Should the NIH Study the Impact of Chelation on Children with Autism? Make Your Opinion Known!
Yesterday, an AP story appeared in various publications describing a possible study to be undertaken by the NIH which would dig more deeply into the chelation question. The story had a very definite slant on the situation:
Pressured by desperate parents, government researchers are pushing to test an unproven treatment on autistic children, a move some scientists see as an unethical experiment in voodoo medicine.Autism bloggers have been expressing their opinions - and the opinions range from anger to joy. Some feel that chelation is "quack science" and that any study focusing on the subject is simply money down the drain. What's more, they say, chelation is a risky procedure: it's unethical to treat autistic children with a drug that has the potential to do harm but has not been scientifically proven to have a positive impact.The treatment removes heavy metals from the body and 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.
But many parents of autistic children are believers, and the head of the National Institute of Mental Health supports testing it on children provided the tests are safe.
"So many moms have said, 'It's saved my kids,' " institute director Dr. Thomas Insel said.
For now, the proposed study, not widely known outside the community of autism research and advocacy groups, has been put on hold because of safety concerns, Insel said.
The process, called chelation, is used to treat lead poisoning. Studies of adults have shown it to be ineffective unless there are high levels of metals in the blood.
Others feel that the AP article is misleading - that the NIH is not responding to desperation, but to real and meaningful evidence that chelation may help kids with autism. They're thrilled that the NIH is finally taking action on the issue, and want to see the study started as soon as possible.
With so much debate going on across the blogosphere, it seemed appropriate to create a poll to capture reader opinion. Make your opinion known! If I didn't include your perspective in the poll, add a comment to this blog post.
Comments
I think the key factor in considering this is that for children born after 2001, unless they had the flu vaccine that contained Thimerosal (it is produced w/o it), one would then need to consider the source of mercury found. That’s a very important factor. Also, heavy metals is neuro damaging and the longer it remains, the more long term damage it can do. Most heavy metals leave long term side effects unless removed right away.
None of the above. Before the study on chelation, they should study if the claim that autistic people have high doses of heavy metals in their bodies is correct. Without this premise being proven, there’s no reason to go straight to chelation.
It’s been proven already that chelation has no effect on autism. But if this study is considered to be the absolute definitive one that is recognized by all parents and caregivers as proving once and for all that chelation therapy does not work, then I am all for it.
But I also believe that only autistics who are “autistic” in the genetic definition of the word ought to be tested, and only those who are of sound mind and able to agree to the testing ought to be tested.
I hate my Grandson who is 7 and does not speak to be subjected to these Chelation treatments that he has been receiving I guess for almost a year now. Yesterday my wife was in tears after he took her hand and walked her out of the doctors office motioning to her to get in the car. Please tell me how not to have him receive these treatments when the doctor has print out reports on the amount of metals coming out of him, sometimes reading 10 times more then exceptable ?
There needs to be another question
I think its quack medicine but should be studied
I think disproving it as an autism therapy is vital for the progress of real medicines.
Leila
They actually studied metal rates in Canada and real autistics have slightly less heavy metal poisoning than non autistics.
Toxic metal poisoning when found in autistics is caused by the autism not the toxic metal poisoning.
Autistics love to put things in their mouths. Some autistics can get food sensitivities by mouthing food before their immune system can handle it.
Chelation is an important medicine but it’s use should be used for true toxic metal poisoning most children who receive chelation. It isn’t in its self quackery. Toxic metal poisoning can cause permanent brain damage. Chelation can be very dangerous.
My daughter with her autism like disorders, immunization did not even contain mercury.
I think more people should be worried about smog, and lead and the everyday chemicals we use.
Even if smog, chemicals and carcinogens do not trigger autism they can make life miserable for people with SPD that accompanies some autistics.
Lisa Jo I’m a little surprised by your article. I don’t know if you wrote it trying to take a neutral position but it didn’t come off as such. We have had communications [much appreciated] with each other for awhile now and although i’m not that articulate, I do express my thoughts and feelings. Why is it that everything and anything related to treatments for Autistic children is VOODOO for no other reason then closed minded people think ALL parents hang ALL their hats on the mercury in vaccines? If an Autistic child had 10 times the amount of lead then normal in their system would an intelligent person say ” That Nutty parent thinks Chelation is going to cure her son because of mercury in the vaccination he was given!” Give me a break. No parent with an Autistic child or not would want that lead in their system. By the way where is the AMA and the FDA and any other type of agency that should stop these QUACK doctors?
Bill – I didn’t write the article! It was an AP article which has been cited all over the place for the past few days. I was trying to lay out the different perspectives on the article and its message by linking to various commentaries.
For the record, I would support this research if I actually believed it would have an impact one way or the other. My strong belief, though, is no matter what such a study finds, one group or the other will poke holes in the finding.
If the study were to find that chelation DOES make a difference, scientists and doctors would require a whole slew of additional studies before stating absolutely that the finding is meaningful. Funding and conducting those studies would take years.
If the study were to find that chelation DOES NOT make a difference, those who believe in chelation would simply say that the NIH is not a credible source.
Either way, a single study won’t make much difference. There would have to be a whole series of funded studies looking not only at outcomes but also at the biology of individuals being treated; their symptoms; their genetics; and so forth.
That’s my two cents.
Lisa (autism guide)
There is evidence that children with Autism carry a higher toxic burden. There are many approaches to detoxing besides Chelation, I have done these and have seen results, that are amazing. I think that there is a large number of children effected by vaccine’s (including my son) I think it would be narrow minded to say that every child is the same. Many children are unable to process all toxins, that would include enviromental and injections. These children carry a burden that cycles in their system without help to process out the bad, these toxins WILL do damage. When children are diagnosed with Autism why are there not standard tests to show readings on these children BEFORE we as parents take it upon ourselves to get our children the treatment that works, my son was a mute and diagnosed with Autism in February of this year, now with the GFCF diet and minerals for detoxing, he has over 200 words and very few sensory issues. I think there is more research to be done I think that many children with Toxic burden have Autistic LIKE symtoms, and not Autism. I think we should factor in that children with Fragile X or abnormal chromosomes will probably not going to see the results that children with Autistic Like symptoms might. I think one HUGE mistake classifying them as ALL the same. As they say if you know one Autistic child, you knonw one Autistic child. With science and medicine the way it is today I think that Denial is whats causing the delay in Autism breakthrough!
