A Means To An End

28 Nov

And so, the latest fire-storm in the autism blogosphere continues to rage. If you’re unaware of the story I’ll offer a brief recap (as unbiased as I can make it) before trying to offer up some commentary.

Briefly, JB Handley of Generation Rescue bought the domains supportvaccination.com, oracknows.com and autismdiva.com. Why? I don’t really know. On a practical level they can’t be doing him much good at all so one is left to consider the possibility that he did it as either a joke or to be spiteful. I sincerely hope that the team who is working on his search engine marketing hasn’t recommended that he does stuff like this as if they are then they’re moving him into the realms of what is termed as ‘black hat SEO’ – this refers to doing lots of bad stuff that is against acceptable internet policy to get a good rank on a search engine results page. The penalties for this can be severe if search engines catch you at it and include blacklisting the sites in question and terminating any associated AdWords accounts. From what I know of JB he loves to push the envelope a bit so I wouldn’t be surprised if he is doing this. He is playing with more fire than I think he knows about though.

Anyway, the unsurprising upshot of this is that most people on ‘his’ side of the debate think that a) his methods are questionable but seeing as he’s promoting such an important message the ends justify the means or b) that its downright hilarious. People on ‘my’ side of the debate (please note by using the phrase ‘my side’ I’m not assuming ownership of it) think that a) its all very childish and a bit sad or b) that what he’s doing is tantamount to willfully misleading people.

What are the definite results of JB’s actions? Well, he’s polarised two sides that were beginning to listen to each other a little better. He’s created a new battlefront where none existed before and he’s upset people.

Lets look at JB’s sides claims that even though his methods are questionable that its OK as the message he’s relating is so important the end justifies the means.

First, that is a very dangerous argument to apply to anything. If we call ourselves a society that has a moral base then ‘the ends justify the means’ is at best, ambiguous as a reason.

Secondly, lets look closely at what JB’s message actually is to see if it is indeed justifiable to use methods such as these. Lots of people, particularly JB’s supporters either don’t know or seem intent on ignoring JB’s message. It is this: autism is mercury poisoning. Not _may be_ , not _in some cases_ , not _might be triggered by_ but simply *is*. Now and forever. This is an absolutist position and its the main thing about Generation Rescue that I believe it is imperative to challenge. Why? Because autism is *not* only mercury poisoning. The vast majority of the information on the GR site revolves around the idea that thiomersal in vaccines causes autism. Lets leave the debate as to the scientific validity of that belief to one side for now. I’m quite happy to entertain the possibility that he may well be right. I’m equally happy with the science that as of this time, states that he is not. For my argument – its irrelevant. The fact is that even if JB is right and thiomersal does cause autism _it is not the *sole* cause of autism_.

Big deal say people – why does that matter? It matters because if that viewpoint comes to be accepted fact then the standard treatment for autism will become chelation. And seeing as it is a verifiable scientific fact that autism existed _long_ before thiomersal was ever used this would mean that there were a very large number of autistic children undergoing chelation totally unnecessarily. Question: Is it stupid or clever to subject children to unnecessary medical procedures?

The irony of this message is that it is a standard complaint of the mercury = autism belief system that they couldn’t get their Doctors to look beyond their narrow treatment options. This is _exactly_ what will happen should mainstream medicine ever accept the GR viewpoint that autism is mercury poisoning to the exclusion of everything else.

Let me reiterate once more – I have no issue with any group that calls for more investigation into the use of thiomersal in vaccines and that I’m glad that it is no longer in vaccines. I also fully accept that there are occasions that vaccines have damaged children. I also fully accept that mercury is a known neuro-toxin. What I do not want however, is for my daughters treatment to be a) enforced and b) an unnecessary and dangerous procedure when there is no basis for such absolutism.

So I ask you again Dear Reader – is JB’s absolutist message so good that it justifies his actions? Lets not forget that his actions also include name-calling (JB referred to friends of mine as ‘trailer dwelling coo-coo’s’ and me personally as a ‘wanker’ – a phrase for the non Brit-slang understanding amongst you that means that JB believes I masturbate to excess – roughly equitable to ‘jerkoff’ in US parlance I believe). This is as well as buying up domains that belong to sites that disagree with him.

Many claim that JB has apologised (although I fail to see where he apologised to me) and thus should be forgiven. I agree and disagree with that. I agree that for the debate to progress we all need to forgive and move on. However, this is not a one-off circumstance for JB. This is his MO. At some point, we have to stop making allowances and start holding people to account.

That said, up until this incident, I believed JB’s latest apology was sincere. I still hope it was.

