Difficult choices
Variety of treatments face parents of autistic children
Anke Kriske's 14-year-old son, Derek, has been on medications such as Ritalin, Adderall, and Prozac. He is on a special diet that limits yeast, wheat, and milk. And recently, he has been trying neurofeedback, where sensors on his head monitor and stimulate brain waves.
The approaches may be diverse, but the intention has been uniform: helping Derek overcome his autism.
Like many parents of autistic children, Kriske, who lives in Natick, has navigated a perplexing world of treatments for a spectrum of disorders that have no known cause or cure. While stories of children overcoming autism are not unheard of, many families are constantly searching for the right treatment -- consulting with other parents, their doctors, and the Internet -- with little assurance that anything will help their children.
"You just don't know," said Kriske, who, like other local parents, was disappointed that clinical trials of a synthetic hormone were deemed unsuccessful a few weeks ago. "Is it going to work or isn't it?"
The Autism Society of America estimates that one out of every 250 babies will develop a form of the disorder, which is thought to be rooted in genetics and often characterized by language difficulties, social withdrawal, and repetitive behavior. Because the type and severity of the disorders differ from person to person, many believe no single treatment will be universally effective.
"Our position is there isn't one treatment," said Rob Beck, president of the Autism Society of America, which has adopted an "options policy" that supports parental choice in selecting treatment methods.
The National Institutes of Health launched its first major autism research effort in 1997, said Alice Kau, a science officer with the organization. While research first focused on isolating the cause of autism, Kau said, it has broadened to include studies of different treatments, including medications. The NIH spent $74 million on autism research in fiscal 2002, Kau said, and has recently begun defining a 10-year plan of research goals.
For now, some insist that those working with autistic children stick to what they know. The New England Center for Children in Southborough, which caters to children with autism, practices an intensive form of therapy that helps them learn functional skills through conditioning and reinforcement. Many doctors and professionals say this type of therapy is the only treatment to have shown measurable results in helping children with autism.
Vincent Strully Jr., the center's executive director, said he understands why "desperate" parents might consider various treatments. But he questions whether some methods, such as restricting a child's diet, ultimately do more harm than good. Families who enroll their children in the New England Center for Children -- there are currently about 230 students -- must agree to the treatment program the school offers.
"We don't see these kids as experimental guinea pigs for the latest cure du jour," Strully said, adding, "We want parents to be informed advocates for their kids, and to choose wisely."
Jill McGrale Maher, who runs a program for autistic children in Marlborough's public schools, also cautions families to think about how certain treatment methods might interfere with the behavioral therapy her program uses. Special diets, for example, are difficult to manage, she said, and may force unnecessary restrictions on children -- which is why she encourages parents to wean their children off them.
McGrale Maher, formerly of the New England Center for Children, feels strongly about the therapy approach. But she acknowledges that different children can respond differently to the same treatment.
Some parents and experts say other treatment methods have shown promise.
According to the Autism Society, there have been reports that some autistic children showed improvement after taking secretin, a hormone that aids digestion. But earlier this month, Waltham-based Repligen Corp. announced that a synthetic version of the hormone had failed clinical trials as a treatment for autism.
Marjorie Hansen's 4-year-old son, William, participated in the recent trial, but she was unsure whether he was receiving an injection of the hormone or a placebo. If he was actually receiving secretin, she said, the improvements in his condition were so slight she doubts she would have continued with the hormone if it had not failed its trial.
Hansen and her husband look for alternative treatments to complement the behavioral therapy William receives at Framingham's BLOCKS preschool program.
"You like to try things," said Hansen, who lives in Framingham. "And some things work and other things don't work."
Some believe that people with autism may have food allergies or digestive problems, which could contribute to behavioral issues, according to the Autism Society. Like Kriske, Hansen tried eliminating wheat and milk from her son's diet and said she saw certain repetitive behaviors disappear within two months. She believes William was allergic to certain foods, which caused him pain and prevented him from responding to the behavioral therapy. She has begun reintroducing wheat into his diet and said the behaviors have not reemerged.
Kriske said that while she saw little improvement when Derek was on medications traditionally used to treat hyperactivity and depression, she has seen improvement since limiting his intake of wheat, milk, and yeast and said he began to have trouble again when he went off the diet for a few days. Derek, in addition to receiving more traditional behavior and speech therapy, also takes supplements of fatty acids, which have been reported to improve some autistic behaviors, according to the Autism Society.
Margaret Bauman, a child neurologist who runs a Wellesley-based practice for autistic children called LADDERS, said her staff promotes a variety of intensive therapeutic treatments, but understands that parents are interested in other methods.
"We really want to do what works best for the child," Bauman said. "Sometimes parents are going to try what they're going to try."
After receiving home-based behavioral therapy, Alison Fife's 3-year-old son, Benjamin, has been attending the New England Center for Children for less than a year. She said Benjamin is beginning to talk, and although he still can be aggressive, she has seen vast improvement in his behavior.
Fife, a Wellesley resident and psychiatrist, has read about special diets and other treatments, but has chosen not to pursue any of them, trusting in the benefits of intensive therapy.
"Unless we go down the road of hard science . . . we have to be very, very cautious," she said. But she acknowledges that as a parent she would do anything to help her son.
"If it would cure Benjamin, I'd do it," Fife said.
Unlike children with more severe disorders, Kriske's son, Derek, talks, but often only gives one-word answers or repeats dialogue he has picked up from television. He makes eye contact with visitors, proudly showing off a trophy he received from a bowling league he participates in. He is social, but still is in a special classroom at Wayland High School.
Kriske said her goal in trying new treatments is to help him become more independent.
"There comes a point where you've just got to experiment," she said. "Mainstream medicine just doesn't have enough good answers."
Emily Shartin can be reached at eshartin@globe.com. 