Cancellation of Controversial Autism Study Causes Both Relief and Outrage

By Eliza Strickland | September 18, 2008 8:36 am

chelationA federal health agency has dropped plans for a controversial autism study, pleasing many scientists but disappointing some families with autistic children. The study would have tested a treatment called chelation, which removes heavy metals from the body and is used to treat lead poisoning. Its use as an autism treatment is based on the fringe theory that mercury in vaccines triggers autism — a theory never proved and rejected by mainstream science. Mercury hasn’t been in childhood vaccines since 2001, except for certain flu shots [AP].

The National Institute of Mental Health had previously said that if the study proved that chelation therapy had no effect, if would have finally dismissed the “anecdotal reports” that the treatment is effective. But safety concerns based on recent animal studies apparently deterred the institute from continuing with the study. “NIMH has decided that resources are better directed at this time to testing other potential therapies for autism spectrum disorders, and is not pursuing the additional review required to begin the study,” the institute said [Reuters].

Safety concerns about chelation were raised following a study last year that showed it caused lasting brain problems in rats. Despite such findings, some autism advocates continue to believe in the treatment’s benefits. News of the cancellation of the NIMH study caused one advocate to compare the risks of chelation to the side effects of chemotherapy. Children are given huge doses of chemotherapy and radiation in a desperate effort to save them from cancer – fully knowing the side effects themselves can be deadly. It’s a fair risk most parents are willing to take to help a sick child [Age of Autism].

In contrast, medical experts reacted with relief to the cancellation of the new study, which some had called a dangerous experiment on children. “Suppose that a child suffers a severe side effect from chelation,” said [Pediatrician Paul] Offit, author of “Autism’s False Prophets,” a new book on autism research. “Without any evidence it’s helpful, I think it’s unethical” [AP].

Image: flickr/KOMUnews

CATEGORIZED UNDER: Health & Medicine
MORE ABOUT: autism, chelation
  • AnneS

    Thousands of parents are recovering their children from autism using chelation already. When is the government going to come check out those children and find out why?

  • Bill

    How about this ‘fringe’ piece of information. No diagnostic biotechnology exists to ‘diagnose’ this ‘brain disease’, and no observable disease mechanism or etiology has ever been demonstrated objectively. Psychiatry is a pseudoscience which feeds on innocent kids. The power of suggestion in telling these kids they have no free will is deleterious in the utmost. Some of you fools should study the power of suggestion in psychiatry instead of chasing rainbows. These kids don’t deserve to have their organic neurology marinated in deadly toxic psychiatric guesswork while their brains are growing. Mass tranquilization of Generation Rx will turn out to be one of the greatest crimes against humanity. And its all in the name of the fanatics at Big Pharma and the fantatics in ‘bio’psychiatry. Who are apparently so ‘bio’ they don’t have a single piece of diagnostic biotechnology.

  • isles

    Thank goodness someone at NIMH finally came to his or her senses. Legitimate chelation therapy, for real lead poisoning (not “mercury poisoning” falsely diagnosed by a mail-order lab using nonexistent reference levels) takes maybe a month. Autistic kids are subjected to it for YEARS, and their parents are just sure that any maturation and development that occurs over that time is thanks to the chelation. This alone should have been enough to bring the skepticism – the animal evidence that chelation can damage the brain was apparently enough to put it over.

    It’s more than time we started worrying less about what loudmouthed autism parents want and more about what’s safe and helpful for autistic kids.

  • Kate Moore

    I do not agree with chelation supporters, not do I agree with the epithet “loud-mouthed autism parets.” I am neither, just the parent of an exceptionally lovely young man who also happens to struggle with autism.

    Once again I would ask all of you to put yourself in the other’s shoes. Is it responsible for us, as parents of autistic children, to continue to demand studies when all that have been done do not support our claims? Can we assume positive intent on the part of the scientific community and allow them to move on to some other work that might help our children more effectively?

    Is it responsibile or kind, or really even completely human, for someone who does not deal with the daily heart break and challenge of a child with autism to judge and condemn those parents who would, literally, try anything because they are desperate to help this child that they deeply love?

    Neither position is tenable. Compassion and self-awareness are the best we can hope for. Let’s try to be decent to one another.

  • Jessica

    Bill, I sincerely hope you are not suggesting that autism is a fictional disease. I have worked as a teacher with middle school students with Asperger’s, and I assure you these kids are not just under some sort of psycho-babble spell. They are not pretending; they just think differently.

    The time I spent with these kids was some of my most cherished as an instructor. The students were friendly, introverted, socially awkward, and strange. They lived in their own little worlds and took a good deal of work to get them to communicate. These children were extremely rigid (think screaming if their food was the wrong shape), but they were not actually mentally retarded. In one afternoon session, several students sat with me and learned how to play Yahtzee!–and LOVED it. They loved the basic game play, but none could manage to use the score card properly. They could listen to a story about walking on the beach and playing in the ocean, and really seem to understand, but if you asked them what a beach or an ocean were, they had no idea or simply felt incapable to saying.

    I had Asperger’s students who could read, write, and recognize rhyming words, but just because they could read “brick” and “bank” didn’t mean they knew what these things were.

    So, truly, Bill, I hope you are not doubting the seriousness of autism, particularly as these children were low enough in the spectrum to attend public school and still had such difficulties!

