Michelle Rubin and husband Bob were sitting in a small office at the Kennedy Krieger Institute, a Johns Hopkins affiliate in Baltimore, Md., when a team of doctors rendered their verdict on Jan. 29, 1995 after three days of testing. The Rubins’ son, Scott, about to turn 3, had been diagnosed with moderate to severe autism.
And the prognosis, according to the experts, was bleak.
“The lead doctor said that autism was really rare [reported rates into the early 1990s were 1 in 10,000 cases],” Michelle says. “There wasn’t much we could do for Scott, he said, because there weren’t programs for kids with autism. My head was spinning. I didn’t know what to do. I just knew that doing nothing was not an option.”
Two decades later, the longtime Boca resident continues to be a modern-day Lewis & Clark for local families dealing with children and young adults with developmental disorders on the autism spectrum—a condition that today, according to the U.S. Centers for Disease Control and Prevention, affects 1 in 88 American children.
After charting a course through childhood and teen issues that established her as a leading advocate and go-to source for other parents, Michelle launched Autism After 21 in 2011, a nonprofit intent on creating opportunity and altering perceptions.
“Scott [who turns 22 in March] is once again at the front of a wave of [adults with autism], and there are thousands of kids in Palm Beach County coming behind him,” says Michelle, who has two other sons with Bob, Andrew (17) and Matthew (12). “We’re trying to fill in the blanks.”
In addition to a tech-training program that provides participants with iPad minis in an effort to “maximize their skills in the work world,” Autism After 21 goes virtually door to door in an effort to educate businesses about potential employees.
“Unemployment for adults with autism is reported at 80 to 90 percent, much higher than other disabilities,” says Michelle, an honoree at Bethesda Hospital Foundation’s annual Women of Grace Luncheon last November. “There’s a fear of aggressive behavior, that any little thing may make someone with autism snap. We’re trying to dispel that. They’re good at doing things that other people might find boring, like a repetitive task. So when they get the experience, adults with autism often become amazing employees.”
Look no further than Scott, who was non-verbal until almost age 14. This fall, he was riding his bike to Lynn University, taking classes, hopping on the Palm Tran bus and going to work at Brewzzi by himself.
“I would’ve never dreamed that he could have that level of independence,” Michelle says. “He continues to exceed our expectations.”
To continue reading, please pick up a copy ofthe March/April Boca Raton magazine.