked hard, and this is going to be his moment. I just know it."

On Sept. 25, Jamie said goodbye to Alice and Rob, joining the team at a hotel near O'Hare International Airport. The next morning, he boarded a commercial flight clad in a navy blue Team USA T-shirt and sweat pants. He and 10 other Illinois athletes were bound for Los Angeles, where they would meet up with athletes from across the country, then board a chartered flight to Shanghai.

The Special Olympics staff and coaches understood what a test this was for Jamie. They kept a close eye on him on the flight to California, answering his rapid-fire questions and doing their best to keep him distracted. On the second leg of the journey to China he was either in his seat, transfixed by an in-flight movie, or doing fast-paced laps around the cabin.

In a sure sign he was nervous, Jamie asked every person he saw: So everything's OK with you, then?

He asked some of the athletes the same question half a dozen times. They began complaining to Mitch, but he told them to let it go. That was just Jamie being Jamie. Besides, the movie player on the plane had broken, and all Jamie had left to do was walk around. There would be plenty more questions to come.

As the flight touched down at Pudong International Airport in Shanghai, Mitch exhaled, relieved. Jamie had made it this far, more than 14 hours in the air. Mitch figured that was half the battle.

An Adult with Autism The Story of Jamie Part 2

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.


Jamie lowered the bar to his chest.


He forcefully exhaled and pushed the bar up.


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."

"How you feel, dude?" Alice said, looking over at her son.

"All right," Jamie said flatly.

Alice would have given anything for more than that, for some assurance that Jamie knew what he was in for, but nothing came. He just stared blankly out the car window at thick traffic on Cicero Avenue.

It was a balmy July morning and Jamie soon would be on a plane to a World Games training camp, the first major step on his journey to China. But his mother couldn't stop thinking about the last time he flew.

That was in 1998, during a sightseeing flight over Niagara Falls with his classmates from the Easter Seals school. Halfway through the round trip he started to panic, and teachers had to talk him down, nursing him through the rest of the flight.

With that in mind, Alice rattled off a list of reminders for his training camp trip: Listen to your coaches. If anything hurts, tell someone. Enjoy yourself.

Jamie nodded and followed each piece of advice with a soft, "OK, Mama."

But he never shifted his gaze. He was detached, softly humming a high-pitched, ever-changing tune that slips out whenever he's anxious.

In the terminal at Midway Airport they joined a cluster of Special Olympics coaches and other Illinois athletes. Alice quickly found Brianna Beers, a coach who agreed to sit with Jamie on the flight. She pulled Beers aside. Jamie had never been away from both his mother and his Easter Seals family.

"I know this is what you do," Alice said, polite but stern. "But please take care of my baby. Please understand, this is my baby, my life."

For 24 years, Alice has been there to decipher the world for Jamie, and shield him from its rough edges. She lifted him up when people stared at him like he was from another planet. She protected him from the local toughs who tried to prey on him. She stopped store clerks who tried to shortchange him.

"I'm two people when I'm with Jamie," Alice said. "I'm feeling for him and I'm feeling for me. I have to be him in a way, to feel the parts that he's missing."

But this time she had to let go.

She yearned for an embrace and some tears. Jamie gave her a stiff hug, his arms barely touching her. She knew that was the most emotion he could muster.

He said, "I love you, Mama."

And he was off.

Alice walked slowly out of the terminal, sweating and furrowing her brow, wiping away tears all the way back to the car.

As the plane pulled away from the gate, Jamie gripped Brianna's hand. The window shades were all closed tight. His eyes were wide and he asked rapid-fire questions: So everything's OK, right, Brianna? We're taking off now, already? Everything's OK with you then, right?

As the plane leveled, his grip loosened. Ninety minutes later, he felt brave enough to peer out the window at the patchwork fields of Tennessee. He hit the ground happy.

On the first night of training camp, Jamie strutted into a ballroom on the Vanderbilt University campus with a grin that tried to break through the sides of his face.

"I'm havin' a good time in Nashville," he said, looking out at a parquet dance floor full of Special Olympics athletes bouncing to a disc jockey's beats. "I can't wait to tell everyone about this. This is really fun, to me."

He began to weave through the crowds, stopping to introduce himself and shake hands.

"Hi, my name is Jamie. What's your name?"

He sped happily from person to person, working the room like a salesman, posing for pictures, then hurrying on to the next stranger. For him, it had become a game.

In a room thick with people, Jamie remained very much alone.

Rob sat in his cramped office at Easter Seals and shook his head.

"I don't think Jamie grasps the gravity that he's competing against the world," he said. "We're going to start from scratch right now, make sure the technique is flawless."

Only two months remained before the World Games. Jamie's time at the Special Olympics training camp showed he could handle traveling, that he could manage in an unfamiliar environment. But his form was nowhere near good enough for the level of competition he would soon face.

He was a long way from winning a medal in China.

In Nashville he had met his Team USA coach for the Shanghai games, Mitch Guthrie. After the training camp, Mitch contacted Rob and told him Jamie needed more training.

Rob had brought Jamie this far, but with time waning, they needed help.

One Easter Seals teacher, an avid weight lifter, began taking Jamie to a nearby gym on Mondays. Another teacher's husband, once a competitive powerlifter, trained Jamie at their northwest Indiana home every Thursday.

Carefully building the new training regimen into Jamie's routine, they drilled him over and over again, making sure his form was exact and he followed commands without fault.

Jamie seemed fired up by the extra training. He began working out more on his weight bench at home, eyes fixed on the ceiling, neck veins bulging. He lowered his sweaty frame to the carpet, back down, legs bent, pumping out stomach crunches with the cadence of a drill sergeant. One, ah-huh, two, ah-huh, three, ah-huh . . .

At home and in public, he constantly sought out his reflection, flexing his biceps in any mirror or window he could find.

His confidence grew, but his autism stayed the same, and at times that made the coming journey seem precarious.

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.

Mom says teacher let classmates vote autistic son out of class

PORT ST. LUCIE - Melissa Barton said she is considering legal action after her son's kindergarten teacher led his classmates to vote him out of class.

After each classmate was allowed to say what they didn't like about Barton's 5-year-old son, Alex, his Morningside Elementary teacher Wendy Portillo said they were going to take a vote, Barton said.

By a 14 to 2 margin, the students voted Alex -- who is in the process of being diagnosed with autism -- out of the class.

Melissa Barton filed a complaint with Morningside's school resource officer, who investigated the matter, Port St. Lucie Department spokeswoman Michelle Steele said. But the state attorney's office concluded the matter did not meet the criteria for emotional child abuse, so no criminal charges will be filed, Steele said.

Port St. Lucie Police no longer are investigating, but police officials are documenting the complaint, she said.

Steele said the teacher confirmed the incident took place.

Portillo could not be reached for comment Friday.

Steele said the boy had been sent to the principal's office because of disciplinary issues. When he returned, Portillo made him go to the front of the room as a form of punishment, she said.

Barton said her son is in the process of being diagnosed with Asperger's syndrome, a type of high-functioning autism. Alex began the testing process in February at the suggestion of Morningside Principal Marcia Cully.

Children diagnosed with Asperger's often exhibit social isolation and eccentric behavior..

Alex has had disciplinary issues because of his disability, Barton said. After the family moved into the area and Alex and his sibling arrived at the school in January, Alex spent much of the time in the principal's office, she said.

He also had problems at his last school, but he did not have issues during his two years of preschool, Barton said.

School and district officials have met with Barton and her son to create an individual education plan to address his difficulties, she said. Portillo attended these meetings, Barton said.

Barton said after the vote, Portillo asked Alex how he felt.

"He said, 'I feel sad,' " Barton said.

Alex left the classroom and spent the rest of the day in the nurse's office, she said.

Barton said when she came to pick up her son at the school Wednesday, he was leaving the nurse's office.

"He was shaken up," she said.

Barton said the nurse told her to talk with Portillo, who told her what happened.

Alex hasn't been back to school since then, and Barton said he won't be returning. He starts screaming when she brings him with her to drop off his sibling at school.

Thursday night, his mother heard him saying "I'm not special" over and over.

Barton said Alex is reliving the incident.

The other students said he was "disgusting" and "annoying," Barton said.

"He was incredibly upset," Barton said. "The only friend he has ever made in his life was forced to do this."

St. Lucie School's spokeswoman Janice Karst said the district is investigating the incident, but could not make any further comment.

Vern Melvin, Department of Children and Families circuit administrator, confirmed the agency is investigating an allegation of abuse at Morningside but said he could not elaborate.

An autism mom

Son’s special need creates a bond tested by challenge, forged in love

Lisa Simone knew her son was different, but she didn’t know why. Jonathan didn’t talk. Jonathan didn’t follow directions. He didn’t recognize names. And worse: Jonathan hurt other kids for no apparent reason. He hit them and kicked them and butted them with his head.

If she left Jonathan alone in his room, he would rip up books, tear the sheets off his bed and toss everything out of the dresser.

She tried techniques other parents try: time-out, consequences, even an occasional spanking. Nothing worked.

What was she doing wrong?

His behavior had turned so horrid by the time he was 18 months old, Lisa hated taking him anywhere.

And worse: She wondered why she ever became a mother.

Motherhood, Lisa discovered, sometimes bears little resemblance to the pictures on Hallmark cards. She had imagined happy days filled with birthday parties, play dates and family game nights, trips to the park and vacations to Walt Disney World and to “Sesame Street Live.”

She had quit her job as a paralegal to devote herself to her new baby. She enrolled him in gymnastics, playgroups, swimming lessons and music classes. She bought passes to Carowinds, Discovery Place and the Nature Museum.

But Jonathan was a fussy baby who grew into an uncontrollable little boy, and she worried that one day he might end up in jail.

“I was not doing anything different than what other mothers were doing,” she said, “but he responded differently from the way their children responded.”

Lisa blamed herself. What was wrong? When other mothers in their playgroup became pregnant again, Lisa’s despair grew. They were ready for more children, and Lisa still couldn’t control her first child.

She confided in her friend Arlene Crandall after a baby shower one night, talking with her in the street for over an hour, rehashing everything, trying to figure out what she was doing wrong.

Every day with Jonathan was a battle.

Every day Lisa asked herself why she became a mother.

Every day she wondered if she could make it through another.

Arlene sensed Lisa’s despair and, though friends warned her not to interfere, she told Lisa about a place in Charlotte, N. C., called the Carlton Watkins Center, where children with developmental delays are evaluated.

It would take five years before a final diagnosis, but that evaluation was the start of Lisa’s journey away from hopelessness.

“I’m always telling people now to get it checked out,” Lisa said. “The best thing they can tell you is that it’s nothing. If it is something, you can start working on it.”

For Jonathan, it’s autism.

In August 2006, after six years of therapy and hard work, 9-year-old Jonathan Simone stood behind a lectern, facing about 100 people at a luncheon for the Autism Speaks advocacy group, and he read a speech he wrote about himself:

“When I was 8 years old I discovered that I have autism. I was pretty afraid because autism makes people’s lives hard. Mom told me that my autism makes me smart and then I wasn’t afraid anymore.”

Jonathan listed some advantages he has because of his autism, which is a neurological disorder that affects social interaction. First is his great vocabulary. “I know words that other kids my age don’t understand. This can be a problem too, because one time in second grade one of my fellow students said, ‘Happy Morning.’ I didn’t like mornings because I got woken up so early, so I said, ‘The mother of all oxymorons.’

“Nobody understood me. Everyone thought I was calling everyone a moron. My teacher said I was in trouble because I called everyone a moron, but everyone was wrong. Later I explained what happened and then I wasn’t in trouble.”

Jonathan said he’s also a good thinker, and is good at math, computers and reading. He has a great memory, and is good at telling jokes.

“And now for my difficulties: Mom says when I was little, I couldn’t talk, and I used to hurt the kids I was around. (One difficulty can lead to another.) I used to ignore people who were talking to me. Then I started going to therapy.”

