Excellent News Article on “Alternative” Autism Treatments
November 22nd, 2009
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Autism has become a lightning rod for bad science in recent years. Claims from various dishonest or misinformed individuals have lead to parents rejecting vaccines over autism concerns or to children being given a variety of bizarre and unproven products.
Some time ago, I wrote a blog post about some of the more extreme treatments for autism and what they can put a child through. This is really an issue that has gotten nowhere near the attention which it should. Children with autism don’t have it easy to begin with, and as they struggle to adapt and develop socially, they are routinely subjected to procedures as unpleasant as chelation therapy, which not only poses several major risks to health, but involves long sessions with an IV and chemicals that can make one feel very sick and lethargic. They are also routinely locked for hours on end in small hyperbolic chambers, force-fed charcoal tablets, stuck with acupuncture needles and denied foods and activities that most children enjoy.
It’s not hard to imagine that any child, even one without autism, might end up with some very profound social issues if subjected to these torturous procedures by their own parents. It turns the idea of parents being trusted protectors upside down and introduces untold discomfort, stress and fear.
Autism treatments: Risky alternative therapies have little basis in science
By Trine Tsouderos and Patricia Callahan | Chicago Tribune
James Coman’s son has an unusual skill. The 7-year-old, his father says, can swallow six pills at once.
Diagnosed with autism as a toddler, the Chicago boy had been placed on an intense regimen of supplements and medications aimed at treating the disorder.
Besides taking many pills, the boy was injected with vitamin B12 and received intravenous infusions of a drug used to leach mercury and other metals from the body. He took megadoses of vitamin C, a hormone and a drug that suppresses testosterone.
This complex treatment regimen — documented in court records as part of a bitter custody battle between Coman, who opposes the therapies, and his wife — may sound unusual, but it isn’t.
Thousands of U.S. children undergo these therapies and many more at the urging of physicians who say they can successfully treat, or “recover,” children with autism, a disorder most physicians and scientists say they cannot yet explain or cure.
But after reviewing thousands of pages of court documents and scientific studies and interviewing top researchers in the field, the Tribune found that many of these treatments amount to uncontrolled experiments on vulnerable children.
The therapies often go beyond harmless New Age folly, the investigation found. Many are unproven and risky, based on scientific research that is flawed, preliminary or misconstrued.
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Studies have shown that up to three-quarters of families with children with autism try alternative treatments, which insurance does not usually cover. Doctors, many linked to the influential group Defeat Autism Now!, promote the therapies online, in books and at conferences.
Intensive regimens are so common that one doctor recently joked at an Autism One conference in Chicago that “you know you have a child with autism if … your child takes more pills than your grandmother.”
The Tribune found children undergoing daylong infusions of a blood product that carries the risk of kidney failure and anaphylactic shock. Researchers in the field emphatically warn that the therapy should not be used to treat autism.
Children are repeatedly encased in pressurized oxygen chambers normally used after scuba diving accidents, at a cost of thousands of dollars. This unproven therapy is meant to reduce inflammation that experts say is little understood and may even be beneficial.
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Doctors associated with the autism recovery movement often say they know that more research is needed on their treatments, but they can’t wait because children need help now.
“We feel some urgency that we can’t wait for 10 or 20 years,” pediatrician Dr. Elizabeth Mumper, medical coordinator for the Autism Research Institute, testified in a special federal court that examined the issue of autism and vaccines. The nonprofit institute is the parent organization of Defeat Autism Now!
Other physicians — as well as scientists and bioethicists — disagree.
“They really should be seeing treatment of patients with unproven therapies as dangerous experimentation,” said pediatrician Dr. Steven Goodman, a clinical trial expert at the Johns Hopkins Berman Institute of Bioethics. “The problem with uncontrolled experiments … is that it is experimentation from which we can learn nothing.”
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The scientists who testified sharply criticized the research behind alternative treatments, using words like “careless” and “misleading.”
“So much of what’s said doesn’t make scientific sense,” testified Dr. Robert Rust, a chaired professor of neurology at University of Virginia. “There is what I regard as cherry-picking, picking little pieces from the paper and ignoring the rest of it, and in some instances I think misrepresenting what the paper says.”