AND for the record according to the CDC Autism is still on the rise after Thermisol was removed from the shots. That did not happen till after 2005, babies and toddlers that recieved flu shots then, would just be at the age now we would notice Autistic symtoms. Which explains why its still on the rise.
It was the article that first used the term voodoo. There’s also portions of this article left out that I read else where that was even more interesting.
Mercury can have many sources, Thomas Trains for one and many other toys that who knows what they were painted with.
If a child has heavy metals, it’s important to have this tested by a good doctor and have labs done at a good place. I’ve heard of labs in the basement of the doctor. I also have a story about the doctor I contacted in my state. Second opinions should be a must prior to using other chemicals on a child. And finally, where is the source? Mercury is in many things, where is the source coming from?
And because insurance most times doesn’t cover these doctors and their labs, the reporting system or watch dogs are limited. I’d also wonder about their IRS reporting. If they’re accepting cash, do they report it to the IRS?
Bill, you say that you hate having to watch your grandson being subjected to this quackery, yet, you facilitate it by taking him. I assume that his parents want it, and one of those parents is your child.
Tell his parents you have researched it and know it is quackery.
These is an extremely simple solution to this: STOP TAKING HIM!!! If his parents truly want this quackery for their child, let them find a way to get him there on their own.
As for those tests, they are also quackery. Ethyl Mercury is excreted by children very rapidly.
Please tell me how not to have him receive these treatments when the doctor has print out reports on the amount of metals coming out of him, sometimes reading 10 times more then exceptable ?
And Bill, anyone who is chelated, could be you or me, will excrete more metals than is normal.
Unprovoked testing is what matters as far as determining toxicity. Either way, there’s no reason to suspect autistic children in general are heavy metal poisoned, any more than you would suspect that about any child.
Thimerosal was removed from mandatory vaccines by 2001. There is no way to know which children had the flu vaccine containing Thimerosal, or which, like my child had the flu vaccine that didn’t contain Thimerosal and then of who has autism and if they do, it’s onset. The flu vaccine by no means explains the rise of autism rates at all. And of course if we’re only talking about one yearly flu vaccine containing Thimerosal, than as I have been saying in blogs all over for years: Thimerosal has been in vaccines since the 1930’s or 40’s (I could look up the exact year) if all it takes is one vaccines like for the flu, then back in the 40’s and 50’s all it would had taken in one vaccine as well to see the autism rates.
As Judge Judy says all the time “if it doesn’t make sense than it isn’t true”. There surely needs to be more evidence than just stating a simple flu vaccine- and why only would it effect children? Why not neurologically also effect adults? Mercury poisoning does not discriminate against ages.
If there are children that do not discrete toxins from their bodies as they should, yes that should be looked into, and of course all environmental’s around that child puts that child at risk, and for the rest of their lives. If one can not pin point the exact source, then one has no idea if the child would need chelation for the rest of their lives.
Bill,
sorry to hear your frustration. Add to what Joseph and The Probe have written: chelation shouldn’t take a year. Even if the child is actually heavy metal poisoned, it doesn’t take a year to get the metals out. This is another example of how this therapy has been misused.
As to the basic question, I don’t think this study should happen. There is no good evidence for chelation therapy being effective, there certainly is no good science for why it should be done in the first place (autism is *not* a novel form of mercury poisoning).
As Lisa rightly points out “If the study were to find that chelation DOES NOT make a difference, those who believe in chelation would simply say that the NIH is not a credible source.”
NIH should do science, not politics.
With so much debate going on across the blogosphere, it seemed appropriate to create a poll to capture reader opinion. Make your opinion known! If I didn’t include your perspective in the poll, add a comment to this blog post.
About.com has a reputation for providing accurate information. I am saddened that you think an internet poll is an adequate response. An autism guide should be guiding us, evaluating the evidence and considering the issues.
The justification for this study will be established one way or another, not by a vox pop, but on the basis of scientific and ethical arguments.
Is there any evidence that chidren with autism have higher levels of mercury and lead than non-autistic children?
Is there anything to suggest that autistic children are susceptible to lower levels of lead and mercury than the population at large which could justify chelation for low doses of mercury or lead that are normally non-toxic?
Is there any evidence to suggest that chelation will improve brain function. E.g. have brain damaged children with lead poisoning recovered IQ points after chelation?
What about the reason this study was put on hold in the first place, the ethical objections? There is some evidence that chelation harms the brain in the absence of heavy metal poisoning. So is it ethical to chelate children who do not have toxic levels in their system? And if the trial is so safe why not have a control group of healthy non-autistic children chelated as well?
Will an internet poll answer these questions?
So far, there have been plenty of anecdotal stories from parents and practitioners saying “yes” – but there’s been very little research to support their claims.h
There is ample research to indicate chelation is not an effective treatment for autism. For one thing, studies have shown that autistic children do not have any more heavy metals than NT kids. No credible study shows that chelation helps kids with autism. There is no basis for believing chelation helps, unless you take into account the anecdotes.
Given lack of a control group, and enough time, an autistic child undergoing chelation will show improvements. That’s because autism is a disorder of developmental delay, not stasis. It’s great that a child suddenly acquired 200 words, but irrelevant unless you have have control group for comparison.
Mike: It absolutely never occured to me that a poll would have any impact whatever except to give people an opportunity to voice their opinions. It certainly isn’t intended to solve a medical issue!
