Autism treatment gaining acceptance~Florida Times Union

[Guest guest]

The following is a great article in our local paper written about

Dr. Buckley, Dr. Jerry Kartzinel and their wonderful work with

children with autism. If you can e-mail Deirder Conner a comment, I

believe it would open the door for more articles on autism. Thanks

so much!

deirdre.conner@...,

http://tinyurl.com/2khje5

The Florida Times-Union

December 18, 2007

Autism treatment gaining acceptance

By DEIRDRE CONNER,

The Times-Union

PONTE VEDRA BEACH - The clinic is easy to miss, just a squat,

unassuming modular on Palm Valley Road.

Parents who have traveled thousands of miles to see these physicians

often wonder: Could this really be it?

In the tiny waiting room, there's no sign of a receptionist, or even

a little sliding-glass window. The walls are hand-painted with zoo

animals, and the floor is packed with toys. It feels more like a

house overcrowded for the holidays than a sterile, efficient

doctor's office, which Buckley and Jerry Kartzinel say is

exactly the point.

The partners and pioneers in a biomedical treatment for autism are

digging out from an avalanche of calls after one of their patients'

parents, actress McCarthy, went public with a memoir of her

family's life after her son's autism diagnosis. The two, especially

Kartzinel, have been speakers for years on the topic and draw

patients from around the world.

Clearly, though, there's more to this than star power. The approach

appears to be gaining traction - or, perhaps, acceptance - with some

traditional physicians and pediatricians, despite its controversial

affiliation with those who believe vaccines cause autism.

Perhaps it's because they believe the science behind the treatment.

More likely, though, it's because their patients' parents do.

Whatever the reason, Buckley thinks the mainstream research

establishment, such as Tom Insel, the director of the National

Institute of Mental Health, is listening. Buckley and Kartzinel were

invited to the conference sponsored by CARD, the Center on Autism

and Related Disabilities. And, she said, the American Academy of

Pediatrics finally sent a representative to a Defeat Autism Now

conference.

" It's a step in the right direction, " Buckley said.

Defeat Autism Now, or DAN, is the term that describes the regimen

used by doctors such as Buckley and Kartzinel and involves a range

of treatments tailored to each child. They include a wheat-free,

dairy-free diet, vitamin supplements and, for some, chelation

(chemicals that remove metals from the body) and time in a

hyperbaric oxygen chamber. They test for trace metals such as

mercury and aluminum, do biochemical analyses of mineral levels in

the blood, and test for allergies, among other things.

It takes time, and money, from the monthly expense of supplements to

thousands of dollars for more involved treatments that rely on

equipment and medicine. Insurance coverage is hard to come by.

" It depends on what the kids present with, " Kartzinel said. " We take

histories, and that's how we learn what they need. "

Even before this fall, their waiting list was more than a year long

and their patient list stretched from coast to coast - and beyond.

Then came McCarthy's appearance on The Oprah Winfrey Show, detailing

the treatment she believes brought her son out of the depths of the

disorder, which usually appears before age 2 or 3.

Call volume spiked; the waiting list doubled.

Kartzinel wrote the preface to McCarthy's book and appeared with her

on Larry King Live, part of a high-profile media blitz that reached

fever pitch after the segment on Oprah.

Kartzinel embraced the method in its infancy; he introduced Buckley

after her daughter was diagnosed with autism.

There's no proof - hard, solid, double-blind repeated studies proof -

that the DAN approach works. In fact, studies haven't found much in

the way of conclusive evidence about almost any autism treatment.

What researchers do know is that parents are seeking out these so-

called " alternative " treatments in droves. And individual success

stories are becoming the driving force in the direction of research

and treatment for autism.

A 2005 study found that more than a quarter of parents of autistic

children reported using special diets for their children, and nearly

half reported using vitamin supplements. An ongoing study on the

effectiveness of chelation reported that one in 12 autistic children

may already undergo the chemical process used to remove mercury and

other metals from the body. The study is not yet complete.

'The V-word'

There's a reason all this is so controversial, why acceptance has

been hard to come by.

Kartzinel calls it " the V-word. "

That's because mere mention of vaccines is enough to cleave an

instant chasm between parents who believe childhood immunizations

are the source of their child's affliction and those who don't.

Whether in casual conversation, blogs or support groups, the divide

is filled with bitter rhetoric - arguments as toxic as the mercury

that one side, including Buckley and Kartzinel, believes broke their

children.

