It’s time to stop the intimidation tactics towards the IACC

21 Oct

The Interagency Autism Coordinating Committee (IACC) is group of government employees and autism community stakeholders who are chartered with coordinating research activities within the U.S. government’s Department of Health and Human Services (HHS).

The official charter is:

The Interagency Autism Coordinating Committee (Committee) shall coordinate all efforts within the Department of Health and Human Services concerning autism spectrum disorder to combat autism through research, screening, intervention and education. The Committee’s primary mission is to facilitate the efficient and effective exchange of information on autism activities among the member agencies, and to coordinate autism-related programs and initiatives. The Committee will serve as a forum and assist in increasing public understanding of the member agencies’ activities, programs, policies, and research, and in bringing important matters of interest forward for discussion.

The IACC predates the Combating Autism Act (CAA), but has taken on the role of coodination and strategic planning for the CAA.

This is no small effort. We are talking about a group that helps to set the goals for about $100M in research funding a year. The U.S. government’s research efforts into autism are the largest in the world. The research portfolio covers causation through supports for autistic adults.

I don’t think I will surprise anyone when I say that the autism communities, like any communities, have many different ideas of what focus should be placed on autism research. I would also expect little argument that the loudest voice in that discussion comes from the groups promoting the notion that vaccines caused an autism epidemic. Most of these groups are sponsors of the Age of Autism blog.

These groups lobbied hard to get vaccine research included in the Combating Autism Act. The failed. They did manage to get some senators to mention vaccines in the “colloquy“. These were statements made by senators when the Act was passed. Basically, these are speeches, not law. These statements were also not very strong. Consider this statement by Senator Enzi:

However, I want to be clear that, for the purposes of biomedical research, no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder. Thus, I hope that the National Institutes of Health will consider broad research avenues into this critical area, within the Autism Centers of Excellence as well as the Centers of Excellence for Environmental Health and Autism. No stone should remain unturned in trying to learn more about this baffling disorder, especially given how little we know.

The strongest argument that can be made is that three senators made a nonbinding statement that the National Institutes of Health should “consider” research on vaccines.

The Combating Autism Act was signed over three years ago. Since that time it has become even more clear that vaccines are not a primary cause of autism. The two major theories that the MMR vaccine or that Thimerosal cause autism have been shown to have very little scientific basis. Both were discussed at length in the Autism Omnibus Proceedings. The MMR causation theory has already been rejected as “not even close” and upheld by three separate appellate judges. The thimerosal theory has not been decided as yet, but the science was no better than that used for MMR. I expect that the Thimerosal theory will suffer the same fate as the MMR theory.

The number of people applying to the “vaccine court” for compensation for autism peaked six years ago. 2,437 families petitioned the Court for hearings alleging autism as a vaccine injury in 2003. In 2008 that number shrank to 253. The vaccines-cause-autism theory is clearly losing ground even within the autism community.

That doesn’t mean that the vaccines-cause-autism organizations are giving up. Quite the opposite. They are ratcheting up the pressure, focusing on individuals.

I actually find it hard to consider the vaccine/autism groups to be separate entities. These groups are SafeMinds, Talk About Curing Autism (TACA), the Autism Research Institute (ARI), Generation Rescue, and The National Autism Association (NAA). They do vary in their approaches to some topics. For example, TACA and Generation Rescue put more resources into direct contact with families than, say, SafeMinds. But, when it comes to lobbying about vaccines, they are pretty much a single organization, sharing a significant amount of key personnel.

These organizations are represented on the IACC by Lyn Redwood of SafeMinds. The grassroots activist efforts of the organizations is coordinated through their blog, the Age of Autism. It is a particularly clever and effective construct: the advocacy organizations can claim to be separate from the particularly nasty rhetoric of their own blog. As a separate entity, the finances of the Age of Autism blog will not be made public.

That all said, the Age of Autism should be considered the voice of these organizations and the actions coordinated on that blog are the actions of its parent organizations.

