Defying autism; Path sought through maze of treatment.

Byline: Aaron Nicodemus

SOUTHBORO - Learning the simplest skill is difficult for 5-year-old Andrew Fantozzi. He cannot focus on tasks and is distracted by his compulsions: biting the collar of his shirt, clicking his tongue or rapping his toys against the windowsill.

"It sometimes takes years to accomplish a single task," said his mother, Donna Fantozzi. "There's always new behaviors to address, week to week. You feel like no sooner than you make an improvement in one area, there's something somewhere else. It's like a leaky pipe."

Andrew was diagnosed as autistic at 22 months old. Donna said she recognized her son's disability immediately, while her husband, Tom, kept hoping that Andrew would somehow "snap out of it." Andrew seemed unable to express himself, screamed at the top of his lungs at the slightest frustration and often woke up in the middle of the night for hours at a time.

There are times, his mother says, when Andrew cannot even say her name.

"Sometimes he calls me `Margo,' which is the name of one of his teachers," she said. He usually corrects himself with a little prompting, she added.

"There is no handbook, because all the kids are different," said Tom Fantozzi. "If you went to 10 different autistic homes, you'd hear 10 different stories."

Donna has thrown herself into researching autism and the treatments available for a boy such as Andrew. She has spoken with experts, school officials and parents. She has joined a local parent advisory council. And she tries to read every article and book on the topic that she can.

"I will probably spend my entire life gaining expertise on this," she said.

Autism is defined as "a severely incapacitating lifelong developmental disability that typically appears during the first three years of life," according to the Autism Society of America.

A February 2007 report from the Centers for Disease Control, which caused considerable uproar when it was released, found the prevalence of autism has risen to one in 150 American children, and one in 94 boys. Andrew's case is considered severe, and there is a whole spectrum under which many autistic diagnoses fall.

Andrew attends a private school in Natick, the RCS Learning Center, which was formed two years ago, instructing 28 autistic children from 3 to 14. He has three behavioral therapists who work with him one-on-one, for a six-hour school day, in two-hour shifts.

A curriculum development specialist tracks Andrew's daily progress - and the progress of six other students - through a large number of categories delineated in a thick binder. Adjustments to his instruction are made daily, school officials said. Every day, a log is sent home to parents. An extensive progress report is done quarterly, and parents meet with school officials once a month.

"When he came to us, he really had no language at all," said Denise Rizzo, owner and president of RCS Learning Center, which stands for Realizing Children's Strengths. "He's a different little boy now."

During the beginning of his time at the school, Andrew, then 4, broke through his silence by answering yes-or-no questions. His curriculum developer, Liz Kelsey, said Andrew now can form complete phrases and sentences.

During the school day, his therapists work on improving Andrew's communication and focusing his attention on a particular task, such as putting puzzles together. They help him learn basic skills, such as how to dress himself, eat, brush his teeth and go to the bathroom.

Andrew has to be taken through each part of a task, step by step, over and over. They even teach him how to play.

"He's motivated by play, but he doesn't play with toys purposefully or attentively," said Ms. Rizzo, the school's owner and president. "We want to encourage independent play. He might just want to click the blocks together. We prompt him to put one block on another, build up a tower, so he understands what he is supposed to be doing. Then we knock it down, make it fun."

All of this individualized attention comes at great cost. The annual tuition for RCS Learning Center is $90,000 per student, according to Ms. Rizzo. Transporting Andrew to and from Southboro to Natick in a van provided by the Assabet Valley Collaborative costs $160 per day, or $35,360 per year, according to the collaborative.

The Northboro-Southboro School District is reimbursed for a portion of the cost of Andrew's tuition through the Massachusetts circuit breaker program. School districts are reimbursed for 72 percent of out-of-district tuition costs above $33,700 in fiscal 2008, according to the Massachusetts Department of Education. And the reimbursements are made to the districts based on the previous year's expenditures.

For Andrew's education, the state will reimburse the district about $40,500 of the $90,000 tuition, but only next year. The district is responsible for paying the rest, as well as the entire cost of transportation.

That means Andrew's out-of-district placement will cost the Northboro-Southboro School District about $125,360 in this fiscal year, with $40,500 in state reimbursement coming next year.

The Northboro-Southboro, Northboro and Southboro school districts will spend a combined $1.7 million on out-of-district tuition in this fiscal year, according to School Business Manager Cheryl Levesque. That figure does not include money reimbursed to the district through the circuit breaker program.

Barbara Goodman, director of student support services for the Northboro-Southboro School District, would not discuss Andrew's specific case, citing confidentiality.

"We're really dedicated to getting the kids what they need in their neighborhood schools," she said.

The district offers a wide variety of instruction for children with special needs, including classroom instruction for children with autism. Of the 700 or so students in the district with special needs, 50 to 55 are placed in out-of-district placements such as RCS, she said.

Donna and Tom Fantozzi are adamant that Andrew needs a specialized school such as RCS. When he was in the preschool program offered by the Northboro-Southboro School District, his performance was inconsistent, and he would experience regression and frustration, especially when classes ended for the summer.

"Nobody wants to take their kid out of their neighborhood school. It is a very tough decision to make," Donna said. "We hope that someday Andrew will be able to return to mainstream classes."

The private setting offers Andrew a "rock-solid, consistent, steady program with highly trained professionals," Donna said. "There was less disruption to Andrew's routine, and that consistent schedule is just so important to him."

The couple said they had to advocate strongly for what they felt was truly best for Andrew, even hiring a special needs advocate to sit in with them during meetings with school officials. Donna said she has cried more than once at these sessions.

"We didn't go out looking for an outplacement program. We sought out the experts and asked their opinions," she said.

Andrew has visited a neurologist, a psychologist, a neuropsychologist, a pharmapsychologist, a sleep specialist, a geneticist, a behaviorist, a speech therapist, a gastroenterologist and others, as his parents seek answers and suggestions for what is best for him. He's only 5 but has already undergone two magnetic resonance imaging tests.

"He's still just a little boy," Donna says.

Donna tries to take Andrew outside every day, even in winter. When he's riding a swing, one of his favorite things to do, he looks just like any other 5-year-old, pumping his legs and smiling widely. At the same time, his older brother, Joseph, plays ball on the lawn with a friend. As she follows Andrew around the yard, Donna doesn't have a moment to throw the ball with Joseph.

When Andrew gets off the swing, he walks over to the edge of the basement stairs, picks up a plastic watering can and begins tapping it on the handrail. He does this every time he comes outside, his mother said. Then he heads back to the swing set and throws handfuls of rocks into the forest. No matter how many times his mother tells him not to, he repeats the same patterns.

"I just wish he could enjoy life more," she said, as she watched him throw stones into the forest. "He's so pure, so innocent. I hope he learns to read. I'll never give up hoping for more. I hope someday I'll know about what's going on in Andrew's mind, and that he'll have peace and happiness."

ART: PHOTOS

CUTLINE: (1) Andrew Fantozzi, 5, reacts to behavior therapist Barbara Poch at the RCS Learning Center in Natick. (2) Andrew bounces on a trampoline as Ms. Poch holds his hands. (3) Donna Fantozzi helps her son, Andrew, take off his shoes after a day at school.

PHOTOG: (1, 2) T&G Staff Photos/PAUL KAPTEYN (3) T&G Staff/TOM RETTIG