People have also referred to JB’s behaviour as a bull-in-a-china-shop and expressed admiration for his go-get-em approach. I can’t see how such an approach is particularly admirable. Bulls loose in china shops breaking everything indiscriminately and certainly I feel less sure of the shaky common ground that had just started to be secured between the two sides. Lets also not forget _my_ message: that autism is not solely thiomersal poisoning and that bulls loose in _that_ particular china shop run the risk of doing very great damage to the delicate objects inside it.

Now lets move on to the point about upset. People from JB’s side of the debate cannot seem to understand why this action has upset Camille so much. As she is very much smarter than me she doesn’t need me to speak for her but I do wish to add my opinion as to why whats happened might cause her distress.

As a blogger who comments particularly on the science behind the debate she stands or falls on the accuracy of that science. If anyone was misled into thinking she endorsed the GR view then that person may well have further doubts about her validity. I hesitate to speculate as to whether or not that might be one of the reasons JB did it of course.

Secondly, there is an issue here of implicit control. An ugly image is called to my mind of a rich businessman laughing uncontrollably at the image of a less affluent woman as he dangles her on puppet strings. Fanciful? Yes. Exaggerated? No doubt. Based in some element of truth? I’m afraid I think it is.

Thirdly, again, lets look at the GR message and think about why those who are autistic particularly might not want to be associated with it. They believe GR is wrong. Further though, they see GR reducing who they are to a set of mercury related symptoms. Lets not forget that GR believe that autism is *only* mercury poisoning.

Once upon a time (in fact less than 40 years ago) psychologists ‘knew’ that homosexuality was *only* an illness that could be ‘cured’. How do you think that – at the time – that made gay people feel? Imagine a blogging community of parents desperate cure their gay adolescents (who ‘know’ that their children are just ill) – would gay adults be horribly offended and fight back? Or would they sit on their hands and do nothing?

For us parents, the outcome of this debate is very important – our kids depend upon it. For those people who are autistic, the outcome of this debate is absolutely crucial. Their continued survival depends upon it. I ask you once more: in an area of such vital importance, is the method really unimportant when the method denigrates so much? Is it something to be brushed aside as we smile indulgently at its instigator when its tantamount to an attempt to control a debate that affects peoples very right to exist?

Is this message so right that such a total lack of respect for a differing view is at best readily embraced and at worst tolerated in the way we would tolerate a favourite but slightly spoiled child?

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221 Responses to “A Means To An End”

  1. Ms Clark December 4, 2005 at 20:05 #

    They’ll call it “Rainbow Beach Towels on the Hell that is Autism” or something…
    here

    This one is funny because the NYT had to make a correction to his article.

    He wrote another interesting one about people driving around with video monitors in their cars, hooked to DVD players and playing pornographic movies.

    Then there were several about buying vacation houses.

    It looks like he got scolded by the NYT editors for participating in an AIDS demonstration outside the NYT or something… his current PR man was dismissed from writing for the NYT for participating in that demonstration, if I remember right. I wonder if David decided to burn his bridges with the NYT because they scolded him. His current PR man has a web page where he explains part of what happened, but I can’t remember his name.

    Anyway, now he’s giving speeches at chiropractic conventions and doing conferences with Buttar. He’s gotta be thinking that the book was a great career move (rolls eyes). He still hasn’t gone back to repsond to criticisms on the BMJ RR like he promised months ago. He said he’d respond to Kathleen’s open letter to him, “evidence of venom”, too, but hasn’t. No, he’s busy with those conferences.

  2. David N. Andrews BA-status, PgCertSpEd (pending) December 4, 2005 at 20:08 #

    ah…. missed it i think….. all in that mass of stuff up there…..

    too much on my mind just now, anyhow….

  3. Sue M. December 4, 2005 at 21:28 #

    Ms. Clark wrote:

    “Did you figure out that there has been no epidemic in China”?

    – Please refrain from putting words in my mouth. I said that the rates have gone up. Get a grip Camille.

    -Sue M.

  4. Ms Clark December 4, 2005 at 21:58 #

    Dear Sue,

    did you figure out that the rates of autism haven’t gone up in China. How’s that?

    Remember Kennedy trying to terrorize the readers of Rolling Stone etc with dire pronouncements of how there was a vast increase in autism in China, known to be caused vaccines, bound to be caused by thimerosal blah blah?

    He was intimating that the US would be attacked by terrorists or worse because of “destroying a generation” blah blah.

    That’s the hype. Now, it’s just an increase, huh?

    Anyway, no increase in actual cases, just more awareness. Yup.

    No discussion of minicolums? How about this “all autism is Angelman’s syndrome”? or “all autism is is Lujan-Fryns syndrome” Or ” all autism is is Fragile-X” syndrome. “all autism is is tuberous sclerosis”, “All autism is is agenesis of the corpus collosum”… Want more slogans? They all make more sense than GR’s slogan.