Mailman, the Pennsylvania neuropharmacologist, who also testified, said in an e-mail that “it was the scientific offensiveness that I felt most keenly.”
The scientists found no proven value in many specific therapies for autism, from sauna treatments to chelation to the ingestion of worm eggs.
“There is no evidence for ( the treatments’ ) efficacy, no evidence for the reason for them to work,” testified Dr. Eric Fombonne, head of the division of child psychiatry at McGill University and a prominent autism expert. “There (are) no published studies which would suggest that (they) would change the course of autism.”
Notably, Arranga’s list included studies authored by Dr. Mark Geier, a geneticist, and his son, David Geier. Dr. Geier opened clinics across the U.S. that promote treatment of autism with Lupron, a powerful testosterone suppressor. When the Tribune profiled the Geiers earlier this year, top pediatric endocrinologists deemed their work to be baseless.
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Colten went “berserk” after being given a chelator, according to a nurse whose notes were cited in court records. He also had incontinence, night sweats, headaches and back pain. Bradstreet testified that the boy did not do well with chelation but later said it is “impossible to know” what caused the problems.
In her decision, Vowell sharply criticized Bradstreet: “The more disturbing question is why chelation was performed at all, in view of the normal levels of mercury found in the hair, blood and urine, its apparent lack of efficacy in treating Colten’s symptoms and the adverse side effects it apparently caused.”
Pediatric toxicology experts say all chelation drugs carry risks — even when used to treat severely lead-poisoned children. Treatment with the medication is carefully monitored, as some drugs can dangerously deplete the body of essential metals, toxicologists said.
When rats with no lead exposure were treated with succimer, a common chelator given to children with autism, the animals showed lasting impairments of cognitive function and emotional regulation, said the study’s lead researcher, Dr. Barbara Strupp at Cornell University
Strupp said that finding raises concerns about administering chelators to children with autism unless they clearly have elevated levels of heavy metals. “I was just astounded and concerned for these kids,” she said..
I have posted only a few snippets and I strongly suggest going to Autism News to read the entire story. It is telling and disturbing. In addition to having very unpleasant side effects, such as night sweats, nausea and body pain, treatments like chelation are quite dangerous, even when given under the best conditions. Chelation is the use of binding agents to flush heavy metals from the body. Due to its side effects and dangers, it is normally reserved for treatment of patients who have had severe exposure to mercury, lead or arsenic. In these cases, it is vital that the material be rapidly removed from the body and therefore, extreme measures like chelation may be necessary.
The use of Lupron for autism is something I had not been aware of previously, but it appears that it is not entirely uncommon. The drug is a very powerful hormone suppressant. It works directly on the pituitary gland and results in the suppression of the hormones that trigger the release of sex hormones, especially testosterone. It has been used as a treatment for reducing the growth rate of prostate cancers and to treat certain individuals with hormonal imbalances. When used on a healthy male, Lupron results in a form of chemical castration. It shuts down the production of testosterone, and if given to a child or adolescent can result in the suppression of puberty. The effects of this can be life-long and dire. In addition to a lifetime of sexual dysfunction, puberty in males includes a number of important developmental changes, ranging from increases in bone density and muscle development and changes in metabolism.
These procedures go beyond the bounds of simple “bad science.” They are morally and ethically reprehensible and so are those who promote them.
This entry was posted on Sunday, November 22nd, 2009 at 1:56 pm and is filed under Bad Science, Not Even Wrong, Quackery. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
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November 22nd, 2009 at 4:01 pm
Many of the parents of autistic children who are involved in “alternative” treatments mention that they were told by the diagnosing physician that “nothing can be done” about their child’s conditions. Whether or not their recollection of the discussion is accurate, their perception is that “mainstream” medicine didn’t offer “answers” that were satisfactory to them. All too often, the “alternative” practitioners have the “answers” these parents are looking for. The problem is that the “answers” aren’t correct. Indeed, foisting make-believe therapies upon trusting children is the height of betrayal presuming to call themselves a parent.