Lisa and her husband, Vinny, spent many tens of thousands of dollars on therapy. They enrolled Jonathan in a special-needs preschool, and Lisa worked with him at home, grueling hours filled with his tantrums and her tears. She searched the Internet and read books, and contacted different agencies.

Over time, Jonathan’s symptoms improved.

“Now I go to a regular school, but I still have challenges,” he said in his speech. “Sometimes I still have trouble following directions. When my schedule at school changes and nobody warns me, I get mad and I begin to shout and then I get in trouble. I prefer the usual schedule.”

Before Jonathan finished his speech, Lisa was weeping, this time tears of joy.

“Every time he accomplishes something that we had no idea he would be able to accomplish, I feel very fortunate,” she said. “He is so insightful and observant, he surprises me a lot.”

Her friend Arlene describes Lisa as “the most remarkable person. She just keeps on trucking no matter how bad it gets.”

Or how much it costs, said Vinny. “If we have to give up vacation to pay for therapy, so be it. If she wasn’t like that, Jonathan wouldn’t be where he is today.”

Today, Jonathan is in fourth grade at Davidson Day School. He is doing so well that Lisa, who is 39, has time again for herself.

After all her struggles with Jonathan, you might think she would take a break. Instead, she took a job last year as a teacher’s assistant in a special- needs classroom at a public school, and is using the knowledge she gained from raising her son to help other children.

“I was so lucky to have wonderful teachers in his life that I enjoy being a part of these kids’ lives,” she said. “Sometimes people see their deficiencies, but they have gifts that will just blow you away.”

Like Jonathan’s creativity. His humor. His hugs and kisses. “I wouldn’t change him,” Lisa said. “I would

make things easier for him and some things easier for us, but that’s all.”

Some days being Jonathan’s mother can still be tough.

But the tough days no longer come at Lisa one after the other. She’s able to put her challenges into perspective. Jonathan is an easy child compared to the child he once was. Lisa’s biggest challenge is forcing him into social situations.

“We are in a good, good place, which is not to say that I never feel despair,” she said. “But I can’t say it’s different from what any other parent feels. I’m sure all parents have concerns.”

For some mothers, it may be drugs. For others, attention deficit disorder.

For Lisa, it happens to be autism. “I am such a better mother because of it,” she

said. “Oh my God, I’m such a better person. People will tell me that I have so much patience and my husband, who knew me pre-Jonathan, looks at me and laughs and says, ‘You?’

“Even though we don’t do the stuff I wanted to do together — like board games and hockey games or going to the movies — he’s my constant companion. If he has to hang out with anybody, it would be me. He’s like my little best friend.”

Asked to talk about his mother, Jonathan, who is now 10, said in his formal, almost professorial way of speaking:

“She’s a good mom. “She’s after my health. “She gets my flu shots. “She makes sure I eat healthy and she brings

me to school every morning. “She works hard, but she doesn’t help me on

my homework.”

Then he admitted: “Sometimes your child can

be hard to handle. One time when I was 3, I was angry and I peed on her on purpose.”

He switched topics abruptly, the way he sometimes does, and talked about his dogs, Tobi and Oreo, before announcing: “It’s a strange world we live in. They can put a man on the moon, but they can’t put a decent taste in medicine.”

Jonathan stood up. He had nothing more he wanted to say. He was finished talking, ready to do something else. He wrapped his arms around Lisa, and she kissed him on the forehead.

JMac delivers hope for overcoming autism

Basketball feat provides basis for helping others to cope with condition

Four hundred people went to the Buffalo Niagara Convention Center on Thursday to hear Jason McElwain, the Rochester-area man who has become a symbol for what some people with autism can accomplish.

Some of them, like Sandra Czajka, 54, came with their own dreams.

Czajka, who works at an agency dealing with disabled adults, looked at McElwain and saw what she wants her grandson Blake to be.

“If I ever see my grandson standing here looking like this, talking like this, one day I’ll be like, ‘My prayers were answered,’ ” Czajka said.

Blake, 7, has autism and is partly blind.

“We talk to my grandson, and we don’t know if he understands you or not because he ignores you,” she said. “But then if I specifically say, ‘What color is [the podium]?’ he’ll say, ‘brown.’ ”

As manager of the Greece Athena High School basketball team, McElwain, known as JMac, became something of a national sensation when he scored 20 points in four minutes — including six three-point shots — at the end of the last home game in 2006. He has been speaking publicly about it ever since.

“[Autism] made me want to be like the other boys,“ the 19-year-old told the audience at the Developmental Disabilities Day program in the convention center. “When I played sports, I was.”

McElwain’s feat got him onto “Oprah,” “The Today” show and others. He also had a book published, “The Game of My Life: A True Story of Challenge.” Columbia Pictures is working on a movie inspired by his life, which will be made within two years and will be produced by former basketball player Magic Johnson, according to David McElwain, Jason’s father.

Jason McElwain said he hopes more people are gaining a greater awareness of autism and people with disabilities.

Sue Mervine, director of family support services for the Learning Disability Association of Western New York, said she was thrilled to hear that Mc- Elwain would be speaking at the conference, which she attends each year.

“As a mom, I get tears in my eyes,” Mervine said, referring to how articulate McElwain is. “If I could put him on a higher pedestal, I would.”

McElwain now coaches the East Coach Fusion, an Amateur Athletic Union basketball team based in Rochester for players 13 to 17 years old. He recently took the test to receive his general equivalency diploma. He says the possibility of college is “up in the air.”

He also currently works at a Wegmans bakery in Rochester.

Thinking of her grandson who has autism, Czajka said, “You come from a child who has so many problems and you look at this young man, and he’s such an inspiration.”

McElwain signed his book for her grandson and wrote him a message he learned from Magic Johnson: “Never give up.”

Our son's hidden world: Living with a child with autism

There are more than half a million people in the UK with autism. No one knows what causes it and there is no universally effective treatment.

But what is certain is that living with an autistic child is a daunting challenge. In a new book, CHRISTOPHER STEVENS writes poignantly about life with his autistic son. It's a moving account of the boy's struggle to cope with a world that confuses him - and the extraordinary leap forward that gave them all hope...

The first time we dared face the idea there might be something wrong with David, he was 16 months old.

The community nurse gave him the once-over, weighing him, prodding him and listening to his lungs. She asked how many words he'd mastered, and we said: "One - 'a-duh'. It means 'dog'."

His older brother James had about a hundred words at this age, but then, David was earlier to walk. They all have different talents, don't they?

The nurse made a note, showed David some flashing lights and spinning toys, then stood behind him and called his name. He didn't react.

She called again, more sharply. David ignored her. The nurse shook her head.

"He ought to turn around. It should be instinct. And his speech is slow to develop - have you noticed any hearing problems?"

Had we noticed? The whole street was painfully aware that David suffered from ear infections.

The screams that signalled pain were even more piercing and relentless than his usual howls of protest.

He had screamed since he was a baby. Whimpering and bleating gradually built into head-splitting wailing which went on and on until it burned itself out and David fell asleep.

One day we bumped into two of our neighbours, telling them we had just returned from the ear clinic.

The husband, a man in his 60s, said: "We've always said that baby had something wrong with him."

Other people were less rude, but they gawked when David shrieked in shops or parks. The idea of admitting that people like that man might be right was unthinkable.

But after the nurse's visit, my wife Nicky started to search for information on speech and language delays. There were many possible causes - and the most devastating was autism.

She found the standard medical textbook on mental health, Diagnostic and Statistical Manual Of Mental Disorders (DSM-IV).

It catalogued the criteria for autism: David would have to match at least six of them from a list of 12. We worked our way down the page; David matched point after point.

He never held our gaze and rarely made eye contact, his face revealed his feelings only when he was screaming and he didn't use gestures like waving or pointing.

He ignored dogs, cats and his brother ("failure to develop peer relationships").

If he had ever brought a toy to show us, we couldn't think when ("lack of spontaneous seeking to share enjoyment").

He was oblivious to our attempts to play games like peek-a-boo or chase, and didn't copy other children ("lack of social reciprocity and appropriate play").

He couldn't talk, and showed no sign of understanding anything we said ("lack of language development").

He watched the same videos repeatedly, spent hours stepping back and forth across bumps in the path, and was fixated on slamming doors ("abnormally intense and focused preoccupations").

He shrieked if we turned left instead of right when we stepped outside the door ("inflexible adherence to specific routines").

He fluttered his hands in front of him when agitated ("repetitive motor movements").

I made a last attempt to laugh it off by underlining fragments of the criteria which could apply to me.

"I've got dodgy social skills," I said. "I like to be solitary. I've got a million rituals. He's not autistic, he'll just grow up to be a journalist."

"Stop making a joke of it," Nicky told me. "We need to see a doctor."

We were referred to a consultant paediatrician at Bristol's Royal Hospital for Children, but our appointment was an agonising nine months away.

Everything that Nicky had read about autism emphasised that "early intervention" was essential, so we booked a private consultation.

After examining our son, the BUPA paediatrician told us to go back to our GP and insist on seeing a specialist as soon as we could.

We took David to the children's clinic to be assessed, but felt like frauds. He was grinning and bouncing. There were two other children in the waiting room, both in wheelchairs.

One little girl was bald, with dark rings around her eyes. She looked exhausted.

The other might have been a boy or a girl - thick curls, round face, a clear bag on a stick which fed a liquid through a tube under the child's jumper.

I smiled at the mother. "Who's this?" I asked. She just stared at me. "Kayley," she said at last.

"Hello, Kayley. You've got lovely hair." The child's head lolled from side to side. "She's deaf," the mother said, "and blind. She can't move on her own. She has to be fed through a tube in her belly."

She said each fact like an accusation. Whatever was wrong with our child, it was insignificant compared to her daughter's ailments. I wanted to take my child away. He didn't belong here.

Finally, after several weeks, the initial diagnosis came through at yet another appointment.

"Your son is probably not autistic, or only mildly so," Dr Smith said. "He has a communication disorder, but my opinion is that he's outside the autistic spectrum."

This was the headline news as far as I was concerned - "Nightmare over: screaming boy of Bristol is not a fruitloop, say medics".

Nicky was less trusting. She wanted to see the written report. That came two weeks later by post.

It described David's "significant difficulties" with communication, his "unusual" behaviour and his way of treating others "more as objects than people".

"All these aspects clearly put David within the autistic spectrum," the report concluded.

We read it over and over. Dr Smith at least had the grace to visit us and apologise. He admitted he had based his conclusions on his brief inspection of David six months earlier, in our kitchen.

He hadn't looked at the stack of reports from the assessment. Now he revised his diagnosis: David was moderately to severely autistic.

By the time the specialists called us to a meeting, the final stage of the report, David's diagnosis had been revised upward again. He was now "profoundly autistic".

In the following months, Nicky and were desperate to treat David' problems. We were ready to consider any treatment.

There were two main contenders: behaviour and diet. We heard about applied behavioural analysis (also known as the Lovaas technique).

This method involved a parent or teacher spending 30 to 40 hours each week with the children, mirroring every gesture and sound.

I went to a lecture on it, but the more the lecturer talked dismissively about our son, the more I thought: "I love my son, it's you I can't stand."

We didn't want to make David invisible, as this lecturer was advising. The therapy sounded like an expensive way of making sure he was never happy again.

So we tried every day to broaden his diet: chocolate, pineapple, buttered bread, Sugar Puffs. But all he drank, from a baby bottle, was full-fat milk diluted with boiling water, and dry Weetabix. If we had banned these foods, he would simply have starved.

The one story that sums up how David's mind works is when we went to the beach at Aberdovey in Wales. The waves were no more than ripples, and the shallow water was warm - perfect for toddlers to paddle in.

It was a few weeks after David's third birthday. If we could only get David's toes into the water, we'd have achieved something normal as a family: we'd have gone paddling at the seaside together.

