Autism is a rainbow of cognitive disorders whose victims are out of sync in a world that thrives on consistency.
For 17 years, Karl and Linda Peterson have been fighting — in courtrooms and schoolrooms, in doctors' offices and living rooms — to bring consistency to a child born to chaos.
On this Easter morning, a time of rebirth, James Peterson has never been closer to revealing himself as the young man his family prayed lay within the labyrinth of his autistic barriers.
On Good Friday, in Mechanicsville, James — the young man who for years wanted to be alone and barely spoke — went bowling with friends.
"We are on a long journey, and there is a long way still to go," said his mother, Linda, as James padded around the family's Hanover County home last week. "But the signs of accomplishment and growth we had always hoped were there have never been more obvious. He has become a new person from what he had been."
This month, James, 17, ended six years of schooling at Dominion School for Autism, which began in Westminster Presbyterian Church and is among the few intensive, hands-on learning and behavioral treatment centers in the area specializing in helping autistic children.
"James became someone who was incredible in wanting to engage, who thrives when he's congratulated, who grew with positive reinforcement and developed a strong sense of self-advocacy, which he'd never had before," said Jennifer Morgan, his teacher there.
His entry two weeks ago into Northstar Academy, a private school in Henrico County for special-needs children that expects a high degree of behavioral self-control, was a long-sought goal. "Years ago, I told myself if he ever was able to go there, I would be the happiest mom on Earth," Linda Peterson said.
Autism, which generally involves information-processing malfunctions and underdeveloped social skills, is surging among school-age children, with one in every 100 people believed to be affected, according to the Centers for Disease Control and Prevention. The frequency increases among boys. In Virginia, the number of public school children with a diagnosis of autism as their primary disability has grown from 2,710 in 2001 to 10,902 in 2009. This school year, preliminary figures from the state Department of Education indicate that the number has jumped to 11,704.
There is no explanation for the increase, which is universally accepted, but Virginia is beginning to awaken to the problem. This year, state legislators passed new laws that will require insurers to provide coverage for therapies for autistic children from 2 to 6 years old.
And federal court rulings have established new benchmarks for school systems, which must clearly show that autistic students are progressing. Otherwise, school systems face having to pay tens of thousands of dollars in annual tuition for schooling at private venues such as Dominion and the Faison School in Richmond.
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The Petersons of Hanover and the family of Courtney Tutwiler in Henrico have been at the vanguard of court actions that determined their respective school systems were not meeting federal mandates for treating disabled children. As a result, school systems across the state are becoming far more rigorous in their efforts to show educational gains.
"What those families have done for other families with special-needs children can never be repaid," said John Maloney, a longtime advocate for changes in state law and a spokesman for Autism Speaks in Virginia. "They have made a tremendous sacrifice. When you go up against a publicly funded adversary in court, it's your resources against theirs."
The Petersons initiated legal action against the Hanover school system in January 2006 in a case that was not resolved in their favor until July 2009. The dispute centered on Hanover's alleged failure to provide James an appropriate education and the system's refusal to pay $30,000 for his first year of schooling at Dominion after the family placed James there in 2005 without Hanover's agreement to pay.
"Basically, he was regressing," said Linda, whose engineer husband, Karl, amassed hundreds of pages of analytical data showing James' decline. For reasons the Petersons don't understand, the school system balked at paying the first-year tuition but agreed to pay costs for subsequent years.
U.S. District Judge Robert E. Payne, in groundbreaking opinions that set strict new standards for assessing a child's progress, ordered Hanover in 2009 not only to pay the tuition but also awarded the Peterson family more than $300,000 in legal fees for the years-long court fight.
"The Peterson case stands for the importance of objective empirical data when it comes to assessing progress of a child who suffers some form of learning disability," said Philip Carter Strother, the Peterson's Richmond lawyer. "Four years of litigation boils down to that."
James, he said, "is living proof that a child given appropriate services to address his learning disabilities and special needs can thrive and continue to grow to someday become an independent, functioning citizen in our society that we won't have to warehouse, that we won't have to spend society's resources through adulthood to care for."
Etched in the Peterson family's history is the unforgettable image of watching their son, alone and aloof on an elementary school playground at recess. To Karl and Linda, who were being told at the time that James was thriving and interacting well with others, the sight was a confirmation of neglect.
