How one family treats autism

NJ Family Takes Alternative Steps To Help Autistic Girls Parents believe
vaccines at fault

By Colleen O'Dea For The Daily Record

For years, Jonathan Rose and Gayle DeLong did the best they could for
their daughters, both of whom are autistic, going beyond simple special
education programs and trying commonly accepted methods to improve their
Then, in April 2005, David Kirby's book, "Evidence of Harm," which
explores a possible link between mercury in vaccines and the explosion in
cases of autism, made them think they could do more.
Now, almost 18 months after starting their daughters on a strict
regimen of alternative therapies that includes near round-the-clock vitamins
and supplements, a gluten-free diet and hyperbaric oxygen treatments, they
finally feel they are really helping Jenny, 10, and Flora, 6.
"Both our daughters have shown clear improvement, "Jonathan Rose said.
"Jenny enters conversations more easily, and Flora has more eye
contact," DeLong said. "Concerning school, Jenny continues to do well. Her
grades are going from mainly Bs to As and a few Bs ... (Flora) has trouble
focusing, but does well once she is focused."
Possibly treatable The big news, Rose said: "Autism may be treatable,
even curable."
This view, like questions about whether childhood immunizations have
caused the meteoric rise in autistic children, is hotly debated.
The U.S. Centers for Disease Control and Prevention's position is that
there is no cure for the numerous disorders that fall under the umbrella of
autism. The agency pushes traditional educational and behavioral treatments,
as well as the use of some medicines to relieve symptoms.
Not everyone even agrees that there has been a real increase in cases
of autism over the last two decades, despite the data.
The number of students in the United States considered autistic has
risen from about 5,200 in 1991 to more than 192,000 last year, federal
education statistics show. That's an increase of close to 4,000 percent.
Where the autistic represented one-tenth of 1 percent of all special
education students in 1991, they comprised more than 3 percent of the total
in 2005.
In New Jersey, nearly 7,400 children in special education classes --
or five of every 1,000 students -- were considered autistic last year,
according to the state Department of Education. That's an increase of 60
percent in three years.
Today, the CDC estimates that as many as 1 in 166 children across the
country has autism.
Some researchers say the rise is due to an increase in classification
of children as autistic -- the definition was only fully recognized by all
states in 1994 -- but others say the data don't support that because there
haven't been declines in any other special education categories.
Many parents and several organizations believe an increase in
childhood vaccinations caused the increase.
Rose and DeLong, both college professors, said their daughters each
were diagnosed with autism around age 3½. They used the typically prescribed
treatment: behavior analysis and modification techniques with both. These
helped Jenny, but not Flora.
Vaccine theory Then the couple read "Evidence of Harm." In his book,
Kirby says it's impossible to say whether the thimerosal, which is about
half mercury, used as a preservative in vaccines, causes autism in some
children, but he lays out a convincing case that it might. The book notes
that two series of shots were added to the vaccination schedule in the
1990s, around the same time the dramatic increases in autism began.
Appearing on "Meet the Press" in August 2005, Kirby said the amount of
mercury injected into children during that time far exceeded federal safety
limits. For instance, at age 2 months, children got three shots totaling
62.5 micrograms of mercury, which was about 125 times higher than the level
considered safe by the U.S. Environmental Protection Agency.
"Mercury is toxic," Kirby said. "It's a known neurotoxin. If it gets
into the brain, it could stay there virtually forever ...We really need to
look at what this mercury is doing inside the bodies and brains of these
children if we're going to solve this mystery one way or another."
There's no question for Rose and DeLong.
"We believe the mercury in vaccines caused our daughters'autism," Rose
said. "The symptoms of mercury poisoning and autism are the same."
So with a cause, they searched for a cure.
Last summer, they found Dr. Stuart Freedenfeld, who practices in
Stockton, Hunterdon County. He is one of a number of doctors working with
the California-based Autism Research Institute on autism causes and
treatments. Freedenfeld began treating autistic patients -- he's seen about
400 -- nine years ago.
"Mercury, aluminum, nickel, we find high levels of toxic metals in a
good number of children," Freedenfeld said. "What we do with these children
some might look at and say it's alternative medicine. It's not. It's very
well-documented medicine."
He believes, as do many other doctors and researchers, that it's a
combination of toxins in a child's system and a genetic inability on the
part of only some to handle them that leads to autism. That explains why so
many children who have been vaccinated or exposed to other toxins don't
develop problems.
The treatment centers around chelation, which involves administering
substances to help rid the body of mercury and other toxins.
Freedenfeld performs tests to determine the levels of toxins in a
child's system and then tailors a plan of supplements, including magnesium,
zinc, some B vitamins and essential oils, to the child's needs. He also
strongly recommends a diet free of gluten and casein -wheat and dairy --
because almost 90 percent of autistic children have trouble digesting those
and they can act as morphine-like drugs in a child's system. He may
recommend other therapies, such as hyperbaric oxygen treatment, as well.
One cabinet in the Rose kitchen, plus a shelf in the refrigerator, are
devoted to all the supplements for the girls and DeLong, who had herself
tested and also had high levels of mercury in her system. There are creams,
injections and intravenous pushes, in addition to pills. The girls receive
their first supplement at 6:30 a.m. and their last at 11 p.m.

