Article advocating dangerous treatment on autistic child

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The following is an email I wrote to the editor of the Chicago Tribune:

Chicago Tribune,
I'd like to alert you to an incredibly problematic blog post published to the Chicago Tribune website: http://featuresblogs.chicagotribune.com ... =108373442

Alternative medicine has its place but advocating practices like chelation therapy is incredibly damaging to the rights of children with disabilities. Parents who resort to unscientific and unapproved medical treatments with the intent to 'cure' their autistic children are not only wasting money. These parents are also putting their children's lives at risk.

One woman's first hand account tarnished with a personal bias resulting from not accepting her child for who she is has no scientific basis. Furthermore, the fact that she endangered her child's life by subjecting her to an unproven medical treatment makes this mother's credibility dubious at most.

Masquerading this kind of story as journalism is an incredibly unethical practice because it contributes to an environment in which parents are desperate enough and uninformed enough to subject their children to expensive 'treatments' which do not work, are frowned upon by the medical community, and can result in death.

I run a site for individuals with Autism ( http://wrongplanet.net ) with more than 17,000 members. I was diagnosed with Autism at age 9. This type of blog post hurts autistic people and our families.

Perhaps your news organization could run a story about the resources that exist for the millions of autistic individuals living in society. You could reference online communities such as http://WrongPlanet.net where autistic people find support among people going through similar struggles and experiences. The voices of people with autism seem to be drowned out by an overwhelming perspective of parents who refuse to accept their children for who they are. The life of an autistic person is just as valuable as any other life and has just as much a right to be represented by the media.

Alex Plank
Founder of WrongPlanet.net


Websites of interest:
http://www.wrongplanet.net/
http://www.autism-watch.org/about/bio2.shtml
http://www.msnbc.msn.com/id/9074208/ (Boy with autism dies after chelation therapy)
http://www.autisticadvocacy.org/ (nonprofit organization supporting the rights of people with Autism)
--

Good email, alex.

Chelation is FDA approved; however, it's not approved in the manner it is used on autistic children. Chelation is meant for acute heavy metal poisoning, not for ongoing and continual treatment. Therefore, the point of whether it works as a treatment or not is moot. The risks far outweigh whatever benefits there may be, if there are any at all.

It's also infuriating that the FDA does not step in and outlaw this form of use. Instead, it's up to the practicing physician as to how the treatment should be applied.

Alex:
Why don't you contact Anna54. She's upset about some very similar things. Seems that she might be a good one to join a fight like this.

Beentheredonethat

Sophist,
that's right but it's dangerous and is only used as a last resort life saving measure in cases of serious heavy metal poisoning.


Here's an email I sent to the tribune to clarify a few things:

Yes, this particular use of chelation sounds like snake oil! Chelation is a risky procedure that should be reserved for those who specifically need it: those who have been poisoned by heavy metals. But the girl still has problems with socal skills and nonverbal communication, so her autism isn't really cured, whatever that means.

Alex:
I cc'd you on an e-mail I sent to that woman. Hope you don't mind.
Ignorance runs rampant on the Internet.
What can I say?
btdt

I'm of the view that parents like these should have their children taken away from them. Excellent email, Alex!

If any of you guys want to send the Chicago Tribune a message, here is a list of all their email addresses:
http://www.chicagotribune.com/services/ ... .htmlstory

I sent my letter to all the editorial staff and all the science/health/medical reporters.

Pfft. Get a load of this knob:

I personally think the combativeness in all the conversation attached to that thread is counter-productive. I wrote some responses that haven't been posted yet. They aren't in complete support of either position, but I do want parents to understand where I think you all come from.

In response to that thread: using case studies is good and well. It's a respected form of qualitative research. HOWEVER, it doesn't hold the same weight as quantitative research. No one should use a single case study, or even a handful, as the only supporting evidence.

I haven't read the original article, however, it sounded like this wasn't even a case study but anecdotal evidence (i.e., apples and oranges). Anecdotal evidence, while undoubtedly valuable in qualitative research, is not as highly regarded as quantitative research because with it comes the inherent flaws of human judgment and having one's own agenda and biases.

Ideally, a case study should be performed by an outside experimenter unrelated to the subject. They should collect information on a variety of areas regarding the person's life (that varies according to the purpose of the case study).

Also, performing a quantitative study on chelation is certainly possible, although probably still unethical (though not for the reasons that person espouses), considering there is not enough strong evidence (evidence showing consistently and considerably higher heavy metal levels in the serum) to support taking the risk going through chelation for several years. Say goodbye to the experimental group's livers!