As to whether there is or is not evidence that chelation can make a positive difference for children with autism, here’s how I see the issue so far (please bear in mind that I am speaking as a parent/writer/researcher, not as a medical professional):
There has been research into chelation as a treatment for autism. The research findings have been both positive and negative. The positive findings come largely from the Geiers – medical doctors who are admired by some and condemned by many. Their findings are published and are available in PubMed, though many of their papers are in Medical Hypotheses, which is not a highly regarded journal.
There are a great many people who are making medical decisions based on the Geiers’ work – in part because theirs is virtually the ONLY work available on the subject. These parents are avoiding vaccinations, and using a variety of biomedical interventions which some feel are helpful to their children.
I don’t feel it’s helpful to simply say “these studies are meaningless,” or to ignore parents’ testimonials. Even if the studies ARE meaningles, and even if parents ARE incorrect in their assessment of cause and effect, new autism parents will continue to seek and find the information that’s available.
I think it would be useful to do preliminary studies of the efficacy of chelation, and – pending IRB approval and review by ethics boards – I think it would be useful to do a series of proper double blind placebo based tests to determine whether chelation has any place in treating autism.
Parents are told by their doctors to “do their research.” If parents are finding bupkus from the standard sources, they will look elsewhere. At this point, the only “medically approved” treatments seem to be ABA and risperdol. You can take a look at the prior blog on costs of treatment to see how controversial ABA is – and risperdol, of course, is a potent drug with its own issues.
Parents are looking for options. I’d love to see the scientific community provide more!
Lisa (autism guide)
Lisa
thank you for answering a question I never asked.
As to whether there is or is not evidence that chelation can make a positive difference for children with autism, here’s how I see the issue so far.
Let me know when you address the questions I actually asked.
Extremely interesting, there is a way to know that Thermisol was still in flu shots in 2005, the CDC doesn’t even deny this, during that year flu shots that were given to children in a two part series, contain the inredient THERMISOL… which was used for keeping the vaccine from going stale. This is not hard to find either, they put a sticker on the chart note when the injection was recieved with a lot number that identifies that particular vaccine.
Absolutely YES I think that one vaccine a year can cause the scales to flip. My child was very sick the day he recieved the vaccine. Chart notes to prove he was sick ever since then….. then on top of that he recieved all of his other infant vaccines within the year after that, his poor system never had chance to catch up…… and we wonder what causes Leaky gut syndrome and why Autistic chilren suffer from this… it all goes hand in hand. As for not knowing where toxins come from, doesn’t mean you cannot do your best to prevent your child from being exposed to more than necessary. As for detox or chelation there are steps you can take naturally to help your bodies burden through a lifetime. Sweating for instance the skin is a giant organ that can sucreet toxins by sweating. But whose to say Chelation wouldn’t be helpful to start with then try to maintain. How are we ever going to know if we don’t study it!!! The information is out there, maybe everyone should be less narrow minded, you don’t cure cancer without looking at the whole picture. Who decided Radiation and Chemo were safe and worth it, people are still alive right, but the odds are still there.
Statistics smatistic, if they were proof doctors would be treating Autism and not just diagnosing it!
I’d rather the NIH conduct a study on chelation, even though there will always be plenty who will disagree with the findings (yay or nay). Every treatment always comes with parental anecdotes & testimonials but these don’t equate a cure. My son was diagnosed at 4 yrs & I’ve spent the last 13 researching the ‘latest & greatest’ only to reach two conclusions: 1) Until we know what actually causes autism, claims of a cure or treatment are premature and 2) Since there seems to be evidence of more than one cause of autism, it’s unlikely that there will be a one-size-fits-all cure.
Before anyone condemns me as a pessimist, I can tell you that we’ve been through Auditory Integration therapy, Sensory Integration therapy, GFCF diet (made my son ill), Secretin injections and so on before we simply accepted our son for whom he is. My husband still longs for that ‘miracle cure’ but nowdays I demand absolute proof before I submit my son to any more questionable treatments.
Theres not a cure for diabetes but there are still ways to cope with it. This is whats important to me. My son doesn’t need cured but if there is a way to cope that will help to make him feel better, I like you Deedee will try. I only hope that ten years from now there are treatments that are OFFERED besides just therapy or antiphsycotic medications, and that we might know what does help. I just don’t think we will figure it out unless studies to do so happen. Chelation studies are just the top of the iceburg, theres so much more going on with these children, we NEED to know how there bodies are working. Unfortunately medical science is to busy denying everything than studdying it. Parents are forced to try everything on there own, its very discouraging.
Hi, living outside USA and being the mom of an autistic child I consider that first to a chelation study, a deeper research on the proper testing to detect a potential bioaccumulation of toxic elements would be adequate. The “provocation test” is controversial and there is not a consensuated test to detect bioaccumulated toxic elements-not available to blood/urine-others. Now, considering the anecdotical evidence and a lot of published research on metabolic and nutritional abnormal results in diferent subgroups of autistics, why then the transport, management , metabolism and excretion systems in ASD – all ages – are not more studied? BTW, this kind of research would be useful also to understand adverse reactions to many needed drugs (such as antiepileptics ) many autistics have, IMHO.
Interesting is all vaccines have lot numbers and manufacturers. not all of them even used Thimerosal in the production of their vaccines and one would need that info to determine which of the vaccines had Thimerosal. Regardless of when they started to offer Thimerosal free flu vaccines, there still is no way to know of which children had one or not. For instance my son had his first at 8 years old, after I seen the Today Show and a set of parents holding a picture of their daughter who died. Because my son never had a flu vaccine, it also was a 2 part vaccine. Many people don’t do flu vaccines anyway due to it’s a hit and miss for the strains. There’s no way to know if the still rising numbers of autism is related or not; it’s speculation.
