Article advocating dangerous treatment on autistic child

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Aaron_Mason
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26 Mar 2008, 11:26 pm

Marlinsgirl, I second that. Those were excellent responses, a true call for parents to wake up and smell the roses.

A lot of people have really hit the nail on the head. People who peddle these false therapies sell hope, playing on the fears of parents of autistic children. These come at great expense, not just to the parent's hip pocket, but to the child's development. If left unimpeded, I'm sure they would bounce back.

There is one thing parents *could* try to help the process of their autistic child's development. It works well with NT children - my gf's mum did it with her and she was teaching third grade kids how to read when she was in kindergarten. Reading to your child from the age of 3 or 6 months. I'd like to see how well it would work on autistic children.

That's what I hope I could achieve - at least one NT and one ASD child, to try this on. Nice and non-evasive, and you get results much quicker and heaps more ethical.

Or has someone beat me to it? I'd like to know. Still, I'd give it a shot.


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26 Mar 2008, 11:54 pm

zendell wrote:
A sensationalist story reported that one autistic kid died during chelation but the story was incorrect. The kid died because the doctor made a mistake and gave him the wrong drug.

The courts disagree, thankfully. The stupid tosser gave him the wrong drug on purpose. He'd been doing that for years, but it sadly took a death to find that out.

[quote[Randomized, double-blind, controlled study finds chelation with oral DMSA is safe and effective for treating autism:
http://www.autism.com/danwebcast/presen ... /adams.pdf[/quote]
That is a biased website full of misinformation.


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Aaron_Mason
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27 Mar 2008, 2:20 am

Zendell, you've been disregarding what people have been saying... chelation is intended as a treatment for people who have suffered large amounts of heavy metal poisoning. It was never intended for treatment of this kind, and ESPECIALLY not for this long. It will have negative effects on the child if used continually in the long run.


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zendell
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27 Mar 2008, 2:53 pm

Aaron_Mason wrote:
Zendell, you've been disregarding what people have been saying... chelation is intended as a treatment for people who have suffered large amounts of heavy metal poisoning. It was never intended for treatment of this kind, and ESPECIALLY not for this long. It will have negative effects on the child if used continually in the long run.


What's wrong with giving chelation to remove the thimerosal kids get from vaccines? They order tests and stop chelation when the mercury level is reduced. No one does chelation when there isn't any mercury. It's not just autism. Many people find that chelation helps treat other neurological problems other than autism. If the benefits exceed the risks, I see no reason to avoid it.



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27 Mar 2008, 3:00 pm

zendell wrote:
Aaron_Mason wrote:
Zendell, you've been disregarding what people have been saying... chelation is intended as a treatment for people who have suffered large amounts of heavy metal poisoning. It was never intended for treatment of this kind, and ESPECIALLY not for this long. It will have negative effects on the child if used continually in the long run.


What's wrong with giving chelation to remove the thimerosal kids get from vaccines?

Thimerosal, contrary to popular belief, does not accumulate in the body, and is always removed as waste.
Quote:
They order tests and stop chelation when the mercury level is reduced.

1. These tests are done improperly. Challenge tests are not a reliable indicator of mercury or any other heavy metal.
2. No, they don't.

Quote:
No one does chelation when there isn't any mercury.

Incorrect, unfortunately.

Quote:
It's not just autism. Many people find that chelation helps treat other neurological problems other than autism.

Where the hell did you read this crap?

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If the benefits exceed the risks, I see no reason to avoid it.

But they don't.


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alex
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27 Mar 2008, 4:35 pm

Good news guys. I spent about an hour talking with the reporter from the Chicago Tribune who wrote that blog post. She's going to be doing another blog post from the autistic perspective. And she also wants to do a news article in the Trbune about neurodiversity! 8)


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TLPG
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27 Mar 2008, 5:01 pm

Great news, Alex!

Zendell, the FDA have NOT approved the use of chelation to treat Autism. And I know of at least one person who has continued to use the treatment for at least three years (WAY too long - and on a child as well, and I'm not sure if chelation has even been approved for children no matter what by the FDA).



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27 Mar 2008, 5:02 pm

alex wrote:
Good news guys. I spent about an hour talking with the reporter from the Chicago Tribune who wrote that blog post. She's going to be doing another blog post from the autistic perspective. And she also wants to do a news article in the Trbune about neurodiversity! 8)


You get things done. Very admirable!


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27 Mar 2008, 8:08 pm

zendell wrote:
Randomized, double-blind, controlled study finds chelation with oral DMSA is safe and effective for treating autism:
http://www.autism.com/danwebcast/presen ... /adams.pdf


I have an interest in immunology and oxidation/methylation in the autism spectrum. However, upon reading through that article (which seems like an abbreviated report of the original article), I'd have to say that there is a potential extreme bias of the experimenters in that study.

My Critique, Point by Point:

1) This is supposed to be a double-blind study, implying that there is a control group. Yet in this article, they report no results on the controls. Therefore, the reader is unable to contrast and compare results between the two groups.