I can understand why groups such as SafeMinds or Generation Rescue would want to be able to claim some distance from the Age of Autism (AoA). AoA is used to coordinate serious intimidation efforts.

The recent departure of Dr. Story Landis from the IACC was engineered by AoA
. They found notes made during an IACC meeting and planned a surprise attack to coincide with an IACC meeting. As an ironic twist, AoA got someone sympathetic to their cause to resign the IACC.

AoA has also targeted IACC member Yvette M. Janvier, M.D., twisting her words “the idea that autistic kids are sick offends me!” into “I am offended by sick autistic kids”.

AoA launched an attack on IACC coordinator Joyce Chung. This coincided with a week long IACC meeting to iron out the Strategic Plan. Her “crime”? She is married to Richard Grinker, author of Unstrange Minds. Dr. Grinker is public in his belief that there has not been an epidemic of vaccine-induced autism, a belief held by the vast majority of the autism research community. What does Dr. Chung have to say publicly on the subject? Nothing as far as I can see. What actions did she take that warranted an attack? None.

The good people at AoA have attempted legal intimidation as well. They got a Congressional Oversight Committee to investigate the IACC. When that didn’t pan out, they sought “legal advice” on alleged FACA violations. No word on what, if anything, became of that effort either. The Age of Autism isn’t shy about touting their attacks. It would seem safe to assume this one failed.

AoA has recently set their sights on the IACC’s chair, Dr. Tom Insel. I am sure this came as no surprise to Dr. Insel. Earlier this year he called for a re-vote on a proposal to add a vaccine study to the IACC’s Strategic Plan, and later made public statements in a congressional hearing that there wasn’t enough data to warrant a vaccine-autism study.

Other than being bold enough to discuss the view held by the vast majority of autism researchers, what is Dr. Insel’s greatest crime? His brother invented a vaccine. Yes, Dr. Richard Insel helped develop a vaccine for Haemophilus influenza B (Hib). This vaccine has been quite effective in reducing Hib infections. But, any contact with vaccine research or company is considered a fatal conflict of interest to the bloggers at the Age of Autism.

I’m sure that there is more going on behind the scenes.

If this were all to the story, it would be sad but uninteresting. Unfortunately, there is fallout from all of this intimidation. I already know that good researchers have avoided autism as a subject in order to avoid the groups represented by the Age of Autism. I suspect that good people are avoiding participating in the IACC meetings as well. But, the most direct fallout is that the IACC members are unable to speak their minds on the subject of vaccines. Beyond vaccines, they have to live in fear of any possible infraction of the rules or any statement that could be misinterpreted will be used against them. A prime example was given above where “the idea that autistic kids are sick offends me!” was warped into “I am offended by sick autistic kids”.

If this were some minor, make-work bureaucratic committee with no real impact I wouldn’t care. But this is the group that sets the plan for the largest autism research in the world. Not only is this sort of intimidation a crime in general, it is hurting my kid’s chances at a better life.

It is time for the intimidation to stop. The Age of Autism bloggers should learn a lesson from their recent, childish attack. Acting out without thinking can hurt even them. This event is being noticed. Both the journals Nature and Science have blog posts about this recent debacle. The Simons Foundation interviewed the director of the NIH on the subject.

I’ll say it again: it is time for the intimidation to stop.

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27 Responses to “It’s time to stop the intimidation tactics towards the IACC”

  1. Vindaloo October 21, 2009 at 11:52 #

    I used to think that these AoA fanatics were just a handful of scientifically illiterate extremists with a serious axe to grind.

    I’ve come to the realization that they’re actually just a handful of scientifically illiterate extremists with a serious axe to grind who also have vested interests in the bathtub chemist industry.

    AoA extremists like Lynnette Redwood do not represent the Autism community nor do they represent the average parent of autistic children.

  2. MJ October 21, 2009 at 17:13 #

    Sullivan, what have you been smoking? Your writing used to be at least thought provoking but as of late you seem to going for just bizarre.

    Holding public figures accountable for their actions and words is intimidation? On what planet?

