Solving the autism riddle.

Byline: Tim Christie The Register-Guard

Parents often notice a change around age 2, when their otherwise happy, babbling children turn suddenly inward.

The children become silent and spaced out. They may throw tantrums, or ignore other people - including their parents - or engage in repetitive, obsessive behaviors.

Mystified parents begin looking for answers, fearful of the dreaded A word: autism. A mysterious neurological disorder with no known cause and no cure, it has confounded the medical establishment for decades.

As autism rates have increased dramatically in recent years - Oregon has the highest rate in the country, according to federal statistics, and Eugene's are higher still - parents frustrated by the lack of proven medical treatments are turning to alternative therapies.

They're putting their children on special diets. They've cut out wheat, dairy and other foods and plugged in a boatload of dietary supplements. Some put their children through a therapy intended to cleanse their bodies of heavy metals.

No one knows how many families are using this approach, sometimes called biological or biomedical treatment, which is based on the idea that the key to the autism mystery is in a child's gut. But there are hundreds of such families in Oregon, including a cadre of parents in Eugene, centered on a nonprofit group called Bridgeway House.

There is none of the rigorous scientific evidence that mainstream medicine relies on to prove or disprove this approach; parents are relying on word of mouth and anecdotal evidence to provide some hope.

"The real answer is, we don't know much" about how diet and nutrition affect autism, said Dr. Margaret Bauman, a child neurologist at Massachusetts General Hospital for Children.

That lack of knowledge may change. Doctors and researchers in the Northwest are linking up with others around the country in an ambitious attempt to learn more about how to recognize and treat autism.

In the meantime, parents who've tried the alternative therapies harbor few doubts that they work.

A force of nature

Sophie Wigney - of late, she insists on using the Hungarian diminutive, Zsofica - is a pretty, smart 8-year-old with long brown hair and a thing for natural disasters.

For Halloween, she dressed up as a tornado. She sometimes plays a game with her mother called "informational toes": When her mother pulls on one toe, she recites myriad facts about, say, earthquakes. Pull on another toe, and she tells all there is to know about volcanoes. Another toe might have the scoop on tornadoes.

At times, Sophie herself feels like a force of nature. As she once told her mother, "Sometimes I feel like a volcano inside."

If no one told you, Sophie might seem a little different to you, but not autistic. She attends private school. She plays the violin. Her mother, Patricia Wigney, attributes her daughter's improvement to the biological treatment that began when she was 4 years old. Borrowing a phrase from a book title, Wigney said her daughter is "just this side of normal."

"That's the idea of all this therapy," Wigney said. "She can't be picked out of a room."

On a recent Tuesday afternoon, Sophie sat on the floor in the den of her family's home west of downtown Eugene, barefoot, playing games with Melissa Bow, a teaching assistant who comes by twice a week to engage Sophie in play therapy.

When she gets frustrated, as when Bow encourages her to put a game away more quickly, her voice rises. "But I'm as fast as a tornado!" she insists.

After the games, Sophie and Bow go out in the backyard and jump on a trampoline. Sunlight slanting through the trees provides little warmth on this cold winter afternoon. As Sophie and Bow jump in circles, pine needles flying off the trampoline, Sophie asks her mother, "Can you get me some more?"

"More what?" her mother asks.

"Guess!"

"Pizza?"

"Yes!"

"Not while you're on the trampoline!"

Soon, they go back inside, and Sophie scarfs down what's left of an olive and cheese pizza her mother made her for lunch. This is no ordinary pizza: The crunchy crust is made of rice flour, the cheese is made of tofu, and the tomato sauce and olives are organic.

This is how Sophie eats: no wheat, no dairy, virtually all organic. She can eat five grains: corn, rice, quinoa, millet and buckwheat; Wigney rotates them to keep her daughter from developing allergies. One counter in the kitchen is kept completely free of all wheat and dairy products to avoid accidental contamination.

Sophie is also on a complicated regimen of dietary supplements. At any given time, she takes nine or more supplements, plus a shot of vitamin B-12 every third day. She takes potassium, inositol, GABA (gamma-aminobutyric acid, said to induce relaxation and stimulate human growth hormone), St. John's wort, fish oil, niacin, magnesium, zinc and melatonin. There's another basketful of supplements in the pantry that she no longer takes.

"I'd rather do this than Ritalin," Wigney said.

A network forms

Earlier this year, a coalition of doctors, parents and researchers joined together, hoping to unlock some of the mysteries of autism and find some answers for families like Sophie's.

The Autism Treatment Network represents a national effort to develop effective medical treatments for autism. Six academic centers - Oregon Health & Science University, University of Washington Medical Center, Massachusetts General Hospital, Baylor College of Medicine, Cleveland Clinic and Columbia University Medical Center - have agreed to jointly examine three specific medical issues related to autism.

The centers each will evaluate hundreds of children, using the same neurologic and medical protocols, and track intestinal, metabolic and sleep problems.

Network leaders plan to develop a set of "best practices" guidelines for identifying and treating autism that can be shared with other medical providers around the country. The centers will share a centralized database to better understand the nature and scope of health issues in autism.

Creation of the network "stemmed from the hypothesis that children with autism are getting lousy health care," said Bauman, the child neurologist who is the network's medical chairwoman.

Some parents try hard not to tell the doctor their child is autistic, she said.

"The typical response of the average primary care physician is to say, 'It's his autism, go see a neurologist, go see a behaviorist, it's not my problem,' ' she said. "In large part, we haven't trained our medical students and our residents very well to look for this."