2) It gives no indication as per the ages of the participating children nor a listing of other medicinal and nonmedicinal treatments these children may or may not be receiving. Various medications do have effects on the body's oxidation. I would assume the control group was required to be medication-free. Also, if any were receiving behavioral treatments, this went unanswered. Any of these factors could be playing a part: natural development with age, medication, or other treatment plans which are taking place concurrently or prior to the study.

3) It also says this study is supposed to be a double-blind, but they don't mention how this takes place. It's probably not all that hard to tell the autistic kids from the nonautistic; were the experimenters aware of this so that it affected their judgment? Or was it truly a double-blind, where the lab technicians did the analysis separately from the researchers who were collecting and then analyzing the larger data sets? It doesn't say. So this does a poor job of outlining the methodology so that this study could be replicated in future.

No single study does a theory make: sets of studies are needed because, even if a study's design is sound, every once in awhile you're still going to receive a false positive result just by the laws of probability.

4) There is no mention as to how the participants were recruited and how they were chosen to take part. Medical establishments? Autism Speaks? CAN? Local churches? Where they all given the ADOS and any child who tested in the autism range was included? This is important because, without knowing WHERE the participants came from, there's no way to accurately judge that this was an unbiased sample.

5) 80 began the study, only 40 finished. Even though this is enough to resemble some sort of statistical normal distribution, 40 is still a very small number for these researchers to recommend glutathione as a treatment for autism.

6) It treats the fact that glutathione is designed as a heavy metal eliminator as a surprise ("What??? It actually chelates? Well shut my mouth..."). And without reporting the levels seen in the controls as far as elimination levels, it makes it seem as though only autism has such levels and, low and behold, glutathione is a chelator. It's a bit of tricky writing, implying that these levels are seen in autism alone.

7) The results of the study were compared to both parent impressions (general interview as well as ATEC) as well as the ADOS. I have two issues with this: a) yes, parents should be asked of their opinions; however, in such a study, more objective measures should be used and biased opinions avoided. The ADOS, I have personally learned, is an adequate tool for diagnosis of Autistic Disorder and PDD-NOS in young children. However, it is a poor tool for differentiating WITHIN the spectrum. Therefore, it should not have been used to detect a change in severity, especially when the shifts in severity were so subtle.

8) And with the ADOS, I would've liked to know who performed the first and the second ADOS. Were they the same people, potentially introducing bias? Or different people who might score the same child slightly differently?

9) Correlation between excretion levels and ADOS: This to me spoke MOUNTAINS. The most significant correlation between excretion levels and ADOS scores following the first dose was 0.36. For a little background on correlations, here are the ratings of correlations:

0.0-0.2 = no correlation
0.2-0.4 = low correlation (unlikely)
0.5-0.7 = moderate correlation
0.8-1.0 = high correlation

These occur in both positive and negative ranges, with negative numbers indicating a negative (or inverse) correlation. Most researchers ignore any correlations that aren't moderate or higher and view low correlations with suspicion.

Following the 9th dose, the highest correlation is 0.35 (another low correlation). Yet these results are espoused as being significant.

10) I have a big issue that the ADOS was not given BEFORE starting the study, so as to gather a baseline score before applying the treatment. Without a baseline, it is very difficult to compare the other two ADOS scores to each other.

11) I take issue with a study that uses a quote to make its conclusions-- a quote nonetheless originated by the leading researcher in this study: "Finding lead or mercury in an autism victim is like finding a bullet in a homicide victim-- further investigation needed for 100% certainty, but in both cases it is highly likely that one caused the other" (Adams, 2007).

Why is this a problem? Well, first off, it's clear that Adams has already made up his mind before even performing this study, which makes him a prime candidate for accidental or intentional experimenter bias. He also proposes that finding lead or mercury in autism is the guilty bullet having caused the conditions; and if that is his logic, then every child in their study should've been a "homicide victim" since every person, autistic or not, has mercury and lead in his/her body. On the same note of logic, that would also imply every person is autistic. :roll:

12) Before performing further replication studies, the researchers of this study are already recommending longer treatments for those whose lead levels were still "high". I.e., they're recommending a treatment before having tested whether it's sound and relatively risk-free but AT THE SAME TIME they continue to state that more research is needed before the treatment should be recommended. Double-talk.

13) From a single study, they have concluded there are no adverse side effects on general health.

14) Despite the low correlations, they even bolded their conclusions that higher excretion decreased severity as measured by the ADOS, using techniques like bolding or highlighting to make their point stick despite that it's a weak one.

15) Their final conclusions stated, "Glutathione, lead, and mercury are linked to severity in autism, and to improvement due to DMSA." This statement is false. There was no evidence in this study proffered that linked higher mercury and lead levels to their autism participants. And even if there were, the authors have automatically jumped that extra step and assumed correlation is equivalent to causation. (Who knows, if there are higher levels, it could be very well that autism is the CAUSE of higher levels of mercury and lead, rather than the reverse.)

