Don’t Say “Chelation”
May 11, 2006 by Do'C 
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The Greater Phoenix Chapter of the Autism Society of America has apparently put out a pretty slick-looking new website (maybe it’s been around for a while, I’m not really sure). The conference section contains a conference scheduled for this coming June at an ASU campus, but the announcement has apparently been revised - readers may recall that I had previously written to ASU president Michael Crow asking that he consider ASU’s involvement (by use of facilities) with such a conference (enabling promotion of chelation therapy as an autism treatment).
Of course promoting the use of chelation therapy as an autism treatment, even on a research basis, essentially begs the same tired old questions:
1. Is there any scientific proof that mercury causes autism?
2. Is there any scientific proof that autistics have higher levels of mercury?
3. Are there any scientific standards and methodology with supporting normative studies that even define when a person with autism actually suffers from body-burden mercury toxicity?
If you’re going to comment on this aspect, cite peer-reviewed research available on Pubmed only please - I’m not interested in unproven theories, or articles from JAPandS, etc.
Here’s the interesting thing about this apparently revised announcement:
-In the revised announcement, Walter Crinnion, ND is now referred to as “Detoxification Expert” when he had previously been referred to as “Chelation Experts”.
-References to the Southwest College of Naturopathic Medicine’s chelation study and chelation are referred to as “DMSA treatment study”, “DMSA therapy”, and “treatment study to remove toxic metals from children with autism”.
Not one use of the word “chelation”.
I guess that could satisfy ASU’s president, Michael Crow.
Dear Dr. Crow, It’s still chelation.
Dr. Crow had responded promptly to my first inquiry
“Thank you for your e-mail regarding the upcoming conference to be hosted next month by the Greater Phoenix Chapter of the Autism Society at the West campus of ASU. As a public institution of higher learning, ASU believes in the open and free exchange of information and ideas. Ultimately, it is up to parents to determine if they should attend the conference and how they feel about the information being presented. Any concerns relative to the content of the conference should be communicated to the Greater Phoenix Chapter of the Autism Society of America”
I don’t have a problem with “open and free exchange of information and ideas”, and stated as much in my first letter.
Dear Dr. Crow, Does this mean you think that potential misinformation should be allowed the same free-range existence at ASU?
I also agree that it IS ultimately up to the parents to determine if they should attend. How they “feel” about information presented has no relevance on whether or not the information is actually misinformation. What matters is, do they understand the scientific validity of the so-called ‘information’ being presented?
Dear Dr. Crow, Do you think that most families (and especially those that may be ”new to a diagnosis”) have the relevant training or research background to understand the information? Or, are they more likely to take what’s presented at face value (with the ASU name being indirectly attached to that face value)? While I don’t disagree that it is ultimately the parents’ responsibility to make an informed decision about raising or caring for their children’s health, do you think potential misinformation or omissions assist those parents in making such informed decisions?
Any concerns about content should be communicated to the GPC ASA?
Dear Dr. Crow, If one were concerned about the content of a sales pitch, do you think the best objective resource to evaluate such concern would be the person or group making the sales pitch?
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Comment by Not Mercury — 11 May, 2006 @ 4:47 pm
You don’t suppose that whole Hypocalcemia / Cardiac arrest thing has given chelation a bad name, do you?
Comment by Dad Of Cameron — 11 May, 2006 @ 6:04 pm
Hi NM,
Yeah, that certainly can’t help, but I also think the glaring absence of any real scientific evidence of kids with autism ‘cured’ by chelation doesn’t help either. Granted, not all parents look for scientific evidence before jumping on a treatment bandwagon of likely false hope, but the longer this goes on without real scientific proof (which certainly would have made mainstream media headlines), the more the proponents may have to try to present it as something else to engage new “believers”. So it seems kind of a two-pronged problem: guilt by association with “dangerous” and still pseudo-science as an autism treatment.
Comment by Lisa — 11 May, 2006 @ 6:12 pm
Yeah, I got the same form letter from Dr. Crow. So kind of him to give our concerns his serious consideration.
Comment by Joseph — 11 May, 2006 @ 6:49 pm
To get an idea of how effective chelation therapy is, visit GenerationRescue’s Testimonials. They have several kids in each age group, no more. If chelation were effective, testimonials would flood that site, and the treatment would become very popular through word of mouth. Also, if you read some of the testimonials, you’ll see that almost none are about trully “recovered” kids. Parents just believe they see improvements that they claim could not have happened without chelation. It’s not at all clear why they claim this.
