The National Autism Association: You’re Not Helping

21 Jun

Its no secret that there are big questions over the legitimacy of the science behind the spurious claims that thiomersal causes autism. What’s not often discussed in the mainstream media is the extent to which blatant fallacy and misrepresenting occurs within so called advocacy groups.

The self-styled ‘autism community’ especially in the West are blatant hypocrites when it comes to promotong their own agenda. I aim to start highlighting some of the hypcricy and outright lies perpetuated by some.

The National Autism Association

The NAA first came to my attention when I discovered that Wendy Fournier, their President, was the web designer who designed (and I use that word in its loosest possible sense) David Kirby’s Evidence of Harm website. On this website there are claims from reviewers that Kirby:

explores both sides of this controversy

and that his book:

Walk[s] the middle line

It’s quite difficult how any book that has a supporting website designed by the President of an organisation that believes thiomersal cuases autism can be thought of as exploring both sides or walks the middle line. Its also difficult to see how the NAA gets so irate about what they percieve as non-impartiality.

On April 3rd of this year, Wendy Fournier and Rita Shreffler of the NAA put their names to an NAA press release regarding researcher Paul Shattuck’s study that said it was impossible to confirm or disprove the idea of an autism epidemic based on current knowledge. As this didn’t fit with the NAA’s agenda, they decided to play nasty:

In addition to the study’s weak methods and erroneous conclusions, questions have now arisen over possible failure to disclose conflicts of interest

So its interesting that the NAA are concerned about conflicts of interest only when they’re not their conflicts of interest.

So what about Shattuck’s conflict of interest? What was it exactly?

Although the article states that Dr. Shattuck has indicated he has no financial relationships relevant to the article, NAA has learned that he was a Merck Scholar Pre-doctoral Trainee from 1999-2003, and in 2003-2004 he successfully applied for $530,000 from the Centers for Disease Control and Prevention (CDC).

Neither of things are true. As Orac commented at the time:

Oooh, Shattuck received money from the evil Merck to support his training! Except that the Merck we’re talking about seems to be not the evil drug company but rather a nonprofit organization, the John Merck Fund, which supports research into a variety of areas, particularly developmental disabilities

and as regards the half a million plus dollars, Paul Shattuck himself had this to say:

As for the $540,000 from the CDC…it’s not entirely clear what they are talking about. I certainly don’t have a grant that big from anyone. They are probably talking about the autism surveillance grant that our center received from the CDC…a proposal which I helped prepare but am not listed as a co-investigator and am not funded from. Our University is one of several sites around the country funded to do prospective monitoring of the prevalence of autism and other disorders…am not sure why that is so horrible in the eyes of some advocates. I do have a small grant for about $12,000 from the CDC to investigate racial and socioeconomic disparities in the timing of autism diagnosis and service utilization. Prior research has indicated that the timing of identification and the level of service receipt can vary as a function of race and class. This is not a good thing in my opinion. So, I’m trying to find ways to do something constructive about it. I cannot imagine why some people would think that’s such an awful thing.

So, not only are the NAA hypocrites that only abhor conflicts of interests that don’t suit them, they’re also at best, wrong and at worst, knowingly lying.

Just as a follow up to this, I had a brief email exchange with Lenny Schafer where he said he was going to ask the NAA about this:

*Schafer to Leitch (Apr 27th 2006):*
I have forwarded Shattuck’s response to NAA and await their response. Thank you for making me aware of it.

*Leitch to Schafer (Apr 28th 2006)*
The NAA are already aware of these issues. I know of at least one person who has mailed them directly. They elected to ignore it and not to issue a correction or apology.

*Schafer to Leitch (Apr 28th 2006)*
I communicated today with the person who did the research for NAA. I am told a response is being prepared.

That was almost two months ago. The press release is still in place on the NAA website, along with the following quote from Claire Bothwell who it should be noted, given the NAA’s distate for conflicts of interest is either employed or at one time was employed by Waters and Krauss who are thiomersal litigant lawyers.:

Given the rocky history of the CDC and the autism community, failing to mention the author’s ties to this agency is a glaring omission that requires an explanation

I would suggest that given the obvious propensity of the NAA to be economical with the facts, their inability to research a subject properly and their failure to put the record straight is both irresponsible in its implications for autism research and its implications for people like Paul Shattuck who now finds himself grossly unfairly painted in a very negative light.