A 2008 study found that children with autism had no more peptides in their urine than typical children, casting doubt on the proposed mechanism underlying the leaky-gut theory and autism. it’s also poorly recognized but an extremely common problem. There can be causes for this, like Celiac Disease which is inherited. My kid has irritable bowel syndrome, it’s also inherited.
With autism, it is said you manage parts of it. Some kids have depression and anxieties, you then treat that. Some have sensory issues, you treat that. If a child has heavy metals, you treat that.
I have had no problem figuring out which flu shot my son recieved there is a vaccine registry where you can look up the vaccines, maybe its just my sons old pediatrician but they put the sticker from the bottle right in the chart note, I looked up the specific information and its there clear as day that there was thermisol in the shot. The one and only flu vaccine he ever had. Not to mention shot containg thermisol that was supposedly removed. They obviously removed thermisol for a reason, right??
Lisa your article is not quite accurate in all respects, and I think it shows you already have your own bias. Chelation is not always done with “powerful drugs”. In fact did you know Epsom Salt (Magnesium Sulfate) is a weak chelator? Many supplements found in various power shakes are also chelators (Alpha Lapoic Acid) for example. One problem is the over narrow definitions. There are several protocols for chelation that do not involve an IV, trips to the doctors and extreme amounts of metals being removed at a time. In short, there IS a middle ground. These are much safer options. It’s time to let real scientists get involved!
Thanks for the discussion!
How do you think they locate vaccines for recalls? Or know who was shipped what? How do you think they know the expiration dates?
I’d bet everyones child’s medical records contain producer and lot numbers, I believe it’s the law, not a fluke of an older doc. The reason for the removal of Thimerosal was ‘purely precautionary’ and to date, there still is no concrete proof of that link to autism.
The article was talking about medical based chelation. Epsom salts, clay, zeolite, juice and even Shu Li foot pads. Seen it on TV late night. Sucks the toxins right out while you sleep. All over the counter products not overseen by a doctor and even though your body needs Magnesium Sulfate, too much is not good.
I feel, when the parents of many affected kids want the study, it should be undertaken.
But initial studies should not be experimental studies, but observational or analytical studies.
If there appears any strong reason to consider the possible benefits, better studies may be undertaken.
The study won’t be able to show any linkage. I cannot remember how long I have been tuning into this blog, but I have been ranting that autism is genetic from the very beginning.
Today we have an article which has identified six new genes that are responsible for autism which means the percentage of autism cases that can be attributed to genetics has jumped to 15. I predict that new research posting within the next five years will bring that number up to 25 to 35% (if not higher) and once a genetic test is developed on the genes most shared by all autistics, it will render all the current “treatments” quackery.
If people want to waste their money on researching chelation therapy, that is their right, but in so doing, they are preventing autistics from getting educational and vocational training and improving medical care for those who need it.
The one advantage such studies have is that they will increasingly identify and marginalize purveyors of quack therapies. If any of the practicing people should old a medical license, perhaps they can be stripped of them and put out of business.
I think it would be useful to do preliminary studies of the efficacy of chelation, and – pending IRB approval and review by ethics boards – I think it would be useful to do a series of proper double blind placebo based tests to determine whether chelation has any place in treating autism.
Dr. Jim Adams carried out a study. I’ve seen the results. There’s no statistically significant difference in outcome between groups. This is despite the inherent selection bias that would exist in a study by Jim Adams (who is a mercury parent essentially), despite the fact that some of the parents in the study claimed to be able to breach the blinding because they knew about the symptoms of chelation, and so forth.
I tend to side with those who have safety concerns regarding such a study. But I think it will cause chelation to be phased out as a topic in autism discourse (unless its findings are positive) just like Secretin was, and it might also document some of the side-effects of chelation therapy.
The positive findings come largely from the Geiers – medical doctors who are admired by some and condemned by many. Their findings are published and are available in PubMed, though many of their papers are in Medical Hypotheses, which is not a highly regarded journal.
Are you suggesting that the Geiers have published peer reviewed studies that indicate chelation is effective in the treatment of autism? If that is not your intent, then you should rewrite that paragraph.
How is it relevant that the Geiers have a fan club? We’re talking about scientific evidence to support your chelation might help autism.
Aut – let me put it this way.
Imagine you’re a parent with a newly diagnosed child. Your pediatrician tells you “do your research and make your best decision.” You know that a good source for reliable research is PubMed.com (the NIH directory of research findings). You go there looking for anything you can find about mercury toxicity and autism.
I’ve done that. And I’ve found plenty of listings.
The Geiers certainly aren’t the only physicians with articles in PubMed which seem to support a mercury/autism connection. In fact, there are quite a few. Some of those studies are, in fact, literature reviews… medical hypotheses… etc. Some of the protocols may well be problemmatic.
But the average parent doesn’t know that. What they do know is that there are plenty of listings in PubMed that appear to connect mercury with autism.
Using common sense, parents reason “if there’s a chance that mercury caused the problem, then removing the mercury may alleviate the problem.”
Asking their pediatrician about this, they’re likely to get a “no” vote for chelation – but since there’s no actual research saying that chelation does NOT work, many parents choose to move forward on the off chance that it WILL work. Certainly, there’s plenty of anecdotal evidence that it does, and there are plenty of sites, books, parents and practitioners supporting that perspective.
So, bottom line, my opinion is that simply stating “the Geiers and their compatriots are wrong, and parents are mistaken about what they think they know” isn’t enough. If the Geiers ARE wrong and parents ARE mistaken, then pediatricians should have that information at their fingertips – along with evidence to support it.
Obviously, any study that looks at chelation should be reviewed carefully for safety and ethical concerns. And most likely there should be a series of such studies (as I said in prior posts). But without such studies, what I’m seeing is that folks who say “chelation is absolutely ineffective in treating autism, and anyone who says otherwise is itching for a fight” is going to get that fight – in spades.
Given all of this, isn’t it worthwhile to collect the evidence?