David let Nicky carry him on her hip, while she splashed with James at the water's edge.

Faced with a little brother who won't let go of Mummy in the sea, a healthy five-year-old can't restrain himself for ever. James managed 90 seconds.

Two-handed, he sloshed a pint of seawater straight at David's face.

We braced ourselves for a shriek that would freeze the whole beach like a panoramic photo. But David didn't scream. He blinked, then chuckled.

Nicky seized her chance and dipped David's legs in the water. He chuckled some more.

At last, she let him down and held his hand as he stood waist-deep in the water. We cheered as Nicky let go of his fingers. David sat down. He disappeared. Even as his face vanished below the surface, he looked serene.

He must have been certain, until he was submerged, that the water level would go down as he sat - the truth didn't hit him for a couple of seconds.

He then lurched to his feet and strode out of the water in outrage. He wasn't frightened of the sea, he was simply disgusted at its behaviour.

If the water didn't have the sense to remain waist-high, David was having nothing to do with it.

Years later, I was watching James play a video game and realised that, although the cartoon hero seemed to be leaping, ducking and running, he really remained dead-centre of the screen all the time.

We expected to see the man move, not the world, because that's how life is. But that's not how things happen in cartoons.

And it's not how things happen in David's life, either. He is always dead-centre of the screen. The world flows around him.

Nicky and I laughed until we hurt that afternoon, but David never saw the funny side. He refused to be carried on to Aberdovey beach again.

Yet David was full of surprises. One day, when he was five-and-a-half, he started talking. It was as simple, and as unexpected, as that.

We had always insisted he didn't have learning difficulties, only understanding difficulties. He could learn to do anything he wanted, such as unbuckle a harness or operate a video player.

He wouldn't learn to do anything we wanted because he didn't see why he should. David didn't understand - and without words, we couldn't make him.

When he started talking, we realised the problem was more complex. But it hardly mattered, because we were so overjoyed to hear his voice.

He paraded his vocabulary for the first time just after Christmas, in the sitting room.

I'd slipped away to the kitchen and when I came back with mugs of tea, Nicky was wiping tears from her eyes. She shushed me before I could speak.

"Watch this," she said: "David, what is it?" Nicky held up a toy Kawasaki. David glanced at it and said: "Motorbike."

I gasped. "And he isn't copying me," Nicky added. "That's what is incredible. He knows the word. Look - David, what is it?"

"Racing car." "Good boy! And there, in the toy bucket - what's that?"

"Ambulance." He was saying the words perfectly, without prompting, and though his eyes only flickered at the toys, he was clearly loving the game and waiting for each challenge.

Nicky worked through every bucket of toys that morning and David knew almost every name. He came out with words that would have taxed any five-year-old - "narrowboat", "rhinoceros", "steamroller".

How long had he known "rhinoceros"? And how was he able to say it so beautifully, without any practice? For months, or years, he must have been secretly listening to words and taking them in. Now he could say them, but couldn't tell us why.

As David has grown, we have hung on to one hope. His autism ebbs and flows, and whatever improvements he makes soon fade away - but the improvements always come back more strongly. "If he did it once," we say, "eventually, he'll do it some more."

There's one sign of this which renews our hope every year: each Christmas, he remembers how to join in the fun.

David unpacks the decorations and races round the coffee table on a scooter, while Nicky and James hang baubles on the tree.

He sings along to carols, and curls up in a ball with his fingers in his ears when we pull crackers, and wears bangles and braces made of tinsel.

There'll be hugs as well. David has become very fond of hugs. He doesn't often put his arms round anyone, but he loves to be grabbed and squeezed.

He likes to make other people hug, too - he'll grab my wrist, drag me to Nicky, clamp his hands against the smalls of our backs and compress us.

For one day of the year, he will sit on Nicky's lap and watch James and me playing with presents, and listen to all of us talking and laughing.

He falls about laughing himself, sometimes because we are tickling him and sometimes because life is worth a good giggle.

For one day of the year, all his routines are suspended. David lets us control the show. He is happy to join in, one of the family.

Hopefully, a time will come when he understands that he can live like that all year round. Until then, corny as it sounds, we really do wish it could be Christmas every day.

Sunday, May 25, 2008

Searching for an answer

Autism center provides research, support for families living with autism

Prompted by his mom, 6-year-old Jonathan Milligan shares his favorite color, “yellow,” and his favorite fruit, “banana.”

Next to Jonathan is his identical twin brother, Canyon Milligan. More reluctant to talk, Canyon quietly whispers, “red.”

The Milligan brothers enjoy taking family walks, going to kindergarten and watching “Thomas and Friends” after school. On the surface, the Milligan boys seem like every other kindergartner. Jonathan and Canyon, however, have autism, a condition that affects their social interactions and ability to communicate with others.

After the twins’ diagnosis at the age of 3, the Milligans moved from Fulton to Columbia to take advantage of the city’s greater variety of services for children with autism, including MU’s Thompson Center for Autism and Neurodevelopmental Disorders.

Founded in 2005, the center offers services for the diagnosis and treatment of autism.

Until recently, the center’s services were scattered across various offices and clinics on campus. In February, the center consolidated most of its services at a single facility on Portland Street near Columbia Regional Hospital.

The facility, which will have its grand opening and ribbon-cutting on April 27, is sensitive to the needs of children with autism, with toys, clean lines and few decorations.

The center will also offer tours of its new facility when it hosts the Autism Intervention Conference for professionals and family members from March 30 to April 1.

One-stop shopping for autism-related services is a big help to families like the Milligans. Autistic children typically need to visit a variety

of specialists on a regular basis, including physical therapists, speech pathologists and neurologists.

Recent studies indicate that as many as one in 150 children develop an autism spectrum disorder, which can range from a relatively mild condition called Asperger’s syndrome to severe cases in which the individual has sharply limited ability to communicate and interact with people.

According to Janet Farmer, director of the Thompson Center, the rates of autism have been steadily increasing for the past decade, but experts aren’t sure why.

“We’re certain that genetics plays a role in autism, but the thing that we’re not certain is which genes,” Farmer said. “Like many conditions or diseases, there is probably not just one cause, but some interaction between genes and environment in order to produce the outcome of autism.”

Researchers at the Thompson Center hope their findings will lead to improved diagnosis and interventions for autism, but to families like the Milligans, the center provides services that supply immediate support. Doctors usually recognize autism when a child is 3 or 4. At this point, the goal for most families and doctors is to help children function in everyday life.

“Dressing Jonathan used to be a chore,” Jenny Milligan said. “Through therapy, we discovered that he hates long sleeves because he doesn’t like to push them up. Understanding little things like this makes life so much easier from day to day.”

For many families, one of the main goals is to prepare their children to enter kindergarten at a developmental level similar to other students in the classroom.

One way to get children ready is through classroom simulations. Children with autism participate in a “mock” classroom, where specialists can identify the best way to support their learning and development.

Children can also interact with other children and practice the structure of a typical day at the Robert G. Combs Language Preschool at MU, a morning preschool program for kids ages 3 to 5 with communication and language difficulties.

“It really helped the boys, in a therapy setting, before becoming socially active, before they hit kindergarten where they have to go through that,” Jenny Milligan said.

Now, they just spend one hour a school day with specialists, and the rest of the time in their regular classroom.

The center also hopes to create an environment where individuals affected by autism can meet other children and families going through the same challenges.

“My hope for the Thompson Center is that it becomes a resource for families,” Jenny Milligan said. “And I think it will be the Center that the parents can go to and meet with others for support.”

Eventually, the center plans to provide counseling for families and siblings of children with autism as well as other education and support group opportunities.

Research, interventions and support groups typically focus on young children.

Currently, there is little programming available for adolescents and teens with autism. Farmer said the center hopes to change that by working with advocates in the community to identify funding sources and “launch some new initiatives for young people with autism so they can be more a part of the community.”

Jenny Milligan’s hopes for the boys are simple.

“I hope that Jonathan and Canyon can find their niche in society and be able to function on their own,” Milligan said. “I want them to be happy with who they are.”

Thursday, May 22, 2008

Jenny McCarthy: The day I heard my son had autism

Editor's note: Jenny McCarthy is an actress and author of the new book "Louder Than Words: A Mother's Journey in Healing Autism" (Dutton).

I didn't know what was going on with my son Evan. One day he was a completely healthy 2-year-old and the next he kept having life-threatening seizures.

Countless doctors and hospitals couldn't get to the bottom of it, and no one could figure out the right diagnosis. We continued trying different anti-seizure medicines, but they either made Evan act psychotic or like a zombie. Finally, I got an appointment to see the best pediatric neurologist in Los Angeles.

I was beyond nervous in the doctor's office. My heart was beating so loudly that I bet Evan thought it was a drum in the next room.

When the door opened and a sweet older man walked in, I immediately felt good. I started telling him about all the seizure activity and what had been said so far about Evan. He listened closely but had his eyes on Evan the whole time. I could tell he was evaluating Evan and his bizarre behavior.

He asked me a couple of questions and seemed very peaceful about the whole thing. I was starting to feel more relaxed as he played with Evan, and then he stood up and opened his office door and told his secretary to cancel his next appointment. I thought to myself, "Wow, he must really like us. This is some big VIP treatment."

He closed the door and pulled his chair up close to mine and put his hand on my hand. He looked at me with sorrowful eyes and said, "I'm sorry, your son has autism."

I just stared at the doctor while remembering all the signs that led up to this moment. I felt each membrane and vein in my heart shattering into a million pieces. Nothing prepared me for this. I couldn't breathe. I wanted it gone. I had been through so much with seizures and psychotic reactions to meds. I looked at the doctor with pleading, tearful eyes, "This can't be. He is very loving and sweet and not anything like 'Rain Man.' "

"Every child is different," he said. "Some aren't as severe as others."

"I don't understand. How can this be? How can you tell just in a few minutes?"

He looked at me and then pointed to what Evan had made in the corner. Evan had taken those ear cones they use to look inside your ears and made the most perfect row lined up across the room.

"Does he line toys up at home instead of playing with them?" he asked.

"Yes, but don't all kids do that?"

"Nope, not all," he said. "And they all don't flap their arms like that either."

I looked at Evan and saw that he was "flapping his wings." I said, "Oh no, he just does that when he gets excited."

"That is called a stim," he said.

"A what?"

"A stim. Self-stimulatory behaviors. It's an autistic trait," he said.

I looked at Evan and saw him flapping and once again had my heart shattered. I had always looked at it like an adorable Evan characteristic, so cute and unique that I even called him my little bird.

I almost felt betrayed, like I didn't know this child standing in front of me. Everything I thought was cute was a sign of autism and I felt tricked. I guess the doctor sensed this from me because he turned my head back toward him and said, "He is still the same boy you came in here with."

No, in my eyes he wasn't. This was not Evan. Evan was locked inside this label, and I didn't know if I would ever get to know who Evan really was. All the behaviors I had thought were personality traits were autism characteristics, and that's all I had. Where was my son, and how the hell do I get him back?

I turned into a detective, and thanks to a ton of Google research, the support of UCLA and my DAN! (Defeat Autism Now) doctor, I found the treatments that worked for Evan.

Evan is now 5 years old and able to communicate completely. Since we can talk, I ask him questions that I so badly wanted to know the answers to during the crisis. When I asked him why he flaps his arms, he replied, "Because I get so excited and then I fly just like the angels do."

Not all children with autism will be able to make leaps like Evan. Some parents have worked longer and harder than I have, with no success, trying the exact same things.

I have no idea why some treatments work on some kids and not on others. But I beg moms and dads to at least try. I will work my ass off raising awareness for autism and banging down doors to get answers.

In the meantime, don't give up hope and remember that acceptance of your child's condition does not mean giving up; it's just simply loving your child for being the perfect little spirit he or she is.

That was the shift I had experienced before Evan's healing even began. Faith is what continues to keep me moving forward.