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November 22nd, 2009 at 4:56 pm
“changes in metabolism”? That’s something I could have done without. It used to be so easy to stay slim…
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November 22nd, 2009 at 5:24 pm
This world is full of con men and charlatans preying on family tragedies and on those who are too weak to defend themselves.
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November 22nd, 2009 at 6:03 pm
[Other] Matthew said:
I’m not so sure you’d want that. I don’t mean changing in whole body metabolism of calories, but rather how the body distributes metabolism, where calories go, how muscles are built etc. The body continues to grow, but it keeps producing what amounts to “baby fat” which is deposited in a non-uniform manner that results in a clumpy-rolled-chubby kind of shape. Puberty normally initiates a change in growth patterns – the arms and legs start to grow more slowly and there is more growth in the torso. Delayed puberty commonly results in disproportionate growth, where a person has long gangly arms and legs.
These days, if a male does not show even early signs of puberty by age 14 or 15, they’re treated with hormones to avoid these unpleasant effects – many of which are not reversible even if they do hit puberty much later.
Here’s a graphic: (might not be safe for work, but it’s not meant to be dirty – it’s clinical): http://www.netterimages.com/image/12624.htm
That said, I could see how someone could be tricked into thinking the use of hormone suppressors is somehow “helping” the situation with someone with autism. After all, puberty is often characterized by mood swings and difficulties caused by hormones. Thus on the surface, the fact that they’re not dealing with mood swings, a crazy libido, a pimply face and the other things that go along with it, might seem like a good thing. It really is not!
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November 22nd, 2009 at 10:17 pm
Ummm, so, are complaints filed with the appropriate medical ethics boards? How can the doctors who prescribe these chelation treatments keep their medical licenses?
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November 22nd, 2009 at 10:25 pm
ruidh said:
By the simple expediency of not having one to begin with.
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November 22nd, 2009 at 10:29 pm
ruidh said:
They have a lot of support. People who go for this stuff generally do not report them and if they are reported, many people are going to line up to say how the big pharma companies are behind it.
It’s not just that. They justify the use of chelation by preforming tests that for mercury that inevitably come back “positive.” It’s bogus, however. Anyone will test positive for mercury if you use a sensitive enough test. Mercury can be measured down to a fraction of a part per billion.
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November 23rd, 2009 at 1:57 am
I often think that our ability to analyze and detect chemicals has advanced faster than the average person’s ability to put it in perspective. I constantly hear that children are testing positive for X or that X chemical is now found in drinking water, when in fact the quantity they are talking about is a few molecules. It is an impressive example of analytical chemistry that we can even measure that using standard and reasonably avaliable tests, but beyond that, it means very little in most circumstances.
People will panic anyway.
On the topic of the post: some of the things listed in the article should be classified as child abuse. No child’s social and emotional development can be aided by such torture.
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November 23rd, 2009 at 3:04 am
anyone that has eaten shellfish will test positive for mercury. it bio accumulates in shellfish. and to an even greater degree in predatory fish.
fact is. seafood is the number 1 source of mercury for humans. a chilling thought that. because mercury poisoning is quite common in cultures that uses seafood as a primary protein source in their diet.
however. i have never seen a study correlating fish intake with autism. or any other developmental disorder for that matter,
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November 23rd, 2009 at 4:07 am
The second installment of the series is up
Autism treatment: Science hijacked to support alternative therapies, Researchers’ fears about misuse of their work come true
http://www.chicagotribune.com/health/chi-autism-science-nov23,0,6519404,full.story
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Pardo’s study is just one example. In May, the Tribune reported on another questionable use of research. A geneticist and his son who promoted treating children who have autism with a testosterone inhibitor had based their protocol, in part, on the work of Simon Baron-Cohen, a psychopathologist at England’s University of Cambridge who has explored the role of the hormone in autism.
Yet Baron-Cohen told the Tribune that the idea of using the drug this way “fills me with horror.”
