Out of the Abyss
Three years ago Kathleen Fitzpatrick of Reno, then 3 years old, was slipping into an abyss inside her mind. “She stared at her hands and chewed on things,” says her mother, Larene. “She didn’t speak, couldn’t follow simple instructions.”
Kathleen ignored her mom and her younger sister. Each day the little girl seemed to withdraw deeper into a world only she could see and feel. The doctors said it was autism — the most common disability, after mental retardation, diagnosed in children in the nation.
The diagnosis broke her mother’s heart. “It seemed hopeless,” Larene says.
“She didn’t talk at all. When she was tested she gave one response out of 15.
When I saw children playing, I thought Kathleen would never play like that, never be normal.”
Early books about the condition had titles such as Autism: Nightmare Without End. Even as recently as a decade ago, Larene’s fears would have been proved true: Kathleen could have faced a lifetime of disability.
Not anymore, thanks to the University of Nevada’s Early Childhood Autism Program, in which Kathleen was a star student for three years.
Today, the little girl is in the first grade in regular school and learning to read. She gets 100 on spelling tests. She picks out “Twinkle, Twinkle Little Star” on a piano and loves Elton John songs. She laughs and talks. She plays with her friends and laughs and talks and fights with her sister. She swims and scores goals for her soccer team.
“She has a life now,” Larene said. “She has a future.”
The Early Childhood Autism Program, founded in 1994, in the psychology department, has served about a dozen children so far. All will benefit. About half will go on to regular school classes where not even their teachers will be able to tell they were once diagnosed “autistic.”
Autistic children may be wildly active or seem to be in a trance. They may exhibit behaviors such as rocking, hand-flapping or running into walls. Symptoms begin after the first year of life, and kids can lose speech and social skills they’ve acquired. An autistic child may not even recognize his or her own mother. This isn’t the “idiot savant” condition popularized by movies such as Rainman, which featured Dustin Hoffman portraying an autistic adult as a math wizard.
Most autistic children don’t have special skills, although some have what are called “splinter” skills, things that don’t seem affected by autism. Contrary to old theories, they aren’t reacting to cold, uncaring parents or a traumatic event.
They are suffering from a still-mysterious neurological disorder. The cause and the mechanism of autism remain unknown. Charlatans have claimed cures and several programs give some help but only one type of treatment seems able to allow children to progress so much that some have their diagnosis removed.
The folks at the University of Nevada’s program don’t claim “cures” or even “recovery,” but the numbers speak for themselves; about 50 percent of those who stick with the program will be able to lead normal lives.
The results are due to a system known as Applied Behavior Analysis (ABA).
It’s a very systematic and deliberate approach to behavioral change,” says program director Pat Ghezzi, an associate professor of psychology. “Complicated skills are broken down into simple elements, which are taught individually and then combined together.”
At first, very simple tasks such as looking at the tutor, staying seated, or clapping hands on request are taught. As the child progresses, the tasks become more difficult and “reinforcements” such as cookies or juice are replaced by praise or hugs. Each session is individualized for the child, who progresses at his or her own pace.
“We permit the child to succeed all the time,” Ghezzi says. “Lord knows these children have enough failures.”
Early speculation that such training would produce robotic children was unfounded.
The children’s social behavior after treatment isn’t contrived, it’s very natural. In some cases, the child once diagnosed as autistic is indistinguishable from his or her peers.
The student tutors, from the psychology department, are extensively trained in ABA and ultimately join the teams assigned to the children. Currently, the university has six children in the home-based program, four in the clinic program and one in an outreach program, serving rural Nevada and neighboring states.
“The best thing about [tutoring] is seeing the results in the children,” says Meeta Pavel, a tutor and assistant director of the outreach program. “The parents may say, ‘All I want is to have my child say, “I love you.”‘ Then, when a child is progressing well and able to say full sentences or do things they’ve never done before, the parents are overwhelmed and say that we’ve given the child back to them. It’s amazing to see how the family dynamics change. Bringing hope into their homes is a wonderful feeling.”
The full treatment: 30 hours per week for three years. The younger a child can be taught, Ghezzi says, the better the treatment will work to change behavior. “We’ve been able to integrate four of our kids into public schools without a hitch,” he says. “No special-education classes, no pullout programs, just regular school.”
For families who have dealt with an autistic child, the results of Applied Behavior Analysis seem a miracle.
“Miraculous, but no miracle,” Ghezzi says. “It’s a long road, with plenty of hard work along the way.”
“Dave Adams of Oregon, whose son, Lucas, was diagnosed with autism, says he tried to help his son in many ways before coming to ABA in an Oregon program that partners with the University of Nevada’s.
“He learned more in one hour of this program than he learned in four months (in other programs),” Adams said before an audience at a fund-raiser July 17 sponsored by the psychology department and the Ahora Spanish-language weekly newspaper in Reno. The event — which benefited the University’s autism program and a non-profit group, Research and Education for Autistic Children’s Treatment — included a speech by Gov. Kenny Guinn. “Our goal is to give them a chance to reach their full potential,” Adams says. As a side note: Kathleen Fitzpatrick met Guinn and said, “Nice to meet you governor.”
Adams co-founded the Medford, Ore.-based REACT, while Reno-area parents founded Families For Effective Autism Treatment (FEAT). The goal of both groups is to bring applied behavior analysis to the people who need it but can’t afford it. Even though Nevada’s program is less expensive than other applied-behavior analysis programs in the nation, it’s costly for many parents. The $17 per hour may seem inexpensive next to what an auto mechanic or a video technician makes but the 30 hours of tutoring per week for three years adds up.
The overall cost of about $2,000 per month is staggering to many families. Insurance companies usually don’t cover treatment and most parents pay out of their own pockets. Although the affliction is neurological, insurance companies insist on classifying autism as a psychological illness. The governor was sympathetic to parents’ concerns and suggested money for autism programs can be found without raising taxes. Funds saved in other state program could be channeled to help families cope with children’s disabilities and political changes are needed, he said.
“They must be given a chance to reach their full potential,” Adams said. Families get such help at the Early Childhood Autism Program, but the demand for the services far exceeds the programs limits. The Adams and Fitzpatrick families are the lucky ones: they have their children back in this world and out of the abyss.
“The real heroes of this program are the children, the student tutors and the parents and siblings who work so hard,” Ghezzi says. “They are the ones who make this work. They can make the child whole.”
By Frank Mullen Jr., who has also written long features about autism for the Reno Gazette Journal, where he was a prize-winning senior reporter.