  • Elizabeth

    We don’t need their study. They probably would have hurt kids with dosing protocols that would give the negative results they wanted, just like they hurt the mice. They figured it would be unethical to carry out their instructions to fix the study results. Thanks for not doing it. Those of us who are chelating the right way will see recovery. I trust some very smart unbiased people: Andy Cutler, Boyd Haley, Russell Blaylock, and the Geiers who believe the main cause of autism is mercury poisoning. I believe this too.

  • http://www.CheerzHangover.com Patrick

    My company recently developed a formula currently branded as a hangover prevention supplement that has recently received feedback from parents of autistic kids reporting encouraging anecdotal results (see below). The coloring on the Cheerz tablets needs to be soaked off prior to ingestion. As a small company we currently lack the funding to develop a product specifically for autism chelation, but we are working on it.

    Considering this is the fastest-growing developmental disability, currently affecting 1.5 million children, one would think this would be a priority for Big Pharma. But they will never test natural supplement alternatives because there is no money to be made (they cannot be patented), so combinations of unproven drugs with human testing will continue to delay the relief these families desperately need.

    — Feedback —

    “I don’t know if you knew this, but there are some autistic children who are taking Cheerz as a “chelating” agent and are having good success. Cheerz is helping them to excrete heavy metals, and may very well be working on chemical exposure as well. Autistic children are like sponges, they absorb chemicals from the environment, heavy metals (from vaccines and the environment) and there are also ingredients in their vaccines such as formaldehyde that can cause damage as well. These children cannot excrete these things naturally as their immune system is dysfunctional. Cheerz is helping with this process and improving autistic symptoms including cognitive delay, lack or delayed speech, visual and/or auditory processing problems, among others. Parents are reporting improvements in cognition and overall improvements.” – T.D.

    “Our homeopathic doctor (Dr. Pierre Fontaine, RSHom, CCH) recommended Cheerz tablets to help my son who has a diagnosis of autism spectrum disorder.” – L.D.

    “I am the mother of an autistic child and independent researcher for the autism community that discovered the problem with acetaldehyde in autistic children and promoted your product with great success. I would like to talk to you over the phone regarding how Cheerz can help our community. This includes about 1.5 million children and we network by holding national and international conferences about autism and biomedical treatments which include supplements. I am involved with many of these organizations, including the recent autism USAAA conference in Denver.” – A.L.

  • Deb in IL

    Parents will continue to find doctors who will treat their children with autism using the correct thought process. Autism is a neurological outcome due to a combination of environmental, diet and vaccine toxicity in the gut, body and brain. The tests are done to show what assaults are causing the outcome. The doctors and parents work as a team to stop the damage and clear/clean the body of the child.

    Why would the parents lie about the recovered children? If chelation is working at pulling the mercury, lead and other heavy metals out of the body, then it deserves an independent study.

  • http://thehungryreader.com Krepta

    It’s absolutely stunning to see the kind of responses on these websites. Here we have a simple report on a cancelled study, half of it quotations, and immediately the readers begin firing absolutely whimsical replies that would look well at home in the letters page of a poorly mimeographed magazine.

    “Autism is a hoax created by psychatrists!”
    “Big Pharmaceuticals is going to manipulate the data to get the most profitable answer!”
    “Bush orchestrated 9/11!”
    “Obama will take your gun away!”

    The astonishing part here is that these people are NOT STUPID. They wouldn’t be reading scientific report articles if they were!

    I wish there was a word for ‘stupid’ that did not imply lack of knowledge, but instead that one functions poorly due to a crippling devotion to misinformation.

  • Karamazov

    I wish there was a word for people like Krepta. Oh yeah, there is: stupid. Go back to Fox News. Independent journalist Ollie North has a story to tell you. Go to CNN.com, they have a featured video about Jesus appearing in a ceiling.

  • http://totalhealthvision.com Paul E. Peirsel MD

    The NIMH cancellation of a study involving the intermittant use of DMSA for autism for safety concerns should be compared to the recent recommendation by the American Academy of Pediatrics to use statins in eight year olds. The risk benefit comparison of using a drug that has been approved for use in children for years to remove lead, to treat autism, a debilitating disorder that often prevents independence vs the decades long proposal to use a drug group known to cause muscle problems, in chidren developing muscles,to prevent distant heart attack, is disturbing. Obese, hypertensive, hyperlipidemic chilren need the many other options available with lifestyle changes number one.

  • RBerka

    The title of the study I see says:

    “Succimer Chelation Improves Learning, Attention, and Arousal Regulation in Lead-Exposed Rats but Produces Lasting Cognitive Impairment in the Absence of Lead Exposure”

    …basically “chelation works for lead”. Isn’t this news in itself? It seems like this is getting overshadowing in all the autism debate. I’m sure we all breathed lead from gas fumes up until the early 80’s, along with other exposures of lead in the environment. Are autistic kids showing levels of mercury in their body? Are they using any mercury chelators in the studies and/or is there any talk of testing with them?

    Reagan was considering putting lead back into gasoline in the 80’s. Read Dr. Needleman’s riveting account about his ordeal trying to report dangerous lead levels kids were exposed to (late 70’s).

  • Bob
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