Monday, April 30, 2007

New Generation Rescue Site

Okay, they finally got it up and running. Generation Rescue, purveyor of autism myths, home of the "rescue angels", creator of false hope under the guise of biomedical treatments for autism, has reworked and rewritten their unbelievably misleading website.
For those of you unfamiliar with the issue, GR sits at the epicenter of the mercury-causes-autism debacle. The founder, one J.B. Handley, is a crass, obnoxious individual who has basically staked his entire reputation, all of his credibility, on one premise - that autism does not truly exist, that it is actually mercury poisoning. At least that's what he has been quoted as saying in print, on TV interviews, in person on internet forums and blogs, etc. Conveniently, they put a link to one of these interviews on the site itself (though the link is not seeming to work currently). Here's one that does.
Over the last year or so, tremendous damage has been done to this failed hypothesis, most recently when the CDDS numbers in California showed that, as of Q4 2006, autism caseload was (still) on the rise, despite the almost-complete removal of thimerosal (mercury-containing preservative) from the childhood vaccine schedule back in 2001. Those who have all along supported this hypothesis despite a complete lack of evidence have grown more and more provincial in their defense of said position. The saddest thing about J.B. Handley's situation is that the behaviors of his own autistic son - absolutely promised by the father to be eliminated by chelation therapy (to remove mercury from the body) - can be construed as the final say-so on whether he is right or wrong, whether his credibility stays or goes. What an incredible burden to be placed on a child.
So anyway, the most noticeable thing when first viewing the new GR site is that something is ... different. The goalposts have not just been moved, it appears they have switched to a whole new sport. The shift in thinking (read: backpedaling) is apparent in the following statement: "We believe these neurological disorders ("NDs") are environmental illnesses caused by an overload of heavy metals, live viruses, and bacteria." Really? And no mention whatsoever that, for years, until just today, the site's main message was "Autism is Mercury Poisoning!" Hmmm. Seems like some explanations are in order. I'm not holding my breath.
There is a section on Treatment. Predictably, it contains short statements on such wonders as mercury removal (DAN! protocol, Cutler protocol), Dr. Yasko's RNA ... stuff (more on that here and here), Methyl B-12 and Valtrex, and Homeopathy. Wow. It reads like the who's who of unproven yet very expensive and time-consuming therapies. On the bright side, Lupron is noticeably absent, as are such marvelous treatments as medical marijuana and urine injections (though they list in their Hall of Fame a dealer of one of these treatments).
Anyway, other bloggers will do a much more effective job than I of covering all of the misinformation housed on this site. My point is this - it is stunning to me that GR has "reversed their field" without offering any explanation of how WRONG (or, at the very least, incomplete by their own admission) their message has been for all these years. It is frustrating to me that more parents may be exposed to this crappy science, and that some will allow it to dictate their understanding of, their treatment approach to, and their attitude towards their autistic children. It is amazing to me that the same die-hard group of researchers, bogus therapy sellers, and cure-dependent parents can continue to perpetuate the untruths found on this website. It is offensive to me that my son is being referred to, in essence, as a vaccine/mercury-"damaged" child, when in truth he is a wonderful, amazing boy who is neurologically divergent from the norm.

25 comments:

Anonymous said...

Well said. Every time I think about the "treatments" being pushed by these quacks, the lyrics to the song "Medicine Show" by Big Audio Dynamite flow through my head...
Terry H.

Steve D said...

Thanks for the comment, Terry. If you haven't seen them already, I could recommend some great additional sources of information that exhastively cover this topic. Let me know if interested.

Another Voice said...

Steve,

GR was one of the first places I visited when I began my quest for information about autism. At first I thought wow; these folks need more help than the kids do. The dialogue of hate and disrespect for their own children as well as for those not viewing any child as a "train wreck" was numbing.

I thought the world had gone mad and I had forgotten to read the paper on the day it happened. I actually went to sites that discussed children with MS and cancer and found much more loving parents.

