P.J. Pace was 15 months old when his mother began to suspect something was wrong. He didn't make eye contact or babble. He didn't seem to like being around people. He would compulsively line up his toys or spin them around endlessly. Even so, his mother says, the behaviors were fairly subtle — except when compared to his brother's. • "He is a twin,'' Colleen Pace said. "That helped us see a difference in his behavior." • It took almost a year of seeing specialists and running tests for Colleen and Adam Pace to learn that their son had autism. • "Then I cried," Colleen remembers. "I knew what autism was, but I didn't know what you did about it."
Autism spectrum disorders are a group of complex developmental disabilities that cause problems with communication, social interaction and repetitive behaviors. A new government report last week found that it is more common than previously thought, affecting 1 in 88 children. The type of therapy that is recommended, its duration and where it is delivered depends on the severity of the condition — and the family's resources.
Last week, a Florida judge leveled the field somewhat by ordering the state's Medicaid program to begin paying for a type of autism therapy known as applied behavior analysis, or ABA. Florida already requires private health insurance companies to cover at least part of the cost of the treatment, which has been around since the 1960s. But children on Medicaid, the health program for the poor, were denied because state officials deemed ABA unproven.
"This is not experimental therapy. It has been clearly demonstrated to be an effective intervention in large clinical trials," said V. Mark Durand, an authority on autism spectrum disorders and a researcher and professor of psychology at the University of South Florida St. Petersburg.
"That's like saying taking aspirin for a headache is experimental. It wasn't surprising that an intelligent judge would look at this and say you can't make that argument."
• • •
By the time P.J. turned 5, he was destructive and aggressive. He climbed the furniture, counters and fences. He'd run into the street as caregivers pursued him. He banged his head against the walls. He threw long, loud, frequent tantrums.
The Paces tried just about everything they heard of, from applied behavior analysis to hyperbaric oxygen therapy. Durand says autism therapy isn't a one-size-fits-all proposition, and the Paces discovered that with ABA.
One kind of ABA therapy didn't work at all. Another worked only in the clinic. The third try was an intensive in-home approach offered by ABA Solutions.
"This has changed P.J.'s life; it has changed our life," said Mrs. Pace.
ABA therapy typically uses rewards to get a child to say what he wants, perform a task or end a tantrum. It is a time-intensive, painstaking process that requires huge amounts of patience and persistence from both therapists and family members. While many of us might give a child anything to stop distressing behavior, ABA teaches the child to communicate his desires rather than withdrawing and acting out.
Ten months ago, P.J.'s therapists started by rewarding him with a piece of a Dorito, one of the only foods he would eat. Eventually high-fives and verbal praise were his motivation.
"We make it so that it isn't easy for them to withdraw and engage in their repetitive behaviors,'' said David Engelman, co-owner of the company, which serves Pinellas, Pasco and Hillsborough counties. Things they want aren't just readily available. They have to come to their parents or caregivers and ask for what they want."
Now 6, P.J. sleeps in a regular bed instead of the covered crib that prevented him from climbing out. Bath time no longer is traumatic. He can play in the front yard without running off. He no longer is injuring himself, and his tantrums are fewer and milder. He is learning to play with his twin and his older sibling.
The therapy has even changed his diet, by rewarding him for trying new foods. Before, he would only eat chips, pizza and nutritional shakes. "Now he eats chicken, fish, corn, green beans, turkey. He's tried asparagus, broccoli, steak. His menu has exploded because of the therapy," his mom said.
Engleman says his team usually conducts ABA therapy four days a week, four hours per visit, which can cost up to $40,000 a year.
The Pace family has private insurance to help pay the bills. But how will the cash-strapped Medicaid program cover even more modest treatment plans?
"That's a big problem," said Durand. "A good number of children make substantial gains with ABA. But it's expensive."
U.S. District Judge Joan Lenard's order applies to nearly 8,000 children in Florida. But in her ruling, Lenard noted that the alternative is costlier in ways that go on for years.
"It is imperative," the judge wrote, "that autistic children in Florida receive (therapy) immediately to prevent irreversible harm to these children's health and development."
This article has been updated to reflect the following correction: The cost of four-day-per-week autism therapy from ABA Solutions Inc. ranges up to $40,000 a year. Information from Times wires was used in this report. Contact Irene Maher at firstname.lastname@example.org