Aspies For Freedom

Well, at least it's not likely that it will kill anybody. The deaths from chelation were caused by intravenous drugs. And it will be interesting to know what the outcome of these trials will be.

Well I am more hopeful that they will prove this to be a fraud, and slap a ban on it or at least stop people from paying for it.

I think it will be more likely to show whether any improvements are coincidence than individual parents' experiences with things like gluten free diet etc.

I believe it said that the drugs were going to be given orally. Meaning, not intravenously. If they'll use pills or liquids won't matter (with little kids it's not likely to be pills).

I suppose "chelation" is the logical outcome of what I call The Poisoned Child Theory. At heart it is a return to the pre-scientific medical notion  of purging - of bats' wings and powdered rhino horn - an artifact of private medical (mal)practice.

To believe The Posioned Child Theory in its several forms (MMR, thimerosal etc) you have to believe the impossible. That a child intolerant to thimerosal will be two and half times more likely to have a grand parent who is an engineer than neurotypical children....  

Down with Chelation! Down with Judge Rottenberg's electric torture! Down with Applied Behavioural Doo-Da!

Stella

I agree, BUT you have to consider that the kinds of parents submitting their children for such treatments as a study are probably the same kinds of parents who would do so anyway.

If it has to happen, isn't it more sensible if it is done under medical suprvision (which it isn't when done by quacks), and in a proper study that will hopefully prove that this is a fraud, and hopefully (and IF it is dangerous, and IF it doesn't work, then what best to prove it than a medical study?) lead to legal repercussions, decrease in interest or at least better regulations of such treatments in future?

I.e. these parents would most likely choose chelation anyway, wouldn't you rather they were the last to do so? Does that make sense?

That is well possible, however I do feel that if sufficient evidence can be gathered that this method is useless or even harmful, then there surely is more likelihood of treatments being stopped than without these official trials?

At the moment, all parents have to go on Re: chelation is what the quacks tell them, i.e. it's the bee's knees and cures autism, they only have the stats of people who WANT them to pay for chelation to go on!

At least if major trials prove there is no benefit or even harm to these treatments, this is more likely to make it into the media and provide a contrast to the false advertising that provides the only publicity for chelation at the moment. If there is a choice between

a) Parents only getting to hear the side of the story propagated by those advocating chelation and
b) Parents getting to hear - through the media, statistics and descriptions in books on autism, doctors etc. - factual information about the uselessness of these treatments

then I know which one I would prefer.

I would be very interested in hearing your suggestions for stopping such attempts to "cure" autism by dubious methods, since you seem to think clinical trials will make this worse. IMHO spreading awareness of the inefficiency of such methods, and of the natural progress of development that occurs in autism, is better than just sitting at home fuming about how stupid everyone else is!

I did not say a death cannot occur under medical supervision, I said I felt it was safer to do treatments under medical supervision. That doesn't mean no harm can be done of course, but it seems to me that anything happening under this supervision is more likely to be investigated (who knows how many children come to harm without being under medical supervision - perhaps it just gets swept under the carpet more easily?).

In addition, regular checkups as they are usually done in such studies seem to me to make it more likely that any deterioration is caught out as early as possible, and it is more likely that doctors will put a stop to a treatment that way. Parents who have 'secretly' done an alternative treatment may be reluctant to give full details of what went on when prompted by the doctors if they have to take their child to hospital as well.

Thanks for that - that is also the impression I got from reading parents' messages on ASD forums. Study results and negative reports about quacks tend to make their rounds pretty quickly, in my experience.

Noetic wrote

Noetic, you just can't seem to stop yourself from making fanciful assumptins about my emotional state.  :?

I can't see why any innovative solution to the problem of parents authorising chelation "therapy" for unproven mercury poisoning is required. It is my understanding that this application of chelation is not FDA approved, and is thus I presume an off-label use of the chelating drug. If the US government (or any other government) had any integrity it would closely monitor any off-label uses of pharmaceutical drugs, and charge practitioners who prescribe off-label if there is a reason to believe such uses pose unacceptable risks. for years doctors all over the world have been operating in a legal twilight-zone by prescribing off-label. It's high time something was done about this. Encouraging off-label prescription is one of the methods used by drug companies to drum-up popular pressure on drug regulators to approve new drugs. There will always be some patients who believe some new drug that they are taking is a miracle cure, and their testimonials are like gold for the drug company PR people.