Lisa (autism guide)
My child has been partially chelated (we ran out of money)and within a few weeks we saw a permanent change in his speech from mainly echocolia to more normal speech patterns. My child was tested and found to have high levels of antimony, aluminum and mercury,(which are components of vaccines)in his blood. My child is also automimmune, which I have read may have been caused by the mineral oil used in vaccines.
This was done over five years ago,and there were no noticeable side-effects.
Our chelaton experience has been entirely positive.
You’re right Lisa, the article is slanted. It posits a “straw man” argument and is very “sexist” as well. Here’s what I noted:
(1) “The treatment removes heavy metals from the body and is based on the fringe theory that mercury in vaccines triggers autism [...]. Mercury hasn’t been in childhood vaccines since 2001.”
MY RESPONSE: This is a classic “straw man” fallacy. First, Mercury is still in all multi-dose vaccines, including flu shots, which are “childhood vaccines”. Second, there are other sources of mercury, lead, and other heavy metals… food, air, water.
Autistic kids sometimes do show increased uptake of heavy metals and a decreased ability to process them out.
I do not chelate my autistic son and I don’t think heavy metal toxicity caused -his- autism. But I bet dollars to donuts that SOME cases of Autism are explained by heavy metal poisoning. And those kids would benefit from chelation. Chelation is risky, but if we can identify those individuals who need it, it can really be of tremendous benefit.
The second criticism I had with the article was some pretty clear sexism:
(2) “So many moms have said, ‘It’s saved my kids,’”
Why single out “moms” — as if to imply that women/moms are irrational and “hysterical” and are willing to do any hokus-pokus thing to help their kids??? What an insult! What arrogance!
To the contrary, I think moms are often in the best position to accurately judge the positive and negative effects of a treatment on their autistic child. (I happen to be a dad who thinks he is also pretty “dialed in” on what works and doesn’t work for his ASD son).
Moms on average spend more time with their ASD kids than anyone else. And NO ONE loves the child more than his/her mom (and dad). So parents should be seen as valuable sources of information about improvement/deterioration following any treatment.
The “professionals” always want to dismiss moms’ observations as “anechdotal” or as being “the product of irrational hope”. Nuts! If the child gets better, mom can tell. If he stays the same, mom can tell. And if he gets worse, mom can tell. Why throw out perfectly good evidence of what works and what doesn’t.
Yes, it’s “anechdotal”, but that’s why the research is necessary. A well-structured study can -quantify- the effect which has been observed by parents.
It cannot be said that “heavy metal poisoning is unrelated to autism.” SOME kids’ autism is clearly a side-effect of heavy metal poisoning.
It is these doctors who are irrational. They have lost their objectivity and intellectual curiosity. I’m really sick of their arrogance. It is slowing down finding the cause(s) — and that is to these doctors’ shame.
They used to think Tuberculosis was a psychosomatic disease! They used to think viruses couldn’t cause cancer. (Witness HPV) They used to think “stress” causes ulcers. (Witness h.pylori). These same doctors used to think Autism was purely psychological, with no neuro-biological component. AND THEY LECTURE US about what IS or ISN’T the cause of Autism.
Most doctors were smart enough to graduate from medical school. That is enough to inculcate them with the arrogance that goes with an “M.D.” after their name. But they have no real clue or intellectual curiosity beyond what was in their textbooks in medical school.
(Don’t get me wrong, the same can be said of lawyers and other professionals — but we’re talking about doctors here).
About 1%-5% of doctors actually possess the aptitude and rigorous scientific temperament to seek to understand the causes of diseases. Unfortunately, a lot of doctors who have found a “home” in the field of Autism are not in this 1%-5%. Instead, the doctors who nestle into the Autism field come from the NIH, etc., where they have already been programmed to think parents are bad evaluators of their children, vaccines cannot possibly have any role in autism, etc. etc.
They have neither the intellectual curiosity to find the cause, nor the intellectual capacity to study it.
We need a fresh 1% who are OBJECTIVE and FIRED UP to find a cure.
How do we recruit them???
Very best regards,
-Bob
Need to reply to some illogical positions laid out by this Thomas D. Taylor dude…
He has the understanding of genetics of the average 4th grader.
Here’s what he says:
THOMAS D. TAYLOR SAID:
Today we have an article which has identified six new genes that are responsible for autism [...] I predict that [...] once a genetic test is developed on the genes most shared by all autistics, it will render all the current “treatments” quackery.
[...]
If people want to waste their money on researching chelation therapy, that is their right, but in so doing, they are preventing autistics from getting educational and vocational training and improving medical care for those who need it.
/
/
/
MY RESPONSE:
Thomas D. Taylor’s argument is a non sequitur (i.e., his conclusion does not follow from his premises). Let me give a couple of real-world examples that destroy his argument: Down Syndrome and PKU.
Down Syndrome is a genetic disorder (trisomy-21). It has been well-established that Down Syndrome sufferers’ IQs can be raised by modifying their diets and increasing intake of certain nutrients. [See, e.g., Luke A, Sutton M, Schoeller DA, Roizen NJ. Nutrient intake and obesity in prepubescent children with Down syndrome. J Am Diet Assoc,1996;96(12):1262-1267. See also, Reading CM. Down's syndrome: nutritional interventions. Nutr Health,1984;3(1-2):91-111; and Harrell RF, Capp RH, Davis DR, Peerless J, Ravitz LR. Can nutritional supplementation help mentally retarded children? an exploratory study. Proc Natl Acad Sci U S A,1981;78(1):574-578]
People with Down Syndrome – a genetic disorder – benefit from dietary changes???? Yes, Mr. Thomas D. Taylor, they do.
Next, let’s look at PKU.
It is well established that Phenylketonuria (”PKU”) is an autosomal recessive genetic disorder.
People with this genetic disorder need to maintain a low phenylalanine diet, avoiding milk, dairy, meat, fish, eggs, beans, and nuts. If they don’t, they suffer brain damage and interference with thinking and problem solving.