Howard and Esther Hunter, former Eugene residents who now live in Ashland, said they got little help from doctors when they were trying to figure out what was wrong with their son, Landon.

"The pediatrician didn't have a clue," Howard Hunter said. "The people we thought were the best in the field weren't able to diagnose him."

Doctors are looking for one thing to fix, he said, "when these kids may need 10 things."

What the Hunters finally concluded, when Landon was 6, was that he had too much mercury in his body. They searched on the Internet and found out about biomedical protocols for treating autism. Then they went to see Dr. John Green in Oregon City.

A focus on diet

Green is the doctor to see in Oregon for alternative, biological treatment of autism.

Trained as a general practitioner at the University of Utah School of Medicine, Green began treating children with autism through their diets in the early 1990s, and now his practice focuses almost solely on autism.

Most of the children he sees improve with dietary changes, he said. Some improve dramatically. Some he can't help.

He views the biomedical approach as a safe, relatively cheap therapy, with low risk and potentially big benefits.

He usually starts by taking children off foods with glutens - wheat-based foods - and caseins - dairy products. "Those are common allergens," he said.

Food allergies can cause a host of health problems in autistic children: sleeplessness, diarrhea or constipation, and ear infections, he said. In turn, those medical issues can cause behavioral problems. Removing food allergens from their diet can help them feel better and sleep better, and therefore behave better, he said.

Dr. Bob Nickel, medical director for autism research at Oregon Health & Science University, said there's a lot of anecdotal evidence but little solid medical research into links between autism and gastrointestinal problems.

"It's harder to detect these gastrointestinal problems, particularly in kids with autism with little language, because they can't tell us," he said.

Green makes regular visits to Eugene, seeing patients at Bridgeway House, an organization for autistic children and their families that operates out of the Kaufman Senior Center. Among his patients are Landon Hunter and Sophie Wigney, whose parents say their children have made great strides after dietary changes.

It's not known how many other parents have taken this approach, but it appears to be gaining in popularity. For example, the most recent conference of the Autism Research Institute, which studies the connections between autism and human biology, was sold out, with 1,200 parents and doctors in attendance.

"There's just an ongoing wave of parents who do this work and see improvements and have no questions" about whether it works, Green said.

A disorder on the rise

Autism rates have been on the rise in recent years, although the reasons for the increase are unclear. The Centers for Disease Control and Prevention estimates that 1 in 166 children fit somewhere on the autism spectrum, compared with 1 in 2,000 20 years ago.

In Oregon, the incidence of autism among school-aged children has increased from just more than 585 in 1992-93 to 3,989 in 2003-04, a 581 percent increase, according to the state Department of Education. In Eugene, the incidence has increased from 42 children with autism in 1994-95 to 217 in 2004-05, the department said.

In 2003-04 school year, 7.9 percent of Eugene's special education students had autism as their primary diagnosis, compared with the state average of 5.6 percent, according to the education department.

Experts attribute at least part of the increase to a broader definition of autism disorders and better recognition of the problem by doctors.

Many parents and some doctors point to mercury - in the environment, food and vaccines - as a major culprit, though this remains highly controversial and contentious.

While the mercury question may not be resolved anytime soon, parents and doctors continue looking for answers.

Doctors such as Bauman at Massachusetts General don't hesitate to tell parents to take their autistic child to see a gastroenterologist or a dietitian to check for intestinal problems and to make sure the child's basic nutritional needs are being met. But others aren't ready to embrace the biomedical approach until more research is done.

"The wish to have a really strong, evidence-based foundation in medicine keeps doctors from joining into this work until the knowledge is further along than it is now," said Green, the Oregon City doctor.

Nickel, the OHSU doctor, said: "I'm cautious. Before I could recommend a treatment, I need to see that the research is there to recommend it."

Parents who try the biomedical approach should try one treatment at a time, and keep notes on how the child responds before trying something else, Nickel said.

"We have parents come into the clinic and they've started five or six different treatments at the same time, so we don't know which is really helping the kid," he said.

Howard Hunter said the nutritional approach worked for his son, Landon, now 10. The Hunters started giving Landon dietary supplements, and removed dairy, soy, wheat and strawberies from his diet, when he was 6.

Green said Landon has improved so much he's almost off the autistic spectrum. His father agreed that Landon has made huge improvements.

"He's smart. He can run fast. He has as many friends as anyone I know," Hunter said. "He's thriving and he's healthy."

But he's not sure what exactly made his son better.

"Maybe we did so many things you don't know what has healed him," he said.

AUTISM RESOURCES

Autism Treatment Network: www.autismtreatmentnetwork.org

Autism Society of America: www.autism-society.org

Autism Coalition: www.autismcoalition.org

National Alliance for Autism Research: www.naar.org

National Institute for Mental Health: www.nimh.nih.gov/publicat/autism.cfm

CAPTION(S):

Patricia Wigney gives a little extra support to her autistic daughter, Sophie, during one of her regular therapy sessions. Cookies that are free of glutens (wheat) and caseins (dairy) are part of a carefully chosen diet at a potluck gathering of Bridgeway House, an organization for people with autistic children. Chris Pietsch / The Register-Guard Patricia Wigney plays a game with her autistic daughter, Sophie, called "informational toes," in which Sophie can recite a wealth of facts as each toe is pulled. Sophie gets regular play therapy as part of her treatment. Patricia Wigney describes her daughter as "just this side of normal." A VEXING DISORDER