Comment by Dad Of Cameron — 11 May, 2006 @ 7:26 pm
Hi Lisa.
Hi Joseph,
You know, it’s definitely not clear why such claims are made, but a few hypotheses come to mind:
A. Such claimants are so far imbedded into the process and cure culture, despite the absence of supporting science, that held beliefs, faith, and hope (however false) are so strong, that they truly “believe” it.
B. Such claimants are so far imbedded into the process and cure culture that to acknowledge a dead end is not an option.
C. Such claimants have no understanding of Post Hoc fallacy or don’t understand that autism is characterized by developmental delay, but does not mean developmental stasis (credit “not developmental stasis” to Prometheus).
D. Such claimants are on to something, and will produce scientific proof despite the prevalence of an overwhelming lack of evidence and the likelihood that it is quite improbable.
I’d like to see a study on the psychological etiology of these claims and beliefs.
Comment by Joseph — 11 May, 2006 @ 7:36 pm
It’s a sort of placebo effect on expectations.
The studies on Secretin are very telling. As I recall, in one of them close to 70% of parents remained interested in Secretin, even though the study clearly showed that Secretin was, at best, as effective as placebo.
Comment by María Luján — 12 May, 2006 @ 6:01 am
Hi Dad of Cameron
I have some points to discuss about your questions. Are you interested on?
It will include some personal experience therefore I ask.
María Luján
Comment by TheProbe — 12 May, 2006 @ 6:15 am
The correct answer to DoC’s multiple choice analysis is A B and C. I had run a support group for parents of kids with AD/HD when my now 23 year old was 5-9. Just about everytime we had a newbie come in, they were in ‘cure mode’ and were not interested in ‘quick fixes’ (medication) or any of the other therapies that many of the members had thought were beneficial (special education certification (You are not going to LABEL my child), individual counseling and family counseling. They wanted advice on diets, supplements, etc. and would not consider the fact that there is no cure, and that the best one can do is to deal with the symptoms.
The group addressed their concerns, and often they would begin to see that they were headed in the wrong direction. However, there were those who would not even consider that their child had a life long problem and that they had to prepare the child for that. Unfortunately, these people would either not return after a few meetings, or cause major confrontations within the group. One “pro-thimerosal causes autism and chelation is the answer” blogger reminds me of these people.
I have met a few of them years later. Some came to realize that they were on the wrong path and their kids turned out alright. One, though, told me that her son became a major drug user and OD’d. Another one visits her son upstate on visiting day at a maximum security facility.
Comment by Dad Of Cameron — 12 May, 2006 @ 7:29 am
Hi Probe, thanks for stopping by.
Maria, you can certainly e-mail me at comments at autismstreet dot org. I have seen most of the papers you cite which seem to suggest interestesting directions for future research but don’t necessarily constitute anything near conclusive proof at this point. I’d be happy to chat with you by e-mail. Please understand that I have a hectic schedule and am not primarily interested in speculation, maybes, or seems tos, but willing to discuss them as time permits.
Comment by Robert P — 14 May, 2006 @ 4:00 am
I saw a recent presentation on sibs of autistic children, I blogged on it here briefly, but I am going to say the same things in this post. They have been studying these kids since age 4 mos. At age 12 and age 24 months, a subset of these kids (13) moved into the “presumed” ASD category. The researchers tried to have the parents enroll them in OT, PT, ST, but NONE of them did. It was a Jewish study and during the intifada (sp?), so perhaps that is why, or perhaps they already felt comfortable having had one child. Point is, of the 13 only one went on to have full autism diagnosis, AND, the other twelve caught up to their NT peers. So, by age 4.5 they were “normal” in language, which was the measure where they had slower development.
I bring this up because if these children hadn’t been in a study, but had gone into TEACCH, ABA, RID, chelation, GFCF, or prayer - the parents would have been left with the conviction that they got better because of the treatment.
Obviously, autism is different than developmental delay, but these kids were significantly language delayed, they weren’t just a little behind. I think at 15 months they were around 9 months, but I could be a little wrong on that. In order for these treatments to be properly tested, a control group of ASD and a control group of NTs need to be included. Otherwise, smoke and mirrors.