I’ve said a few times on here and a few times on other blogs that it is dangerous and irresponsible to maintain an absolutist position on just about anything to do with autism. I can’t remember who said it but whenever I see someone claiming to know for sure what causes autism or what the best course of treatment for autism is I recall a quote that goes something like this:
Follow the man seeking answers, flee from the man who says he knows them all.
However, on occasions I have been known to break this self-imposed belief. This is such an occasion.
Skeptico is a blogger that has commented a few times on various aspects of the thiomersal/mmr/autism ‘connection – notably a thorough debunking of the RFK Salon.com piece earlier this year.
Skeptico mailed me today to draw my attention to a comment made on his site to the effect that the wearing of a tinfoil hat designed to prevent alien abduction can successfully treat autism.
As of Dec. 2005 a hat with velostat worn by autistic children has improved their performance markedly. Michael Menkin is seeking more autistic children in the Seattle, Washington area to try the hat. Some of the autistic children who improved after wearing the hat with velostat for over three months are not related to UFOs or any alien phenomenon.
The researhc of Michael Menkin into alien abductions, with interview of several people with encounter experiences, was featured on KINGTV Evening News Program on November 16, 2005.
This is the sort of shit that one has to wade through to find decent research about autism. Is it on a par with the whole thiomersal/mercury thing? Well yes and no.
No because I can at least see a theoretical connection even if I don’t believe that theory and yes because its another example of a theory driven by anecdotal, unverified, untested belief.
Up until Skeptico mailed me this story, my favourite other crackpot theory was the idea that plastic cups cause autism. Again, this is the sort of mindless crap that detracts from valid science, strips autistic people of the dignity they deserve and only extends ignorance.
Notable in the plastic cup story is the role of one Dr. Stephanie Cave, one of the darlings of the thiomersal/autism connection and listed on page one of the Generation Rescue Hall of Fame. She lent support to a theory that claimed:
…that a toddler became seriously ill and, eventually, “began to exhibit autistic behavior,†after drinking from a plastic spill-proof cup made by Playtex. [Dallas-lawyer Brian R. Arnold ] claims the spill-proof cup was designed in a defective manner that allowed bacteria and mold to build in the cup. Alleging the bacteria caused the child’s condition, Arnold accused Playtex of negligence in distributing a defective cup and demanded $11 million in damages.
Cave claimed that the bacteria and mold caused Dysbiosis, a medical term used pretty much exclusively by the alternative health movement.
She was abetted by William Shaw who owns a laboratory famed amongst thiomersal = autism believers as providing accurate tests for elevated mercury. Shaw said that:
…the child had elevated levels of yeast by-products, indicating a “yeast/fungal overgrowth of the gastrointestinal tract.†Dr. Shaw says such yeast infections cause autism.
Unfortunately for Shaw, it seems that the bacteria found on the plastic cup was not the same sort found on the child in question. Good to know that these labs that so many people claim are accurate obviously double check their work.
Autism is a fertile breeding ground for such hocus-pocus and rubbish because it defies current understanding. That we let this sort of thing grow unchecked is dangerous for the health of children (one wonders if this child went on to be chelated based on such a pack of ineptitude and assumption), dangerous for those of us who wish to find a bit of respect for the state of being autistic and ultimately dangerous to us as a society that we are so willing to let such people treat our children.
This is why we need proper, peer reviewed science performed by those who are proponents of theories and treatments that currently have no efficacy or safety studies. If we continue down this road then treatments like the wearing of a tin foil hat used to prevent autism and alien abduction and causes like a plastic cup will become the norm and our children will truly become lost – not in autism but in the real hell of a frenzied knee-jerk search to treat the increasingly bizarre and to forget about what our _children_ who happen to be autistic need more than anything else. I hope you already know the answer to that. If you don’t then I suggest you step away from the quasi-science.
Left Brain Right Brain 
Sue: If people really do have multiple things going on that’s one thing – and they should be getting treatment for the real problems.
But when people are advocating that biomed treatments should be continued NO MATTER HOW UNSAFE they might be, because the alternative is to leave a child being autistic, that is wrong.
And when you defend chelation, you’re by default defending the stance of “better dead than autistic”, because I don’t see you addressing the safety issues. (let alone the “does it actually work?” question – which is separate from the question of if thimerosal causes autism, since NORMAL mercury poisoning can’t be reversed by chelation…) I just see you saying it’s “worth using” or “worth trying” or whatever.
Sotek: “But when people are advocating that biomed treatments should be continued NO MATTER HOW UNSAFE they might be, because the alternative is to leave a child being autistic, that is wrong.”
This is where it all comes down, really.
