The unorthodox practice of chelation
No one knows what causes autism, but one theory has ignited an intense debate
By John Larson
Correspondent
NBC News
Updated: 4:41 p.m. PT June 4, 2006
Autism is a mysterious and devastating disorder that is believed to affect as many as 500,000 children in this country. No one knows for certain what causes autism, but one theory — chelation— has sparked controversy. Now, Jim Adams wants to put that theory to the test. In a desperate quest for answers, he is using his scientific know-how to test a controversial therapy called "chelation." And he has a special reason for taking on this mission — his daughter Kim. This report aired Dateline Sunday, June 4, 7 p.m.
Kim Adams knows every word, every move, every pause by heart because she has watched this same video thousands of times.
Kim Adams, autistic girl: Barney’s Birthday!
Like many diagnosed with autism, she is trapped in a world of repetition and ritual.
Jim Adams and his daughter Kim
For example, her
father Jim knows
his daughter
will want two
braids because
it is Wednesday.
Kim insists on
wearing two
braids and a
dress to school
every Wednesday.
Her need for
order is
extreme. Even a
minute change in
routine, like a
spot appearing
on her father's
shirt, can make
her world feel
frighteningly
out of whack.
Kim Adams:
Daddy’s
shirt…
Jim Adams,
Kim's
father:
Oh, daddy’s
shirt is
dirty.
Kim Adams:
Mommy,
daddy’s
shirt is
dirty.
Marie Adams,
Kims mother:
That’s okay.
At 13 years of
age, Kim is
still a child
who needs help
with life's most
basic skills.
She can't brush
her teeth
without a list
of directions,
or make her bed
without a series
of pictures.
Jim Adams:
My little
girl was
diagnosed
with autism
at age
two-and-a-half.
We were told
it was a
lifelong,
incurable
disorder.
There was
nothing we
could do for
her, that it
was just a
matter of
time until
we’d
probably
have to
institutionalize
her. It was
absolutely
crushing.
Jim and his
wife, Marie
immediately
ruled out
institutionalizing
Kim. And
although already
raising two
other children,
they began doing
everything they
could for Kim —
special diets,
special
teachers,
special classes.
While she
appeared normal,
Kim couldn't
speak, couldn't
follow simple
instructions,
and made little
eye contact.
Marie Adams:
Then as she
got older,
you know her
anger, her
tantrums,
her
aggression —
she used to
hit, kick,
bite. When
she was
older, she
knocked
holes in the
walls.
A professor of
chemistry at
Arizona State
University by
day, Jim Adams
studied autism
at night,
learning about
brain
development and
damage, how the
brain interacts
with vitamins,
minerals and
metals.
He sought out
others concerned
with the rising
number of
children being
labeled autistic
— parents and
scientists who
also wondered
how a condition
that was
diagnosed in
only one in
10,000 children
in the 1980s was
two decades
later diagnosed
in as many as
one in every 175
American
children.
He started
hearing stories
about damage
done to people
exposed to
methyl mercury,
the kind found
in thermometers
and in polluted
environments.
There was
the
mercury spill in
Japan that led
to mercury laden
fish and
Minimata
disease,
affecting many
who ate the
fish.
He heard about
Pink Disease,
also called
Acrodynia, a
mysterious
condition that
afflicted
children in this
country roughly
a hundred years
ago. The
symptoms
included social
withdrawal and
lack of
language. The
condition
disappeared
almost overnight
when a certain
type of teething
powder which
contained
mercury was
removed from the
market.
Jim Adams:
There is no
doubt that
the mercury
in the
teething
powders was
what caused
Acrodynia,
and that
symptoms of
Acrodynia
were pretty
similar to
symptoms of
autism.
John Larson,
Dateline
correspondent:
What’s your
basic idea
here? That
mercury
causes
autism or
that somehow
makes it
worse?
Jim Adams:
We think
that it’s a
combination
of a genetic
susceptibility
leading to a
decreased
ability to
excrete
mercury. So
that these
kids are not
necessarily
dosed to
high levels
of mercury,
but that
simply, they
are a small
subset of
the
population
that they
have unusual
genes, that
they just
can’t
excrete
mercury very
well.