  5. M December 5, 2005 at 09:43 #

    “All autism is caused by watching too much Thomas the Tank Engine!!”

    (well, it’s a major correllation I’ve observed)

  6. David N. Andrews BA-status, PgCertSpEd (pending) December 5, 2005 at 14:34 #

    A major cause of autism is comparison with people who are oversocial…..

    I’ll get ma coat!

  7. clone3g December 5, 2005 at 15:41 #

    “All autism is caused by parental internet exposure.”

  8. andrea December 5, 2005 at 18:25 #

    Autism rates continue to be expressed in the population as a result of having children.

    andrea

  9. Ms Clark December 5, 2005 at 18:47 #

    The autism epidemic was initiated by massive communal exposure to the movie “Rain Man” on VHS and DVD.

    We know that visiting Walmart, in the US, can function as a diagnostic instrument to dectect autism in young children, especially (per Temple Grandin PhD), but do people realize how many copies of “Rain man” and “Thomas the tank engine” have been sold there? huh? huh?

    “23 short films about Glenn Gould” may be responsible for the increase in Asperger’s syndrome.

    Scary stuff.

  10. Srinath December 5, 2005 at 20:19 #

    OK I read through most of the topics and here is what I have thought so far.
    My 3 year old seems to be in some discomfort or pain once in a while and seems to have some sorta mini seizure and being non vocal cannot say it. Now we had a neurologist last year as we were in the process of diagnosing him who suspected lead poisoning. She was not affiliated DAN/mercury at all what so ever. His EEG and all other blood work was normal, and he had elevated lead. Not over the limit but was elevated to be close to that mark. He has been told he needs ABA and I live in the only freaking part of this damn state where only private schools do ABA, and they charge 20 grand a year all payable at the time of admission, and they have waiting lists over a year long. They also are training people to do ABA whihc means the clasrooms are staffed by students and they are watched over by a ABA teacher as in they are practising on your kid. They have also had kids that react badly to their training due to the repetetive nature of it. My son vascillates between genius and moron to be honest, and if he has switched modes he will simply start to withdraw and shut down in the repetetions. He isn’t eligible for the preschool system yet and they follow teacch. He wil be 3 in Jan 06. I now ask the neurologist who suspected Lead if it can be mercury and she took 2-3 days to check somehting (it is a year old case after all) and she goes it can be mercury she’d like to see him and try and test him more. I have not met a DAN doc yet. The insurance will cover all of his tests. I have been told the medications may not be covered. But have been told they are under $100 a month for medication and supplements unless he needs more supplements. BTW he seems to be better off Casein free, and gluten had no effect. He actually doesn’t like milk. Spike it with choclate and he’d drink it all the while giving you the suspicious eye … we call it choclate drink cos if it was choc milk he’d not drink it. In many cases we have found he’d quite perceptive and he usually doesn’t eat what might not work well for him. As in he’d take rice over wheat based food any day, and has never drunk straight milk ever. Milk makes him stim more we feel. I am on the wait list for ABA and waiting for the IEP to send him to preschool. I am going to check with the neurologist before chelating him. From where I am standing its obvious to me who the quacks are. In any case I just wanted to share. I believe low end of lead to no lead is atleast 10 IQ points. My son already is regarded as high functioning. I also believe he is high sensitivity. Things that bug him just drive him to distraction. I believe we may get the lead out and see what happens from there. BTW he got atleast some of the lead by eating a chunk of a old perfume vial that was in my wife’s scrap book.
    Cool.
    Srinath.

  11. Sue M. December 5, 2005 at 20:23 #

    Andrea:

    Horticulture bores me. However, I will ask you to comment on the following from your above digression. That is:

    “Also, there are some varieties of tomato plants that are genetically much less prone to BER than others”.

    – Let’s look at that. What if I were to change that to:
    Also, there are some children that are genetically much more prone to thimerosal damage than other. Where’s the problem? For the record, I am NOT trying to compare children with tomato plants… Just commenting on Andrea’s above silliness.

    -Sue M.

  12. clone3g December 5, 2005 at 21:03 #

    Sue M. – Let’s look at that. What if I were to change that to: Also, there are some children that are genetically much more prone to thimerosal damage than other. Where’s the problem?

    Which genes Sue? You don’t mean the SNP’s Jill James reported, I hope. Other than COMT the others aren’t significant. COMT marginally and yet to be replicated in a larger study. Which genes render SJL mice prone to thimerosal?

    Better to spend some of that advertising and book sales money on genetic research instead of a movie.