In a more recent Press Release, the NAA quote Wendy Fournier as saying:

In understanding that the court of public opinion sits in the driver’s seat, entities such as the General Medical Council discredit sound research in the name of a supposedly well-perceived vaccination program. Yet, this is a compromise. Compromise has no place in science, even science surrounding vaccinations.

Dr. Wakefield is one of the few that conducted research in truth, and yet the leaders in medical authority continue to compromise the health of subsets of the population that have negative reactions to shots like the MMR. Are we supposed to view these children as acceptable losses?” asks Fournier. “Dr. Wakefield’s willingness to find answers for these subsets is a testament to his scientific integrity.

Yet again, the NAA seems more than willing to bend the known truth and be incredibly hypocritical into the bargain. Certainly compromise has no place in science, which is why we should never compromise knowledge with bad science such as the original Lancet study or seek to bolster bad science with unpublished and unverifiable science such as that performed by Krigsman – a partner of Wakefields at Thoughtful House and thus someone who one would assume that the NAA, given their dislike of conflcits of interest, would be highlighting in as equally negative a light as they did Paul Shattuck. They also state unequivocally the Wakefield condicted research ‘in truth’ – which is an eyebrow raising statement given the fact that he gained his studies participants via vaccine litigants.

Good science does not require ‘assists’ such as skewing the population. And advocates like the NAA have no place in placing themselves at the center of a debate they obviously have little understanding of and which they are patently prepared to misrepresent.

This post has been sent as an email to Wendy Fournier, Claire Bothwell and Rita Shreffler. I’ll be asking them for a response either via email or via this blog.

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14 Responses to “The National Autism Association: You’re Not Helping”

  1. Kristina June 21, 2006 at 15:49 #

    NAA is pretty deceptive in its name——until one sees the Safe Minds links….

  2. Bartholomew Cubbins June 21, 2006 at 16:16 #

    Hey Wendy, Claire, and Rita,
    he’s talking to you!

    maybe they’re busy updating their site…. nope.

  3. Anne June 21, 2006 at 17:37 #

    Ann Brasher, who left you a comment yesterday, is an officer of NAA. She’s here; maybe she can respond on her organization’s behalf.

  4. Ms Clark June 21, 2006 at 18:04 #

    I wonder how the “NAA” feel about the Geiers. Do they stand by –

    those brave souls who are placing their careers on the line, using Lupron injections only to better the lives of our poor dear generation of children made autistic by vaccines, much as Andrew Wakefield has. They will go down in history as freedom fighters… blah blah blah ?

    See how easy it is to write press releases for the NAA? Oh, I forgot to decry something…

    They have Wakefield, Krigsman and Bradstreet on their advisory boards. Ivar Lovaas, too.

    For some reason they have two deceased people as honorary board members. Is that a new thing? I’ve never heard of it before. Oh, yeah, they have a deceased person on the board of Medical Veritas, too…but he’s not designated as deceased and honorary.

  5. Anne June 21, 2006 at 20:10 #

    If Autism Diva had directors (and we know she doesn’t), I would nominate Sir Isaac Newton to her honorary board of deceased directors.

  6. Ms Clark June 21, 2006 at 20:19 #

    Thank you, Anne. If he could, I’m sure he would accept.

    🙂

  7. EriK Nanstiel June 22, 2006 at 14:13 #

    Ms.Clark, Lovaas was on there prior to his death. I’m sure it’s just a case of their webmaster not removing it quickly enough. Liz Birt and Alan Clark are also on there, both deceased. I’m sure an email to the webmaster as a reminder would be all that’s necessary. I doubt it’s intentional or meant to be deceptive.

    But boy, when you’re against something…you attack every little nook and cranny, don’t you?

    The lot of you come off as a group of gossipy whiners. Excepting for the morbid curiosity of folks like myself (who only visit because you link to our websites), do you have anyone other than the choir listening to you?