    Just a suggestion, if you have to twist reality to the breaking point in order to fit your world view perhaps you should give reality a break and just adjust your world view.

    • Sullivan October 21, 2009 at 18:02 #

      Just a suggestion, if you have to twist reality to the breaking point in order to fit your world view perhaps you should give reality a break and just adjust your world view.

      MJ,

      I’ve seen a load of ironic statements in the last 24 hours. I’ll add yours to the pile.

  3. Leila October 21, 2009 at 18:35 #

    Brilliant post, and I sign under everything you said here. I don’t think AoA will stop their intimidation tactics, however I hope that we won’t have more people resigning from the IACC or any key positions in autism research due to the pressure from those thugs.

  4. Mike Stanton October 21, 2009 at 19:30 #

    MJ is being disingenuous. Public servants who sit on IACC cannot being being held to account by external bodies. Is there a mechanism for autism constituencies to nominate or remove committee members? Of course not. IACC is accountable to the government and ought to be able to get on with its job without the constant sniping from the anti-vaccination movement.

  5. MJ October 21, 2009 at 22:52 #

    Mike, I believe you are are resident of the UK, correct? It doesn’t really matter but you seem to be confused about how these things work.

    Every public servant who sits on a governmental committee in the U.S. can, should, and must be held accountable for their actions. To suggest otherwise is absurd on its face. This is civics 101.

    The mechanism is that we complain to our elected officials, whether executive or legislative, and if they get enough complaints they will take action.

  6. MJ October 21, 2009 at 22:54 #

    Sullivan, you said – “I’ve seen a load of ironic statements in the last 24 hours”

    Most of which you have written yourself?

  7. Mike Stanton October 21, 2009 at 23:32 #

    MJ
    accountable to whom? Public servants doing their job are accountable to their employer for the performance of their duties. IACC has a mix of public servants, technical experts and members of the public. Do the same rules apply to all these people pertaining to their conduct while at IACC meetings?

    If they are to be hounded by an unrepresentative mob they should have the right to respond in kind. Or else the mob should shut up.

  8. MJ October 22, 2009 at 00:11 #

    Mike – Which part of term “public servant” is confusing? Public servants in the US are accountable to the citizens of the country – we are their employer. If we don’t agree with their actions, it is our responsibility and duty to speak up.

    There is no member of the US government, at any level, that is beyond reproach or beyond accountability (well, maybe the former VP Dick Cheney, but he was a special case).

    I am not sure how much clearer I can say this – the members of the federal government work for the citizens of the US and are accountable to us for their actions.

  9. Sullivan October 22, 2009 at 00:34 #

    MJ,

    you have built up a huge straw man. No one thinks that government officials or people serving on government committees are unaccountable.

    If you want to keep stating the obvious, go ahead. Just don’t pretend like we disagree with you.

    There is a big gulf between holding someone accountable and using intimidation methods.

    There is also a big gulf between being smart about your actions and what the AoA blogger did. That is, unless you think the Age of Autism wants people who are openly discussing vaccine causation to quit.

  10. MJ October 22, 2009 at 01:17 #

    Sullivan – the only straw man here is yours. Mr. Stanton explicitly said that -

    “Public servants who sit on IACC cannot being being held to account by external bodies”

    and

    “accountable to whom? Public servants doing their job are accountable to their employer for the performance of their duties.”

    and

    “IACC is accountable to the government”

    Go back and read his comments. If you do you will see that he is disagreeing with what I am saying. You clearly get what I am saying, but I am not sure that he does.

    “There is a big gulf between holding someone accountable and using intimidation methods.”

    And there is an equally big gulf between criticizing the actions of a public servant and “intimidation methods”. If the members of AOA were stalking the committee members, or threatening their families (no Offit references, please), or threatening them with bodily harm, or pointing a gun at them, or any one of a thousand other direct actions that were “an expression of the intent to hurt or punish another”, then there would be “intimidation”.