When I was just about ready to call the game over and stop seaching I stumbled upon Kevin's site (LB/RB). There I found a man who deeply loves his child; it was wonderful. His list of recommended sites made my find even better.

You fit right in with those sites.

Steve D said...

AV -
I couldn't agree more about Kev. I, too, felt like I found a home - with like-minded people - when I came across his site.
And, you will be happy to know, my blog is now listed on his "Friends and Notable Sites" category. Kev was nice enough to put me there despite the fact that I had only 2 blog posts to my name at the time (this was a few weeks ago).
I have been a regular commenter on Kev's blog for about a year - commenting under the name "Friend in California". I still comment there under that name, actually. Not because I wish to be anonymous, but just because its a habit that kind of stuck.
Have you thought about blogging yourself? Or perhaps you already do? You seem to have much to say of value, and I would encourage you to consider it.

Another Voice said...

Steve,

Thank you so much for that compliment.

I am not a blogger and probably will not become one. I am amazed by the internet and the ability to form these circles for communication comprised of view points from all over the world. Conceptually, I love it. Practically, I would mess it up big time. It took Kev a couple of e-mails just to help me through the sign up procedure on the “Parents Forum”.

If I had several classes from Kev on how to use the internet and a dozen writing classes from Mom-NOS I might feel better about it.

Keep up your good work, I do enjoy your blog.

Chuck said...

OK, let’s see where you sit on the spectrum of this topic:

What percentage of ASD cases should be contributed to environmental insult?

At what point are "treatments" necessary and should be used?

Doing nothing is also a very expensive time consuming unproven treatment as well. At what point do you do something other then just loving and raising your child?

Steve D said...

Chuck -
In an effort to determine my position on this topic, you asked:
"What percentage of ASD cases should be contributed to environmental insult?"
My answer, based on the current body of scientific evidence available is: I don't know. Nobody does. I believe the answer is somewhere north of zero, as there is not 100% concordance rate between identical twins.
Then you asked:
"At what point are "treatments" necessary and should be used?"
Whenever a medical condition exists that requires treatment, Chuck. Autism is a behavioral disorder and science, except in the case of some known causes such as Rett's, has established no physical/medical ailments that are known to be associated with it. Of course, this does not preclude a medical problem in an autistic person that requires treatment. Its just that the treatment may (or may not) solve the medical problem but will not change the fact that a person is autistic. I would submit that in certain cases (such as gastrointestinal discomfort) a successful remedy that eliminates discomfort may reduce some behaviors that had been (erroneously) attributed to autism.
You then said:
"Doing nothing is also a very expensive time consuming unproven treatment as well. At what point do you do something other then just loving and raising your child?"
I don't understand the first part of this comment. But in an overall sense, NOT doing biomedical treatments does not equal DOING NOTHING. We do lots of things to help our son deal with his differences and prosper in every possible way. These include behavioral therapy, horseback riding (at a stable who only deals with disabled people), speech therapy, special aides at school, etc. This is not doing nothing. But, read my post titled "Credit where Credit is Due" to see what I really attribute Jason's progress to.

Anonymous said...

Hi Chuck. I have been involved in the ASD world for about 2.5 years now with my 4 year old son. We have tried virtually everything out there, from chelation to mud baths to GFCF diets, milk free, various nutrients and medicinal supplements, vitamin shots in the ass while he is sleeping at night, and a myriad of other "treatments" which only my wife could possibly remember. Has he shown improvement over the last year and a half? Yes. Can any of the treatments be pointed to as the cause of the change? No.
Is it likely, in MY opinion, that my son has improved more from ABA and speech therapy than any of the treatments? Again, in MY opinion, yes.
The problem, as I see it, is that these purveyors of treatments have no scientific evidence that any of the treatments actually work. If they did, there would be actual published studies in respected journals, not simply anecdotal, episodic results presented by such purveyors themselves.
This leads to the bigger problem, again as I see it, that people in our situation are extremely frustrated by the lack of actual treatments, and thus are willing to try just about anything to help our kids. Thus, my reference to the lyrics of "Medicine Show".
What this boils down to in my case, is that I don't believe any of such treatments work, but I am still willing to try just about anything that comes along, out of desperation. So, if you have any thoughts on what might work, I am happy to listen.
By the way, do you know where I can find some fresh bat blood and maybe a frog's wart?
Terry H.