Pardo said that since his paper came out he has received many questions about unproven autism treatments. He is particularly haunted by inquiries regarding powerful immunosuppressant drugs usually used on organ transplant patients, calling the idea “completely wrong.”
Said the researcher: “People are abusing science for the treatment of autism.”
As I often do for stories of this type, I’m keeping a running list or index of pro- and con- blog posts. This one’s on the list.
The list is here
http://lizditz.typepad.com/i_speak_of_dreams/2009/11/the-unethical-treatments-that-autism-is-vaccine-injury-and-other-false-premises-gives-rise-to.html
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November 23rd, 2009 at 9:05 am
Liz Ditz said:
I was going to start off with an expletive of some kind but I can’t think of one strong enough. Immunosuppressant drugs? If there is any class of drugs known for having horrible side effects. Increased risk of cancer, very dramatic rise in infection.. Some of the effects are analogous to late stage AIDS.
That and chemical castration to treat a social/emotional development condition.
The words “fills me with horror” are appropriate. Any sane person should be filled with horror.
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November 23rd, 2009 at 5:09 pm
immunosuppressants used for organ transplant?
Jesus Christ! What’s next? Chemotherapy and amputating all their limbs.
I assume everyone here has some idea what those drugs do to you. That’s child abuse. Not just that, it’s torture!
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November 24th, 2009 at 3:41 am
It is very well known that mercury is a trigger for autism and the shameful companies still refuse to say so because they would be sued. Mercury is not mostly gone from vaccines and other sources but why is there still autism? The reason is that it is not just mercury. Mercury is only one of the toxins that triggers autism and only one of the toxins in vaccines. The new number 1 problem is aluminum. Aluminum is found in vaccines and many other products like drugs and deodorants and even baby powders!
Companies are selling aluminum in bake-ware, in aluminum foil that we are supposed to put on food and on many products that are in contact with food.
Autism has been called “a novel kind of mercury poisoning” but really, it is a novel form of metal poisoning in general, and that can be mercury, aluminum or any of the others in vaccines and other toxic products that are given to children. Gluten plays a big role too. Gluten is not a natural part of diet, despite the lies to the contrary. Gluten opens up the intestinal wall and this is why even avoiding vaccines can not help all the time. Open the intestinal wall and the aluminum or mercury or MSG or aspartame or whatever else the toxin might be goes right through into the blood.
Another big factor: WIFI and 3G phones. They produce signals that pulsate at a frequency that energizes the molecules and causes them to become embeded in cells like brain cells that they can’t get out. EMF opens up the blood-brain barrier and lets toxins in, but they have no way out. Detoxification can help, but first, get rid of the problem. Detoxification can’t help if more toxins are just going to replace the old ones.
Good information:
http://www.toxicfreelegacy.org/
http://www.ewg.org/
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November 24th, 2009 at 12:43 pm
drbuzz0 @ 7 says:
It’s not just that. They justify the use of chelation by preforming tests that for mercury that inevitably come back “positive.” It’s bogus, however. Anyone will test positive for mercury if you use a sensitive enough test. Mercury can be measured down to a fraction of a part per billion.
It’s worse than that: they’re using standard tests, with standard baselines, for detecting mercury overdoses. But instead of using plain old urine, like you’re supposed to do, they give the kids a chelating agent ahead of time and then collect the urine. They call this a “provoked” mercury screen. It virtually guarantees that the child’s urine mercury levels will exceed the normal baseline. The scammers try to justify this, saying that the provoked testing is needed to flush out “hidden stores” of mercury. But they don’t even try to find out what a normal baseline for a provoked urine test is! It’s a huge scam.
Lisa @ 13:
I’m guessing you haven’t visited this blog before, if you’re going to ramp up the RF woo. This blog has spent a significant amount of time debunking the claim that radio sources such as WiFi, cell phones, etc are harmful.
I’m also amazed at how scatter-shot your “theory” of autism is. Is there anything that’s *not* a factor for autism? It is true that all autistic people have mercury in their bodies. This is because all people, period, have mercury in their bodies. The only people who describe autism as “a novel kind of mercury poisoning” are people who do not study toxicology and do not know what mercury poisoning actually looks like. Most are well-meaning but closed-minded types, who are not interested in learning the truth because they think they already know it. A few are actual frauds.
