"We don't trust the FDA or the CDC. We don't trust you. We don't trust most doctors. We only trust each other," he said. -- JB Handley in Trine Tsouderos's article on Boyd HaleyGod help the kids of these parents then. I've read the yahoo groups that think autism is mercury poisoning. They may love their children completely, but their desperation often gets in the way of rational decisions. They use their children as guinea pigs and are morally outraged that anyone would question their use of mining chelators, nicotine patches, oxytocin spray, HBOT, and the rest of the list we all know now too well.
Love and devotion are absolutely no guarantee that parents will make smart decisions when it comes to their children's care, especially if there are quacks out there promising to heal and recover their children. Doctors far too often don't have neat, tidy answers that will resolve the very real and serious issues many of our children on the spectrum face. And just as often, they don't handle communicating with parents very well. DAN! doctors and quacks, on the other hand, have a string of ready to try supplements and therapies, often for sale in their office or on their website, with a string of scientific jargon, acronyms, and complicated cellular functions that their special supplements are designed to act on. If only you, the parent, are willing to spend the money, and then the time, to give the child these supplements at specific times. If your child doesn't respond, it's because you weren't devoted enough, didn't follow it precisely or for long enough, or didn't intervene soon enough.
There is no place for emotionalism and the gut in the medical decisions we make for our children. And there is absolutely no room for thinking we have all the answers or that any doctor out there does. What we have are reason and logic to guide us in making the best possible decisions we can for our children based on real information, not the magical claims by con artists.
There should be no room for conspiracy theories, either, and the belief that the pharmaceutical companies are out to get people, while never considering that the nutraceutical companies and small start ups offering powerful antioxidants that haven't been investigated or approved by the FDA are every bit as much out to make a buck, but with far less oversight.
Yes, pharmaceutical companies screw up, and they even cover up or attempt to, but the reality is that the weight of evidence accumulates and it comes out that Phen-Fen, Vioxx, and Avandia have real problems. Because the scientific method and dedicated scientists accumulate the data.
Parents are looking for a sure thing, and while it's understandable to want certainty and the hope that is offered when someone out there on the internet promises recovery, it's no excuse for running with one's gut instead of asking the hard questions.
Rational people would look at Haley's claims and ask: how does he know? What proof has he offered? Oh, he's a nice man and he wants to help. Well, maybe he is a nice man. Maybe he does want to help. But the reality is he's offering a pricy product that has not undergone rigorous safety testing, does not have any demonstrated efficacy at reducing autistic symptoms, and has no logical mechanism for suggesting it would.
To sprinkle it on your children's breakfast cereal for years just because you've met him and he's nice? That's complete gut. And flat out risky.
We have an obligation to our children to do the best we can for THEM. To me, that means asking hard questions, being willing to accept uncertainty, and to make the most informed decisions we can about their care and the treatment and therapies they receive. It means that we shunt our fear, our emotions, and our wants aside and make decisions based on the facts at hand. We don't subject them to untested treatments by startup companies and we admit when it comes out that we've been using a MINING CHELATOR on our children that we may have made a mistake and we STOP using it. We don't post that, damn, all these news articles and the FDA investigating proves it must be great shit and we'd better buy it up before it's gone. After all, the FDA wouldn't be trying to shut Haley down if it wasn't working! There's a reason I've written that AoA is bizarro world, and I'll admit I find it fascinating to know that the powers that be over there are aware of that so that they turned the phrase around on Countering (not that they mentioned this site by name).
Tested, proven safe, proven effective. Those are the treatments we have a moral obligation to provide for our children. We abuse our role as our children's guardians and protectors when we somehow believe that vaccines haven't undergone enough testing and aren't safe, and yet somehow think that all the supplements, powders, pills, and creams that have undergone no testing and are not regulated are the absolute right thing to do for our children.
People who rally to Haley's support have lost their way. Handley showed us today in Tsouderos's column just how lost they are.
Addendum: Other articles on OSR#1
OSR: Fuel For Thought · 2010-07-07 16:00
OSR: A Bevy Of Adverse Events · 2010-07-12 07:15
OSR: The Littlest Consumers · 2010-07-14 07:15
From the beginning:
Haley’s Chelator: For Cats Or For Kids? (April 26, 2008)
A Fine White Powder (August 1, 2008)
The Industrial Treatment (August 8, 2008)
An Inquiry Emerges (August 14, 2008)
FDA To Haley: OSR#1 A Misbranded, Mislabeled, Unsafe Drug (June 24, 2010)