Chuck said...

I just wanted to gauge how extreme this site may be. I have just discovered and have started to troll around in the Autism-hub blogs. I am very inquisitive by nature and remain open to all positive and negative potential of new ideas. How would you respond to this situation?

Genetic study comes back showing a 80% correlation to this gene in DSM-IV diagnosed autistic in a sample of 100. A subsequent study of subjects with these gene mutations, both autistic and NT, show these individuals are not physiologically capable of excreting any heavy metal toxins exposure with 80 ASD and 10 NT subjects.

Would you laud the first study and berate the second? Accept both, or except neither? Would you have you son tested for this genetic mutation? How long would you wait to confirm the studies?

Chuck said...

Sorry, should be

Accept both, or accept neither?

Steve D said...

Anonymous -
Thanks for your comments. I agree on some points, but would encourage you to carefully consider side effects of any treatment you try. It sounds like most of what you have been doing has been fairly safe, and that you have avoided some of the more extreme treatments.

Steve D said...

Chuck -
Interesting question(s).
My limited understanding of genetics would lead to this answer on the first question: Even with an 80% correlation, this does not mean that "the" gene has been discovered. I expect that many, many genes will eventually be implicated, with an incredibly complex interaction of "mutations" (for lack of a better term) resulting in the wide range of behaviors currently included in the Autism diagnosis. As far as having my son tested, I would do so if the goal was to provide crucial information to build the knowledge base. Otherwise, I would se no need.
As far the second hypothetical study - I would discard the results of this one. The reason is that my understanding of the biological process of removing mercury from the body does not include "excretion". Mercury disposal/removal is a process of passive uptake, not active excretion. Therefore, I do not believe that the results of this study could even theoretically be valid, considering they indicate a process that has not been established to exist.

I am going to guess that your next question, or at least the point you are really asking about is this: If it was established that my own son could not biologically rid himself of mercury in his system, would I then treat him for mercury poisoning (via chelation)?
Answer: If he showed signs of mercury poisoning (which look nothing like autistic behaviors) and had valid test results (from a reputable lab, non-provoked, with properly established value ranges to compare against), then I would consider chelation a viable option to resolve an acute mercury poisoning condition. He would still be autistic at the completion of the therapy, but he would no longer be mercury poisoned.

Chuck said...

Terry,
There is a real easy way to remove your opinion and put in the science:

Do the clinical work yourself

If your wife is currently doing treatments, you could either do the aggressive approach and remove all the treatments and add them back one at a time per week or be conservative and continue your current treatments and remove one at a time per week for positive/negative effects. Do not tell your ABA/speech provider and use them as independent unbiased evaluator.
If you do your own ABA/speech, there is no way to independently verify.
Do you contribute any gains to ABA, speech or both? One might be great, one might be awful. They both might not work without the other?
Until you can isolate the positive and negative aspects of All treatments, there is no way to attribute ANY benefit to any treatment.
ABA or speech therapy could be just as damaging to your child as any other treatment. Your personal bias could be skewing your view.

Chuck said...

Steve,

Where do you get your definitions/assumptions for mercury poisoning and chelation?

Steve D said...