Did you know that aluminum is one of the most common elements on Earth? (It’s #13 in abundance, more common than essential elements like iron and calcium.) Good luck excluding that from your diet.
Gluten is not a natural part of our diet? Ah. I guess that explains why humans have been eating it for over 10,000 years, and why it is the protein most closely linked with the rise of human civilization.
“Opens up the intestinal wall”? Gluten does no such thing. Celiac disease (which is not an allergy, but a different sort of autoimmune problem) can damage the intestines so badly they eventually die and rupture, but that’s quite a bit more extreme than the “leaky gut” alleged by the autism quacks. Truthfully, if you have celiac disease, you won’t absorb more nutrients than a normal person. You’ll absorb less. Indeed, the first symptom is often malnutrition despite adequate dietary intake.
EMF opens up the blood-brain barrier? That’s a new one. Usually, the woo-woos claim it either microwaves the brain tissue or causes mutations. I haven’t heard a claim that radio “opens up the blood-brain barrier”. If true, it’s odd that we haven’t seen a vast increase in alcohol-related deaths, since most people use cell phones these days, and opening up the blood brain barrier would increase intoxication. Yet baseline information on alcohol intoxication created decades ago is still valid. Odd, that.
Or maybe you just don’t have any idea what you’re talking about.
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November 24th, 2009 at 12:52 pm
Regarding gluten not being a natural part of the diet, here’s this from Wikipedia’s article on the history of agriculture:
There is earlier evidence for use of wild cereals: anthropological and archaeological evidence from sites across Southwest Asia and North Africa indicate use of wild grain (e.g., from the ca. 20,000 BC site of Ohalo II in Israel, many Natufian sites in the Levant and from sites along the Nile in the 10th millennium BC). There is even evidence of planned cultivation and trait selection: grains of rye with domestic traits have been recovered from Epi-Palaeolithic (10,000+ BC) contexts at Abu Hureyra in Syria, but this appears to be a localised phenomenon resulting from cultivation of stands of wild rye, rather than a definitive step towards domestication. It isn’t until after 9,500 BC that the eight so-called founder crops of agriculture appear: first emmer and einkorn wheat, then hulled barley, peas, lentils, bitter vetch, chick peas and flax. These eight crops occur more or less simultaneously on PPNB sites in the Levant, although the consensus is that wheat was the first to be sown and harvested on a significant scale.
Notably, most of the crops listed in that section are off-limits to people with celiac disease. Note also that this discusses when the crops were domesticated; they were certainly used prior to domestication, or nobody would’ve thought to domesticate them. Indeed, there is archeological evidence that people were gathering wild emmer wheat 17,500 years ago. They just didn’t know how to cultivate it yet.
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November 24th, 2009 at 12:59 pm
Calli Arcale said:
Actually it’s not – or at least not brand-new. I don’t remember which assclown cooked it up, it was Carlo or Hardell or something, but their claim was that toxins enter the brain because EMF’s open the blood-brain barrier or that the RF radiation causes heavy metals to become embedded in cells or that the “cells can’t tell the difference between nutrients and toxins”
Something totally woo-woo like that. Complete bull, but Lisa is not the first to say this.
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November 24th, 2009 at 2:38 pm
Well, it’s new to me, anyway.
It surprised me, because I’ve been following the autism wackiness for some time. But I haven’t been following the RF wackiness like you have.
It’s certainly interesting. And about as plausible as homeopathy.
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November 24th, 2009 at 4:07 pm
Aside from the fact that glutin is a natural protein that has been eaten for thousands of years and is found in all wheat and wheat related plants, the aluminum thing makes no sense at all. Aluminum as a metal has been used in cookware and foil for almost a century and no ill effects have been observed. It’s not readilly absorbed and appears to be mostly inert in the human body.
Aluminum in the form of oxides is so common in the earth’s crust everyone is exposed to enormous amounts of it, and always has been through any number of natural materials including clays, soils and so on.