The willingness to risk a child’s life on the basis of a treatment under those conditions mentioned above… that is entirely wrong. And that, for SueM’s benfit, is what horrifies the most of us on this blog.
For me and my ex, addressing GI/food issues was removing lactose and gluten from our daughter’s diet. She became less messy, less uncomfortable, and less lethargic as a result.
But she is still autistic. And that is not a problem for us or for her. And, at her current pre-school placement, it is not a problem for the staff.
Toxicity really should be checked by people more reliable and independent than those who have something to sell. Sadly, in the US, medical care is privately-run, with insurance paying for it, and so it is much more open to these health scams than are Finland and the UK.
Chelation has approval for only one thing, and should be avoided in everything else. It is not going to make an autistic child non-autistic. It is likely to do damage to a child not experiencing toxicity problems. It is, even for the licenced purpose, risky treatment (and therefore comes with caveats). It should not be used “willy-nilly”.
There are better ways to facilitate development in children (including autistic ones) than to try to rid them of what has been demonstrated NOT to be a real toxity issue in the fight to get a “normal” kid out of each one.
I don’t even think that the so-called PDDs/ASDs (or other developmental issues) belong to medicine (clinical psychology and/or psyciatry) at all, to be honest. Medicine has continually made a bollocks of the whole issue. About time this stuff was given to developmental/educational psychologists and special education teachers.
Seriously.
… psycHiatry…. keyboard’s gone dyslexic here!
I have noted – with no small degree of alarm – how the “alternative” autism treatments (“biomedical”, if you like, although all medical treatment is “biomedical”, with the possible exception of psychotherapy) have moved from the “generally regarded as safe” (e.g. vitamin B6 and magnesium) to the “potentially lethal” (e.g. HBOT, parenteral gold, stem cell infusion, etc.).
This would not be so alarming if there had been any studies done to show that these therapies were effective – studies beyond the accumulation of parental testimonials and the confident assurances of practitioners who stand to make a bundle from these “therapies”.
You see, if these “therapies” are as ineffective as they appear likely to be, then any risk would be unacceptable. Yet I watch helplessly as practitioners like Buttar and Bradstreet bounce from one poorly-thought-out hypothesis to the next, matching each with “therapies” that seem to be increasing in their potential for harm.
At some point – and I think that point is now in our past – the potential for harm will so outweigh the potential for improvement that disaster is inevitable. We have already seen one death and stand to see more, as I can see no evidence that the “alternative” autism practitioners have learned the lesson.
The issue is not whether the EDTA was administered incorrectly, although that is certainly a factor. The issue is whether there is rational justification for using therapies that are “supported” only by an untested hypothesis – and a weak hypothesis at that.
I can think of no way out of this situation except to wait for the inevitable disaster and the resulting backlash. My fear (more precisely, my prediction) is that several children will die needlessly in order to prove this point.
Prometheus.
I just saw this article on medical research fraud that reacts to the case of the fraudulant Korean cloning research. Check out which one is first on the list of “other cases”:
http://today.reuters.com/news/newsArticle.aspx?type=healthNews&storyID=2005-12-23T185031Z_01_KRA309204_RTRUKOC_0_US-MEDICAL-FRAUD.xml&archived=False
Boyd is still digging for Gold
About that article….
“This Ongoing Series on the Roots and Rise of Autism Welcomes Reader Comment. E-Mail: Dolmsted@upi.Com”
Oh dear…. one of that lot.
I bet our comments would be as welcome as a fart in a spacesuit!
Kathleen just blogged about Olmsted’s article, in particular where he quotes an especially egregious and insensitive remark from Boyd Haley: “http://neurodiversity.com/weblog/article/65/mr-olmsteds-lump-of-coal”:http://neurodiversity.com/weblog/article/65/mr-olmsteds-lump-of-coal
Pity that the likes of Haley can’t find a cure for their own stupidity, isn’t it?
clone3g: “How about this one? http://www.dimensionallife.com/Autism.htm
Dr. Joe Champion!!”
Just saw that!
What a load of bollocks!
Who are these people???????
Prometheus wrote: “My fear (more precisely, my prediction) is that several children will die needlessly in order to prove this point.”
Has any one else wondered – how did we come to know about the death from IV chelation? Certainly not every child’s death in a doctors office is reported on the news. Was it because this child was from the UK? I think it more likely that someone who was worried about the situation informed the media. So, then I ask, how many more children have already died or been made seriously ill be these radical treatments? How can we really know?
Jennifer: “I think it more likely that someone who was worried about the situation informed the media. So, then I ask, how many more children have already died or been made seriously ill be these radical treatments? How can we really know?”