All over the place, really. I usually start looking at definitions on various websites that seem "value-neutral" - just compilations of medical information. PubMed is a valuable tool to find research on various topics such as this one. Also, there are numerous bloggers in the online community who work in related fields and are very well educated in these issues. I am not one of those bloggers, I make no claim to expertise on any of these issues. Hence the name of my blog :)
Also, Chuck, in your comment to Terry I think you made some misleading points. Your recommendation of how to inject science into his analysis of results of treatment does not have controls, and does not account for observer bias or placebo effect. Any results obtained that way would be no more than anecdotal.
I agree with you that ABA and Speech therapy are also unproven therapies, however. I think that saying they are harmful is pushing the boundaries of logic, but there are those who disagree with me, such as Michelle Dawson - a very strong voice in autism advocacy who is autistic herself. I disagree with, but greatly respect, her position on this. I think she mainly takes issue with "Lovaasian" ABA, which is the 40-hr-per-wk kind that uses negative reinforcers. We do not utilize this approach with our son.

Do'C said...

Steve,

Not intending to interrupt the conversation. I just had time to read your article on the subject. What a thoughtful and concise, yet comprehensive summary. Thanks for that!

Do'C

Steve D said...

It is my belief, Do'C, that friends cannot commit interruptions. Only contributions. Thanks for the comment.

Anonymous said...

Chuck:
If only I had the time to do what you suggest. To date, we have given him multiple discrete treatments, for various limited time periods, with no improvement that can be tied to any given (non-ABA or speech) therapy. Unfortunately, with "early intervention" the mantra, it is difficult to hold clinical trials on my own child, especially where we are told by many of the purveyors of the treatments that it may take months for any of it to work. That is why we have double/triple/quadrupled the treatments, along with ABA/speech, because soon it will no longer be "early" intervention, just intervention.
I do believe that ABA/speech is effective because I have utilized the therapists' bag-o-tricks to communicate with my son, and I have seen it work. I know it is possible that the bubbling cauldron of gfcf stew or whatnot may be the procuring cause of the ABA/speech appearing to be effective, but my instincts tell me otherwise. This is what I call anecdotal, but it seems to be doing something, so I will stick with the ABA/speech.
I do appreciate your thoughts and comments.
Terry H.

TheProbe said...

Visiting from a great article on Autism Street...

Super blog, and well done. Your son is getting an excellent treatment...being your son.

BTW, have you noticed the preponderance of dads blogging on Autism?

Steve D said...

Thanks for the nice comments, Probe. And, yes, I have noticed the amount of "dad" bloggers that are making great contributions.
I have often wondered why this is the case, and am to this point stumped.

Anonimous said...
This comment has been removed by a blog administrator.
Anonymous said...

The question for you is:

Should a study comparing regularly vaccinated to completely unvaccinted kids be performed?

As you should know, Generation Rescue has conducted the only known study in the world comparing vaccinated to completely unvaccinated kids.

Should a more rigorous study be conducted. Or, should Generation Rescue's study be the only study ever to be done?

Steve D said...

Anon -
"As you should know, Generation Rescue has conducted the only known study in the world comparing vaccinated to completely unvaccinated kids."
What GR conducted was not a study - it was a telephone survey. Its results were mixed in favor of and against the existence of vaccine-related neurological impairment, but that doesn't matter. The results were utterly meaningless.

"Should a more rigorous study be conducted. Or, should Generation Rescue's study be the only study ever to be done?"
The sole objection I have to a study being done is that it would utilize resources better spent on other things (in my opinion, anyway). If a study were to be done, I really like the design that Prometheus offered:
http://photoninthedarkness.blogspot.com/2007/07/lets-do-study.html

So now may I ask you a question?
If a study like the one Prometheus is recommending is done, and if the results show there is no correlation between vaccination and neurological abnormalities, would you abandon your belief that vaccines cause autism?

Chuck said...

If a study like the one Prometheus is recommending is done, it will have all the inherent problems that I pointed out to Prometheus.

grene said...

I recently came accross your blog and have been reading along. I thought I would leave my first comment. I dont know what to say except that I have enjoyed reading. Nice blog. I will keep visiting this blog very often.


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