No Group Discount For Autism Care

By Susan DeFord
Washington Post Staff Writer
Sunday, June 3, 2007

Randy and Lynn Gaston received the distressing diagnosis not once but three times.

Their sons, Zachary, Hunter and Nicholas, are triplets, and as the brown-haired boys grew into toddlers, Lynn noticed how oddly they played, how little they babbled, how they cried inconsolably at doctor's offices and family gatherings.

Two years ago, when the boys were 4, specialists confirmed the Gastons' suspicions: The boys have varying degrees of autism, a neurological disorder that hampers communication and social interactions and can include obsessive-compulsive behavior.

"It was shocking," Lynn said, "but in my heart, I knew, yes, somebody finally sees it."

The diagnosis launched a transformation of the Gastons' lives. Now even mundane details of the daily routine are carefully orchestrated, driven by the boys' need for sameness: identical sheets on their beds, baths in the same order every night, the same kind of pizza from the same kind of box.

The Gastons rarely go out as a couple; it's difficult to find babysitters. The family has never eaten in a restaurant together, because crowded, unfamiliar environments sometimes make the boys anxious and upset. And the couple never get a full night's rest. Like many autistic children, the boys don't sleep well, going to bed at 8 p.m. and often waking for the day between 2 a.m. and 3 a.m.

A recent attempt to go to a park came to an abrupt halt when Zachary started yelling in the car. Lynn pulled over and found the reason: Hunter had taken off his shoes and socks, disrupting his brother's uneasy equilibrium.

The Gastons' experience, though extreme, is shared by growing numbers of families. Once considered rare, autism is seemingly on a rapid climb, researchers say. In the 1980s, based on limited studies, it was believed that 1 in 10,000 to 5 in 10,000 children had autism. Today, this lifelong condition and other closely related disorders are found in 1 in every 150 children in the United States. Boys are four times as likely as girls to have it.

The Gaston boys, identical twins and a fraternal brother who turn 6 on Sunday, are winsome and outgoing. Unlike some autistic children, they smile readily and are affectionate with their parents and visitors to their Ellicott City home. But Zachary speaks in snippets, Hunter speaks only occasionally and Nicholas doesn't speak at all.

"We want words. We want speech," said Randy, a database administrator with the Maryland Association of Boards of Education in Annapolis. It would be a special day, say the Gastons, if their boys complained of a stomachache or said they were hungry.

They keep their house sparsely furnished and childproof, with much of the first floor given over to bins of toys and a computer that runs the boys' preschool games. Although they can make a ruckus, the boys seldom play together.

For Families Facing Autism, Worry Is a Way of Life

On a recent afternoon, Zachary, the sturdy fraternal brother, arranged his beloved Thomas the Tank Engine train cars in the dining room. Hunter, so slender his pants drooped below his pull-up diaper, chortled as he bounced on a small trampoline in the family room. Nearby, Nicholas sat on the floor, leafing through a worn book. His shirt was wet from chewing it, a frequent activity.

Zachary, the most verbal of the triplets, spoke in short phrases. "Oh, no!" he cried as he rolled a large blue ball through the kitchen. "Don't!"

"Watch out," called his mother. "Say, 'excuse me.' "

"Excuse me," Zach repeated.

Words slip out almost imperceptibly from Hunter. "Book," he murmured as he picked one up. He went about on tiptoes, holding a small toy, worrying it between his fingers and touching it to his lips like a rosary. Sometimes, inexplicably, he called out loudly.

As a toddler, Nicholas lost what few words he had and stopped responding to his name. He doesn't speak, but he will laugh delightedly during a bouncing game or kiss the TV during a favorite Sesame Street video. He pulls his mother by the hand when he wants a drink.

There are fleeting moments of recognition among the brothers. In the kitchen, Nicholas sat on the floor as Hunter stood beside him. The twins almost looked directly at each other, then Hunter moved away.