So Mr. Thomas D. Taylor’s position, that if autism is genetic, then treatments involving dietary changes, chelation, etc. are “quackery”. If he is right, then it is “quackery” to place Trisomy-21 patients on a special diet. If he is right, then it is “quackery” to place PKU patients on a special diet.
Thomas D. Taylor’s argument is illogical; that doesn’t necessarily mean he is wrong, however. I’m not saying that chelation works or that dietary changes work for autism. But there is plenty of “mainstream” precedent for genetic disorders being treated with special diet.
Chelation removes toxic heavy metals. It appears that at least some autistics have a lower-than-normal ability to process out heavy metals and may accumulate them to levels which cause their autistic symptoms. It is undeniable that a certain percentage of autistics “recover” or improve after chelation.
It is also well-established that chelation is very dangerous and must be done under a doctor’s supervision.
It is also well-established that many or most autistics do NOT have toxic levels of heavy metals and show no improvement after chelation.
Thus, each parent must balance the risks and potential benefits of chelation. And studies are badly needed to determine the prevalence of heavy metal toxicity in autistics and to develop a safe means to determine which ones are good candidates for chelation and which are not.
Mr. Thomas D. Taylor, I don’t mean any offense to you. I must, however, “protect the record” so that parents are not led astray by your comments.
Bottom line: the jury is still out on chelation and diet. It clearly helps some autistics. Unbiased research is vital so that risky chelation is only performed in the sub-population of autistics in whom heavy metals are a culprit.
Best regards,
-Bob
are paliative.
I retract the part of my last post which says,
“He has the understanding of genetics of the average 4th grader.”
I was miffed when I read his post because he was essentially labeling as “quackery” millions of parents’ good-faith best efforts to help their kids with every available means, including diet and chelation.
Parents are forced to make these decisions in the absence of any clear medical information — because unbiased medical information remains sparse or non-existent, because the research hasn’t been done.
We need to not “curse the darkness” — which is what Mr. Thomas D. Taylor was doing with his “quackery” label. Instead, we need to “light a candle”. We need to do real unbiased research to track down these answers.
IS THERE ANY OTHER DISEASE THAT AFFECTS AS MANY PEOPLE AS AUTISM, ON WHICH SO LITTLE HARD REASEARCH HAS BEEN DONE?! I CAN’T THINK OF ANY.
However, my “4th grade” comment was superflous and gratuitous. It was also uncivil, for which I sincerely apologize to Mr. Taylor. I’ll re-read my posts before I hit the “Say It!” button next time.
-Bob
The Geiers certainly aren’t the only physicians with articles in PubMed which seem to support a mercury/autism connection.
That’s the problem: to a layperson, the studies “seem” to confirm previously held convictions. That’s how confirmation bias works.
I don’t feel it’s helpful to simply say “these studies are meaningless,” or to ignore parents’ testimonials.
The problem with media coverage of autism and vaccines is the reflexive urge journalists have to treat both sides as equal. But there is no credible evidence to suggest that chelation might be an effective treatment for autism. The entire case for chelation relies heavily on two shaky premises:
1. That mercury in vaccines accumulate in some children, leading to cognitive impairment that mimics autism. But studies of childrens’ blood levels show no appreciative difference in blood Hg levels between ASDs and NTs (yes, I’m aware of Holme’s baby haircut study). What’s more, the symptoms of autism are distinct from mercury poisoning. I don’t feel it’s helpful to simply ignore these inconvenient truths for the sake of appeasing the AoA crowd.
2. That the alleged “thousands” of anecdotes of kids who miraculously improve following chelation are reliable. That’s not how science works, nor should it work that way. Do we really know how many parents have reported the same outcome? Is there third party verification for these reports? Human recall is notoriously unreliable – ask the attorney from Las Vegas, provided he has any trial experience.
Autism is a disorder of development, not stasis. These kids will continue to grow and learn and acquire more skills, albeit more slowly. No matter what intervention you try – chelation, aromatherapy, exorcism, sleeping under a pyramid – given enough time, and lack of a control group, you will see improvement.
.. he was essentially labeling as “quackery” millions of parents’ good-faith best efforts to help their kids with every available means, including diet and chelation.
Quackery describes an unproven and dubious medical practice. Parental efforts to help their children is not “quackery”. Efforts to make money by misleading parents into using unproven and dubious treatments – that’s quackery.
How do you define quackery? Health care fraud is an $80 billion a year racket in the US. Do you think the bad guys know about autism?
What criteria do you rely on for separating the wheat of truth from the chaff of nonsense when in comes to evaluating medical treatments for autism? Just saying something hasn’t been studied to your satisfaction doesn’t really cut it. Exorcism hasn’t been studied, but I don’t hear parents clamoring for a study.
Parents are forced to make these decisions in the absence of any clear medical information — because unbiased medical information remains sparse or non-existent, because the research hasn’t been done.
Nearly all scientific studies are subjected to bias – observer bias, confirmation bias, selection bias. Fortunately, we have the scientific method to control for biases. No study will be perfect, even the best executed ones. But if we listen to the best available science, which is based on a long-term accumulation of knowledge, the conclusion is inescapable – vaccines don’t cause autism, and chelation is not an effective treatment for autism.
If something hasn’t been studied as much as you’d like, it might be because there’s no credible reason to study it in the first place. If you looked hard enough, you could find parents who swear by exorcism, but that’s no reason to launch a study. The premise has to be plausible. Why would exorcism work? What would be the mechanism?
What is the premise behind chelation for autism? Autistics have no more heavy metals than NTs. That’s been studied. Thimerosal has never been credibly linked to autism – TCVs have been gone from the ped vaccine schedule for five years, and diagnoses haven’t gone down accordingly.
The only reason anybody is talking about chelation is because of the unverified story, repeated over and over, that thousands of parents swear by it.
That’s what we used to hear about secretin.
