Putting a face on autism

A new case is diagnosed every 20 minutes, but there is no treatment or cure for this disorder.

As doctors continue to seek answers and cures, children around the world learn to live with autism and help put a face on an illness doctors know little about.

Harley Hines is a 10-year-old student at Jessie Mae Monroe Elementary School who lives with Asperger’s disorder—a developmental disorder that mainly affects a child’s socialization, communication, and imagination. It is classified as an autistic spectrum disorder and affects a variety of people in different ways. Hans Asperger, an Austrian physician, first diagnosed the disorder in 1944.

Asperger’s is often referred to as a “hidden disability.” There are no physical signs of the disorder.

Harley’s mother, Paula, said he acted “a little quirky” from birth. At age 4, Harley began to read.

He memorized every bone in the human body by reading and studying one of Paula’s old textbooks.

At age 5, Harley could read “Harry Potter” and other chapter books.

At age 6, his IQ was 130.

When Harley began school in Georgia, the quirks continued.

“We started noticing he didn’t develop socially like he should,” Paula said. “At first, we sort of pushed it off onto other things.”

Harley was abducted from his backyard when he was 2 years old, and afterward when teachers would raise their voices or punish him, he would have a shutdown, Paula said.

“I thought his reaction was the result of a flashback to that day,” she said.

But Harley had trouble with his classmates, too. He would

play by himself and get upset when other children did not want to play with him or play what he wanted.

Harley did not adjust well to the many changes throughout the daily school schedule.

“It was a traumatic experience for him,” Paula said. “They leave their primary classroom to go to music. He might have a shutdown because he would have to leave what he was really enjoying doing. He might sit there and not move. His shutdowns really became an issue.”

It was such an issue his teachers said he had behavioral issues and called Paula two to three times a week to come pick him up from school and take him home.

“It was getting to the point where he was spending more time at home than in school,” she said. “They just couldn’t deal with it.”

The school even contacted a social worker to evaluate Harley’s home life. They thought neglect might be a cause for his behavioral problems.

After the social worker found no problems at home, Paula decided to take matters into her own hands. She began working with Harley, figuring out ways to help him behave at school and complete his homework. Rewarding Harley with a new toy or treat helped keep him motivated enough to do his work at home and school.

“We put them in school and we try to make square pegs out of everybody,” Paula said. “If you’re round, you don’t fit. You’ve got to find a way to make each child fit.”

While Paula was not aware of Harley’s disability, she helped him establish a routine at school so he and his teachers could work together.

Harley’s quirks and behavioral issues came to light last year when Paula was taking an exceptional children college course.

“When I started studying the autism section, all of the sudden, it was like my baby was on those pages. I was reading about Harley,” she said.

Suddenly, the fact that Harley likes soft blankets and squishy pillows when he’s upset, that he is overly emotional, has shutdowns and his daily routine never changes, all made sense.

After working with a psychiatrist, Harley was diagnosed with Asperger’s disorder.

“Harley and I would talk about it,” she said. “I would tell him that Sir Isaac Newton had Asperger’s disorder so he could identify with people who have been success stories. He can see that it’s OK.”

Then last August, the Hines family moved to Brunswick County from Georgia when Harley’s father, Ross, was deployed to Iraq for his third tour.

“All of the sudden, he has a new house, a new place to live, new teachers, new kids around the house, everything in the world has changed,” Paula said.

Paula said after moving to Brunswick County, Harley became more emotional and the shutdowns became more frequent.

“This is the first time he’s been old enough to realize his daddy is gone,” she said. “I’ve had more times where he’d just sit down on the floor and cry.”

Harley had a hard time adjusting when he began the school year at Jessie Mae, and showed many of his old behavior issues when it came time for the standardized testing.

“One of the practice writing prompts was, ‘You’re riding your bicycle and it starts to fly. Finish the rest of the story.’ He wouldn’t write it because he said there’s no way it could ever happen.”

Creativity and imagination are hard concepts for people with Asperger’s, and Harley needed a boost to help him with the task. Harley picked out special pencils to use on the writing test.

“The pencils are inspiring because he picked them out and they are exciting to use,” Paula said.

“You’ve got that whole test in his head as being positive before he ever puts the pencil on the paper.”

And the pencils worked. When it came time to take the writing test, Harley spent the entire time writing and followed the prompt perfectly.

Paula said finding out what works for each child is the key to successfully living with Asperger’s.

“Each and every single one of them have a different set of rules,” she said. “They’re all different in their own special, unique way.”

Harley now sees a therapist and is given different tasks to work on at home and at school. Social interaction is at the top of the list.

Harley has a hard time making friends, Paula said. Spending time off the computer and interacting with others will help him with the social skills he needs and will help build his self-esteem.

Paula calls Harley’s disability a “hurdle he must learn to jump over,” and said she has nothing but high hopes for his future.

“He knows he can go out there and make a difference in the world,” she said. “I don’t want him going out thinking he can’t make a change and he can’t make a difference because he’s not like everybody else.”

Having Asperger’s allows Harley and other children a way to see the world in a unique way, and it is something people should learn to accept and appreciate, Paula said.

“Don’t cover it up—there’s nothing wrong with them,” Paula said.

“They’re great. They’re great in their own right. They’re just different. Celebrate the difference."