Published April 06, 2012
At 18 months old, Billy Pagoni was diagnosed with severe autism. The disorder was so disabling, he had trouble speaking.
Today, he’s 20 years old, about to graduate from high school in Naples, Fla., and wants more than anything to go to college. But, so far, every school he and his mother have contacted have told them there is no program available for his specialized needs.
With seemingly no opportunities available for him, Billy has made a public plea to President Obama to help him enroll into a college or university and continue his education.
“Dear President Obama, my name is Billy Pagoni,” Billy implored on a video posted on Facebook. “I want to be a baker. I am a great student. I never miss a day of school. I get A’s on my report card. Please, can you help me go to college? I am an American. I am autistic.”
According to the latest figures from the Centers for Disease Control and Prevention, one in 88 children in the U.S. have been identified with an autism spectrum disorder (ASD). When Billy was first diagnosed, nearly 18 years ago, the rate was two in 10,000.
Now, with the disorder so widely recognized, doctors, parents and other autism experts are pushing for early intervention programs more than ever before. Last week, applied behavioral analysis was officially recognized by a federal judge as a proven method, rather than an experimental one, to help autistic children with learning and development.
ABA uses techniques such as positive reinforcement to increase useful learning behaviors and decrease behaviors that may harm or interfere with learning. In Florida, Medicaid must now cover the treatment for children with autism, following the federal judge’s ruling.
An uphill battle
“Billy really didn’t speak [when he was first diagnosed],” explained his mother Edith Pagoni, the director of KNEADS, a non-profit social and vocational program for adolescents and young adults with autism in Naples. Pagoni took action, enrolling her son in an applied behavioral analysis program at Rutgers University soon after he was diagnosed.
“Through that program, he’s learned how to learn,” said Pagoni. “He’s learned how to read, write and speak.”
The next step, she said, was to convince local school systems in Connecticut, where the Pagoni family lived at the time, to incorporate the program into their curriculum for autistic children. They had to repeat the process again in Florida when they moved seven years later.
“I had to say, there’s scientific proof here, there’s research,” Pagoni said. “Finally we got that program accepted into [Connecticut and Florida] schools and started an early intervention program in Connecticut. We helped 80-plus students with that model.”
Billy is known around his community as the ‘puzzle-boy’ because he likes gluing puzzles together and giving them to people around town. As a skilled artist, he sells his work at Florida’s yearly Bonita Springs Art Festival.
He picked up baking after his mother took him to visit a German bread baker in Florida. Pagoni enrolled him in baking classes, which she said were open to working with her son and another student with autism. Now, Billy is in charge of cooking most of his own meals.
“He really wants something a little more than that, where he can take a vocational skill as a prep chef or a sous chef,” Pagoni said.
But now, with Billy one year away from graduating high school – public high schools typically require students to graduate at age 21, at the latest – his family has hit a final roadblock: finding a college that will accept him.
Pagoni has inquired into multiple universities in the surrounding Naples area, including Lorenzo Walker Institute of Technology, which markets programs for special needs children. She said Billy has been denied from every one.
“They tell me there’s no place for him,” Pagoni said. “He goes to school every day, he gets A’s in a specialized curriculum, but he’s being denied a post-secondary experience.”
“We evaluate students with disabilities on an individualized basis,” the Collier County school district, which includes Lorenzo Walker Institute of Technology, responded in a statement. “Given the range of autism spectrum disorders, which extends from mild to severe forms, we have the IEP team involved do an extensive analysis in order to design an appropriate educational program to fit the student’s needs, abilities and growth patterns. If the autism is severe, for example, and we are dealing with an older student, and that student requires close monitoring, it may not be possible to enroll the student in a vocational program because of the safety risks involved.
“Should that be the case, the team explores alternative means to help the student vocationally prepare for the future.”
‘There’s nothing else for him’
While universities currently offer specialized programs for blind, deaf, ESL and high-functioning Asperger’s students, there are little to no options for more severely autistic children, according to Pagoni.
“When you look online,” she explained, “it looks like, yes, there are programs for these students. But what universities actually have are programs for extremely rare, high-functioning, savant-like autistic children. There’s nothing for kids who have splintered skills – for those who are excellent with computers, but may need a subject like geography broken down for them.”
Michael Stuart, a retired high school teacher whose son has autism, said he and his family have faced the same uphill battle as the Pagonis. His 20-year-old son, Aaron, is also about to age out of high school with no future options.
“That’s it, there’s nothing else for him,” said Stuart, who described his son as moderately to severely autistic. “We’ve been looking at this for quite some time now.”
While Aaron cannot communicate, he has been trained in other skills – specifically the culinary arts. “We’ve been training him the best we can for life after school,” said Stuart, who also lives in Naples, Fla.
“As a teacher, I’ve worked with thousands of kids over the years, many of which have been mentally and physically disabled,” he continued. “I do believe in investing in these kids; I do believe they can become productive members of society if they are given proper educational support…As impaired as they are, they love to work, they love to be functional they love to have a purpose in life. They can all be trained.”
With proper vocational training, Stuart believes Aaron, Billy and other autistic children can be kept out of adult daycare programs and off government support.
“Adults with autism need a safe environment where they can be productive and work and get a paycheck,” Stuart said. “We’re looking for opportunities, not handouts. We don’t want handouts from the government. We want our kids to work and be safe.”
Running out of options
Billy has asked his mother every day if he can go to college like his sister, a student at Florida State University – though he wants to stay closer to home. Currently, he is enrolled in a work program through his school at an NCH regional hospital in Naples, where he files and cleans tables.
“The problem is, once that program ends and he graduates out, it’s no longer available as an option for employment,” Pagoni said. Her son can follow instructions very well and works hard, she added, but his autism can derail him when distractions are present – such as people asking him questions unrelated to his current task.
“I don’t want to set him up in an environment where he’d fail,” Pagoni said, adding that at this point, adult daycare is the only alternative if no colleges accept him, but “he’s too smart, he’s worked too hard to get just this far. He’s quite an artist and quite a baker.”
Both Pagoni and Stuart plan to start alternative programs to support their children, if no other options become available. However, it would once again be starting from scratch for both families.
“There’s a complete generation of these kids who are aging out of school, who will have nothing to do,” Pagoni said. “If colleges had a program for autism that addresses specific skills for these kids, there would be people at the door waiting.”
Click here to visit www.kneads.org.