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When AJ Corless told his parents about his first grown-up kiss in the summer of 2008, they were so thrilled their eyes welled up. Ever since he was diagnosed with an autism spectrum disorder (ASD) as a toddler, Joanne and Allan feared their son might miss out on life's joys. Would he ever fall in love, hold a job or learn to take care of himself? "There was definitely a time when I thought my dreams for him were impossible," recalls Joanne, a 52-year-old mother of three. In fact, one of AJ's first doctors told Joanne to just accept the cards she'd been dealt and focus on the rest of her family—because her son would never amount to anything.
She ignored that advice and led a 20-year fight for AJ, who at 22 is a talented athlete, a self-taught classical pianist and an aspiring cook who treats his two younger sisters (Kiersten, 20, and Kylie, 11) to homemade enchiladas. He even has three part-time jobs—at an accounting firm, a medical marketing company and a grocery store—which enable him to contribute to his community. Joanne's advocacy for kids with autism has helped not just AJ but also families in and around her hometown of Wycombe, Pennsylvania. Thanks to her efforts, kids with ASD now have comprehensive public and private-school options.
Looking back, Joanne always knew there was something different about AJ. He had difficulty understanding her, learned words only to forget them and threw tantrums if his routine was disrupted. But Joanne, a nurse, had also seen intelligence and affection in her son. "He was my little buddy," she says.
Autism impairs kids' emotional, social and communication abilities, making it hard for them to learn. While Joanne expected to find educational options addressing these specific challenges, she instead discovered groups that met for only a few hours a week or left the kids with glorified babysitters.
A year into her research, in early 1993, Joanne came across an article about two autistic kids who had blossomed at UCLA through a rigorous therapeutic approach called Applied Behavior Analysis (ABA). Joanne called the head of the program in California and heard the good news: Instructors were being trained to bring individual ABA programs into people's homes. The bad news? The training wasn't yet available in Pennsylvania. But the more she read about ABA, the more determined she became to have AJ try the intensive therapy, in which an instructor develops a plan for a child and spends hours working one-on-one. After isolating a specific goal—mastering the alphabet, taking a shower—the teacher breaks it down into tiny steps. Every little achievement is rewarded, no matter how small it seems. ABA is slow, painstaking work that requires long hours, infinite patience and dedicated, well-trained tutors.
Then Joanne got a lucky break: A satellite program was about to launch an hour from her home at Bancroft, a nonprofit that offers support for children and adults with developmental disabilities. She contacted psychology departments at local colleges and worked with program heads to recruit students to train at her home. The colleges were eager to cooperate, since it meant that students could learn the groundbreaking technique and gain hands-on experience. Joanne found a rotating group of students who came over to work with AJ six hours a day.
He was almost 4 when the homeschooling started, and the progress was astounding: AJ went from speaking single words to completing full sentences in just six weeks. One of his first objectives was to simply sit still in a chair, Joanne recalls. "The instructors would say, 'Come sit,' and pat the chair. If he did, they'd reinforce him with candy and by saying, 'Good job, you sat!' He caught on quickly." Joanne was ecstatic and couldn't wait to share the good news with more families. Over the next five years, she worked tirelessly to create similar home programs.
Soon she and the other parents wondered why they had to pay out of pocket for these home lessons when they were already paying taxes (school districts are mandated to provide appropriate education services for students with disabilities). Could ABA techniques be taught in public schools? Joanne spent months convincing school board officials of that growing need. In 1997 she created the AJ Foundation for Children with Autism (AJFCA), which helped develop the area's first public-school ABA program for elementary-age students with autism. The demand was huge, but as kids flooded the school, budget constraints prevented the district from hiring enough staff to deliver one-on-one attention.
Worried that the kids' learning might be compromised, Joanne opened her own private school with an ABA-trained educator. Her husband Allan's experience as a civil engineer and partnership in a construction company came in handy; he renovated a mobile unit, which their church agreed to "host" rent-free in its parking lot.
Fortunately, the state approved a license for the school, and The Comprehensive Learning Center (CLC) opened in September 2000 with two instructors and three students. It was funded by students' tuition and money raised by the AJFCA. Over the next few years, the program expanded as more students and faculty came on board. Eventually it relocated to a permanent building.
Although CLC is a magnet for families with ADS kids, some of whom move to be closer to the school, Joanne emphasizes that ABA is not a cure for autism but a way of learning to deal with the condition. In addition to working longer school days and over an extended school year, the staff at CLC spend time teaching kids life skills, like how to sit quietly in church or at a movie, tolerate dental and medical appointments, and order and eat politely in restaurants—tasks that improve the entire family's quality of life.
Joanne acknowledges the program's hefty cost. CLC's yearly tuition, mostly covered by local school districts, is $82,250. She points out, however, that the price tag doesn't tell the full story. CLC aims to make these kids as independent as possible—and that pays off for everybody in the long run. The cost of a lifetime of care for one person with autism is $3.2 million, mostly in lost productivity and adult care, according to the Harvard School of Public Health. So a child who functions well enough to transition into regular school or a job saves taxpayers around $3 million. And for families whose kids can finally revel in self-expression, friendship and knowledge, the value is even greater.
Twenty-four students are now enrolled at CLC, which accepts kids from ages 3 to 21. In 2009 the school expanded to a second 6,000-square-foot building to accommodate its growing numbers. The next step is an adult life skills program, which is in its early development phase. But with so much expansion, tuition alone can't cover operating costs, so Joanne organizes major events like casino nights and golf outings. She raises as much as $230,000 annually. AJ helps her out. "I work as a bartender at the casino night," he says. In addition, Joanne arranges conferences and CLC visitor days to educate people about autism and ABA.
Joanne admits to a sense of wonder at how far AJ has come. But her gratitude goes beyond her son's success: "I'm proud to work with people who will stop at nothing to give their children, grandchildren, nieces, nephews and friends with autism a better life."
Originally published in the April 2012 issue of Family Circle magazine.