  8. Junior June 22, 2006 at 15:03 #

    I’ve been listening.

  9. Kev June 22, 2006 at 15:14 #

    _”The lot of you come off as a group of gossipy whiners. Excepting for the morbid curiosity of folks like myself (who only visit because you link to our websites), do you have anyone other than the choir listening to you?”_

    Me personally? Approx 3500 people per day. You?

    I realise that good science, well performed is not of interest to you Erik but its what will help in the long run. Fake IRB’s, fabricated credentials, manufactured outrage and total fabrication will not.

  10. Jennifer June 22, 2006 at 17:06 #

    I’m sure the Geiers are listening too, EriK. But they never say anything – really because there is nothing to say against the truth. Dead people on your website is an understandable error, and nothing to get fussed about, IMO, but misleading credentials, fake IRBs – that’s something else again.

    EriK – I know you are very invested in this issue, but I would personally like to ask you to remove the Geiers from your website. If I were you, I wouldn’t want to be the person who introduced a lot of parents of the newly diagnosed to them.

  11. Joseph June 22, 2006 at 18:42 #

    The anti-vaxers and curebies live in a world of fantasy where we are the minority and they are the majority of the so-called ‘autism community’. In reality, the EOHarm list is comprised of about a dozen active hold-outs. The thimerosal hypothesis is practically dead. In contrast, Kev’s site is likely the one with most unique visitors (note I’m not saying ‘web hits’) of the entire autism web. Autism Hub, Neurodiversity.com, Autistics.org, and some other blogs dwarf the traffic of most curebie/antivax sites.

  12. Ms Clark June 22, 2006 at 21:48 #

    Erik Nanstiel scolded:

    “Ms.Clark, Lovaas was on there prior to his death. I’m sure it’s just a case of their webmaster not removing it quickly enough. Liz Birt and Alan Clark are also on there, both deceased. I’m sure an email to the webmaster as a reminder would be all that’s necessary. I doubt it’s intentional or meant to be deceptive.

    But boy, when you’re against something…you attack every little nook and cranny, don’t you?”

    *Ivar Lovaas is dead??*

    Take my breath away!! Erik!

    Does his wife know??

    More to the point, does he?
    http://www.lovaas.com/lovaasnote.php

    (laughing) http://www.notdeadyet.org/ , Erik.

    The NAA folks know that Liz Birt and Alan Clark are deceased, they just are weird in including them as “honorary board members.” I know there were comments to the effect that Liz was watching from heaven after her untimely death… but still, it’s something I had never seen before, deceased board members.

    It was Medical Veritas that didn’t indicate they knew that Alan Clark had died. He’s still represented as alive… the last time I looked. That’s just sloppy.

    Anyway, I don’t think we are looking into nooks and crannies more than the NAA was when they accused Paul Shattuck (or is it Shattock?) of taking payola from Merck and the CDC… which was totally fabricated or just plain *stupid* on NAA’s part.

    So what about that IRB debacle, no problem there, huh, Erik? Still giving your daughter those Lupron injections?

    Autism Diva blog gets about 350 visitors a day, I think half of them come from google searches on phrases like “autism quack” and “mercury chelation”, the rest are return visitors, lots come from universities. I get State gov’t visitors too, like ca.gov (California). Today traffic should double at least, because of the skeptics’ circle. Every visitor to the Circle blog entry will have a chance to read about the Geiers recent exploits as outlined on neurodiversity.com, and they’ll get to read what Sunny says as he lisps earnestly about recent skeptical writing.

  13. David N. Andrews BA-status, PgCertSpEd (pending) June 22, 2006 at 23:17 #

    MsC: “Ivar Lovaas is dead??

    Take my breath away!! Erik!”

    Was gonna mutter something about ‘we can only wish…’, but I won’t….

  14. Nobody June 25, 2006 at 06:37 #

    No one knows for sure what causes asd 100% of the time. There is more than one cause. What caused each child’ s symptoms that led to a diagnosis is likely to be entirely different! Could post encephalitis be misdiagnosed as asd? Go ask a retired neurologist. Since I am not a neurologist working in the same timeframe as Kanner, perhaps I should not comment.

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