Autistic children linked to same sperm donor

NEW YORK (CNN) -- He's only 5½ years old, and yet he's practically memorized the entire New York subway grid.

He reads at the fourth-grade level, plays two-handed piano compositions and is better versed than most adults about the Fibonacci code, a complex mathematics sequence.

Dylan loves Italian music and draws pictures that artist Jackson Pollock would be proud of.

He also happens to be autistic.

Gwenyth Jackaway, Dylan's mother, is a professor at New York's Fordham University. She's single but had always wanted to have a child. So she contacted California Cryobank, one of the largest sperm donor banks in the country.

Cryobank doesn't reveal the identities of donors but allows people to choose based on the traits they'd like their child to have. Jackaway decided on "Donor X" because he appeared philosophical and intelligent on paper. He liked music, loved to travel and had a high IQ and a degree in economics.

What she couldn't know then is that her son would have autism. So she started to wonder whether Donor X might carry a gene that could have contributed. Video Dylan tells Randi Kaye how to take subway back to work »

The cause or causes of autism are not known and are hotly debated. Most experts believe that genetics are a component, making a child predisposed to autism or responsive to an environmental trigger.

"It's a combination of being genetically vulnerable and then having some kind of social or toxicant exposure that tips you over," according to Dr. Gary Goldstein of the Kennedy Krieger Institute.

Researchers have found some genetic areas associated with autism, but it could take years before the gene or genes that cause autism or contribute to it will be determined.

Until then, Geri Dawson, chief science officer for the Manhattan-based advocacy group Autism Speaks, says there's no way to screen for those genes and prevent them from being passed to a child.

"We wouldn't be able to screen a donor for autism because we don't yet know the specific genes that are contributing to autism," Dawson said. "But there is a lot of research going on, and I would say in the next five to 10 years, we will have identified between five and 10 genes that we know raise the risk for autism."

Once the autism gene or genes have been identified, it would theoretically be possible to screen for those genes, according to Dawson.

Jackaway says she went into a period of mourning when Dylan's autism was diagnosed at age 2.

"When you're handed a diagnosis of some sort of developmental disorder, you have to let go of the child you thought you were going to have," Jackaway said. "There's a sense of loss of the child, a grieving process. There's denial, there's rage, and then there's the tremendous sadness, and hopefully you get to a place of accepting."

Jackaway says she had to accept that "I don't have that child I thought I was going to have. But I have this child instead, who's right here in front of me."

Through a Web site called Donor Sibling Registry, she reached out to other women who used Donor X. She found six families who had used the same donor.

Two years ago, she visited Theresa Pergola in the New York area; she had given birth to triplets using sperm from Donor X. Just minutes into their meeting, Jackaway noticed Pergola's son, Joseph, 2, exhibiting some of the same behavior as her son.

"He was walking on his toes; he was flapping his hands. There seemed to be eye contact issues," recalled Jackaway, who immediately suggested screening Joseph for autism.

"She told me that she saw characteristics of autism, and it was very upsetting to me at that time," Pergola said. "I didn't know what to expect from that point on. I know I was scared, and she was there to let me know that it was going to be OK."

Pergola says she was afraid because she had an image of autism in her head and believed her son would be "in the corner and rocking and not talking."

She says Jackaway reassured her that wouldn't be the case.

One month later, a test confirmed what Pergola already knew: Joseph was autistic. The diagnosis brought her to tears, and now these two women whose sons share a father were immediately connected by another bond: autism.

"She was terribly upset," Jackaway remembered. "That moment is a terribly frightening moment. You get handed a diagnosis, and you get handed an entirely new future."

In six families Jackaway contacted that had used Donor X, three of the children are autistic, and one is showing signs of autism.

But would Jackaway be happier today if there had been a way to screen Donor X for an autism gene?

"I've done a lot of thinking about this, and to say yes to that is to say that I wish Dylan isn't Dylan," Jackaway said. "I love my son and everything about him, and that means loving his autism also. Loving your children means loving everything about them. Our children don't have autism; they are autistic. It's part of who they are."

There is currently no way to screen for autism, and in a statement, the company said in part:

"There is no current genetic test to detect autism. California Cryobank (CCB) employs one of the most thorough and rigorous donor screening processes in the industry, with less than 1% of all applicants actually becoming donors. The standard CCB procedure for screening donors involves extensive physical, genetic and health screening ..."

Since the discovery of autism in some of the families that used Donor X, Cryobank had this to say about his samples:

"... per CCB policy, the donor's samples were removed from the general catalog. These vials may only be sold to a client who has previously used specimens of this donor and is interested in ordering additional specimens. In this case the client is made aware of the new medical information and potential issues ..."

The families don't blame the sperm bank. In fact, Theresa Pergola says she's still uncertain about an autism screening process, if and when it ever becomes available.

"It can go either way, on the one hand it could be helpful so that people could make choices about what risks they want to take," says Pergola. "On the other hand it's like, what else are they going to screen for, you know? Are they going to screen for certain personality traits? It's hard to say. It's really hard to say."

Friday, May 9, 2008

Cracking autism's shell

Therapy clinic in demand
By Janelle Frost - jfrost@thesunnews.com

As Jay Cole yelled "ready, set, go," while holding a bright yellow ball in his hand, the children took off running to their bases, trying not to get hit by the ball.

"Run, Paige, run!" Cole said as 2-year-old Paige Pendleton ran to first base with a big grin on her face.

Paige and four other children were playing kickball with their therapists at Surfside Presbyterian Church.

The children, each with an autism spectrum disorder, attend a therapy program designed to help each child reach his or her optimum development through applied behavior analysis therapy.

The children participate with their therapists in a session five days a week at a temporary location at the Surfside Beach church.

Clinic officials are looking for a permanent location, preferably in Myrtle Beach.

Increased interest in the clinic, which began as a summer pilot program, has helped it grow into a year-round program targeted at children 6 and younger.

Officials at Surfside Presbyterian Church have donated the space for the clinic, which is the only one of its type in the Grand Strand, said Cole, the clinic's director.

He said the next nearest is in Spartanburg.

The area's clinic is a partner with SOS Health Care Inc. and is funded through private grants, the United Way of Horry County, civic clubs, churches and individuals, SOS officials said.

Half of the children attend a morning session and the other half attend in the afternoon. The therapy is individualized for each child.

Paige has been in the therapy since her second birthday, according to her grandmother, Pat Bernhard.

It was "a year or more earlier than when people get therapy because they don't want to diagnose them that early," Bernhard said. "I can't believe how far she's come in four months."

Bernhard said Paige went from not speaking and responding when her name was called to saying 15 to 20 words and doing sign language.

According to the National Institutes of Health, most children know about 50 words at 24 months of age.

"The goal is to teach kids to the extent where they can go into kindergarten like any other child," Cole said. "Two to 6 years old are the primary ages to benefit from ABA therapy."

Applied behavior analysis therapy is a nonmedical treatment commonly used to help autistic children.

Through therapy, skills are broken down into smaller pieces to teach autistic children everything from language skills to how to play appropriately with toys to being potty-trained.

The behavior is reinforced, and the child is rewarded for the progress.

Cole said the clinic specifically deals with autism because research shows the effectiveness of ABA therapy with autistic children.

Twenty-five people applied for their child to attend the 10-week-long ABA therapy clinic this past summer, but there was space for only 14 children to participate.

A lottery system was used to select the children.

The goal was to have the clinic every summer, but there was an overwhelming response from parents to do it year-round, said Cole, who was a consultant with Horry County Schools' ABA program.

Now there are 11 children in the program, he said - including 5-year-old Drew Putnam.

Alissa Smith said her son Drew, who was diagnosed in 2005 with autism, started out talking and just stopped one day.

Since being in the program, he has gone from saying baby words like popcorn to saying complete sentences such as "Mommy, I want some popcorn," Smith said.

"I strongly believe after all these years of trying everything, ABA helps my son," she said.

Autistic teen inspires undergrad to produce award-winning film

Jaclyn Spirer is passionate about the people and projects in her life.

Ms. Spirer, the 2004 valedictorian at Gateway High School, brought that passion to a film documentary about Matthew Wallace, a 15-year-old Pitcairn boy with profound autism, and his family.

That documentary -- "Finding Matty's Voice" -- recently won the Best Documentary and Grand Jury prizes at the Ivy Film Festival at Brown University in Providence, R.I.

Ms. Spirer, 22, of Monroeville got to know Matthew when she was a high school junior, baby- sitting for the then 10-year-old. Matthew's father, Mark, was Ms. Spirer's advanced placement history teacher at Gateway.

"I was so moved by Matty," she said. "He completely changed my life."

The child's effect on her was so profound, Ms. Spirer entered Allegheny College with plans to eventually become a special education teacher.

Allegheny, a liberal arts college, doesn't offer a major in special education. Ms. Spirer chose a different major, communication arts, and soon discovered a calling to documentary filmmaking that led her back full circle to Matthew and his special needs.

"Finding Matty's Voice" was Ms. Spirer's senior project.

The Ivy Film Festival features the work of graduate and undergraduate film students and the involvement of top film industry professionals.

Director Martin Scorsese and Tom Rothman, chairman and CEO of Fox Filmed Entertainment, participated in this year's festival. The competition attracted 250 entries, many from prestigious film schools such as New York University and UCLA.

It is highly unlikely that a first-time filmmaker from a small college would win Best Documentary and the Grand Jury prizes. But Ms. Spirer, who works for Sesame Workshop in New York City, did just that.

The 25-minute film is a sensitive depiction of Matthew's inner world and his family's journey through autism.

"I didn't want to do this as an information piece about autism, but to bring people into Matty's world," Ms. Spirer said.

To accomplish this, she used a slow shutter speed to track Matthew playing with his hands in soapy water, a favorite activity that engages him for long periods. The film opens with this footage.

The film also incorporates family video footage from Matthew's early years and interviews with family members, who speak openly.

Matthew was diagnosed with autism at 18 months, after his parents noticed that he was regressing from developmental milestones already achieved, such as the ability to speak.

Matthew is now a freshman at Gateway High School. He communicates through a combination of signs, vocalization and other methods.

The film shows Matthew's central role in the life of his family -- parents Mark, 48, and Barbara, 46, and his siblings, brother Vincent, 21, and sister Maria, 18.

Matthew was diagnosed with autism in the mid-1990s, when much less was known about the condition.

Autism is a complex neurobiological disorder that affects communication and behavior. One in every 150 children in the United States is diagnosed with Autism Spectrum Disorders, ranging from mild to severe.

The film's interviews with Barbara and Mark Wallace reveal their strong bond to their son, and their daily struggle with the condition and concerns for the future. Vincent and Maria, both college students, were also "disarmingly frank" in the interviews, said Ms. Spirer.

"They talked about feelings that even we were not aware of," said Mrs. Wallace, who, like her husband, is a teacher.

"I have huge respect for the Wallaces," said Ms. Spirer. "They are so strong. They will do anything they can to make sure Matty has a better life."

Although she knew the Wallaces well, interviewing them was an emotional experience for Ms. Spirer and the family. After her first interview, she wondered whether she was doing the right thing by making the film.

"I was emotionally and physically drained," she said. "I didn't want the Wallaces to go through this if it was going to cause them pain."

Ms. Spirer's adviser at Allegheny College, River Branch, encouraged her to stay with it.

"She told me that I was going to encounter struggles as a filmmaker and that it tells you that the story is important to tell," Ms. Spirer said.

Barbara Wallace said the film perfectly captures Matty's innocence -- his big brown eyes, his sensory world -- and how the family has grown because of him. She believes that anyone who sees the film will gain a greater understanding of what children with autism and their families experience.

To obtain a copy of the film or to arrange a screening, contact Ms. Spirer at spirerj@gmail.com.

Author aims to raise autism awareness

SPRINGFIELD - Several years ago, Jacqueline Williams-Hines discovered that explaining the characteristics of autism to neighborhood children made them much more comfortable with her son Joshua, who is now 11.