“The only reason anybody is talking about chelation is because of the unverified story, repeated over and over, that thousands of parents swear by it. That’s what we used to hear about secretin.”
IMHO, that’s sort of the point. Because secretin was thoroughly studied and credibly disproven, it’s no longer a part of the conversation. Had it NOT been thoroughly studied and as a result discredited, it would no doubt STILL be part of the conversation.
Human beings seem to be “wired” to see association as cause. We see thing A, then thing B, and it’s almost impossible not to draw at least a preliminary conclusion that A causes B. It’s naive, perhaps, but it seems to be built in. The other name for this logical leap is “common sense.”
Common sense tells us that being cold causes us to catch colds… that gravity is caused by the spin of the Earth… and so forth.
Common sense makes sense – but it ’s often flat out wrong.
If parents see their child receive a vaccine and then develop autism, their common sense tells them there’s a connection. Their common sense could be wrong.
When parents chelate AND their child improves, their common sense tells them there’s a connection. Again, they could be wrong.
If a set of properly designed studies tells us there IS no connection, we’ve gained that information. But until we DO the study, parents will go by their common sense – whether it’s right or wrong.
Lisa (autism guide)
RESPONSE TO AutismNewsBeat:
AutismNewsBeat SAID:
Human recall is notoriously unreliable – ask the attorney from Las Vegas, provided he has any trial experience.
MY RESPONSE (Since you asked…)
Yes, I do have lots of trial experience.
Human recall is imperfect, but you are wrong — it is quite reliable when it comes to salient (important) facts.
I’m sure you’re referring to those experiments where a “bank robbery” is staged and “eye witnesses” are then asked to recall what color shirt the “robber” was wearing; they may say “blue” or “green” and it turns out to be a gray shirt.
But NOBODY misses the salient fact that a ROBBERY took place.
Correspondingly, when parents report improvement or regression in an autistic child’s behavior, it’s probably reliable. It may not be well-quantified, but it is probably based in fact.
Because of the love and close attention parents pay to their autistic children, improvements and downturns are “salient facts”.
As a parent of a 2-1/2-year-old PDD-NOS boy, I may not remember what color shirt my son wore yesterday, but I sure as heck remember how many “melt-downs” he had.
Another reply to AutismNewsBeat.
Ken,
Today’s quack may be tomorrow’s Salk. On the other hand, today’s quack is often still tomorrow’s quack.
First, we need to untangle your arguments. You conflate chelation, thimerisol, and immunizations — which are really 3 separate topics.
/
First, CHELATION:
Your equating chelation with exorcism is a straw man. Exorcism relies on the supernatural, chelation is chemistry.
Look, I’m with you as far as “power crystals” and “magnet therapy” being quackery. But chelation REALLY DOES remove heavy metals from the body (…both harmful ones, and those essential to life, like zinc, manganese, and copper).
So if you think the questions about chelation are the equivalent of believing the earth is flat or the moon landing took place in a Hollywood studio, I think you’ve lost objectivity.
Moreover, it is undeniable that some kids REALLY DO have heavy metal poisoning. Maybe it’s not from Thimerisol, but maybe from eating too many tunafish sandwiches. Maybe from lead paint on their Chinese toys. Why are pregnant women warned not to eat too much tuna, tilefish, shark, swordfish, or king mackerel?
So the REAL question is how to identify those children who have toxic heavy metals in their bodies.
An interesting question is whether those kids are exhibiting symptoms of autism, and whether there is a causal nexus between those kids’ heavy metal poisoning and their autistic symptoms?
LisaJo makes this point far better than I can.
/
Continuing my answer to Ken / AutismNewsBeat…
/
Second, THIMERISOL:
It’s still in flu shots and every other multi-dose vial immunization.
It may be true that kids receive less thimerisol nowadays than they did in the “good old days”.
But it’s also possible that the Thimerisol damage was already inflicted on the epigenome of our parents and grandparents, and is finally expressed as autism in the second or third generation.
A multi-generational epigenetic effect was demonstrated in a study of vital records during and following the Irish potato famine. The lifespan of great-grandchildren of those who lived through the famine were significantly lengthened or shortened, depending on whether the great-grandparents were pre- or post-pubescent at the time of the famine (this effect was robust after controlling for other factors, such as socioeconomic standing, etc.).
Maybe autistic kids are more sensitive to mercury than non-autistics. Maybe they have a genetic or epigenetic susceptibility that makes otherwise “harmless levels” of mercury the “trigger” for their autism.
Thimerisol is still on the table. I personally don’t think Thimerisol is a major culprit in the epidemic of Autism, but I certainly acknowledge that it is a scientifically legitimate and worthwhile subject for unbiased research.
/
Third, VACCINATIONS:
If a parent is concerned about the dozens upon dozens of immunizations their toddler is receiving, they are labeled “irrational.”
In my book, there is nothing irrational about a parent’s skepticism over the side-effects of pushing a cocktail of antigens, adjuvants, and preservatives into your child’s bloodstream. …Bypassing all of the body’s regular immunity barriers (skin, lungs, intestines).
Most of the parents I know (including me) who have “vaccine concerns” have not refused all vaccines. They just want to follow a modified schedule, spacing out the necessary shots and eliminating the stupid ones. Yet many doctors dismiss these parents from their practice. Why the hostility?!
I find that the most “irrational” positions are heard from the pro-vaccine crowd.
To the pro-vaccine crowd, vaccines are a panacea. They never met a vaccine they didn’t like. So they shove Hep-B, varicella, rotavirus, and numerous unnecessary but mandatory vaccines down our throats.
The burden of proof ought to be on the pro-vaccine crowd to scientifically demonstrate that they are doing no harm by adding each new vaccine. Maybe there are synergistic effects. Maybe there are cumulative effects.
