Some autistic kids' parents dispute criticism of nontraditional treatments
(Orange County Register, The (CA) (KRT) Via Thomson Dialog NewsEdge) SANTA ANA, Calif. _ Joseph is lying in a hyperbaric oxygen chamber, breathing from a mask and playing Nintendo.
The therapy is meant to clear the fourth-grader's head and repair nerve damage linked to a 7-year-old autism diagnosis.
It's routine for him _ breathing pure oxygen on the second-floor landing of his parents' home. But it puts the lean, good-natured boy directly in the vortex of a contentious debate about what causes autism and how it can be treated.
Joseph Farrell, 10, joins what some parents and doctors say is a growing group of children who have "recovered" from autism, partly because of alternative treatments largely dismissed by mainstream doctors.
Parents nationwide are turning to treatments such as oxygen therapy, chelation and a wheat- and dairy-free diet to treat autism, many under the supervision of doctors trained by the Autism Research Institute in San Diego.
Although there is no national data, a 2004 report in the Journal of Developmental and Behavioral Pediatrics showed one in three recently diagnosed Philadelphia children use such treatments.
Many doctors and researchers are concerned that parents are spending considerable money and emotion on treatments that don't help or could cause harm. Last summer, a Pennsylvania boy died while being injected with a chelation drug meant to eliminate toxic metals from his body.
"There is no scientific valid evidence that any of these treatments alter the natural course of the disease,'' said Edward Ritvo, UCLA professor emeritus and author of "Understanding the Nature of Autism and Asperger's Disorder: Forty Years Along the Research Trail."
"I'm very glad (Joseph) got better, but he got better because it was the genetic program and God's will, not because of what was done to him," he said.
Answers are important for the parents of the nearly one in 166 children reported to have an autism spectrum disorder, including autism, Asperger syndrome and pervasive development disorders.
In California, the number of autism diagnoses has risen to 28,000 from 6,000 over the past 10 years, according to the state Department of Developmental Services.
An autism diagnosis can be devastating. Symptoms, ranging from mild to severe, include communication problems and obsessive or ritualistic behaviors.
Inflaming the debate is the belief among some parents that mercury in vaccines poisoned their children, a thesis rejected by the Centers for Disease Control and Prevention and the Institute of Medicine. Doctors worry that some parents shun vaccines altogether, putting children at risk for polio, measles and whooping cough.
Joseph's parents, Joe and Selina Farrell, say their oldest son never would have improved the way he has without costly, extensive treatment like the $21,000 hyperbaric chamber. Joseph also follows a strict diet and a $500-a-month regimen of pills, including fish oils, vitamins, minerals and a detoxifier.
He recently was weaned off the oral chelators. Chelation usually involves taking a chemical _ by pill, injection or lotion _ that binds with heavy metals in the body and comes out in the urine.
"We can't wait for science to catch up," said Selina Farrell, member of a California-based parent group, Talk About Curing Autism. "I want people to know that there is a child who did these things and really did recover."
Researchers are launching studies, some federally funded, to scrutinize what parents say.
"When you consider anecdotal evidence, they sure present a strong story for some of the treatments," said Robert Hendren, executive director of the UC Davis M.I.N.D. Institute. "I think it is worth considering rather than dismissing too quickly."
Joseph was born healthy at 5 pounds, 14 ounces. He developed normally, his parents said, until he was about 10 months old, when he began to flap his hands, a common behavior with autistic children.
He started talking and interacted well, but then his language regressed. He had tantrums. He'd lie on the floor, pace or jump.
His parents, both lawyers, felt Joseph was being stolen from his body. But several pediatricians said not to worry.
When he was 3, Joseph went to preschool. Other children were talking in sentences. Joseph was still pointing, saying only words like "desk" and "computer." He sat and spun wheels on trains. "I felt my blood go cold," Selina Farrell said.
After a neighbor mentioned autism, Farrell discovered the Autism Research Institute on the Internet. It was founded by Bernard Rimland, who wrote a 1964 book challenging a long-held belief that autism was an emotional disorder caused by poor mothering.
Rimland recommended a diagnostic survey for Joseph. They knew immediately. "It was a total relief to finally have a name for the disorder," Farrell said. "I knew the enemy."