"When we started videotaping what was happening, they threatened to charge us with trespassing," Linda Peterson said.
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When James was 2, living then with his family in Texas, his mother worried about his failure to develop speech. But the doctor was reassuring.
"He just has a language delay," the doctor told her.
But James didn't really talk until he was 5, a year after a diagnosis of autism, which had come years late by today's standards.
"It is so important to get an early start," says Linda, who with Karl seems almost cosmically attuned to James' needs, whereabouts and emotions.
Since infancy, James has loved stacking objects in specific order; he recognizes patterns of letters or colors or shapes. He demonstrates a remarkable affinity for discerning the order and relationship between letters of the alphabet.
"He can spell anything," said his mother. "And he has become an incredibly good reader."
But in his early years, James rarely spoke, showed affection or played with others, traits that he exhibited to a somewhat lesser extent even with his parents and older brother. He seemed content simply existing in silence, immersed in some unfathomable, unreachable world of unknown design or expectation.
"We had less trouble because we learned to recognize what he wanted, but the communication was far less than it is now," Linda said.
Today, James has grown more expressive and more assertive, but speech comes in staccato bursts of brief phrases signaling discomfort or joy, disappointment or desire.
Seizures, usually months apart, are part of the family's scope of care and worry. There is no clear medical reason for their emergence, but Linda fears that taking James off a dairy- and wheat-free diet may have increased their frequency. She restored the limited diet but wonders whether more dietary changes are in order; the next seizure would come in another few months, based on their history.
"The meds don't work, and he hates them," she said. "He starts getting OCD, repeating 'I don't know, I don't know,'" she said, referring to obsessive-compulsive disorder traits that have increased because of the anti-seizure medication.
James is rarely far from supervision or at least observation, which his family accepts simply as part of life with him. At a Capital One program for autistic young adults, James thrived at filing tasks, creating a new system of cataloguing documents linked to their numerical similarities rather than color.
"I used to be so concerned when I'd find James in the bathroom stacking boxes of toothbrushes or something at 2 o'clock in the morning," said Karl. "Now I find him and say, 'Hey, great job.' "
Jigsaw puzzles are a snap, and boxes of them fill James' closet — stacked precisely.
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Karl Peterson, broad-shouldered and brilliant, moved his family to Hanover in 2001.
He was a key engineer with a predecessor company to the Qimonda chip plant in eastern Henrico, a multibillion-dollar facility that seemed to offer a lifetime of work and critical security for the family. Peterson was among the hundreds laid off when the plant closed in February 2009. The setback came as the federal court suit was at a critical juncture.
Three months after the job ended, Peterson was back at work, but he commutes now to Stafford County, where he's an acquisitions engineer for the federal government.
James' future, too, of course, is a huge matter, but the Petersons say they regard that issue not as an obstacle, merely another objective like learning to listen, controlling impulsiveness or speaking slowly.
"We will have James with us for a long time," said Linda, who is 55. "But we know that he is progressing enough to where if necessary he will be able to live independently in a group home sort of environment and will be able to work at certain sorts of tasks. That is of huge importance to us. We're not worried as much anymore."
The family's dedication is reflected, too, in the wishes of their older son, Nick, who attends James Madison University. "Nick says that he wants to work at something that will enable him to employ his brother. He wants to start some sort of company that will help James."
Far beyond the family, advocates such as Maloney say the Petersons should take a huge measure of credit for rapidly evolving changes in the way the state is responding to what he calls "the flood tide of autism in Virginia."
The sort of hands-on, one-on-one care from trained caregivers that James needed is finally becoming the standard statewide, Maloney said. Called Applied Behavior Analysis, the care uses specific measures of improvement and constant reinforcement.
"Until now, many, many school divisions were just winging it," said Maloney.
And great hope is being focused on the recently formed Virginia Commonwealth University Autism Center for Excellence, whose mission is to bring consistency to autism treatment in the classroom statewide.
The chairman of the advisory board is Stewart Roberson, Hanover's retiring school superintendent. He has a deep knowledge of the difficulties school systems have addressing the problematic autism disorder.
"I've never really sat down and talked with him," said Karl Peterson. "But he certainly knows who we are."
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