(page 3 of 4)
A key ingredient in her cocktail was the educational approach Applied Behavioral Analysis (ABA), at the time the center of a firestorm in the autism community thanks to a groundbreaking book, Let Me Hear Your Voice, by Catherine Maurice. Maurice claimed to have cured two of her children of autism by hiring a teacher to utilize this behavior modification approach, researched and deemed effective in some well-known studies by UCLA’s Ivor Lovaas. ABA draws on principles of classical conditioning to help autistic children learn essential social skills, while unlearning negative, obstructive behaviors. “It’s a good technique to try first, because it does work in a lot of cases,” Reed says, adding, tongue-firmly-in-cheek, “If you’ve ever trained a puppy, you know it works.”
Here’s an example of how it can be applied: Say a therapist wanted to teach a child to make eye contact when he heard someone say his name. In ABA technique, she would start by saying the name while waving the child’s favorite toy in front of her face. When the child responds the way the therapist intends, he’s rewarded—by being given the toy to play with. As the exercise is repeated, the child will make eye contact with the therapist even when he no longer wins the toy. Eventually, the goal is to get the child to “internalize” the behavior so that he will make eye contact every time someone says his name, because that action in itself is rewarding.
It was another Connecticut mother of a child diagnosed with autism in 1994 who ultimately helped create a private school centered around the principles and strategies of ABA. Suzanne Letso, CEO of Milford’s Connecticut Center for Child Development (CCCD), initially found herself at a loss as to how to help her son, Tyler. She discovered ABA while researching best practices at the Yale Medical Library. “Behavioral strategies were the only ones that seemed to have any empirical support. Researchers were saying, ‘Look, kids who receive this kind of intervention end up on a very different trajectory than those who don’t. There’s this small but sizable group who can either become normal or approach normalcy and lead relatively independent lives.’”
Letso soon realized that ABA was nowhere to be found in Connecticut. “There wasn’t a single behavioral analyst nor any school that provided it, though there was an outcry for people to be able to access these kinds of services,” she says. So, along with another mother of a child with autism she met at a local playground, she set about “making it up,” putting together a team of willing therapists and a consultant who pieced together a regimen based upon what they read. Tyler proved to be apt student for a program that was definitely trial-and-error. “Ty made more progress in the first six weeks of our little home school than he had in the entire year previous,” Letso says. “But if I knew then what I know now, I believe he would have made even more profound improvements.”
Fast-forward 14 years. Tyler is now 18, with an IQ of 45, and still moderately impacted by autism. Says his mom, “When he was 4, I was told that when he was 15 he’d be in a shelter somewhere weaving baskets—he would never talk or be able to hold a job. Most of those things turned out not to be true, though he will always need supports.” Meanwhile, the CCCD, established in 1997, now educates 50 students across the spectrum in two Milford locations (a new facility will break ground this fall), providing individualized, 30-hour-per-week core programs administered by 74 full-time employees. There’s also a home-based outreach program, community education and recreation initiatives and a vocational training program. CCCD has been profiled in the Wall Street Journal and named one of the top professional providers nationwide for children with autism.
Ivor Lovaas’ original studies projected that 50 percent of autistic children treated with ABA would make a full recovery, but Letso admits that the true percentages are not nearly that high. “We have our share of kids who have either lost their autism diagnosis upon re-evaluation or graduated from the program with a lesser diagnosis, like ‘learning disabled,’” she says. “We hope that they will have marriages and families and mortgages like the rest of us. We also have kids who have been with us since the school started. But if we count only children who have lost their diagnosis as successful, then we’re doing children who have made significant gains in what they can learn and do a huge disservice.”
What happens to kids with autism when they grow up? For that matter, what’s being done to educate the significant others—parents, peers, siblings, neighbors, teachers, law-enforcement agents—who are dealing with people on the spectrum every day? Community networks like ASCONN and Wallingford’s Autism Spectrum Resource Center (ASRC) aren’t the only agencies that have tried to step into the breach, but they’ve been among the most active.
Small but stalwart ASCONN, established in 1977 as a chapter of the Autism Society of America, has a three-prong mission: information and referral, advocacy and financial assistance. It hosts autism orientation workshops for parents, teachers and school paraprofessionals, faith communities and even Girl Scout troops, and sponsors an annual statewide conference every April during Autism Awareness Month. Moreover, the society offers a grant program, awarding stipends of $1,000 to parents of autistic children who need safety and security items (30 such grants were given out last year). “Many kids with autism don’t have language, don’t respond to their name and don’t understand danger,” says Sara Reed, “but can figure out locks and climb out windows. I’m not aware of anyone offering any program like ours.”
Founded in 1990 by Lois Rosenwald, the mother of a grown son with Asperger syndrome (who today works in the insurance industry), ASRC’s reach has been even more formidable. Its initiatives have included establishing support groups for adults on the spectrum (and spouses of men with autism); in November, the center will host its first “transition conference,” designed to educate parents and school personnel on the needs of the high school graduate with autism. Says Rosenwald, “We’ve got kids who we’ve put all this money, energy and time into, and then they graduate at 18 or 21 and that’s really the end of the road for services that are available in Connecticut. The high schools are just not doing their jobs getting these kids ready to go to work. We’ve just brought on a transition consultant. Her job is going to be getting out there and helping families on a one-on-one basis, but also working in the school districts.”
Another major initiative has been educating “first responders”: policemen, EMTs, emergency-room personnel and fire departments. Because of their inability to understand what Ami Klin calls “implicit social rules,” people with autism often find themselves in trouble with the law for not understanding that, say, following someone on the street might be perceived as stalking, or that (among its other negative aspects) downloading child porn from the Internet is illegal. “We’ve had four people this year alone in the state of Connecticut who have been arrested for the latter,” Rosenwald says. “We know young men go online and go to porn sites; our folks aren’t any different in that respect. But they’re not predators, just very naive.”
One of Rosenwald’s proudest achievements has been the launch of a pilot program in peer-to-peer social mentoring for adults on the spectrum in the New Haven area, an idea that she hopes will help change the too-sad and familiar scenario of adults with autism falling into the grip of the mental health system or nursing homes. “This gets people out of the house and teaches them appropriate community behavior, how to access public resources, shop for and cook meals, do their banking, even find a job. We feel a very large portion of the population can work and support themselves. They’re never going to be without a need for limited services, but we’re not talking big dollars here. Through this program we’re seeing people who had no self-esteem start to blossom. Give a person a job and a friend, and it’s amazing what those two things can do.”