I am aware that in some narrow circumstances, aluminum in excessive amounts can compete with the absorption of calcium or can cause some other narrow problems when exposure is very very excessive. It was once theorized that it might be related to Alzheimers, as some of the plaques contained a large proportion of aluminum atoms, but research has not born this out and it is now thought that the plaques just have a tendency to accumulate aluminum ions and it’s not a causal factor.
There has been some talk for a long time about aluminum causing greater expression of estrogen-related traits and therefore things like breast cancer. That is based on some very narrow laboratory experiments with the effect of aluminum compounds on hormone receptors, but it’s very weak, even then and in the real world, extensive research has failed to find any empirical evidence of a connection.
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November 24th, 2009 at 6:58 pm
Not that there is even really any substantial amounts of aluminum in vaccines, but aluminum toxicity is 99% bull. It is true that in some isolated circumstances, some aluminum compounds do have a high enough uptake and retention to cause problems, but that is like “man bites dog” – it’s a very rare freak thing that you could end up with problematic aluminum levels. Even if it’s injected directly, the vaccines that have any aluminum compounds have it in microgram levels. Stop for a second and consider how common aluminum is in the enviornment. Even if it is not absorbed easily, everyone is exposed to huge amounts of it.
If you search for aluminum toxicity online you will find it is very popular in the “alternative” movement. It’s on every herbal woo-woo site you can think of. There is still no proof that it ever causes neurological problems in humans except in extraordinary circumstances.
On mercury: It is true that there will be some mercury in anyone’s body and chelation will up the levels in the urine (along with every other metal and many other things). You can’t ever hope to get mercury levels down to zero (if there is even any reason to) because mercury bearing minerals are common enough to make it present in almost any growing soil and in water at low levels. However, it could be lowered considerably because more than half of the biologically mobile mercury, which ends up accumulating in fish, dissolving in surface water and being inhaled by humans comes from coal burners.
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November 25th, 2009 at 10:13 am
Well.. that just adds more reasons to banning those filthy coal burners and replace them with something safe. like nuclear power.
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November 25th, 2009 at 10:26 am
For a while, the autism-is-mercury-poisoning crowd were using the increase in coal-fired power plants in China as an explanation for why the removal of thimerosal from nearly all vaccines had no effect whatsoever on the autism rate. They seem to have largely moved on from that now, and are instead blaming various other toxins du jour. The goofiest one I’ve heard about lately is gelatin.
Antice — if you want some good news (but unrelated to this thread), some significant political momentum has built up behind building new nuclear plants here in Minnesota. A large number of politicians want to overturn the statewide ban on nuke plants, on the basis that the ban resulted in a large increase in coal burning plants. It’s nice to see someone thinking about consequences for a change, but it’s a shame that it took the actual consequences to spur it on. I bet that the controversial proposed Big Stone Lake power plant (coal fired) had something to do with it. So far, the main opposition has actually not been environmental; it’s come from politicians who are concerned that rescinding the ban will a) not actually result in new nuclear plants and b) somehow make power companies raise prices without raising services. I’m not clear on how “b” is supposed to happen, which makes me suspect it’s just fearmongering (possibly from the power companies themselves, who, while they would benefit in the long run from a new plant, won’t benefit in the short run, the period in which their executives get their bonuses).
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December 6th, 2009 at 7:52 am
Hi my wife and I found your site very interesting. We thought we would share with you a patch that we have been using on our autistic daughter. It’s made an unbelievable difference in her attention span and behavior. It’s called Aura Patches and is not a chemical patch. Check them out @ http://www.internapure.com/Blog/2009/07/09/aura-patch-autism-protocol/ keep up the good work.
Darren N.
Atlanta, Ga.
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December 11th, 2009 at 2:15 pm
How sad. I am autistic, and am very lucky not to be one of those children who have to go through something as risky as this. I used to take chelation medicine (I called them mashed potato pills). Luckily I still lived. And luckily I did not have to face the risks of taking other medicines. You have just earned yourself a digg.
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