Some autistic kids' parents dispute criticism of nontraditional treatments

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Some autistic kids' parents dispute criticism of nontraditional

treatments

[January 13, 2006]

http://www.tmcnet.com/usubmit/-some-autistic-kids-parents-dispute-

criticism-nontraditional-treatments-/2006/jan/1283638.htm

(Orange County Register, The (CA) (KRT) Via Thomson Dialog NewsEdge)

SANTA ANA, Calif. _ ph 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.

ph 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 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 (ph) 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.

ph'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. ph 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 Hendren, executive

director of the UC M.I.N.D. Institute. " I think it is worth

considering rather than dismissing too quickly. "

ph 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 ph was being stolen from his

body. But several pediatricians said not to worry.

When he was 3, ph went to preschool. Other children were talking

in sentences. ph 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 ph. 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 ph 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 ph

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 ph on a wheat- and dairy-free diet. After some

months, they said, ph began to think more clearly and had less

self-stimulating behavior seen in autistic children.

They also determined that ph 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 ph 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 ph. 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

ph's recovery but the biomedical treatments pushed him into the

mainstream. Although ph 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 ph doesn't have them any more, " said Doreen Granpeesheh,

executive director of the Tarzana-based Center for Autism and

Related Disorders.

Some staff at ph'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.

(EDITORS: BEGIN OPTIONAL TRIM)

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. "

ph'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

ph 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.

(END OPTIONAL TRIM)

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 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. "

(EDITORS: STORY CAN END HERE)

ph is more interested in Yu-Gi-Oh cards and hanging out with his

best friend, , 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.

ph 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. "