At 5, David still wasn't speaking. Diagnosed at 4 with autism, David spent his days consumed in compulsive behaviors: incessantly flipping light switches, slamming drawers and spinning plates.
He also had several other medical problems that were greatly exacerbated by his autism. David needed help walking and required an oxygen tank to breathe. Because he had such an aversion to food, he was fed through a tube inserted directly into his stomach. He also frequently vomited when things overwhelmed him.
"We were quite a sight at the beach," says Cathy Van Leuven, David's mother.
Several professionals told Van Leuven that David would never walk, talk or breathe without assistance. Yet, today you might not notice much difference between him and any other 8-year-old.
"He's doing things that we never thought he could do," says Van Leuven.
This summer, David joined a T-ball league. He also Rollerblades and plays basketball. He laughs and smiles when he's happy (which is most of the time) and eats most foods. Though his language is a little irregular, he speaks and even reads at his age level. He still has some compulsive behaviors, but is no longer consumed by them.
"He went from a child who couldn't recognize his hands to a child who can type," says Van Leuven.
She credits David's transformation in large part to Applied Behavior Analysis--more commonly known as behavioral intervention--a form of therapy offered by the Madison-based Wisconsin Early Autism Project. Autism, believed to be a biological disorder of the brain, can range widely in the severity of symptoms. But proponents of behavioral therapy say treatment can be tailored to the needs of each child.
David improved almost immediately once the therapy began. "It was like a miracle," says Van Leuven. "For the first time, I had a kid who responded to me."
The most common description of autistic children is that they exist in a world of their own, though it is unclear whether this is a manifestation of autism or an adapted coping mechanism for a world they find unbearable, even painful.
Like David, most have deficiencies in verbal and nonverbal communication. They also tend to resist changes in routine and avoid social interaction.
When David was diagnosed as autistic, his pediatrician had never heard of behavioral intervention. David began using other therapies but he made little progress.
About a year later, Van Leuven, herself a doctor, read a now famous book by Catherine Maurice, Let Me Hear Your Voice: A Family's Triumph Over Autism. It is a personal account of the recovery of the author's two autistic children. She used a program designed by Dr. O. Ivar Lovaas, a UCLA psychology professor, who had worked with autistic children since 1962.
Like many other parents of autistic children, this was Van Leuven's first introduction to behavioral intervention, even though journal articles had previously been published showing extraordinary results. "I think it was a crime that Ivar's work in 1987 went by the wayside," says Van Leuven. "No one ever said there is this really cool stuff going on with autism."
WEAP, which works with nearly 250 children, was established in 1995 by Dr. Glenn Sallows, who had worked with autistic children at Mendota Mental Health Center.
Behavioral intervention is based on a simple premise--children with autism are not ill or diseased, just different. Moreover, for autistic children to learn, the instruction needs to be simple and concrete. Kids start by learning to pay attention, to imitate, and to comply with simple instructions--what are called "readiness skills." Social, self-help and language skills are integrated into the program and children are eventually directed in play with peers.
For the last month David has been learning to ask questions. He still struggles with pronouns, but is able to ask for things he wants.
"Once they figure out that learning is fun, then they really embrace learning," says Mark Grantin who notes his 6-year-old son Aaron has seen "dramatic" improvement since starting therapy two years ago. In fact, when I watched Aaron during a therapy session last month, he preferred doing therapy to playing with his toys. David is much the same way. "He's just happy as a clam" during therapy, says Van Leuven.
Before therapy began, Aaron had some of the same autistic characteristics as David. He was nonverbal, showed no emotion, rarely made eye contact, and frequently flapped his arms and ran in circles. Like David, some of his autistic behaviors still remain, but he has also emerged from his shell.
"We learned he has a personality," says Grantin, who remembers the morning Aaron first said "I love you": "It was the coolest thing I ever heard in my life." Van Leuven is also thrilled about the emergence of David's personality. "You can knock and finally there is an answer."
The Lovaas method claims similar success for others. According to WEAP, the therapy "produces communicative speech and improved social relatedness in 90% of those treated, and virtually normal social interaction, communicative and cognitive abilities in 40% to 50% of autistic children."
But not everyone is convinced. An unpublished article by Frank Gresham and Donald MacMillan of the University of California-Riverside concludes that the "program is at best experimental [and] does not have enough empirical data supporting its wide scale adoption in the treatment of autism."
Others accuse the therapy of using aversives--punishments such as slaps, a loud "no," or time-outs. The truth is that Lovaas no longer recommends such methods and they have never been part of the Wisconsin program.
"We wouldn't be using the program if they used aversives," says Grantin who is president of Wisconsin Families for the Behavioral Treatment of Autism, a group that fights misperceptions about behavioral therapy.
"The proof is in the pudding," says Sallows, in response to the critics. "If kids can be shown to be functioning normally after the treatment, then this is the one that should be done."
But not everyone can afford the therapy. WEAP's program is intense, and thus costly. Therapy typically lasts for two to three years and children receive about 35 hours of one-on-one therapy per week. Lovaas' studies have shown that children receiving fewer hours do not generally have equal progress.
Initially, the Van Leuvens could only afford 20 hours of therapy a week, and even that was a burden. Then in August 1996, the therapy began to be covered under the Medical Assistance program.
Had the state funding not come through, says Van Leuven, David would not have been able to continue treatment: "There was no way we could have maintained it alone." But the additional funding meant David could in fact increase the amount of treatment hours he received which "made a huge difference," says Van Leuven: "He had a significant catch-up game to play."
Wisconsin is just one of a handful of states to cover this type of therapy. One argument for such coverage is that institutional care costs more: WEAP's program costs around $72,000 compared to an average of $2 million for a lifetime of institutional confinement.
"The whole goal of this is to have the child function in the community, " says Van Leuven.
Early results indicate the state's investment is paying off. According to WEAP's last progress report, of the 57 children who started out at the lowest functional level, 28 are now able to interact normally with peers, and the number of children able to use speech doubled. This fall, 10 children entered kindergarten or first grade in regular classrooms with no special support services.
Both Aaron and David are now in school. While both still require full-time aides, they are increasingly independent and it is possible they may no longer need such assistance in the future.
Grantin realizes Aaron will likely always have some limits because of his autism, but he is encouraged by his progress. "As a parent I like to think he might be able to go to prom and be on the football team or debate team. He's going to have the potential to be an independent-living adult."
Van Leuven also thinks David will probably always require some community support, but she's hopeful that he will be able to hold a job and maybe even live on his own. Before David began therapy, she only dreamed of such things: "He'd be nowhere without the therapy," she says. "It's changed his life in a way we never though we could have."
Sallows thinks the most important result of Lovaas' work is that much has been learned about autistic children and their capabilities: "Our expectations about what autistic children are able to do, or what we thought they were able to do, were wrong."