Larson:
Jim’s
suspicion
that mercury
might
somehow be
connected to
the rise in
the number
of children
diagnosed
with autism
places him
near the
center of
one of the
most hotly
contested
and
politically
charged
medical
debates of
our time —
one that has
pitted
activist
parents
against
federal
health
officials
and vaccine
manufacturers,
because
mercury in
children
often comes
from
vaccines.
Vaccines— those
life-saving
miracle drugs
that have
successfully
fought back
everything from
polio, small
pox, and
diptheria, to
measles, mumps
and rubella. It
began to be
phased out a few
years ago, but
until then, most
infant vaccines
included
something called
ethyl mercury in
a preservative
called
thimerasol.
Although
different from
methyl mercury,
the kind found
in pollution,
ethyl mercury in
high enough
doses, can also
damage the
nervous system.
Jim Adams:
Thimerasol
was
introduced
into
vaccines
before the
FDA even
existed. It
was just
grandfathered
in. And then
as children
begain
receiving
more
vaccines in
the
vaccination
schedule,
the amount
they
received
kept growing
and growing
until 1999
when
Congress
asked the
FDA to
evaluate the
amount of
mercury in
all the
pharmaceutical
products.
What the Food
and Drug
Administration
discovered was
that along with
getting more
shots, by 1992,
children were
also getting
more mercury.
The vaccines
undoubtedly were
protecting the
children from a
variety of
deadly diseases,
but were they
also causing
autism in some
children?
In order to
answer that
question, the
Centers for
Disease Control
and Prevention
commissioned two
reports into the
issue, both of
which dismissed
thimerasol as
the problem.
Dr. Tanya
Popovic is the
CDC's Associate
Director for
Science
Research.
Tanya
Popovik, CDC
Associate
Director for
Science
Research:
Top-notch
scientists
have
reviewed
everything
and anything
that is
available
and have
really in
their latest
report said
that they
reject
causal
association
of
thimerasol
in vaccines
and autism.
The American
Academy of
Pediatrics and
many other
scientists also
reject the link
between vaccines
and autism and
are concerned
the debate over
mercury will
discourage
parents from
vaccinating
their children.
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But despite the
stance of
mainstream
science,
thousands of
parents, and
even some
scientists,
claim there is a
growing body of
evidence to
suggest there
might be a
connection
between mercury
and autism.
And they point
to the benefits
of a radical new
treatment to
help make their
case.
Julia Berle,
mother of
autistic
child:
It saved my
child.
This mother and
thousands of
other parents
have turned to a
process called
chelation.
Chelation
involves ridding
the body of
metals,
including
mercury. In its
most aggressive
form, it is done
intravenously,
but most parents
give their
autistic
children a
milder oral
medication, or
as in this case,
a cream that is
absorbed through
the skin. The
chelation agent
binds to the
mercury, which
is then passed
through the
system.
Originally
approved for
treating lead
poisoning, there
are parents who
claim chelation
has helped cure
their children's
autism.
The parents
share stories
and home videos
of what they
describe as
their children's
recoveries.
Some report
their children
going from
agitated
repetitive
behaviors to
simply being
calmer and able
to focus. From
being unable to
use language, to
being able to
express
themselves— from
almost complete
withdrawal, to
interacting with
their families
again. But most
doctors aren't
buying those
stories of
near-miraculous
recovery.
Dr. Jay
Berkelhamer,
presidnet of
American
Academy of
Pediatrics:
The
usefulness
of chelation
therapy in
treating
autism is
nil.
Dr. Jay
Berkelhamer is
the President of
the American
Academy of
Pediatrics. Like
most doctors
Dateline spoke
with, he pointed
out the process
can be
dangerous.
Performed
intravenously,
it even led to
one death.
Dr.
Berkelhamer:
Chelation
therapy is
potentially
toxic. The
chelation
material
that are
used to
remove these
metals from
the
bloodstream
can affect
the liver
and the
kidney.
The reason most
doctors agree
with the
American Academy
of Pediatrics is
because they
don't believe
mercury from
vaccines is the
problem in the
first place.
They say some
autistic
children may
just outgrow the
problem, or
improve from
behavioral and
other therapies,
but that autism
isn't cured by
removing metals
from a child's
system.
