Posted with permission.
Just a touch of grey…
The tragic incident of the child from Pittsburgh who died during a
chelation treatment has had an effect that has reverberated
throughout the autism community. It has created an even greater rift
than existed before between those who believe in biomedical
treatments, and those who don't. Those somewhere in the middle, such
as myself, are more torn than ever about the issue of biomedical
treatments for autism.
Somewhere on the side of the biomeds are vociferous parents and
advocates who adamantly believe that their children are mercury
damaged and that chelation is a treatment that can sometimes have
profound and lasting effects on their children. Some even say that
they have "recovered" their children from using these treatments.
Somewhere on the other side are the more conservative parents and
advocates who believe that these treatments don't work, they are not
proven, and are sometimes even dangerous.
Personally, I am somewhere in the middle. Would I use IV chelation
with my own two children with autism spectrum disorder? No. Call me
"chicken" and I'll plead guilty. Some have said I'm "dancing on the
blade of a sword." Guilty again. Do I think it works? Well, the
theory really makes sense. I have been asked by members of the media,
and have answered that I feel it is too dangerous for my personal
taste. Does that mean that it should be stopped and that parents
should have no right to seek chelation therapy, if they so choose?
No. AutismLink advocates for parents to have the ability to make
their own informed choices.
Chelation has been used since the 1940's as a treatment for lead
poisoning. Does it work on mercury poisoning? Who knows? Do children
with autism even have mercury poisoning? Some experts say no, some
experts say yes. Some parents say no, some parents say yes. But
parents should have THE CHOICE TO DECIDE FOR THEMSELVES. Nobody
thought that the parents in the story of Lorenzo's oil were in their
right minds, either, until they made a significant discovery.
As I stated in a recent article in the Pittsburgh Post-Gazette, the
medical community needs to step up to the plate and help parents who
choose alternative therapies in lieu of turning their backs on them,
calling them "crazy". Not all alternative medicine is quackery, nor
is it good. Not many things in this world are as simple as black and
white. There are millions of shades of grey in between.
As for the use of the word "desperate," I stand by that
characterization. We are all desperate. We're desperate to find
something to help our children, otherwise we wouldn't even be
considering procedures like IV chelation. I know I am. If I saw solid
scientific evidence that chelation would help my children come out of
the fog of autism, would I do it? You bet. If I saw evidence that
bowing three times to the sun at noon would help my kids, I'd do that
too.
So who is right? We really don't know, because we need more
research. But I do know one thing — this issue is dividing an
already divided community of parents and advocates who have more in
common than not. This issue needs to be discussed, but what we don't
need is people who start publishing things accusing others of
"exploiting" the situation. Just because someone is asked for their
opinion on a situation doesn't mean that they are "exploiting" the
situation. If anyone is exploiting the story, it's the press. The
telvision media, newspapers, magazines, and the like.
Maybe something good will come of this tragedy — maybe we'll find
some truth in the matter of mercury poisoning. Maybe someone will
finally say.. "Hey, this needs to be researched."
Immediately following the news story of young Tariq, folks from both
sides were pointing fingers at one another. "This was bound to
happen," say some. Those on the biomedical side of the issue
immediately raised their backs, expecting the "we-told-you-so"
attack. And, rightly so, because they're getting it now. Ironically,
those attacks are coming, once again, from the medical community that
turned their backs on this in the first place.
In conclusion, I'm just asking that the autism community keep their
emotions in check during this difficult time. We will get through
this — together. We need to discuss it, express our opinions, cry
about it, but we need to remember that the issue is not black or
white. A friend of mine said something so true, "if one person were
right about every autism treatment, we'd have the cure." At least I
know that one person sees a touch of grey, and I'm hoping that you
will too.
Warm regards,
Cindy Waeltermann
AutismLink Director
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