'30 supplements a day'
"There are about 30 supplements a day and we have to do them at
certain times," said DeLong, adding the girls are good about sitting for
The couple recently bought a home hyperbaric oxygen chamber, inside
which a person breathes pure oxygen, for DeLong and the girls, having had
success from a series of treatments through Freedenfeld's office.
The couple tracks their daughters' progress with thick pink and blue
binders that hold medical results, which show a reduction in mercury and
other toxins in their systems, and, in Jenny's case, higher scores on school
standardized tests.
More important are the behavioral results they see, which are not as
easy to quantify, but just as real, they said.
It's hard to tell there's anything amiss with Jenny. She plays with
her younger sister, smiles for a camera and willingly tells a visitor she
doesn't mind all the medicines she takes.
"I like it when it's chocolate," she said of one protein powder.
"The place where I see the most improvement is socially,"said Susan
Mizrahi, a teacher at Woodland School, who had Jenny in third grade, before
the alternative therapies, and now has her in fifth grade. "She socializes
with other students on the playground: She talks to them; she plays games
with them. It's definitely a huge improvement.
"She always got it academically, but now she raises her hand and asks
questions in class, too."
Flora's gains are not as apparent. She reads Dr. Seuss books and likes
to watch "Little Einsteins." But she is quieter and uncomfortable around
visitors. Yet just the fact that she can tolerate two strangers in her home
without becoming upset is an improvement.
The couple believe Flora's case has been tougher to treat because, in
addition to her regular vaccinations, she also was getting a flu shot each
year at her wellness checkup, since her birthday falls in the winter. An
August baby, Jenny has never gotten a flu shot. While the federal Food and
Drug Administration conducted a review that found no evidence of harm from
the use of thimerosal in vaccines, it got drugmakers to virtually eliminate
its use. Flu vaccines are among the only ones that still contain any
substantial amounts of thimerosal today.
Hope of recovery The California-based Autism Research Institute says
children can recover from autism.
"We have found that an extremely individualized approach to each child
leads to the best outcomes," said Matt Kabler, an ARI spokesman. "Children
have recovered in as little as two years and others are in the process of
recovering for many more years."
But Dr. Harvey Fineberg, president of the U.S. Institute of Medicine,
cautioned that there is no clinical proof that chelation is effective in
relieving the behaviors of autism.
"When you have a single story and a repeated story of an experience
that a parent has with a treatment like chelation, you have to keep in mind
that the history of medicine is strewn with discarded treatments that people
at one time believed in very, very strongly," said Fineberg, who appeared on
"Meet the Press"with Kirby. "When you have one case after another, it's one
anecdote after another, and the plural of anecdote in scientific terms is
not evidence."
"Most children see improvement from the very first visit,"Freedenfeld
said. "I'm not going to stop until their children are fully recovered,
that's my promise to parents."
He estimated that about 20 percent of his patients see a full recovery
and as many as 60 percent see marked improvement.
"From data collected from thousands of parents, chelation, special
diets and supplementation (vitamin and mineral) are the most effective
biomedical therapies," said Matt Kabler, a spokesman for the ARI.
"Unfortunately, the mainstream medical community does not believe that
autism is treatable and therefore most of these alternative interventions
that are working are not covered by most insurance companies."
In the case of the Rose girls, insurance has covered only a small
portion of their costs.
"We've gone to some personal expense," said Jonathan Rose, but the
couple believes it's worth it.
Freedenfeld said insurance won't cover vitamins and different foods,
though it will cover his office visits.
"But what's worse, they'll pay to put the toxins into the children,"
he said.