I myself was once prescribed a neuroleptic drug, in a moderate dose, while I was preganant, by an Australian obstetrician. There is every reason to believe that this drug could have had permanent harmful effects on the nervous system of my foetus and on mine as well. I threw the prescription away. There was no compelling reason to prescribe this particular drug or any neuroleptic drug, and a proper medical investigation was not made into the prosaic physical symptoms that I had complained about. This drug was not licenced for use during pregnancy. It was an off-label prescription. If I had thought it would have made any difference I would have made an official complaint.

Oh...kay? I am not sure what this refers to. None of my post was meant to be "fanciful" nor was I particularly referring to you (other than in addressing your views and points you made).

It is, as far as I can tell - however as long as there are no official, well-publicised studies done on the subject, the only information "out there" (widely available to parents etc.) will remain to be that propagated by those trying to sell this treatment.

That is awful - it is a shame you did not pursue this, as cases like this can well lead to the dismissal of such quacks in the medical profession.

I wouldn't dream of authorising the use of any off-label drug on any of my kids, unless they were on death's door and no other treatment was available. All educated parents have the choice of thinking for themselves.

That is true - unfortunately, at the moment the only materials to educate themselves with are mainly those provided by people trying to sell chelation.

In addition, it seems, from what I've seen particularly on German and US based ASD forums, that a lot of people who show interest in this kind of treatment are generally "anti-medication" (i.e. the same kind of folks who pin their hopes on supplements and other mumbo jumbo).

And as far as I'm aware lots of these kinds of supplements and "natural remedies" are not FDA-approved either. Therefore, perhaps the kinds of people who do tend to show interest in chelation and the likes tend to go for non-approved methods anyway, so the fact that it currently counts as "alternative medicine" may well contribute to their decision, which is another reason why I think pulling it into the "official" spotlight might open their eyes as to what is actually being done to their kids. (Especially since it's anything but natural!)

Not necessarily that they feel it is "natural", but I have noticed that those who tend to go "OMG look what I found, this sounds great" or "Mercury has made our chidlren autistic!" are also very frequently the kinds of people who buy up every supplement under the sun that has any remote association with 'curing' autism.

Those who force-feed their children fish oils (not in capsule form but the smelly stuff), algae extracts and other stuff not because it makes sense (Omega 3 does to some degree but not in the form they are waffling on about) but often just because they "heard somewhere" or "were told" it was supposed to help against autism. And those who jump for every new "alternative" treatment they hear about.

That's just the kind of people who tend to go on about things like chelation and mercury - I mean if you think about it, the process of chelation is not natural but neither is mercury in the body, so perhaps to them it still counts as "natural" because it's about detoxing the body?

Noetic makes a very important point concerning The Poisoned Child Theory.  

The widespread anxiety about the possible futures of mankind manifests as a fear of being physically poisoned by pesticides, pollutants, genetic modification, unnatural radiation and so on, recklessly or even deliberately released by governments and multi-national corporations over which the individual  has no control.

The child must therefore be de-toxified to rid it of the corruption which the parents see all around them in whichever direction they look.

The Poisoned Child Theory has the emotional benefit of transferring responsibility for the child's behaviour away from the parents and into the sinister activities of corporations, politicians, and profiteers, from whom damages may be claimed and compensation demanded.

Moreover, the idea of poisoning carries within it the idea of an antidote, that is to say, a cure - or reversion to a previous state of normalcy- so The Poisoned Child Theory emerges as an artifact of wishful thinking.

Stella

Amy, the horse manure swindle sounds like a variation of the untested pig extract (secretin?) that doctor who was imprisoned for fraud was giving ASDs here in England.

Stella