Ronan boy's autism treatment shows promise
RONAN - Four-and-a-half-year-old Jake Janssen spends most of his day in his Ronan home playing with toys, painting and playing word games with an adult.
But Jake is doing a lot more than just playing. The activities are part of an intensive behavioral treatment for autism - which Jake has - that stresses positive reinforcement when an autistic child is engaged with others.
Autism is a syndrome in which children are unable to form normal social relationships and become very detached from others. They have trouble interacting with family members and other kids, and often do not develop normal verbal skills.
Autistic children often exhibit repeated body movements, such as hand flapping and rocking, and become attached to certain objects. In severe cases, they may act aggressively towards others and themselves.
Richard Janssen, Jake's father, said Jake was a normal, happy child until the age of 2 1/2. Then he started displaying many signs of autism.
"He just stopped and retreated into his own little world," Richard said. "He went from being a happy, smiling kid to just being there."
Jake became detached from the family. His smiling face became one of indifference. The Janssens didn't know what the problem was.
"Talk about stress levels going up," Richard said in a recent interview at his Ronan home.
About a year later, in May 1998, Jake was diagnosed with autism. Often it takes time for autistic children to be properly diagnosed because the symptoms resemble a number of other developmental disabilities. The Janssens finally knew what the problem was.
They had to choose the best treatment for Jake. Understanding of autism has grown a great deal in recent years, but treatment options are still somewhat limited. Julie Janssen, Jake's mother, heard about the Lovaas method, and the Janssens decided it was the best option.
Applied behavioral analysis, which is commonly called the Lovaas method, is based on giving autistic children constant attention to keep them engaged with others. It is important for treatment sessions to be intense, and it's most effective when the child is in therapy 40 hours a week.
The therapy was pioneered by Dr. Ivar Lovaas, of the University of California at Los Angeles, and most Lovaas therapists train directly under Lovaas.
The Janssens learned of Steve Michalski, a Lovaas therapist, from a woman in Billings. Michalski founded the Redwood Learning Center in Chatham, N.J., which specializes in treating autistic kids with the Lovaas method.
Michalski, who was trained by Lovaas, has clients in 15 states and England, including six clients in Montana. He came to Montana and began therapy with Jake right away.
"When Steve (Michalski) first came he made Jake sit in a chair for three hours," Julie said. "Steve just sat there and Jake screamed the whole time, but he learned that he needed to sit there in order to get his reward. The next day Jake sat in the chair right away."
Rewards for desired behavior, such as praise, hugs, toys and food, are central to the therapy. The rewards are given directly after the desired behavior, and over time the behavior increases. Negative reinforcement is not used, except in telling the child "no" in a direct way when they do not behave as desired.
The therapy starts with small goals, such as sitting in a chair, and gradually progresses to more complex social and cognitive goals as the child responds to the routine of the therapy.
For example, Michal Ann Stedje, who works with Jake three hours a day, plays a game with Jake in which he is asked to identify an object. Stedje shows him an object and asks him what it is. When Jake gives the correct answer, he is rewarded with praise.
Wrong answers get a "nope" response, but after two wrong answers Stedje moves to something she knows Jake will get right. All exercises should end with the correct answer, and with a reward for Jake, Stedje said.
"The more fun it is for him the more he wants to work," she said. "We've started expressive language exercises, and he's become a lot more verb
Michalski said the strengths of the program are the number of hours a week spent in therapy, the age at which therapy begins and the consistency of treatment. The involvement of the parents in every aspect of the treatment, he said, is also crucial to the program because they also need to work with the child.
"A huge part of the program is consistency," Michalski said. "A typical kid learns all day long. Autistic kids do not, but in this program they are."
The characteristics of a good Lovaas therapist, Michalski said, are someone who loves kids, is dependable, takes directions well and has a lot of energy. He said therapists need to keep a child engaged for three hours, the maximum time per day a therapist should work, and should be physically and mentally exhausted at the end of a session.
The therapy is resource intensive. It takes three people for a child for a full week of therapy. But Michalski said the cost is worth it because it pays off in the long term.
"If you devote two to three years to a kid's development, they need much less attention the rest of their lives," he said. "It costs the state a lot to take care of an autistic adult."
Kathleen Gallacher of the Comprehensive Development Center in Missoula said that unlike a lot of treatments for autism, the Lovaas method has a research base that supports its efficacy. But the research itself is controversial because much of it has been conducted by Dr. Lovaas himself.
His studies have shown that 47 percent of autistic kids who receive the treatment are able to achieve normal intellectual functioning and successfully attend public schools.
"Most of us who are involved in the field see a place for this kind of treatment," Gallacher said. "But some believe there may be better treatments."
There are always critics of any revolutionary treatment, Michalski said, and he admits that he has a bias because he was trained under Dr. Lovaas and practices the method. But he said he has seen children improve with the therapy.
"People are looking for magic pills," Michalski said. "People thought secretin was and it's not. With a disability like autism, that has such a wide variation among kids, you won't find an easy answer."
Michalski visits the Janssens every three months to train therapists in new techniques. He is moving to Salt Lake City soon, where he is opening a second Redwood Learning Center office. The move will greatly lower the cost of his visits, which have been expensive for the Janssens.
Richard said Jake's care has put a tremendous financial burden on the family. Living in a rural area has been a mixed blessing for the Janssens. There are no Lovaas therapists in the area, which is why they have to fly Michalski out every three months, but they have had a lot of support from the community of Ronan.
Twenty hours of therapy for Jake is paid for by the Ronan School District, 11 hours are paid for by the Confederated Salish and Kootenai Tribes and five are paid for by the Comprehensive Developmental Center in Missoula. And last fall the Janssens had an Indian taco feed in Ronan that raised $1,500 for Jake's therapy.
The help is greatly appreciated by the Janssens. But they are looking for a couple more therapists so Jake can get at least 30 hours a week.
They have noticed a big change in Jake since he started the therapy. Richard said he talks more and is more social with others, including his 2 1/2-year-old sister Jenna. And that is essential if they are to reach their goal of having Jake attend kindergarten in 2000.
Stedje will be the person to help Jake make the transition to school. Soon she will start a writing program for Jake to prepare him for school.
Although they are encouraged by Jake's progress, the Janssens realize they have a long way to go to reach their goal of a normal life for Jake.
"We just basically want him back," Richard said. "We want the happy kid that wants to be part of the family."
And they believe autism is something that can be overcome with hard work.
"That's why God gave him to us
," Richard said, "because he knew we would take care of him."