Children with Joshua's condition often avoid eye contact, may engage in repetitive movements or sounds, and may develop strong preoccupations with particular toys or favorite movies.

"I always felt that when children don't understand something, that's when it seems alien and weird to them," Williams-Hines said. "When we explained these issues to children on our street, things changed. Our son was no longer seen as weird. He was just Joshua."

It was that experience that inspired Williams-Hines, a full-time medical transcriptionist, to begin writing a series of books that aim to demystify autism for those she refers to as "typical children,"or those who do not have this condition.

The first book, "Joshua and the Startabulous Dream Maker," was a brief overview of autism. Her second book, which was released in April, is called "The Adventures of Suther Joshua from Planet Yethican."

"The new book deals with how autistic people tend to get preoccupied with things," Williams-Hines said. "In my son's case, it's Disney movies. He can see a movie once and then repeat the dialog verbatim. It's hard for other children to relate to (children with autism), so I wanted to explain a little about why they're preoccupied and how to communicate with them."

The third book she plans will focus on the habit of "auto-stimulation," which refers to self-soothing habits that can include rocking, bouncing or humming.

"Basically, I wanted him to develop friendships," Williams-Hines said, "and I knew it was a going to be hard for his peers."

Both books are self-published, but the author did receive a $2,100 grant from the Springfield Cultural Council for the second book.

When the first was released last year, she celebrated with a small launch party in her son's classroom at Boland Elementary School. Pizza and cake were followed by a reading of the book, which was fine with Joshua.

"He loves it," Williams-Hines said. "He feels like he's a celebrity now."

Originally from Louisiana, Williams-Hines graduated from the former Classical High School in Springfield and attended American International College. She and her husband, Robert, have two other sons, Robert IV, 19, and Anthony, 27.

"I've always written poetry and stories and wanted to publish, but I had never felt the passion I felt with these books," she said. "My first book began as a poem, and then I wondered how I could take my love of poetry and use it to express the difficulties that my son has to deal with every day."

Williams-Hines, who organized the annual No Small Victories Autism Awareness Event/Walk-a-thon - the second of which will take place on Sept. 27 - says her main focus is on raising awareness for parents and children, not raising money.

"People often hear about fund-raisers to help find an autism cure," she said. "My goal is more immediate. As a parent I have to live day to day, and I want to share with others what's going to make life easier now."

Wiliams-Hines said that when her son was diagnosed at the age of 2, she didn't know anyone else affected by autism. Since that time, it has become much more prevalent, which means the audience for her books includes just about everyone: classmates, younger siblings, friends and family members.

"Now it's getting hard not to know someone who has autism," she said. "It breaks my heart because whenever I meet someone who has just received the diagnosis, it takes me back to that day when my son was diagnosed. So I want to be able to share with others that's it going to get better and reach out to other parents and let them know: It's not over yet. Don't write our kids off."

Sunday, May 4, 2008


Dr. Temple Grandin

I THINK IN PICTURES. Words are like a second language to me. I translate both spoken and written words into full-color movies, complete with sound, which run like a VCR tape in my head. When somebody speaks to me, his words are instantly translated into pictures. Language-based thinkers often find this phenomenon difficult to understand, but in my job as an equipment designer for the livestock industry, visual thinking is a tremendous advantage.

Visual thinking has enabled me to build entire systems in my imagination. During my career I have designed all kinds of equipment, ranging from corrals for handling cattle on ranches to systems for handling cattle and hogs during veterinary procedures and slaughter. I have worked for many major livestock companies. In fact, one third of the cattle and hogs in the United States are handled in equipment I have designed. Some of the people I've worked for don't even know that their systems were designed by someone with autism. I value my ability to think visually, and I would never want to lose it.

One of the most profound mysteries of autism has been the remarkable ability of most autistic people to excel at visual spatial skills while performing so poorly at verbal skills. When I was a child and a teenager, I thought everybody thought in pictures. I had no idea that my thought processes were different. In fact, I did not realize the full extent of the differences until very recently. At meetings and at work I started asking other people detailed questions about how they accessed information from their memories. From their answers I learned that my visualization skills far exceeded those of most other people.

I credit my visualization abilities with helping me understand the animals I work with. Early in my career I used a camera to help give me the animals' perspective as they walked through a chute for their veterinary treatment. I would kneel down and take pictures through the chute from the cow's eye level. Using the photos, I was able to figure out which things scared the cattle, such as shadows and bright spots of sunlight. Back then I used black-and-white film, because twenty years ago scientists believed that cattle lacked color vision. Today, research has shown that cattle can see colors, but the photos provided the unique advantage of seeing the world through a cow's viewpoint. They helped me figure out why the animals refused to go in one chute but willingly walked through another.

Every design problem I've ever solved started with my ability to visualize and see the world in pictures. I started designing things as a child, when I was always experimenting with new kinds of kites and model airplanes. In elementary school I made a helicopter out of a broken balsa-wood airplane. When I wound up the propeller, the helicopter flew straight up about a hundred feet. I also made bird-shaped paper kites, which I flew behind my bike. The kites were cut out from a single sheet of heavy drawing paper and flown with thread. I experimented with different ways of bending the wings to increase flying performance. Bending the tips of the wings up made the kite fly higher. Thirty years later, this same design started appearing on commercial aircraft.

Now, in my work, before I attempt any construction, I test-run the equipment in my imagination. I visualize my designs being used in every possible situation, with different sizes and breeds of cattle and in different weather conditions. Doing this enables me to correct mistakes prior to construction. Today, everyone is excited about the new virtual reality computer systems in which the user wears special goggles and is fully immersed in video game action. To me, these systems are like crude cartoons. My imagination works like the computer graphics programs that created the lifelike dinosaurs in Jurassic Park. When I do an equipment simulation in my imagination or work on an engineering problem, it is like seeing it on a videotape in my mind. I can view it from any angle, placing myself above or below the equipment and rotating it at the same time. I don't need a fancy graphics program that can produce three-dimensional design simulations. I can do it better and faster in my head.

I create new images all the time by taking many little parts of images I have in the video library in my imagination and piecing them together. I have video memories of every item I've ever worked with -- steel gates, fences, latches, concrete walls, and so forth. To create new designs, I retrieve bits and pieces from my memory and combine them into a new whole. My design ability keeps improving as I add more visual images to my library. I add video-like images from either actual experiences or translations of written information into pictures. I can visualize the operation of such things as squeeze chutes, truck loading ramps, and all different types of livestock equipment. The more I actually work with cattle and operate equipment, the stronger my visual memories become.

I first used my video library in one of my early livestock design projects, creating a dip vat and cattle-handling facility for John Wayne's Red River feed yard in Arizona. A dip vat is a long, narrow, seven-foot-deep swimming pool through which cattle move in single file. It is filled with pesticide to rid the animals of ticks, lice, and other external parasites. In 1978, existing dip vat designs were very poor. The animals often panicked because they were forced to slide into the vat down a steep, slick concrete decline. They would refuse to jump into the vat, and sometimes they would flip over backward and drown. The engineers who designed the slide never thought about why the cattle became so frightened.

The first thing I did when I arrived at the feedlot was to put myself inside the cattle's heads and look out through their eyes. Because their eyes are on the sides of their heads, cattle have wide-angle vision, so it was like walking through the facility with a wide-angle video camera. I had spent the past six years studying how cattle see their world and watching thousands move through different facilities all over Arizona, and it was immediately obvious to me why they were scared. Those cattle must have felt as if they were being forced to jump down an airplane escape slide into the ocean.

Cattle are frightened by high contrasts of light and dark as well as by people and objects that move suddenly. I've seen cattle that were handled in two identical facilities easily walk through one and balk in the other. The only difference between the two facilities was their orientation to the sun. The cattle refused to move through the chute where the sun cast harsh shadows across it. Until I made this observation, nobody in the feedlot industry had been able to explain why one veterinary facility worked better than the other. It was a matter of observing the small details that made a big difference. To me, the dip vat problem was even more obvious.

My first step in designing a better system was collecting all the published information on existing dip vats. Before doing anything else, I always check out what is considered state-of-the-art so I don't waste time reinventing the wheel. Then I turned to livestock publications, which usually have very limited information, and my library of video memories, all of which contained bad designs. From experience with other types of equipment, such as unloading ramps for trucks, I had learned that cattle willingly walk down a ramp that has cleats to provide secure, non slip footing. Sliding causes them to panic and back up. The challenge was to design an entrance that would encourage the cattle to walk in voluntarily and plunge into the water, which was deep enough to submerge them completely, so that all the bugs, including those that collect in their ears, would be eliminated.

I started running three-dimensional visual simulations in my imagination. I experimented with different entrance designs and made the cattle walk through them in my imagination. Three images merged to form the final design: a memory of a dip vat in Yuma, Arizona, a portable vat I had seen in a magazine, and an entrance ramp I had seen on a restraint device at the Swift meat-packing plant in Tolleson, Arizona. The new dip vat entrance ramp was a modified version of the ramp I had seen there. My design contained three features that had never been used before: an entrance that would not scare the animals, an improved chemical filtration system, and the use of animal behavior principles to prevent the cattle from becoming overexcited when they left the vat.

The first thing I did was convert the ramp from steel to concrete. The final design had a concrete ramp on a twenty five-degree downward angle. Deep grooves in the concrete provided secure footing. The ramp appeared to enter the water gradually, but in reality it abruptly dropped away below the water's surface. The animals could not see the drop-off because the dip chemicals colored the water. When they stepped out over the water, they quietly fell in, because their center of gravity had passed the point of no return.

Before the vat was built, I tested the entrance design many times in my imagination. Many of the cowboys at the feedlot were skeptical and did not believe my design would work. After it was constructed, they modified it behind my back, because they were sure it was wrong. A metal sheet was installed over the non slip ramp, converting it back to an old-fashioned slide entrance. The first day they used it, two cattle drowned because they panicked and flipped over backward.

When I saw the metal sheet, I made the cowboys take it out. They were flabbergasted when they saw that the ramp now worked perfectly. Each calf stepped out over the steep drop-off and quietly plopped into the water. I fondly refer to this design as "cattle walking on water."

Over the years, I have observed that many ranchers and cattle feeders think that the only way to induce animals to enter handling facilities is to force them in. The owners and managers of feedlots sometimes have a hard time comprehending that if devices such as dip vats and restraint chutes are properly designed, cattle will voluntarily enter them. I can imagine the sensations the animals would feel. If I had a calf's body and hooves, I would be very scared to step on a slippery metal ramp.

There were still problems I had to resolve after the animals left the dip vat. The platform where they exit is usually divided into two pens so that cattle can dry on one side while the other side is being filled. No one understood why the animals coming out of the dip vat would sometimes become excited, but I figured it was because they wanted to follow their drier buddies, not unlike children divided from their classmates on a playground. I installed a solid fence between the two pens to prevent the animals on one side from seeing the animals on the other side. It was a very simple solution, and it amazed me that nobody had ever thought of it before.

The system I designed for filtering and cleaning the cattle hair and other gook out of the dip vat was based on a swimming pool filtration system. My imagination scanned two specific swimming pool filters that I had operated, one on my Aunt Brecheen's ranch in Arizona and one at our home. To prevent water from splashing out of the dip vat, I copied the concrete coping overhang used on swimming pools. That idea, like many of my best designs, came to me very clearly just before I drifted off to sleep at night.

Being autistic, I don't naturally assimilate information that most people take for granted. Instead, I store information in my head as if it were on a CD-ROM disc. When I recall something I have learned, I replay the video in my imagination. The videos in my memory are always specific; for example, I remember handling cattle at the veterinary chute at Producer's Feedlot or McElhaney Cattle Company. I remember exactly how the animals behaved in that specific situation and how the chutes and other equipment were built. The exact construction of steel fenceposts and pipe rails in each case is also part of my visual memory. I can run these images over and over and study them to solve design problems.