No large-scale study has ever found a link between vaccines and

autism. There's no groundswell of research that points to a cause or

treatment for autism, a complex disorder that most scientists

believe has both environmental and genetic underpinnings.

The idea is that one or more genes are susceptible to one - or many -

hazards in the environment.

It's just that no one knows precisely what they are, said

, a University of Florida pediatrician and geneticist and

consultant to the CARD program in ville.

" [There is] truly something in our culture or our environment that

makes it more risky today than 30 years ago, " he said, something

that makes the disorder all the more perplexing.

believes that a surge in genetic and environmental research

could result in huge advances in treatment over the next two to five

years. There are also clinical trials testing the type of treatments

used by doctors such as Kartzinel and Buckley, from antibiotics to

chelation to anti-psychotic drugs to hyperbaric oxygen therapy to

supplementation of vitamins B, C and zinc. The National Institute of

Mental Health is set to conclude a four-year study into the wheat-

free, dairy-free diet in 2008 and also will report that year on a

130-patient study on mercury chelation.

Right now, though, families have to stumble through a maze of

approaches after getting an autism diagnosis. And because children

often receive a cornucopia of different treatments, it can be

difficult to figure out which therapy is working.

" Someone told me once, If you're not thoroughly confused by all the

treatments, you don't understand them, " said. " There's no

prescriptive way. "

In the maze

and Rose know the confusion - and the alienation.

They knew their pediatrician didn't approve when they brought their

4-year-old son, athan, to Buckley - although he didn't tell them

explicitly not to do it.

They say they've seen changes in , who is on the diet. He also

attends a private day care that uses Applied Behavioral Analysis and

caters to children with autism, where about half are on the same

diet. His vocal abilities and behavior have improved, Rose

said.

" I thank God we've been stuck in her path, " she said.

So does Duke, who is both traditional physician and parent

of an autistic child. Most DAN doctors have been touched by the

disorder in some personal way.

Her 12-year-old son has Asperger's, a disorder on the autism

spectrum. After years of difficulty and a misdiagnosis of Attention

Deficit Hyperactivity Disorder (ADHD), Duke found Buckley and

Kartzinel. Eventually, she and her partner sought training from the

two as DAN doctors.

She has added that to her family practice in Macon, Ga., and

recommends her pediatric patients split up vaccines into individual

portions or delay them, instead of to giving them all at once.

A traditionally trained physician, she was skeptical at first.

" My first blush was, these are people who are conspiracy theorists,

the-government-is-trying-to-poison-us people, " she said.

Even now, Duke admits she's not yet completely " out of the closet. I

want to just do it and let the results speak for themselves. "

deirdre.conner@..., (904) 359-4504

Autism treatments

The U.S. Centers for Disease Control estimates that as many as one

in 150 8-year-olds may have autism. But treatments vary as wildly as

the children on the autism spectrum. And unlike chemotherapy for

cancer or antipsychotics for schizophrenia, few of the regimens are

backed by years of solid research. Only Applied Behavior Analysis

and its offshoots have gained broad acceptance from researchers. The

American Society for Autism recommends that parents keep in mind

that scientific studies are often difficult to do because each

individual on the autism spectrum is different. Research into all of

these treatments is ongoing.

- Gluten (wheat)-free, casein (dairy)-free diet

- Chelation

- Applied Behavior Analysis (ABA)

- TEACCH (Treatment and Education of Autistic and Related

Communication Handicapped Children), a comprehensive approach with

services ranging from speech therapy to a specialized teaching

system

- Picture Exchange Communication Systems (PECS)

- Speech/language/occupational therapy

- Pivotal Response Treatment/Early Intensive Behavioral Intervention

(EIBI), an intense therapy that rewards good behavior and ignores

negative behavior

- Floortime, a form of therapeutic play that encourages interaction

- Social Stories, a program that builds social skills by explaining

situations that may be difficult or confusing

- Sensory Integration, a therapy that uses touch, smell, sight or

sound experiences to help with over- or under-sensitivity

- Relationship Development Integration (RDI), a therapy that aims to

build up a person's ability to develop relationships and manage

emotions

- Anti-fungals/probiotics

- Vitamins/minerals

- Secretin

- Melatonin

- Psychotropic medications, such as anti-depressants, anti-

psychotics and stimulants

- Immunoglobulin injections

Source: Autism Society of America, Research Autism, U.S. Centers for

Disease Control, National Institute of Mental Healthcms_sidebox()

This story can be found on ville.com at

http://www.jacksonville.com/tu-

online/stories/121807/met_226363926.shtml.