His behavioral therapist, Kelly Mulligan, waits as the boy's mother negotiates a deal. Minutes later, Jared walks quietly downstairs to his therapy room.

Two years ago, this scene would have resembled something out of parent hell.

Back then, Bill and Jennifer Dick never even dared take their son to a restaurant. His behavior wasn't like just any out-of-control brat. He repeatedly dashed full-speed down aisles and did headstands in the booths, kicking strangers.

Jared has autism, a term describing not only a mysterious brain disorder of diminished social and communication abilities but also a parental nightmare.

At least, the Dicks might tell you, Jared used to have autism.

Downstairs, Mulligan teaches the final skills Jared will need for kindergarten, which is fast approaching.

For his parents, Jared's controversial educational therapy has been a prolonged, expensive and draining ordeal, but one they credit with saving their son from an isolated life, years of special-education classes and, ultimately, adult disability work programs.

 

"With this therapy, it's given us our son back," Jennifer, 28, said.

The family's out-of-pocket-costs so far total $50,000, of which the grandparents paid $10,000. Even after getting a second mortgage, the Dicks' outstanding debts total $16,000.

But she would do it again, Jennifer said, in a heartbeat, just to have her son be able to tell her, "Mom, I love you."

It's not a phrase parents with an autistic child are accustomed to hearing.

This is a story of one family's triumph, but its implications stretch far beyond to the increasing thousands of children diagnosed with autism each year. They reach also to taxpayers, now paying nearly $100 billion annually for the care of autistic adults.

Their story begins two years ago with the birth of the Dicks' second son, Caleb.

Jared, then 21/2, couldn't have cared less about having a baby brother. Jared's "terrible 2's," Jennifer recalled, were out of control and getting worse.

The grandparent then caring for Jared as his mother worked as a nurse told her she was getting too old to do day care any longer.

It was probably a kind way of saying their child was unmanageable.

Jared had other oddities. He often repeated the words of others. He once lined up toy cars at the top of a slide and pushed them down one by one for an hour. He was aloof and withdrawn.

But the Dicks never noticed -- or admitted to themselves -- just how far their child had fallen behind others.

At his new day care, however, it wasn't long before a director called with concerns. Later testing found Jared was straddling the border of someone mildly to moderately autistic.

"I was devastated," Jennifer said. "The vision you have for your child is gone."

At age 3, Jared's language skills were nearly two years behind normal development. His IQ score of 65 placed his intelligence well below normal.

Bill's health insurance policy excludes payment for autism treatment, but there was some financial help available. For children under age 3, there is early intervention public assistance. Federal law guarantees a free, appropriate public education for children between the ages of 3 and 21. Parents and lawmakers, however, can differ greatly over the meaning of "appropriate public education."

Jared soon entered an early assistance class with about nine other children, some having different types of disabilities, Jennifer said.

As she read up on the various autism treatment programs available, applied behavioral analysis emerged as the one with the most proven success record. It was also extremely expensive, requiring one-on-one instruction for 40 hours each week over a period of years. Therapy costs would reach as high as $115 per hour.

Bill's reaction: "That's not a possibility," Jennifer said.

But they soon agreed that the school district's early childhood special-education program was failing Jared, and time was running short. Jared needed not a Chevy education if he was going to have a chance at success, Jennifer said, but a Cadillac education.

The Dicks put Jared in a program now operating under the name of LIFE Midwest. The small organization began providing intensive applied behavioral analysis in Nebraska about two years ago.

"As soon as we got him out of ECSE program, he was almost exponentially better," Bill said. They came to think of the costs as paying for their child's college education 15 years early, said Bill, 33.

Before 1987, the widely held prognosis for infantile autism was of certain and severe lifelong disability.

That was also the year Los Angeles clinical psychologist Ivar Lovaas published findings from a landmark study of autistic children. Lovaas subjected autistic children to the proven techniques of applied behavioral analysis, but for 40 hours weekly, lasting two years. At the end of the experiment, half of those who received the intensive training no longer met the criteria for an autism diagnosis. Even among those who did, improvement was markedly greater in comparison to their peers.

The study findings remained relatively obscure, but applied behavioral analysis gained a boost in the early 1990s with Catherine Maurice's autobiographical account, "Let Me Hear Your Voice." Her story tells of struggles to find effective treatment for her two autistic children, now thriving, she claims, due to applied behavioral analysis.

In the world of autism today, there exist a large number of treatment approaches. They include:

• Applied behavioral analysis: It operates under the principle that behavior rewarded is more likely to be repeated than behavior ignored.

• Discrete trial training:A subset of ABA that involves working one-on-one with trained professionals 30 to 40 hours each week, moving gradually from simple to complex skills.

• Treatment and education of autistic and related communication handicapped children:It centers on adapting the learning environment to the child rather than the child to the environment.

