Aspies For Freedom

Amy, a ban on chelation is not the answer. Who knows why this poor boy died of it, or if other factors played a role. I disagree on all this chelation to 'cure' autism (it would only help those kids who truly are poisoned, which means it isn't really autism anyway).

But chelation therapy, if administered by somebody who knows what he is doing, and who is not doing it just to make a ton of money, has helped many people. You want to throw out the baby with the bath water (meaning you want to get rid of something beneficial, because it caused harm in one case).

Then you have to ban acetaminophen, because it can cause liver failure. You have to get rid of aspirin, because it causes stomach ulcers and bleeding. You have to ban everything anybody is allergic to, because it might kill one person (we'd have nothing left to eat in that case), especially Penicillin, because it has killed people who are allergic to it (while saving the lives of millions who are not). You'd have to stop living, since driving, crossing the road, walking down the stairs are all dangerous and potentially deadly. And the list is endless!

So, I won't sign the petition, because I consider it ludicrous. I think it's horrible the boy died. But banning chelation won't bring him back. And banning chelation potentially will CAUSE deaths, because it has helped people who were seriously ill.

Amy, I know we have a very basic disagreement. I believe that true autism, which is genetic, is not caused by vaccines, which includes (but that's not the only poison in vaccines) mercury. But I also believe that many people who have been diagnosed as autistic aren't truly autistic, but have sustained brain damage from vaccines. Sometimes it appears to be reversible by removing the toxins from the body.

Therefore, if toxicity can be proven, chelation therapy could reverse the damage, and make the child normal again. Provided it is administered by a good doctor who is proven to know what he is doing.

Of course, first toxicity should be proven by somebody trained in diagnosing it. If it cannot be proven, then chelation won't help anyway, and shouldn't be done.

Therefore parents should be very careful with treatment (and that goes for any illness or problem, not just autism caused by poisoning). Unfortunately, all these quacks will claim that chelation can 'heal' any autistic child, since all autism is caused by vaccines. That is dangerous nonsense.

I blame the parents here, who don't inform themselves properly and risk a kid's life for something that isn't proven to help. If parents wouldn't be so desperate to 'cure' their kids at all cost, these things wouldn't happen, and quacks wouldn't have a chance.

A)How are you judging a 'good' doctor? The term is very vague, and I'm not sure I would want to wait until I'm halfway under chelation to find out
B)One death is way too many, it's a very simple timeline. He lives-he goes on chelation-he dies. There is a connection
C)Most NT's with autistic children are morons. They just want their kids "cured" of this "disease". They won't pay attention to how safe it is

I think the main point is, too many of these drs. and media scare parents into 'quack' medicines and stuff that isn't thoroughly tested long term especially with children and parents buy into it too fast while being reassured by these DAN! drs. and such that it's safe and the child will get 'recovered'. I'm a firm believer that 'true' autism is genetic based but that doesn't mean there isn't an environmental issue that can't affect genetics in development of an embryo. What makes me skeptical is those that are complaining about mercury and vaccinations at the same time autism tends to be more noticeable in children between 18-36 months. Gee 18 months being the time it seems in the US that the MMR is given so it must be to blame right? I don't think that's the case myself.  I'm a big believer of if you wouldn't take a medicine/treatment that isn't proven by thorough study yourself, why the heck would you give a child with a much smaller body something that is high dosage vs. versions like chelation creams and such that are a much lower dosage and likely a lot more safer than the IV high doses? No I'm not a fan of chelation really period, in some people that aren't autistic, it may be useful with extremely careful supervision by a person that knows what the heck they are doing but to an autistic that may or may not understand or have a choice in the matter especially with children, why take that risk unless they are showing signs of mercury poisoning or such that aren't autistic-like? It makes no sense to me.

I've been bashed by NT parents for not getting my son mercury tested and all, I don't feel the need.

I would say yes if it is posing serious health risks that could risk a person's life. And there are a lot of symptoms of mercury poisoning many of these DAN drs, NT parents and such are dismissing that aren't autism-like that I have yet to hear any NT parent on the autism boards complain about... I find that strange of course you got these groups like "Generation Rescue" that are proporting dangerous myths that autism doesn't exist, that we all are somewhere on the spectrum of mercury poisioning.

You should check out their site sometime, it's rather appalling.

I agree with you there. Since you are on the spectrum yourself, in my opinion it's fairly obvious that it's genetic. And your son isn't low functioning, anyway.

I'd be suspicious in cases where there is no autism (AS or Kanner) anywhere in either parent's family (undiagnosed or not), the child was perfectly normal, learning to speak, outgoing etc., and suddenly loses his speech, stops walking, regresses in general in all areas, and stops interacting with his world. In such a case I'd assume brain damage from some outside source.

The question seems to be for some on here - can mercury poisoning masquerade as autism. I have to say I'm amazed such a question would come up on here but be that as it may lets look at the symptoms of mercury poisoning.

There is possibly one thing on that list that might fit - speech disorder. And even that would be stretching the ASD diagnostic criteria a bit.

Mercury is a toxin, no doubt of that - but can it cause autism? No evidence of any kind has ever been forthcoming that thiomersal in vaccines causes autism.