I think that you are correct in this. I think that *at least* one child died entirely without necessity. And I think that we can never really know, since the practitioners who are involved in what is basically the fucking health-fraud of the millenium do not keep accurate record of this type of event (looks bad for them, as advertising gooes)….
Let’s face it…
The chelation for autism thing is only happening in the US… the medico-economic climate there allows this shite to happen. If the system of health-care were like the UK’s, or Finland’s (neither of which are perfect… but rather them than that which the good ol’ US of A has… based on profit first and fuck the rest!), there’d be far less risk!
But Haley’s reference to the lad who died in chelation is tasteless, since – if it weren’t for Haley and fuckwit’s like him – young Abubakar might not be a dead child at this time… he might have grown into what his parents seem to have least wanted: a flourishing autistic child!
That was one wasted kid too many.
Alright Mr. Champagne,
As promised I am getting back to your quotes.
I quote:
“By the time Verstraeten finally published the amended study results in 2003, he had gone to work for GlaxoSmithKline while in the midst of reworking his research results to fix the data around the CDC’s objective of obscuring the link between thimerosal and autism.”
The problem with this wiki quote you gave is that it “begs the question”, that is it assumes that something is true in order to prove it. That logic is circular.
“Dr. Weil: Page 208: “The rise in the frequency of neurobehavioral disorders whether it is ascertainment or real, is not too bad. It is much too graphic. We don’t see that kind of genetic change in 30 years.†(Sounds like the Geiers)”
We are all in agreement then, that the rise in autism is real? I don’t think so.
“Dr. Brent: Page 229: “The medical legal findings in this study, causal or not, are horrendous and therefore, it is important that the suggested epidemiological, pharmacokinetic, and animal studies be performed. If an allegation was made that a child’s neurobehavioral findings were caused by Thimerosal containing vaccines, you could readily find a junk scientist who would support the claim with “a reasonable degree of certaintyâ€. But you will not find a scientist with any integrity who would say the reverse with the data that is available. And that is true. So we are in a bad position from the standpoint of defending any lawsuits if they were initiated and I am concerned.â€
Agreed…..But that does not translate to “Okay, lets obscure/alter the data then….” From what I can tell you are making a non sequitar.
“Dr. Clements: Page 247: “I am really concerned that we have taken off like a boat going down one arm of the mangrove swamp at high speed, when in fact there was not enough discussion really early on about which way the boat should go at all. And I really want to risk offending everyone in the room by saying that perhaps this study should not have been done at all, because the outcome of it could have, to some extent, been predicted, and we have all reached this point now where we are left hanging, even though I hear the majority of consultants say to the Board that they are not convinced there is a causality direct link between Thimerosal and various neurological outcomes. I know how we handle it from here is extremely problematic …”
I agree that a correlation could have been predicted before the study is ever done. We have upped the rate of thimerosal in the US in the last 20 years and the apparent rate of autism has gone up. But we just as easily could have found a correlation between autism and shampoo/hair conditioner, right? It really depends what you set as your parameters in your design.
Also, I don’t have a really high opinion of correaltional work in the first place, so, so, so many people confuse correlation with causation that I think a lot of these studies do more harm than good.
well, I’ve read most of these and I have only one question. Does it matter what caused and what cures it. What should matter is “How do I connect to hi,/her and how do i help him/her connect to me. All these accusations of causes doesnt help it it’s neurological and still a mystery. All these quack cures and diets clothing exercises and etcetc are more cures for the parents sense of mind and alot not all parents are wanting a piece of mind for themselves not for their child. My autistic son is happy the way is and we as his parents had and still have to find a way to connect.
they said omega 3 works
doctor said “they said omega 3 works”
Who is “they”, and what and how does it “work”? Do you have any documentation for this rather cryptic statement posted a month after the last comment?
I was actually researching lead and toxity when I came across
your site. But, as a teacher and researcher I was intrigued
with the ideas-I didn’t spend the time going through all the
data-but I was wondering along with the poisoning debate,
foil hats and environmental hazards if your site was familiar
with Dr. Huggins report, a dentist who advocates removal
of mercury, titanium and gold fillings in teeth to replace
with plastic to cure a whole realm of ailments inculding
autisim. The studies of metal allergy are pretty convincing.
Anyway as far as the tots before dental appointments I’m pretty convinced its the metal alloy in vaccinations.
Take care and good luck,
Lisa
lwing wrote “I didn’t spend the time going through all the
data-”
Try doing a bit more of that… and when you are done, provide us with the citesm, especially in regard to WHICH metal alloy! (thimerosal is not a metal alloy) . The general scientific consensus is that vaccines have very little to do with autism.
Also, some of us (at least I have) managed to make sure that our children have good dental health. My teenage boys have never had a carie that needed a filling.