If I let my mind wander, the video jumps in a kind of free association from fence construction to a particular welding shop where I've seen posts being cut and Old John, the welder, making gates. If I continue thinking about Old John welding a gate, the video image changes to a series of short scenes of building gates on several projects I've worked on. Each video memory triggers another in this associative fashion, and my daydreams may wander far from the design problem. The next image may be of having a good time listening to John and the construction crew tell war stories, such as the time the backhoe dug into a nest of rattlesnakes and the machine was abandoned for two weeks because everybody was afraid to go near it.

This process of association is a good example of how my mind can wander off the subject. People with more severe autism have difficulty stopping endless associations. I am able to stop them and get my mind back on track. When I find my mind wandering too far away from a design problem I am trying to solve, I just tell myself to get back to the problem.

Interviews with autistic adults who have good speech and are able to articulate their thought processes indicate that most of them also think in visual images. More severely impaired people, who can speak but are unable to explain how they think, have highly associational thought patterns. Charles Hart, the author of "Without Reason", a book about his autistic son and brother, sums up his son's thinking in one sentence: "Ted's thought processes aren't logical, they're associational." This explains'~ Ted's statement "I'm not afraid of planes. That's why they fly so high." In his mind, planes fly high because he is not afraid of them; he combines two pieces of information, that planes fly high and that he is not afraid of heights.

Another indicator of visual thinking as the primary method of processing information is the remarkable ability many autistic people exhibit in solving jigsaw puzzles, finding their way around a city, or memorizing enormous amounts of information at a glance. My own thought patterns are similar to those described by A. R. Luria in The Mind of a Mnemonist. This book describes a man who worked as a newspaper reporter and could perform amazing feats of memory. Like me, the mnemonist had a visual image for everything he had heard or read. Luria writes, "For when he heard or read a word, it was at once converted into a visual image corresponding with the object the word signified for him." The great inventor Nikola Tesla was also a visual thinker. When he designed electric turbines for power generation, he built each turbine in his head. He operated it in his imagination and corrected faults. He said it did not matter whether the turbine was tested in his thoughts or in his shop; the results would be the same.

Early in my career I got into fights with other engineers at meat-packing plants. I couldn't imagine that they could be so stupid as not to see the mistakes on the drawing before the equipment was installed. Now I realize it was not stupidity but a lack of visualization skills. They literally could not see. I was fired from one company that manufactured meat-packing plant equipment because I fought with the engineers over a design which eventually caused the collapse of an overhead track that moved 1,200-pound beef carcasses from the end of a conveyor. As each carcass came off the conveyor, it dropped about three feet before it was abruptly halted by a chain attached to a trolley on the overhead track. The first time the machine was run, the track was pulled out of the ceiling. The employees fixed it by bolting it more securely and installing additional brackets. This only solved the problem temporarily, because the force of the carcasses jerking the chains was so great. Strengthening the overhead track was treating a symptom of the problem rather than its cause. I tried to warn them. It was like bending a paper clip back and forth too many times. After a while it breaks.

Different Ways of Thinking

The idea that people have different thinking patterns is not new. Francis Galton, in Inquiries into Human Faculty and Development, wrote that while some people see vivid mental pictures, for others "the idea is not felt to be mental pictures, but rather symbols of facts. In people with low pictorial imagery, they would remember their breakfast table but they could not see it.''

It wasn't until I went to college that I realized some people are completely verbal and think only in words. I first suspected this when I read an article in a science magazine about the development of tool use in prehistoric humans. Some renowned scientist speculated that humans had to develop language before they could develop tools. I thought this was ridiculous, and this article gave me the first inkling that my thought processes were truly different from those of many other people. When I invent things, I do not use language. Some other people think in vividly detailed pictures, but most think in a combination of words and vague, generalized pictures.

For example, many people see a generalized generic church rather than specific churches and steeples when they read or hear the word "steeple." Their thought patterns move from a general concept to specific examples. I used to become very frustrated when a verbal thinker could not understand something I was trying to express because he or she couldn't see the picture that was crystal clear to me. Further, my mind constantly revises general concepts as I add new information to my memory library. It's like getting a new version of software for the computer. My mind readily accepts the new "software," though I have observed that some people often do not readily accept new information.

Unlike those of most people, my thoughts move from video like, specific images to generalization and concepts. For example, my concept of dogs is inextricably linked to every dog I've ever known. It's as if I have a card catalog of dogs I have seen, complete with pictures, which continually grows as I add more examples to my video library. If I think about Great Danes, the first memory that pops into my head is Dansk, the Great Dane owned by the headmaster at my high school. The next Great Dane I visualize is Helga, who was Dansk's replacement. The next is my aunt's dog in Arizona, and my final image comes from an advertisement for Fitwell seat covers that featured that kind of dog. My memories usually appear in my imagination in strict chronological order, and the images I visualize are always specific. There is no generic, generalized Great Dane.

However, not all people with autism are highly visual thinkers, nor do they all process information this way. People throughout the world are on a continuum of visualization skills ranging from next to none, to seeing vague generalized pictures, to seeing semi-specific pictures, to seeing, as in my case, in very specific pictures.

I'm always forming new visual images when I invent new equipment or think of something novel and amusing. I can take images that I have seen, rearrange them, and create new pictures. For example, I can imagine what a dip vat would look like modeled on computer graphics by placing it on my memory of a friend's computer screen. Since his computer is not programmed to do the fancy 3-D rotary graphics, I take computer graphics I have seen on TV or in the movies and superimpose them in my memory. In my visual imagination the dip vat will appear in the kind of high quality computer graphics shown on Star Trek. I can then take a specific dip vat, such as the one at Red River, and redraw it on the computer screen in my mind. I can even duplicate the cartoonlike, three-dimensional skeletal image on the computer screen or imagine the dip vat as a videotape of the real thing.

Similarly, I learned how to draw engineering designs by closely observing a very talented draftsman when we worked together at the same feed yard construction company. David was able to render the most fabulous drawings effortlessly. After I left the company, I was forced to do all my own drafting. By studying David's drawings for many hours and photographing them in my memory, I was actually able to emulate David's drawing style. I laid some of his drawings out so I could look at them while I drew my first design. Then I drew my new plan and copied his style. After making three or four drawings, I no longer had to have his drawings out on the table. My video memory was now fully programmed. Copying designs is one thing, but after I drew the Red River drawings, I could not believe I had done them. At the time, I thought they were a gift from God. Another factor that helped me to learn to draw well was something as simple as using the same tools that David used. I used the same brand of pencil, and the ruler and straight edge forced me to slow down and trace the visual images in my imagination.

My artistic abilities became evident when I was in first and second grade. I had a good eye for color and painted watercolors of the beach. One time in fourth grade I modeled a lovely horse from clay. I just did it spontaneously, though I was not able to duplicate it. In high school and college I never attempted engineering drawing, but I learned the value of slowing down while drawing during a college art class. Our assignment had been to spend two hours drawing a picture of one of our shoes. The teacher insisted that the entire two hours be spent drawing that one shoe. I was amazed at how well my drawing came out. While my initial attempts at drafting were terrible, when I visualized myself as David, the draftsman, I'd automatically slow down.

Processing Nonvisual Information

Autistics have problems learning things that cannot be thought about in pictures. The easiest words for an autistic child to learn are nouns, because they directly relate to pictures. Highly verbal autistic children like I was can sometimes learn how to read with phonics. Written words were too abstract for me to remember, but I could laboriously remember the approximately fifty phonetic sounds and a few rules. Lower-functioning children often learn better by association, with the aid of word labels attached to objects in their environment. Some very impaired autistic children learn more easily if words are spelled out with plastic letters they can feel.

Spatial words such as "over" and "under" had no meaning for me until I had a visual image to fix them in my memory. Even now, when I hear the word "under" by itself, I automatically picture myself getting under the cafeteria tables at school during an air-raid drill, a common occurrence on the East Coast during the early fifties. The first memory that any single word triggers is almost always a childhood memory. I can remember the teacher telling us to be quiet and walking single-file into the cafeteria, where six or eight children huddled under each table. If I continue on the same train of thought, more and more associative memories of elementary school emerge. I can remember the teacher scolding me after I hit Alfred for putting dirt on my shoe. All of these memories play like videotapes in the VCR in my imagination. If I allow my mind to keep associating, it will wander a million miles away from the word "under," to submarines under the Antarctic and the Beatles song "Yellow Submarine." If I let my mind pause on the picture of the yellow submarine, I then hear the song. As I start humming the song and get to the part about people coming on board, my association switches to the gangway of a ship I saw in Australia.

I also visualize verbs. The word "jumping" triggers a memory of jumping hurdles at the mock Olympics held at my elementary school. Adverbs often trigger inappropriate images -- "quickly" reminds me of Nestle's Quik -- unless they are paired with a verb, which modifies my visual image. For example, "he ran quickly" triggers an animated image of Dick from the first-grade reading book running fast, and "he walked slowly" slows the image down. As a child, I left out words such as "is," "the," and "it," because they had no meaning by themselves. Similarly, words like "of," and "an" made no sense. Eventually I learned how to use them properly, because my parents always spoke correct English and I mimicked their speech patterns. To this day certain verb conjugations, such as "to be," are absolutely meaningless to me.

When I read, I translate written words into color movies or I simply store a photo of the written page to be read later. When I retrieve the material, I see a photocopy of the page in my imagination. I can then read it like a Teleprompter. It is likely that Raymond, the autistic savant depicted in the movie Rain Man, used a similar strategy to memorize telephone books, maps, and other information. He simply photocopied each page of the phone book into his memory. When he wanted to find a certain number, he just scanned pages of the phone book that were in his mind. To pull information out of my memory, I have to replay the video. Pulling facts up quickly is sometimes difficult, because I have to play bits of different videos until I find the right tape. This takes time.

When I am unable to convert text to pictures, it is usually because the text has no concrete meaning. Some philosophy books and articles about the cattle futures market are simply incomprehensible. It is much easier for me to understand written text that describes something that can be easily translated into pictures. The following sentence from a story in the February 21, 1994, issue of Time magazine, describing the Winter Olympics figure-skating championships, is a good example: "All the elements are in place -- the spotlights, the swelling waltzes and jazz tunes, the sequined sprites taking to the air." In my imagination I see the skating rink and skaters. However, if I ponder too long on the word "elements," I will make the inappropriate association of a periodic table on the wall of my high school chemistry classroom. Pausing on the word "sprite" triggers an image of a Sprite can in my refrigerator instead of a pretty young skater.

Teachers who work with autistic children need to understand associative thought patterns. An autistic child will often use a word in an inappropriate manner. Sometimes these uses have a logical associative meaning and other times they don't. For example, an autistic child might say the word "dog" when he wants to go outside. The word "dog" is associated with going outside. In my own case, I can remember both logical and illogical use of inappropriate words. When I was six, I learned to say "prosecution." I had absolutely no idea what it meant, but it sounded nice when I said it, so I used it as an exclamation every time my kite hit the ground. I must have baffled more than a few people who heard me exclaim "Prosecution!" to my downward-spiraling kite.

Discussions with other autistic people reveal similar visual styles of thinking about tasks that most people do sequentially. An autistic man who composes music told me that he makes "sound pictures" using small pieces of other music to create new compositions. A computer programmer with autism told me that he sees the general pattern of the program tree. After he visualizes the skeleton for the program, he simply writes the code for each branch. I use similar methods when I review scientific literature and troubleshoot at meat plants. I take specific findings or observations and combine them to find new basic principles and general concepts.

My thinking pattern always starts with specifics and works toward generalization in an associational and nonsequential way. As if I were attempting to figure out what the picture on a jigsaw puzzle is when only one third of the puzzle is completed, I am able to fill in the missing pieces by scanning my video library. Chinese mathematicians who can make large calculations in their heads work the same way. At first they need an abacus, the Chinese calculator, which consists of rows of beads on wires in a frame. They make calculations by moving the rows of beads. When a mathematician becomes really skilled, he simply visualizes the abacus in his imagination and no longer needs a real one. The beads move on a visualized video abacus in his brain.