There is so much you would need to explain, including 4 large international studies that show no link, the fact that autism affects 4 times as many boys as girls and yet mercury isn't gender specific, the fact that even when thiomersal was removed from vaccines in the UK, diagnosis continue as they were without any dropoff, the fact that a large study showed that during the height of the 90's (when thiomersoal was in constant use) rates did not increase significantly and the fact that historical incidences of mercury poisoning in children show symptoms vastly different than that of autism.

Without the link between mercury and autism, chelating ones children is pointless. And dangerous.

DMPS is known to cause liver failure and death as reported by the American Heart Association. The therapy that cause this boys death, EDTA was superceeded 30 years ago by DMSA and is only approved for lead poisoning. Further to that it contains known carciogenics which have resulted in rodents in test cases getting cancer.

The mainstream use of chelation is thought of as a last resort by Doctors. Using it on autistic kids without any trials as to its long term effects on autistics is irresponsible and wholly unnecessary.

Then surely independant and legally binding medical trials would be the thing to press for? I mean that would be the ultimate solution to closing this argument one way or another and it would force the professionals to take note. You could also ask for a moratorium on using chelation to treat Autism while the trials were being carried out.

I on the other hand trust everything thats is verifiable and easy to check for onesself. This applies to everything on Quackwatch's site.

Alternative medicine is seeing an easy field to make a quick killing in in the field of autism treatment. Thankfully people like Stephen Barrett exist to pull them up on their misinformation.

I've been able to find fault with information given out by Quackwatch without any effort at all. I once read advice on Quackwatch that no one needs mineral supplements in their diet. This isn't true. In some parts of Europe there are recognised iodine deficiencies in soil used to grow food, so iodine supplementation from sources such as iodised salt is definitely advisable, as iodine deficiency has serious effects. I believe Quackwatch is a bit extreme, but I still find it heaps more credible than the alternative medicine crowd.

Betwixt, have you ever been tested, by a real doctor, with real tests, to see if you have coeliac? You have had chronic bad health and you claim to be undernourished, so that's why I was wondering.

My health is declining as I get older too, and that is true of at least one other aspies who I know who has also not had a normally functioning immune system for their entire adult life. I believe immune problems often go with autism/AS, and they don't improve with age. People can develop new allergies right up to old age.

My advice; don't be alienated from science-based, evidence-based medicine just because many doctors do a lousy job of practicing it and the drug companies dominate it in a corrupt manner. The basic idea of scientific medicine is sound.

This was something that I read years ago at Quackwatch, and I did complain about it.

Quackwatch isn't the kind of site that I look at much because it is pretty much "preaching to the converted" in my case. I never had any time for the stuff that they criticise on Quackwatch anyway.

Betwixt, have you actually been tested for mercury levels by a credible medical laboratory? I have heard that some of the private labs that do mercury testing promoted by the quack networks never give negative results for samples.

It isn't actually true that gastro bugs from swimming pools are never traced. My kids all got gastro after doing swimming lessons. One was so unwell that they doctor ordered fecal tests, which showed a pathogen that can infest public swimming pools. We later got two phone calls with detailed questions from the Health Department. The infrastructure of conventional medicine does actually work sometimes, when there is a geuine health hazard.

Betwixt wrote

Well, there is such a thing as a control group, but it isn't what you seem to think it is. A control group is supposed to be as similar as possible to the treatment group as possible except it does not get the treatment, or the active ingredient in the treatment. A control group doesn't need to be isolated from all causal factors, it just needs to be a good representation of what the treatment group would be if not for the treatment, so that the effect (or lack of effect) of the treatment can be seen as clearly as possible. Blinded randomisation is done to eliminate the possibility of any kind of bias affecting which subjects go into the control or treatment group. If a certain kind of subject tends to be chosen for either group, that might cause a bias that might affect the result.

Betwixt, you say you have "heavy metal toxicity". Which heavy metal or metals? Lead, cadmium, mercury, which? I know that lead is eventually stored in the bones and teeth as the body's way of taking it out of circulation. Are all of the heavy metals treated in this way by the body? Can all heavy metals be meaningfully tested for in one test? Were you tested for different metals separately with different tests?

Betwixt, no one self-selects to the control group or the treatment grooup in any credible controlled randomised trial. That's what randomisation is all about. Surveys or trials that enrol subjects by self-selection are not scientifically credible, but that doesn't stop some Mickey Mouse Australian universities from funding such pointless research projects. Self-selected subjects are often a biased sample. Trails and studies don't all need to be representative of the entire population, in fact in some trials this isn't a feasable or sensible goal. You don't have to test a cholesterol-lowering drug on healthy children, for example.

You seriously believe that a naturopath/nutritionist is able to do a gene test? Did you receive something in writing detailing the results of this test, that you could take to a real doctor or geneticist to ask their opinion of it?

I have read that lead is the only heavy metal that the FDA approves chelation therapy for. It seems reasonable to me that this could be because lead behaves differently to other metals in the body. Lead can be tested for by real labs by a blood test, or for exposure in very young children, in the baby teeth.