16) The article gives no indication as to having been published in a peer-reviewed journal. I assume this means it hasn't been published except online by websites who support the research.

I don't mean to say that the only place for publication is in respected journals, no. What is important is the peer-reviewed process. So there is no such indication.

In essence, this was a poor study, with researchers who seem to have made up their minds before performing the research and whose bias, either accidentally or intentionally, affected the design of the study. Which is unfortunate. These are important questions that should have more definitive answers. Poor research only holds back the study of the autism spectrum. :?


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Kalister1
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01 Apr 2008, 5:56 pm

I think Ana54 is more dangerous than the treatment :?



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01 Apr 2008, 6:33 pm

Those blog comments just get me mad. They turn into "who can make the most ridiculous straw-man argument?" fests. Starting intense biomedical treatments at such a young age and then claiming that 3 years of that recovered your child? Autistic children have developmental delays, that doesn't mean they are brain dead. Of course a 2 year old autistic child can grow into a "normal" looking 5 year old. And it doesn't mean that parents that refuse behavioral therapies and/or biomed treatments "do nothing".
That stuff just tears me up.
I love my son and don't want him to experience needless pain and risks to his health. Yet, other autism parents will sniff at me and say, they do these things because "I love my child and would do anything for him." As if I'm some neglectful parent.

My son went from being classified as "severely autistic" at 2 1/2 to being at grade level by kindergarten. He still requires accomodations because he's still autistic. But he speaks at age level, attends 2nd grade with his age-peers and is getting more and more independent every day. No biomeds, no ABA, no GF/CF diets.

Alex, I understand your point about Eugenics but I would refrain from making references to Nazis. It's actually more relevant to point to America's much longer relationship with eugenics in reference to controlling "feeble" populations. I also think it's more important to remind ourselves just how recent eugenics laws affected us and how they still seem to control our perception about procreation and disability.



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01 Apr 2008, 7:04 pm

KimJ wrote:
Alex, I understand your point about Eugenics but I would refrain from making references to Nazis. It's actually more relevant to point to America's much longer relationship with eugenics in reference to controlling "feeble" populations. I also think it's more important to remind ourselves just how recent eugenics laws affected us and how they still seem to control our perception about procreation and disability.


Does that mean he should call them "Americans" rather than "Nazis"? ;) Is this what you're referring to, Kim? http://findarticles.com/p/articles/mi_q ... i_n9062193


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KimJ
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01 Apr 2008, 7:52 pm

No, I'm not saying refer to any "group" of eugenicists. I'm making the suggestion that Nazi references often shut off the conversation because they are seen as the "worst extreme". It's more poignant to discuss American eugenics in terms of "real world" prejudices, policies and laws. The Nazis were in power just over a decade? Eugenics in America started as legitimate policy around 1912 and the last state laws enforcing eugenics were repealed recently. The ideals behind eugenics still greatly influence us as a culture.



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01 Apr 2008, 8:12 pm

f**k you. That's all I have to say to that blog post.

You wish to "cure" me? From what? From being different?

Look around, look around. I'm rather content with my difference. It's so sad though, that those like us are labeled "defective" and treated as guinea pigs, all in order to solidify an ironically idiosyncratic view of what "we" should be.


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01 Apr 2008, 9:40 pm

KimJ wrote:
No, I'm not saying refer to any "group" of eugenicists. I'm making the suggestion that Nazi references often shut off the conversation because they are seen as the "worst extreme". It's more poignant to discuss American eugenics in terms of "real world" prejudices, policies and laws. The Nazis were in power just over a decade? Eugenics in America started as legitimate policy around 1912 and the last state laws enforcing eugenics were repealed recently. The ideals behind eugenics still greatly influence us as a culture.


Oh... well, that's sort of my point, Eugenics, whether performed by Nazis or by Americans come up to the same total: death of those not quite up to snuff.

All kidding aside, whereas using Nazi is sensationalist, it's altogether accurate, I think.


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01 Apr 2008, 10:16 pm

Quote:
Good news guys. I spent about an hour talking with the reporter from the Chicago Tribune who wrote that blog post. She's going to be doing another blog post from the autistic perspective. And she also wants to do a news article in the Trbune about neurodiversity!


Congratulations Alex! This is wonderful news!

Quote:
The voices of people with autism seem to be drowned out by an overwhelming perspective of parents who refuse to accept their children for who they are. The life of an autistic person is just as valuable as any other life and has just as much a right to be represented by the media.


I am a NT Mum of 3 sons (2 diagnosed with Asperger's, 3rd I think is Aspie and will seek diagnosis before he starts school) and I accept and cherish my sons.

I don't understand parents who refuse to accept their children. Perhaps they are suffering depression and when they were most vulnerable got brainwashed by Autism Speaks?

When I was depressed and vulnerable I joined WrongPlanet! With support from WrongPlanet and my psychologist, my depression is gone.

If you tell a child from birth that they are diseased, they are not going to reach their full potential.

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