Abstract Thought

Growing up, I learned to convert abstract ideas into pictures as a way to understand them. I visualized concepts such as peace or honesty with symbolic images. I thought of peace as a dove, an Indian peace pipe, or TV or newsreel footage of the signing of a peace agreement. Honesty was represented by an image of placing one's hand on the Bible in court. A news report describing a person returning a wallet with all the money in it provided a picture of honest behavior.

The Lord's Prayer was incomprehensible until I broke it down into specific visual images. The power and the glory were represented by a semicircular rainbow and an electrical tower. These childhood visual images are still triggered every time I hear the Lord's Prayer. The words "thy will be done" had no meaning when I was a child, and today the meaning is still vague. Will is a hard concept to visualize. When I think about it, I imagine God throwing a lightning bolt. Another adult with autism wrote that he visualized "Thou art in heaven" as God with an easel above the clouds. "Trespassing" was pictured as black and orange NO TRESPASSING signs. The word "Amen" at the end of the prayer was a mystery: a man at the end made no sense.

As a teenager and young adult I had to use concrete symbols to understand abstract concepts such as getting along with people and moving on to the next steps of my life, both of which were always difficult. I knew I did not fit in with my high school peers, and I was unable to figure out what I was doing wrong. No matter how hard I tried, they made fun of me. They called me "workhorse," "tape recorder," and "bones" because I was skinny. At the time I was able to figure out why they~ called me "workhorse" and "bones," but "tape recorder" puzzled me. Now I realize that I must have sounded like a tape recorder when I repeated things verbatim over and over. But back then I just could not figure out why I was such a social dud. I sought refuge in doing things I was good at, such as working on reroofing the barn or practicing my riding prior to a horse show. Personal relationships made absolutely no sense to me until I developed visual symbols of doors and windows. It was then that I started to understand concepts such as learning the give-and-take of a relationship. I still wonder what would have happened to me if I had not been able to visualize my way in the world.

The really big challenge for me was making the transition from high school to college. People with autism have tremendous difficulty with change. In order to deal with a major change such as leaving high school, I needed a way to rehearse it, acting out each phase in my life by walking through an actual door, window, or gate. When I was graduating from high school, I would go and sit on the roof of my dormitory and look up at the stars and think about how I would cope with leaving. It was there I discovered a little door that led to a bigger roof while my dormitory was being remodeled. While I was still living in this o1d New England house, a much larger building was being constructed over it. One day the carpenters tore out a section of the o1d roof next to my room. When I walked out, I was now able to look up into the partially finished new building. High on one side was a small wooden door that led to the new roof. The building was changing and it was now time for me to change too. I could relate to that. I had found the symbolic key.

When I was in college, I found another door to symbolize getting ready for graduation. It was a small metal trap door that went out onto the flat roof of the dormitory. I had to actually practice going through this door many times. When I finally graduated from Franklin Pierce, I walked through a third, very important door, on the library roof.

I no longer use actual physical doors or gates to symbolize each transition in my life. When I reread years of diary entries while writing this book, a clear pattern emerged. Each door or gate enabled me to move on to the next level. My life was a series of incremental steps. I am often asked what the single breakthrough was that enabled me to adapt to autism. There was no single breakthrough. It was a series of incremental improvements. My diary entries show very clearly that I was fully aware that when I mastered one door, it was only one step in a whole series.

April 22, 1970

Today everything is completed at Franklin Pierce College and it is now time to walk through the little door in the library. I ponder now about what I should leave as a message on the library roof for future people to find. I have reached the top of one step and I am now at the bottom step of graduate school. For the top of the building is the highest point on campus and I have gone as far as I can go now. I have conquered the summit of FPC. Higher ones still remain unchallenged. - Class 70

I went through the little door tonight and placed the plaque on the top of the library roof. I was not as nervous this time. I had been much more nervous in the past. Now I have already made it and the little door and the mountain had already been climbed. The conquering of this mountain is only the beginning for the next mountain.

The word commencement means beginning and the top of the library is the beginning of graduate school. It is human nature to strive, and this is why people will climb mountains. The reason why is that people strive to prove that they could do it.

After all, why should we send a man to the moon? The only real justification is that it is human nature to keep striving out. Man is never satisfied with one goal he keeps reaching. The real reason for going to the library roof was to prove that I could do it.

During my life I have been faced with five or six major doors or gates to go through. I graduated from Franklin Pierce, a small liberal arts college, in 1970, with a degree in psychology, and moved to Arizona to get a Ph.D. As I found myself getting less interested in psychology and more interested in cattle and animal science, I prepared myself for another big change in my life -- switching from a psychology major to an animal science major. On May 8, 1971, I wrote:

I feel as if I am being pulled more and more in the farm direction. I walked through the cattle chute gate but I am still holding on tightly to the gate post. The wind is blowing harder and harder and I feel that I will let go of the gate post and go back to the farm; at least for a while. Wind has played an important part in many of the doors. On the roof, the wind was blowing. Maybe this is a symbol that the next level that is reached is not ultimate and that I must keep moving on. At the party [a psychology department party] I felt completely out of place and it seems as if the wind is causing my hands to slip from the gate post so that I can ride free on the wind.

At that time I still struggled in the social arena, largely because I didn't have a concrete visual corollary for the abstraction known as "getting along with people." An image finally presented itself to me while I was washing the bay window in the cafeteria (students were required to do jobs in the dining room). I had no idea my job would take on symbolic significance when I started. The bay window consisted of three glass sliding doors enclosed by storm windows. To wash the inside of the bay window, I had to crawl through the sliding door. The door jammed while I was washing the inside panes, and I was imprisoned between the two windows. In order to get out without shattering the door, I had to ease it back very carefully. It struck me that relationships operate the same way. They also shatter easily and have to be approached carefully. I then made a further association about how the careful opening of doors was related to establishing relationships in the first place. While I was trapped between the windows, it was almost impossible to communicate through the glass. Being autistic is like being trapped like this. The windows symbolized my feelings of disconnection from other people and helped me cope with the isolation. Throughout my life, door and window symbols have enabled me to make progress and connections that are unheard of for some people with autism.

In more severe cases of autism, the symbols are harder to understand and often appear to be totally unrelated to the things they represent. D. Park and P. Youderian described the use of visual symbols and numbers by Jessy Park, then a twelve-year-old autistic girl, to describe abstract concepts such as good and bad. Good things, such as rock music, were represented by drawings of four doors and no clouds. Jessy rated most classical music as pretty good, drawing two doors and two clouds. The spoken word was rated as very bad, with a rating of zero doors and four clouds. She had formed a visual rating system using doors and clouds to describe these abstract qualities. Jessy also had an elaborate system of good and bad numbers, though researchers have not been able to decipher her system fully.

Many people are totally baffled by autistic symbols, but to an autistic person they may provide the only tangible reality or understanding of the world. For example, "French toast" may mean happy if the child was happy while eating it. When the child visualizes a piece of French toast, he becomes happy. A visual image or word becomes associated with an experience. Clara Park, Jessy's mother, described her daughter's fascination with objects such as electric blanket controls and heaters. She had no idea why the objects were so important to Jessy, though she did observe that Jessy was happiest, and her voice was no longer a monotone, when she was thinking about her special things. Jessy was able to talk, but she was unable to tell people why her special things were important. Perhaps she associated electric blanket controls and heaters with warmth and security. The word "cricket" made her happy, and "partly heard song" meant "I don't know." The autistic mind works via these visual associations. At some point in Jessy's life, a partly heard song was associated with not knowing.

Ted Hart, a man with severe autism, has almost no ability to generalize and no flexibility in his behavior. His father, Charles, described how on one occasion Ted put wet clothes in the dresser after the dryer broke. He just went on to the next step in a clothes-washing sequence that he had learned by rote. He has no common sense. I would speculate that such rigid behavior and lack of ability to generalize may be partly due to having little or no ability to change or modify visual memories. Even though my memories of things are stored as individual specific memories, I am able to modify my mental images. For example, I can imagine a church painted in different colors or put the steeple of one church onto the roof of another; but when I hear somebody say the word "steeple," the first church that I see in my imagination is almost always a childhood memory and not a church image that I have manipulated. This ability to modify images in my imagination helped me to learn how to generalize.

Today, I no longer need door symbols. Over the years I have built up enough real experiences and information from articles and books I have read to be able to make changes and take necessary steps as new situations present themselves. Plus, I have always been an avid reader, and I am driven to take in more and more information to add to my video library. A severely autistic computer programmer once said that reading was "taking in information." For me, it is like programming a computer.

Visual Thinking and Mental Imagery

Recent studies of patients with brain damage and of brain imaging indicate that visual and verbal thought may work via different brain systems. Recordings of blood flow in the brain indicate that when a person visualizes something such as walking through his neighborhood, blood flow increases dramatically in the visual cortex, in parts of the brain that are working hard. Studies of brain-damaged patients show that injury to the left posterior hemisphere can stop the generation of visual images from stored long-term memories, while language and verbal memory are not impaired. This indicates that visual imagery and verbal thought may depend on distinct neurological systems.

The visual system may also contain separate subsystems for mental imagery and image rotation. Image rotation skills appear to be located on the right side of the brain, whereas visual imagery is in the left rear of the brain. In autism, it is possible that the visual system has expanded to make up for verbal and sequencing deficits. The nervous system has a remarkable ability to compensate when it is damaged. Another part can take over for a damaged part.

Recent research by Dr. Pascual-Leone at the National Institutes of Health indicates that exercising a visual skill can make the brain's motor map expand. Research with musicians indicates that real practice on the piano and imagining playing the piano have the same effect on motor maps, as measured by brain scans. The motor maps expand during both real piano playing and mental imagery; random pushing of the keys has no effect. Athletes have also found that both mental practice and real practice can improve a motor skill. Research with patients with damage to the hippocampus has indicated that conscious memory of events and motor learning are separate neurological systems. A patient with hippocampal damage can learn a motor task and get better with practice, but each time he practices he will have no conscious memory of doing the task. The motor circuits become trained, but damage to the hippocampus prevents the formation of new conscious memories. Therefore, the motor circuits learn a new task, such as solving a simple mechanical puzzle, but the person does not remember seeing or doing the puzzle. With repeated practice, the person gets better and better at it, but each time the puzzle is presented, he says he has never seen it before.

I am fortunate in that I am able to build on my library of images and visualize solutions based on those pictures. However, most people with autism lead extremely limited lives, in part because they cannot handle any deviation from their routine. For me, every experience builds on the visual memories I carry from prior experience, and in this way my world continues to grow.

About two years ago I made a personal breakthrough when I was hired to remodel a meat plant that used very cruel restraint methods during kosher slaughter. Prior to slaughter, live cattle were hung upside down by a chain attached to one back leg. It was so horrible I could not stand to watch it. The frantic bellows of terrified cattle could be heard in both the office and the parking lot. Sometimes an animal's back leg was broken during hoisting. This dreadful practice totally violated the humane intent of kosher slaughter. My job was to rip out this cruel system and replace it with a chute that would hold the animal in a standing position while the rabbi performed kosher slaughter. Done properly, the animal should remain calm and would not be frightened.

The new restraining chute was a narrow metal stall which held one steer. It was equipped with a yoke to hold the animal's head, a rear pusher gate to nudge the steer forward into the yoke, and a belly restraint which was raised under the belly like an elevator. To operate the restrainer, the operator had to push six hydraulic control levers in the proper sequence to move the entrance and discharge gates as well as the head- and body-positioning devices. The basic design of this chute had been around for about thirty years, but I added pressure-regulating devices and changed some critical dimensions to make it more comfortable for the animal and to prevent excessive pressure from being applied.

