Children learn on a curve
Autism education is tale of two counties
(article published in Daily Progress September 27, 1998)
by Daniel M. Nonte

Seven-year-old Preston Cannon from Nelson County and 4-year-old Rachel Jampol from Louisa County both suffer from autism.

Both receive special tutoring at the Virginia Institute of Autism in Charlottesville. And the parents of each say they've seen a dramatic improvement since the children started attending the private school that opened in October 1996.

But the two counties handle the children very differently.

Nelson County pays the full cost of tuition at the institute - $16,800 annually for 20 hours of instruction per week, according to Fred West III, the institute's executive director. The county also pays for a driver and car to transport Preston to and from the institute at 517 Park St., a 45-minute trip each way.

Meanwhile, in Louisa County, the Jampols and the school system have been arguing for 1.5 years over what constitutes an appropriate education for Rachel.

In February, a Virginia Department of Education hearing officer determined that the school system should reimburse the Jampols for the tuition they have paid since Sept. The school system has appealed that ruling and a Nov. 17 court date has been set in Louisa County Circuit Court.

As a whole, special education isn't cheap. Spending varies widely for different disabilities: Simple speech therapy costs little, but residential treatment programs for the emotionally disturbed can cost upwards of $100,000 per year.

In Nelson County, for example, special education accounts for about $1.2 million of the overall $14.4 million schools budget, according to Shannon Irvin, the school system's director of finance.

Preston's mother, Suzy Cannon, calls the Nelson County school system's support a blessing, a bright spot among the frustrations caused by son's condition.

"They're willing to do whatever is necessary," she said of the 2,000-pupil school system.

"People talk down about rural areas and their school systems, but I'm tickled.

Federal law requires school systems to provide a free appropriate public education to children with disabilities, including pre-school age children such as Rachel.

The relationship between the Jampols and their local school system has been less rosy. At the beginning of last school year, the Jampols turned down Louisa's offer of services, calling them insufficient, and placed Rachel at the institute.

Mark Jampols, Rachel's father, admits he was impatient and lost his temper when the county didn't offer the one-on-one tutoring he sought. But Rachel's condition left no time for debate, he said. When autistic children receive intensive therapy at early age, he said, their chances for recovery soar.

Since then, the family has spent about $50,000 on tuition and legal fees, Jampol estimates.

"I had the resources to pay for this. I don't know what a poor person would have done," he said.

Ann Wickwire, who directs Louisa County's special-education programs, said she can't comment on specific cases, citing confidentiality. But she defended the 4,000-pupil school system's ability to serve adequately almost all children with disabilities, rather than contracting with outside providers.

"We do serve a high percentage of out kids here in the county, rather than having to send them outside the county," she said.

"We do have several children because their disabilities are so severe, that they attend separate day schools. But that's a very small number."

Early Warning

The story of Rachel's treatment started in 1996, when she was 2. Her parents, who have three children older than Rachel, noticed she wasn't developing as quickly as her siblings. They took Rachel to the University of Virginia Kluge Children's Rehabilitation Center, where she was diagnosed as autistic.

"Autistic children need a lot of attention," Jampol said. "And in most cases, they never fully recover, or even recover enough to be independent in terms of ultimate living.

"My wife and I were obviously destroyed by the news. It was terrible.

After that diagnosis, the Jampols went to officials of the school system to a devise a plan for Rachel. The county placed her in a pre-school class for children with a wide range of disabilities.

While Rachel attended those classes, her parents educated themselves about autism.

"Over the course of that first year, we learned that what the school was doing wasn't nearly enough, that there was a great body of knowledge available from the educational community as to what could be provided," Jampol said.

Jampol became convinced that his daughter needed tutoring of the sort provided by the institute, and that she needed that help without delay.

"The techniques are actually quite simple, it's basically in your face, one-on-one, breaking down functions for little children so they can understand them," Jampol said. "Autistic children do not have the ability to take in standard input."

The new statistics

Autism affects as many as one person out of 500, according to the Autism Society of America, and is four times more common in boys than in girls. The Albemarle County school system has diagnosed 26 children as autistic; the Charlottesville school system has diagnosed seven.

Sufferers experience different symptoms to varying degrees, so treatments must be tailored to each child. Some of the more common symptoms include a lack of age-appropriate language and social skills, and may lead to a dearth of interest in playing with other children.

At the institute, which lacks facilities to accommodate any more pupils, a dozen children ranging in age from 3 to 10 receive instruction in small, plain rooms that cut down on distractions. The institute's teaching methods involves detailed and intensive lessons, hour after hour, day after day.

Up close and personal

Preston has responded well to those lessons during the year he has attended the institute, his mother said. "His behavior's gotten a whole lot better," she said.

"He seems to understand more of what I'm talking about. He's saying words better."

Seated face-to-face across child-size table, tutors focus rapt attention on their pupils and guide them through exercises, painstakingly documenting every response in hefty binders.

Each child performs between 15 and 30 tasks a day, which include organizing blocks, reading flash cards and solving mathematical problems. The tasks become increasingly more complex as the children learn new skills.

Children who perform well are encouraged with wide grins and excited praise from instructors, who themselves light up like children on Christmas morning. Other times, pupils earn rewards such as play time with a favorite toy.

The institute holds fund-raisers and applies for grants to hold down tuition costs. Without those efforts, tuition would be about $3,700 more for each child, West said.

Area school systems provide varying amounts for financial support to the institute. "We have good relations with some counties and absolutely no relations with other counties," he said. Albemarle, for instance, pays for some children to attend the institute based on individual needs.

"Our goal for every one of our kids is to move them to a less restrictive setting," West said. "But we know that some of our kids may need us for a lifetime."

The symptoms

Autistic children are more prone than other children to tantrums and what one instructor diplomatically calls "non-compliance."

Many flap their hands, spin or make repetitive sounds. Some try to injure themselves. Others form unusual attachments to objects, such as a rock or a piece of string.

"One-on-one is the key to this program. It's something that these kids need. Because if you give them a chance to, more than likely, they are going to disengage from you," said Mary Ann Cassell, a consultant who advises the institute.

"They would rather be doing their own activities, whether those be play activities or self-stimulatory activities, etc. It does take a lot of work to keep them on track. One-on-one makes that possible."

A ringing endorsement

The Jampols say they believe in the institute as passionately as its instructors. When Rachel started attending, she could not speak and was not toilet trained. She now has a vocabulary of hundreds of words can use the bathroom herself.

Jampol blames school officials for the acrimonious dispute over Rachel's education. "For some reason here there is an ego amongst educators where they expect you to think that they know everything about every child with any disability," he said.

While the dispute drags on, Rachel receives lessons at the institute only because her parents pay the tuition themselves. Whether they are reimbursed remains to be determined.

Wickwire, who holds a doctorate in school psychology, had proposed teaching Rachel within Louisa County's schools. The system teaches about 500 children in need of special-education services, she said, and has done well in demonstrating its ability to do so.

"We have an excellent special-education program," Wickwire said recently.

"I've gotten 40 new transfer special-education students starting the year off. The parents tell us that this is a good place to be.