Worry is constant for the Gastons -- "What should we be doing? What aren't we doing?" -- Lynn said. Both 40, the Gastons hope their 13-year marriage is strong enough to survive. They mention the high divorce rate -- 80 to 85 percent -- commonly quoted among parents of disabled and chronically ill children.

Nevertheless, they have committed themselves to find a way through autism, to draw back its cloak.

"It's all we know," Lynn said.

An Urgent Public Health Concern

The Centers for Disease Control and Prevention, which revised its estimates of prevalence upward this year, calls autism an urgent public health concern. The number of U.S. residents with the disorder, estimated at 1.2 to 1.5 million, could grow to 4 million within a decade, according to the Autism Society of America.

"We're seeing at least 10 times as many [autistic] children as we did a decade ago," said Gary W. Goldstein, president of Baltimore's Kennedy Krieger Institute, a research and treatment center for pediatric developmental disabilities.

Vincent J. Carbone, a New York researcher who has worked with autistic children for 30 years, says better diagnoses alone can't explain the rising numbers.

"There does appear to be a real change in the incidence," he said, describing the latest estimates as "startling and shocking."

The disorder might arise from genetic components, but factors such as exposure to environmental toxins, bacterial infections, autoimmune imbalances and even risks associated with older fathers could be driving the disorder's spread, researchers say.

Since the diagnoses, the Gastons have searched for the best therapies and educational services for their boys, following experts' advice that early, individualized therapy can ameliorate autistic symptoms. Some children with autism have cognitive impairments; others have near-normal or above-average intelligence.

The Gastons have found their search frustrating and costly.

The boys initially were in an Anne Arundel preschool with children who had physical and developmental disabilities, after being assessed by school officials as having mental retardation and developmental delays. Each received 15 minutes of speech therapy a week: "a blip," Randy called it.

The couple consulted lawyers and educational consultants about demanding more services from the school system, but in the end, Lynn said, "We just moved."

A New County Means New Challenges

They had hoped for more speech therapy and individual instruction in the Howard County school system, which has Maryland's highest percentage of students with autism disorders. More than 10 percent, or 483 students, of the special education population there has some form of autism. The system has seen enrollment climb 180 percent in the last decade, in part because of Howard's reputation for extensive services that begin with toddlers and include research-based instruction and aides working alongside autistic students.

But during the first days of school last fall, the Gastons learned that their boys weren't eating and sometimes slept in class. They decided to postpone kindergarten for a year and hired therapists to come to their home for three-hour sessions on weekday mornings, coaxing the gestures and vocalizations that they hope will lead to coherent speech. Therapy costs about $2,000 a month, which the Gastons say they are paying with proceeds from the sale of their Anne Arundel home.

This kind of prolonged, one-on-one therapy often is not covered by insurance companies, which classify autism as a mental illness and often give it limited coverage. Maryland is one of five states that make Medicaid funding available for autism services regardless of the family's income. But only 900 children are served statewide each year, and the Gastons are low on a waiting list of 1,800.

"Everything that's associated with autism comes with a price tag," Randy said. "The financial responsibility is enormous. We have three, and there's no discount."

Disability advocates say the federal government is behind in marshaling resources against autism. Congress is debating how much money to appropriate under last year's Combating Autism Act for research into the disorder. Another bill, which would increase services to people with autism, has just been introduced in Congress.

"There's no federally coordinated autism policy," said Marguerite Colston, director of communications for the Autism Society of America. "States do a better job."

That's small comfort to the Gastons. They're busy trying to settle on individualized education plans for their sons. They want school officials to forego the typical classroom setting and place their boys in private school, where intensive therapy can continue.

The Gastons also have become advocates for families with autistic members, organizing a day-long seminar at Howard Community College in April that drew an audience of several hundred.

"We're trying to go the extra mile to help people," Randy said. "When these kids were diagnosed, nobody gave us a road map."

© 2007 The Washington Post Company