Prior to actually operating the chute at the plant, I ran it in the machine shop before it was shipped. Even though no cattle were present, I was able to program my visual and tactile memory with images of operating the chute. After running the empty chute for five minutes, I had accurate mental pictures of how the gates and other parts of the apparatus moved. I also had tactile memories of how the levers on this particular chute felt when pushed. Hydraulic valves are like musical instruments; different brands of valves have a different feel, just as different types of wind instruments do. Operating the controls in the machine shop enabled me to practice later via mental imagery. I had to visualize the actual controls on the chute and, in my imagination, watch my hands pushing the levers. I could feel in my mind how much force was needed to move the gates at different speeds. I rehearsed the procedure many times in my mind with different types of cattle entering the chute.

On the first day of operation at the plant, I was able to walk up to the chute and run it almost perfectly. It worked best when I operated the hydraulic levers unconsciously, like using my legs for walking. If I thought about the levers, I got all mixed up and pushed them the wrong way. I had to force myself to relax and just allow the restrainer to become part of my body, while completely forgetting about the levers. As each animal entered, I concentrated on moving the apparatus slowly and gently so as not to scare him. I watched his reactions so that I applied only enough pressure to hold him snugly. Excessive pressure would cause discomfort. If his ears were laid back against his head or he struggled, I knew I had squeezed him too hard. Animals are very sensitive to hydraulic equipment. They feel the smallest movement of the control levers.

Through the machine I reached out and held the animal. When I held his head in the yoke, I imagined placing my hands on his forehead and under his chin and gently easing him into position. Body boundaries seemed to disappear, and I had no awareness of pushing the levers. The rear pusher gate and head yoke became an extension of my hands.

People with autism sometimes have body boundary problems. They are unable to judge by feel where their body ends and the chair they are sitting on or the object they are holding begins, much like what happens when a person loses a limb but still experiences the feeling of the limb being there. In this case, the parts of the apparatus that held the animal felt as if they were a continuation of my own body, similar to the phantom limb effect. If I just concentrated on holding the animal gently and keeping him calm, I was able to run the restraining chute very skillfully.

During this intense period of concentration I no longer heard noise from the plant machinery. I didn't feel the sweltering Alabama summer heat, and everything seemed quiet and serene. It was almost a religious experience. It was my job to hold the animal gently, and it was the rabbi's job to perform the final deed. I was able to look at each animal, to hold him gently and make him as comfortable as possible during the last moments of his life. I had participated in the ancient slaughter ritual the way it was supposed to be. A new door had been opened. It felt like walking on water.

2006 Update to Chapter 1

Since I wrote Thinking in Pictures, brain imaging studies have provided more insights into how the brain of a person on the autism/Asperger spectrum processes information. Nancy Minshew at Carnegie Mellon University in Pittsburgh has found that normal brains tend to ignore the details while people on the autism spectrum tend to focus on the details instead of larger concepts. To view this phenomenon, she had normal, Asperger, and autistic people read sentences while they were in a scanner. The autistic brain was most active in the part of the brain that processes the individual words while the normal brain was most active in the part that analyzes the whole sentence. The Asperger brain was active in both areas. Eric Courchesne at the University of California in San Diego states that autism may be a disorder of brain circuit disconnections. This would affect the ability to integrate detailed information from lower parts of the brain where sensory based memories are stored with higher level information processing in the frontal cortex. Lower level processing systems may be spared or possibly enhanced. He discovered in an autistic person that the only parts of the brain that are normal are the visual cortex and the areas in the rear of the brain that store memories. This finding helps explain my visual thinking. Scans of autistic brains have indicated that the white matter in the frontal cortex is overgrown and abnormal. Dr. Courchesne explains that white matter is the brain's "computer cables" connecting up different parts of the brain while the gray matter forms the information processing circuits. Instead of growing normally and connecting various parts of the brain together, the autistic frontal cortex has excessive overgrowth much like a thicket of tangled computer cables. In the normal brain, reading a word and speaking a word are processed in different parts of the brain. Connecting circuits between these two areas makes It possible to simultaneously process information from both of them. Both Courchesne and Minshew agree that a basic problem in both autistic and Asperger brains is a failure of the "computer cables" to fully connect together the many different localized brain systems. Local systems may have normal or enhanced internal connections but the long distance connections between the different local systems may be poor.

I am now going to use what I call visual symbol imagery to help you understand how the different parts of the normal brain communicate with each other. Think of the normal brain as a big corporate office building. All the different departments such as legal, accounting, advertising, sales, and the CEO's office are connected together by many communication systems such as e-mail, telephones, fax machines, and electronic messaging. The autistic/Asperger brain is like an office building where some of the interdepartmental communication systems are not hooked up. Minshew calls this underconnectivity in the brain. More systems would be hooked up in an Asperger brain than in the brain of a low-functioning individual. The great variability in autistic/ Asperger symptoms probably depends on which "cables" get connected and which "cables" do not get connected. Poor communication between brain departments is likely the cause of uneven skills. People on the spectrum are often good at one thing and bad at something else. To use the computer cable analogy, the limited number of good cables may connect up one area and leave the other areas with poor connections.
Develop Talents in Specialized Brains
When I wrote Thinking in Pictures I thought most people on the autism spectrum were visual thinkers like me. After talking to hundreds of families and individuals with autism or Asperger's, I have observed that there are actually different types of specialized brains. All people on the spectrum think in details, but there are three basic categories of specialized brains. Some individuals may be combinations of these categories.

1. Visual thinkers, like me, think in photographically specific images. There are degrees of specificity of visual thinking. I can test run a machine in my head with full motion. Interviews with nonautistic visual thinkers indicated that they can only visualize still images. These images may range in specificity from images of specific places to more vague conceptual images. Learning algebra was impossible and a foreign language was difficult. Highly specific visual thinkers should skip algebra and study more visual forms of math such as trigonometry or geometry. Children who are visual thinkers will often be good at drawing, other arts, and building things with building toys such as Lego's. Many children who are visual thinkers like maps, flags, and photographs. Visual thinkers are well suited to jobs in drafting, graphic design, training animals, auto mechanics, jewelry making, construction, and factory automation.

2. Music and math thinkers think in patterns. These people often excel at math, chess, and computer programming. Some of these individuals have explained to me that they see patterns and relationships between patterns and numbers instead of photographic images. As children they may play music by ear and be interested in music. Music and math minds often have careers in computer programming, chemistry, statistics, engineering, music, and physics. Written language is not required for pattern thinking. The pre-literate Incas used complex bundles of knotted cords to keep track of taxes, labor, and trading among a thousand people.

3. Verbal logic thinkers think in word details. They often love history, foreign languages, weather statistics, and stock market reports. As children they often have a vast knowledge of sports scores. They are not visual thinkers and they are often poor at drawing. Children with speech delays are more likely to become visual or music and math thinkers. Many of these individuals had no speech delays, and they became word specialists. These individuals have found successful careers in language translation, journalism, accounting, speech therapy, special education, library work, or financial analysis.

Since brains on the autistic spectrum are specialized, there needs to be more educational emphasis on building up their strengths instead of just working on their deficits. Tutoring me in algebra was useless because there was nothing for me to visualize. If I have no picture, I have no thought. Unfortunately I never had an opportunity to try trigonometry or geometry. Teachers and parents need to develop the child's talents into skills that can eventually turn into satisfying jobs or hobbies.

Concept Formation

All individuals on the autism/Asperger spectrum have difficulties with forming concepts. Problems with conceptual thought occur in all of the specialized brain types. Conceptual thinking occurs in the frontal cortex. The frontal cortex is analogous to the CEO's office in a corporation. Researchers refer to frontal cortex deficits as problems with execution function. In normal brains, "computer cables" from all parts of the brain converge on the frontal cortex. The frontal cortex integrates information fi7om thinking, emotional, and sensory parts of the brain. The degree of difficulty in forming concepts is probably related to the number and type of 11 computer cables" that are not hooked up. Since my CEO's office has poor "computer" connections, I had to use the "graphic designers" in my "advertising department" to form concepts by associating visual details into categories. Scientific research supports my idea. Detailed visual and musical memories reside in the lower primary visual and auditory cortex and more conceptual thinking is in association areas where inputs from different parts of the brain are merged.

Categories are the beginning of concept formation. Nancy Minshew found that people with autism can easily sort objects into categories such as red or blue, but they have difficulty thinking up new categories for groups of common objects. If I put a variety of common things on a table such as staplers, pencils, books, an envelope, a clock, hats, golf balls, and a tennis racquet, and asked an individual with autism to pick out objects containing paper, they could do it. However, they often have difficulty when asked to make tip new categories. Teachers should work on teaching flexibility of thinking by playing a game where the autistic individual is asked to make up new categories for the objects like objects containing metal, or objects used in sports. Then the teacher should get the person to explain the reason for putting an object in a specific category.

When I was a child I originally categorized dogs from cats by size. That no longer worked when our neighbors got a small dachshund. I had to learn to categorize small dogs fi7om cats by finding a visual feature that all the dogs had and none of the cats had. All dogs, no matter how small, have the same nose. This is sensory-based thinking, not language-based. The animals could also be categorized by sound, barking versus meowing. A lower functioning person may categorize them by smell or touch because those senses provide more accurate information. Dividing information into distinct categories is a fundamental property of the nervous system. Studies with bees, rats, and monkeys all indicate that information is placed into categories with sharp boundaries. French scientists recorded signals from the frontal cortex of a monkey's brain while it was looking at computer generated images of dogs that gradually turned into cats. There was a distinct change in the brain signal when the category switched to cat. In the frontal cortex, the animal image was either a dog or a cat. When categorizing cats from dogs by size no longer worked for me, I had to form a new category of nose type. Research by Itzahak Fried at UCLA has shown that individual neurons learn to respond to specific categories. Recordings taken from patients undergoing brain surgery showed that one neuron may respond only to pictures of food and another neuron win respond only to pictures of animals. This neuron will not respond to pictures of people or objects. In another patient, a neuron in the hippocampus responded to pictures of a movie actress both in and out of costume but it did not respond to pictures of other women. The hippocampus is like the brain's file finder for locating information in stored memory.

Becoming More Normal

More knowledge makes me act more normal. Many people have commented to me that I act much less autistic now than I did ten years ago. A person who attended one of my talks in 2005 wrote on my evaluation, "I saw Temple in 1996, it was fun to see the poise and presentation manner she has gained over the years." My mind works Just like an Internet search engine that has been set to access only images. The more pictures I have stored in the Internet inside my brain the more templates I have of how to act in a new situation. More and more information can be placed in more and more categories. The categories can be placed in trees of master categories with many subcategories. For example, there are jokes that make people laugh and jokes that do not work.

There is then a subcategory of jokes that can only be told to close friends. When I was a teenager I was called "tape recorder" because I used scripted lines. As I gained experience, my conversation became less scripted because I could combine new information in new ways. To help understand the autistic brain I recommend that teachers and parents should play with an Internet search engine such as Google for images. It will give people who are more verbal thinkers an understanding into how visual associative thinking works. People with music and math minds have a search engine that finds associations between patterns and numbers.

The Asperger individual who is a verbal logic thinker uses verbal categories. For example, Dr. Minshew had an Asperger patient who had a bad side effect with a medication. Explaining the science of why he should try a different medication was useless. However, he became willing to try a new medication after he was simply told, the pink pills made you sick and I want you to try the blue pills. He agreed to try the blue pills.

The more I learn, the more I realize more and more that how I think and feel is different. My thinking is different from a normal person, but it is also very different from the verbal logic nonvisual person with Asperger's. They create word categories instead of picture categories. The one common denominator of all autistic and Asperger thinking is that details are associated into categories to form a concept. Details are assembled into concepts like putting a jigsaw puzzle together. The picture on the puzzle can be seen when only 20 percent of the puzzle is put together, forming a big picture.