The scientific reason that chelation should not be supported is because, since it hasn't been studied in large numbers in relation to autism, THERE IS NO WAY TO PREDICT THE RISKS. And science sticks as strongly to the motto "Do no harm" just as much as doctors do (well, ideally ). It doesn't matter if chelation is the next miracle drug that gives long life and increases fertility! It hasn't been tested, the evidence supports that there's too much of a risk to do any sort of longitudinal study, and that's that. QED.

And any person who supports it not only is being a bad layman scientist, but is also putting their child's life at risk. The unknown is always a risk, it doesn't matter how many anecdotes you've heard to the contrary. As Stalin put it, "A single death is a tragedy, a million deaths is a statistic" -- meaning that despite that we humans should know better, we constantly trust a single anecdote over mounds of numerical evidence to the contrary. Why? Because usually the single anecdote is more emotionally moving than a group of numbers. Which is why, as humans, we need to be aware of this tendency of ours and distrust our own trust in the Anecdote.

Do people want to gamble with their children's lives? Because this treatment has the potential for real harm-- and I'm not talking about the kids who were overdosed or given the wrong treatment. I'm talking about performing chelation over an extended period of time, taxing the liver, and using the treatment in a way in which is was NOT DESIGNED.

It's the liver that gets to process all the heavy metals that the treatment flushes from the body. And you run the risk of cirrhosis, cancer, etc., just the same as you do with alcohol and other medications that are hard on the liver.

We're not talking a one or two-time dose. Like the person in that post mentioned, we're talking potentially YEARS.

So what'll they have? They'll still have autistic kids, only later down the line, they'll also get the joy of having their children put on transplant lists.

Sorry for posting all this here. Preaching to the choir, I know. But my IP for some reason is blocked on Wiki...

Thanks Sophist, that was very well thought out. No need to be sorry. Hopefully someone who believes that tripe will read this and it will blow their minds

I was having a look through Autism-Watch, and was surprised that Autism Speaks didn't make the list of "Nonrecommended information sources". Maybe we should suggest that they add it. They're responsible for this kind of misinformation, surely.

I totally agree that the article and all supporting documentation related to using chelation for treating Autism is based purely on emotional evidence. The word of a minority has captured the attention of the majority, even though the majority of the information debunks said theories. Sadly such important information is rarely heard over the noise of the stories and the stampede of desperate parents.

My first two responses to the blog are up. Sophist, I don't have your scientific certainty or I would consider posting for you. Anyway, if anyone is interested, I signed Debbie W.

And I've now written a third, lol, because I couldn't stand the negative comments about the posts I suspect are coming from members here. They don't have to agree with you all, but they need to understand who they are arguing with: autistics.

I thought those were really great responses, Debbie W. I agree Autism isn't that bad.

I don't want to sound like a curebie, but I really don't see the problem with giving chelation to autistics. It's relatively safe and a randomized, double-blind, controlled study found it safe and effective for treating kids diagnosed with autism. It is considered safer than Risperadol, the only FDA-approved drug for autism (which doesn't really treat anything - it reduces aggression in frustrated autistics by zapping their energy so parents don't have to deal with them). A sensationalist story reported that one autistic kid died during chelation but the story was incorrect. The kid died because the doctor made a mistake and gave him the wrong drug. If you got a prescription for Prozac and were given arsenic instead and got sick, would you conclude that Prozac is dangerous? I have never seen any evidence that chelation is dangerous. There are a few serious side effects, like many prescription drugs, but they are rare and I don't think they occur any more often than many prescription drugs. All the major conventional health sites I've looked at state that chelation is safe so I see little harm in trying it to see if it works.

Randomized, double-blind, controlled study finds chelation with oral DMSA is safe and effective for treating autism:
http://www.autism.com/danwebcast/presen ... /adams.pdf

Note: I'm NOT saying that mercury is the cause of autism even though several studies, including one by the CDC, found that children exposed to thimerosal and ethyl mercury are more likely to be diagnosed with autism. I'm only saying that oral DMSA chelation is probably effective at reducing autistic symptoms, based on the science I've read. DMSA is a powerful anti-oxidant and studies found oxidative stress in autistics so that is one non-mercury explanation of why chelation may work. When one twin is classically autistic, studies have found that the other twin is only classically autistic 36-50% of the time so there are clearly non-genetic factors at work in some people. However, I'm not discounting that genetics may be the sole cause of being autistic for some people so this really shouldn't offend anyone.