• Picture exchange communication systems: It uses ABA methods in teaching children to exchange a picture for something they want.

• Social stories: Uses storytelling to help children learn appropriate responses in common social situations.

In addition to these and other competing disciplines, there are numerous fads such as equine therapy, dolphin therapy and mirror behavior, said Patricia Krantz, a psychologist with the Princeton Child Development Institute of New Jersey.

As in the early days of cancer treatment, she said, "People are desperate. ... We don't have a clear-cut 100 percent intervention. ... We cannot fix all of the children."

The Princeton center also uses applied behavioral analysis, roughly replicating the same success rate demonstrated by Lovaas 16 years ago. About 50 percent of the children who begin the program before age 5 enter mainstream school, Krantz said. Other autism centers using science-based approaches achieve similar outcomes, she said.

But even applied behavioral analysis has it critics. Some claim it is too intense for young autistic children and too mechanical.

What sets off applied behavior analysis from other approaches, Krantz said, is the scientific data behind it. That also is the conclusion of a New York State Department of Health Early Intervention report, available at www.health.state.ny.us/nysdoh/ eip/menu.htm.

Other approaches may be successful, Krantz said, but the research has not been performed to prove it.

But are the graduates of this program really "healed," or do their behavioral changes contain robotic qualities?

Not even Jennifer Dick, who has watched her child's progress, knows for certain. Jared has, she said, a better chance of success because his behaviors have been brought under control.

He knows "that he can't go up to people and scream."

But does he "understand" that it's bad to scream or has the impulse been psychologically conditioned out of him?

One piece of Jared's education involves teaching him how to play. It began with tasks such as having Jared push a toy car around a table. Later he was taught to add the "vrrooom" sound.

Jared now plays, making the noise without prompting.

"I don't know if he's imagining or if he knows that's what he's supposed to do," Jennifer said. She hopes it's spontaneous.

Jared recently showed her something that he built using Legos. "This is where the cows are," he told her. "The horses are up top. They had to climb a ladder to get up there."

It seems genuine, she said.

Krantz offers her perspective.

The oldest graduates of the Princeton program are now in their 20s. Among the 50 percent of them who failed to progress far enough to lose their autism label, she said, there is a range of disabilities. Many now work in supported employment. Among this group, she said, behavioral changes are probably robotic.

But if you speak with the 50 percent who overcame their autism label, she said, "They're you and me."

Some are teachers. Some are in graduate school.

"One is a nightclub comedian," she said.

"If you saw them at a cocktail party, you wouldn't be able to pick them out -- with the exception of one, who wears his pants too high, but so does his dad."

She recently discussed the movie "The Red Violin" with one of these former autistic children.

"His review was more insightful than mine," she said.

Anytime we learn anything new, it's robotic, she said.

"My French is robotic," Krantz said. With more study it might progress into something organic.

"I've asked a lot of graduates from our program -- college graduates -- about their perceptions," she said.

They say things like, "It was hard to make kids like me," she said. "They don't have this large, effusive language about what it was like."

Others don't remember anything.

"Some want to see the baseline tapes of when they were little," she said. After watching them, they say things like: "I don't even recognize that person. I don't have any memory of this."

The brain mechanisms responsible for this remarkable transformation may be similar to the aftermath of a brain injury.

Scientists have come to believe that the brain continually rewires itself, laying down new circuitry. But research is also finding that there may be a brief period during which the young, developing brain is most changeable.

From work with people who have suffered brain injuries, they know that much more can be done to retrain the brains of younger people than older people. Intensive therapy may involve training other parts of the brain to compensate for the failing provided by nature.

Almost all of the Princeton success stories entered the program before age 5, Krantz said. Only a few who came in at age 6 have been mainstreamed, she said.

"That's why I see us as racing against the clock. That's why we work with children as young as we do."

For most, the clock expires before they even enter the race. According to the Association for Science in Autism Treatment, possibly 90 percent of children with autism do not receive effective early intervention.

It isn't necessarily for economic reasons. A cost benefit study done by Pennsylvania a few years ago showed that early intensive training could result in a savings of $656,000 to $1 million per child between ages 3 and 55.

But changing the system would shift the costs. Those on the losing end naturally resist.

Some people around the country have had good luck with getting their school system to pay for their child's intensive training, Jennifer said.

"I'm not sure I want to fight the school system," she added.

Last January, Jared retested and scored 109 on his IQ test. She wishes now that the school wasn't even aware of his one-time disability.

Still, as the family exhausted all of its funds on Jared, Jennifer held her breath, hoping her younger son showed no signs of his brother's problem. She watched with relief as Caleb talked to imaginary people on his toy telephone and kissed his stuffed puppy, saying, "Woof, woof, woof."

"We've exhausted everything we had to get Jared through this," she said. "There is no way we could do it twice. No way."

Reach Mark Andersen at 473-7238 or mandersen@journalstar.com.