Science certainly recognizes “synergistic” and “cumulative” effects when it comes to environmental protection because the environment is “complex.” Well, the immune system is also very complex and still not well understood. Yet if a parent is concerned about “synergistic” and “cumulative” effects, they are labeled irrational and dismissed from some doctors’ practices.
So I do not think it is irrational to ask whether chelation might help, or to raise questions about vaccines or thimerisol.
Lisa, scroll down a list of DAN! docs sometimes, and look at the services they offer. Secretin is still being used in the treatment of autism. Do you really believe that a study that disproves the efficacy of chelation will convince anti-vaccine activists to pursue other interests?
Bob, I don’t know where to start. There have been a couple studies that show parental recall of their child’s regression after vaccination was wrong over half the time. The perceived regression is only part of the story – there’s also the matter of how long after the vaccines the regression occurred, and whether there were signs of autism before the vaccination – the gray shirt.
It doesn’t matter that chelation has legitimate medical use. So do band-aids and suntan lotions. Most reports of heavy metal burden in autistics comes from quack chelation treatments that use challenge tests to measure Hg in urine. Challenge tests are misleading, as I’m sure you agree.
The fact is other disorders do look like autism, and prior to the diagnosis many parents never have any medical tests done. Mercury poisoning and lead poisoning can both look like autism, but they are not.
That’s not really the point.
Everyone always brings up the flu vaccine, and it is recommended for children however to include that into the mercury equation, one has to determine if the general population is giving the flu vaccine to their young children or not. I am part of the general population and my child never got one until he was 8 years old, and it did not have mercury.
DAN! docs do not determine the source of mercury, and very few I have ever spoken to, were their child ever not found to have mercury poisoning. It’s also interesting that if a child’s body cant discreet the metals out, will they also absorb and discreet out large amounts of vitamins? If one doesn’t find the source could the child be re-exposed? If their bodies do not discreet things normally, would it not mean the child would need chelation for a long, long time? Many DAN! docs do not have the ability do conduct more tests to answer questions.
And again, many things factor into when a child starts to progress. Many say after they did this or that my child started to talk (most times that’s what is stated but autism is much more than lack of verbal speech)
most times a child has many other interventions going on and when the child began to progress could be a combination of many things. rarely does a parent choose to only do one intervention at a time. I started my child on interventions, private and school. I seen no improvement at all for that first whole year and then one day, he started to talk. Chelating didn’t do this, nor did ABA or RDI. Hard work on my son’s end made this happen.
I think parents want so badly for change, they can be sucked into believing anything may work. That is not quackery but what is, is the many things that’s offered to help a child with autism. Really, one must tread carefully, find a good trustworthy doctor.
In my book, there is nothing irrational about a parent’s skepticism over the side-effects of pushing a cocktail of antigens, adjuvants, and preservatives into your child’s bloodstream. …Bypassing all of the body’s regular immunity barriers (skin, lungs, intestines).
Is it irrational to say that vaccines contain anti-freeze, when in fact they don’t? Is it irrational to say that measles is harmless, or that polio has been eradicated, when neither statement is true?
Is it irrational to suppose that the only time children are exposed to “antigens” is in vaccines?
Is it irrational to suggest that vaccines are injected directly into a child’s bloodstream, when in fact the shots are given IM?
I ask because I read and hear these statements all the time from well-meaning but misinformed parents. You may think there’s a dearth of good information about vaccines, but the opposite it true. You just need to know where to look, and who not to listen to.
“Maybe autistic kids are more sensitive to mercury than non-autistics. Maybe they have a genetic or epigenetic susceptibility that makes otherwise “harmless levels” of mercury the “trigger” for their autism.”
That’s the point, what makes some kids more prone to this than other’s, genetically.
Vaccines are not mandatory, parents in most any state has a choice. My mother made this same choice 40 some years ago and if she of all people knew of this choice, any one could also know it.
The way to build antibodies is to be slightly exposed to the virus. Being exposed directly to the virus via an infected person can prove deadly for some. Most of these viruses infect the respiratory system and the reason it effects children and infants so greatly is due to their systems being so tiny. We’re on vacation, and I am on our lap top. We visited a cemetery and one whole section is of children, and a lot of children who died very young of small pox. That horrible disease didn’t go away on its own. neither did polio or the measles. Waiting for vaccines until a later age is fine, until that child is exposed to one germ.
This isn’t about pro-vaccine crowd or anti-vaccine crowd. “They never met a vaccine they didn’t like” is a rude statement to those who choose to vaccinate their children made that choice based on science, history and their own risk factors. The measles kill many children all over the world each year. The latest measles out break was traced back to countries that are not dirty or 3rd world. The age of the child would matter pertaining to Thimerosal in vaccines, and if the child never had a flu vaccine, let’s just forget about the flu vac. It’s speculation as to which children had it. People and children on Chemo could die if you’re carrying around a nasty preventable virus.
Last, everyone writes books. I could write one myself. I don’t buy every book out there nor would I believe every book I read. Chelating should be done if there is heavy metal’s. The point is many of these doctors don’t trace where the mercury ever came from.
A meta analysis, published this week in Science Magazine, shows autistics are prone to “minor physical anomalies” – still more evidence for a genetic basis for the disorder. These MPAs include low set ears, wide set eyes, the tilt of the eyes, the shape of the ear, the shape of the eyelid. These all occur early in fetal development.
“People with Down Syndrome – a genetic disorder – benefit from dietary changes???? Yes, Mr. Thomas D. Taylor, they do….”
Diets for those with Downs Syndrome is important for many reasons, and it may improve even IQ but for either autism or Down Syndrome, they will always have those disorders. That is the most important thing to remember.
Both disorders consist more than just the level of IQ either may have. Those with Asperger’s have typical to above IQ’s as well.
for god’s sake lets call all these ‘diseases’ what they are..’poisonings’ mostly mercury and lead…which have been labelled with yet another ‘greative’ tag for the big business we call healthcare. it’s plain common sense and people are suffering for it!!!!!!!!!