The Farrells started Joseph on Applied Behavior Analysis, a now widely accepted therapy including intensive behavioral and educational training. They joined Talk About Curing Autism, a 1,400-member parent group that supports biomedical treatments.
The Farrells also went to a conference held by Defeat Autism Now, a project of the Autism Research Institute. The institute holds meetings around the country, often leading children onstage who they say have lost their autism diagnosis.
At the conference, the Farrells heard the still-debated theory that autistic symptoms can be caused by intestinal and immune-system problems that prompt toxins to affect the brain. They believe Joseph was poisoned by toxins injected in the 16 vaccines and the antibiotics that he was given before the age of 2.
Proof, they say, lies in the boom in autism diagnoses in the past two decades, which came in tandem with an increase in vaccinations recommended for children.
They started Joseph on a wheat- and dairy-free diet. After some months, they said, Joseph began to think more clearly and had less self-stimulating behavior seen in autistic children.
They also determined that Joseph had yeast infections that were affecting his behavior and decided to try an anti-fungal medicine. They saw great improvement, but unsure if it was because of the medicine, they stopped using it. He began to pace and flap his hands again.
When Joseph was 5, they consulted a doctor now based in Texas who supports biomedical treatments.
"The only reason they know about me is because parents say my kids are doing better if you do this and this and this," said Dr. Jerry Kartzinel, who comes to California once or twice a year to treat about 200 children. Traditional doctors "refuse to look at the evidence," he said.
Kartzinel prescribed an oral chelating agent for Joseph. The Farrells could see a difference in his thinking and evidence of metals in his urine samples. Most recently, they began to put him in a hyperbaric oxygen chamber, one of the newer treatments for autistic children.
Selina Farrell believes the behavioral therapy was instrumental in Joseph's recovery but the biomedical treatments pushed him into the mainstream. Although Joseph needed a full-time aide in preschool and half of kindergarten, he now goes it alone. He excels in accelerated classes, but still struggles socially.
The center that oversaw his treatment said in 2002 that he no longer qualified for services.
"The diagnosis of autism requires very specific symptoms, and clearly Joseph doesn't have them any more," said Doreen Granpeesheh, executive director of the Tarzana-based Center for Autism and Related Disorders.
Some staff at Joseph's school are skeptical.
"He's made a lot of progress, but I'm hesitant to say he doesn't have autism," said Lynelle Laubach, the school's speech and language pathologist. "I don't think it is something that goes away."
Advocates of biomedical treatments say they don't claim all children can be cured of autism _ simply that treatments can help.
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The Autism Research Institute says treatments have helped thousands of children recover.
"We are not saying the kids are perfect. We say they are perfectly capable of getting along," Rimland said. "We are saying they are no longer considered autistic."
Joseph's pediatrician, Dr. Bob Sears of Dana Point, Calif., was skeptical when the Farrells asked him to prescribe an anti-fungal medicine to treat autistic symptoms. But he saw a difference in Joseph and decided to learn more. Now he has 200 patients he has treated biomedically.
"The number of times we see amazing results is often enough to keep me really excited about it," Sears said.
Skeptics say autistic children can naturally improve over time. They talk about the placebo effect. They point to secretin, a gastrointestinal hormone therapy that spread in popularity after news that it helped several autistic children. Scientific studies did not support the theory.
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The American Academy of Pediatrics in 2001 issued a statement dismissing most alternative treatments, including chelation and special diets. However, it directs doctors to stay supportive and involved with parents interested in such endeavors.
"I rarely say 'don't do this,'" said Susan Hyman, an associate professor of pediatrics at the University of Rochester in New York and a member of the academy's advisory task force on autism. "Parents are in a desperate situation. They need to be aware they are taking a risk."
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Joseph is more interested in Yu-Gi-Oh cards and hanging out with his best friend, Alex, than in worrying about risks. He understands that he is taking measures designed to help him think.
"It's because I used to have autism. I'm not exactly cured, it's 99 percent," he said.
Joseph doesn't mind the diet. He hopes someday to be completely cured. "I really want to eat maybe like a full made cheeseburger and a pizza."
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