  13. Sue M. December 5, 2005 at 21:27 #

    Clone wrote:

    “Better to spend some of that advertising and book sales money on genetic research instead of a movie”.

    – Nope… I’ll stick with getting the movie out there.

  14. Bartholomew Cubbins December 5, 2005 at 23:59 #

    Movies over research.

    A sad, yet expected commentary on priorities and values.

    Go Team!

  15. andrea December 6, 2005 at 00:05 #

    Sue M. said, “Horticulture bores me.”

    I was merely trying to draw upon a much less technical, and thus likely more familiar, example. But, if you can’t be bothered to be interested in the subject of pseudo-science fallacies (the actual subject of that post) as demonstrated by a horticultural analogy, then what are your special interests?

    “Also, there are some children that are genetically much more prone to thimerosal damage than other. Where’s the problem?”

    This is quite possible — in the world population there is someone who is allergic to, or has a reaction to, nearly everything. A very few people are allergic to chlorine, but I don’t think there is much effort taken to prevent the chlorination of drinking water or swimming pools or the use of bleach in disinfectant cleaning solutions — the necessity of preventing disease epidemics far outweighs that.

    However, that *still* does not lead to the conclusion that autism is caused by, or even correlated to, reactions to Thimerosal or mercury poisoning!

    Clone wrote:
    “Better to spend some of that advertising and book sales money on genetic research instead of a movie”.
    Then Sue M. replied,
    “– Nope… I’ll stick with getting the movie out there.”

    Because promoting hysteria and playing the blame game is *so* much more useful than actual scientific research! As if.

    andrea

  16. Bartholomew Cubbins December 6, 2005 at 03:13 #

    andrea said, “Because promoting hysteria and playing the blame game is so much more useful than actual scientific research!

    It is when making bold claims based on feelings rather than science. When the science isn’t there, something else has to be used. Prometheus’ blog has some really nice posts (by anonymous) about that on his last couple of entries.

  17. Srinath December 6, 2005 at 05:53 #

    Also who said it was if your “hair has a lot of mercury you’re mercury poisoned, if its got no mercury you’re mercury poinsoned “. From what my neurologist (non DAN – not even aware of DAN) told me, mercury in current excrement (hair, urine, stool) will probably be shown in a blood test and represents an on going intake of mercury. The cumulative effect of a past mercury intake will not be detected in those tests. She didn’t tell me what it can be detected in.
    DAN ideology seems to think mercury presence from an earlier consumption will cause the body to excrete zinc, copper, iron and practically all else that is needed for the body in place of mercury. I dont see the conflict in those 2 statements. If you’re not mercury poisoned you’d have no mercury in your current excrements, and have no mercury in your hair as well as not show Zn, Cu, Fe, Se or Hg in your hair. Of course that is only valid to your last hair cut or there abouts. before that who knows.
    Cool.
    Srinath.

  18. David N. Andrews BA-status, PgCertSpEd (pending) December 6, 2005 at 09:08 #

    Andrea: “Autism rates continue to be expressed in the population as a result of having children.”

    Shit! That’s absolutely right!
    ;)

  19. David N. Andrews BA-status, PgCertSpEd (pending) December 6, 2005 at 12:13 #

    SueM: “Just commenting on Andrea’s above silliness.”

    Rather Andrea’s silliness that yours….. her’s won’t hurt anybody.

  20. David N. Andrews BA-status, PgCertSpEd (pending) December 6, 2005 at 12:20 #

    SueM: “Also, there are some children that are genetically much more prone to thimerosal damage than other. Where’s the problem? For the record, I am NOT trying to compare children with tomato plants… Just commenting on Andrea’s above silliness.”

    The point is, I believe, that the thimerosal-caused-brain-damage hypothesis has not been empirically validated (see the scientists’ letter, quoted above): there is no scientific support for it.

    Andrea: “But, if you can’t be bothered to be interested in the subject of pseudo-science fallacies (the actual subject of that post) as demonstrated by a horticultural analogy, then what are your special interests?”

    I think Sue’s special interests are blaming others using pseudoscience rather than getting a grip and using real science as a way to understand her world.

    I wonder what George Kelly would make of all these procrusteans…

  21. David N. Andrews BA-status, PgCertSpEd (pending) December 6, 2005 at 12:23 #

    SueM: “– Nope… I’ll stick with getting the movie out there.”

    Movie????

    And you come in here telling us you want us to consider the science, and all you want to offer is a fucking movie?????

    JayzusBollocks O’fuckin’Leary!

    I’m gonna have a shower now. I hope I don’t drown laughing at that marvellous research strategy!!!!!!!!

    LoL

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