    But that isn’t what they are doing – they are simply disagreeing with the actions of the committee and calling into question the motivation its members. And of course calling on the ones they don’t like to step down. None of this is intimidation.

    From what you are saying it seems like you thing AOA is starting its own mafia and demanding protection money.

    Whatever you are smoking, you may want to stop.

  11. Sullivan October 22, 2009 at 01:41 #

    MJ,

    let’s see–they got a government committee to mount a frivolous investigation. Prove me wrong–show me the results of the investigation.

    They threatened more legal action.

    That isn’t “simply disagreeing”.

    They found a note, supposedly written by an IACC member. Rather than approach the person, or someone else involved with the IACC, they timed a blog post to coincide with an IACC meeting.

    That was childish. Given the result, it was a stupid mistake.

    I don’t smoke. Thanks for the suggestion, though.

  12. MJ October 22, 2009 at 02:04 #

    Sullivan, you said -

    “let’s see—they got a government committee to mount a frivolous investigation. ”

    They had a concern about how the committee has acting. The proper channel for resolving this IS another government committee. You may want to label it “frivolous” because you don’t agree with it and there was no outcome – but that doesn’t make it so.

    “They threatened more legal action.”

    It is a good thing that we never have to sue our government to do what it is supposed to. Oh wait, the ability to sue is part of the checks and balances built into our system of government. If we disagree with the actions of the executive branch and the legislative branch won’t do anything then we are SUPPOSED to turn to the judicial branch.

    “That isn’t “simply disagreeing”.”

    Sure it is – this is exactly how our system of government is designed to work. If you disagree with the actions of one of the branches of government and that branch doesn’t resolve the complaint, then you are supposed to try to get the other two branches to act as a check and balance.

    “They found a note, supposedly written by an IACC member. Rather than approach the person, or someone else involved with the IACC, they timed a blog post to coincide with an IACC meeting.”

    So? How is this intimidation? They aren’t FOX news so they don’t claim to be fair and balanced.

    “That was childish.”

    Possibly, but I think passing notes is slightly more childish.

    “Given the result, it was a stupid mistake”

    You really believe Dr. Landis’s explanation of her second comment? Wow, there is one born every minute.

    “Much of the rest of your comment is basically nonsense.”

    Well, at least you are moving beyond using the word bizarre. So is nonsense a step up or down from bizarre in your lexicon?

    “I don’t smoke. Thanks for the suggestion, though.”

    You sure? Some of the stuff you have been writing seems to have been done under the influence of something.

    • Sullivan October 22, 2009 at 16:10 #

      They had a concern about how the committee has acting. The proper channel for resolving this IS another government committee. You may want to label it “frivolous” because you don’t agree with it and there was no outcome – but that doesn’t make it so.

      I realize that I hace watched this unfold much closer than most people. But, I found comments by Kelli Ann Davis very informative. She noted that the investigation process was started before any problems were noted with the IACC.

      That is not an appropriate use of my tax dollars funding a government oversight body.

  13. Dedj October 22, 2009 at 02:15 #

    To recap:

    the appointment of Landis was heavily questioned, it was heavily implied that she was easily confused and in no way fit to hold the posistion she held. AoA may also have been complicit in the possible theft and misappropriation of public property, leading to the forced resignation of Landis.

    the appointment of Chung was heavily implied to be a conflict of interest.

    the non-appointment of Jepson was heavily criticised, with snide asides made about his replacements ‘dedication’.

    Insel has had his competance questioned and has been heavily implied to be corrupt. AoA has published an unsubstaniated rumour that he is openly discriminatory towards people with autism. AoA has stated that he has a conflict of interest.

    the processes of the IACC have been indirectly reffered to as ‘peculiar’ by at least one vaxx-skeptic friendly member.

    the IACC has been reffered to as a ‘sham’ on AoA.

    Thats just the work of three of the contributers. I’m sure the others have more.

    This isn’t ‘simply disagreeing’ even if it’s not intimidation.

    Not by a long shot.

  14. MJ October 22, 2009 at 04:30 #

    “AoA may also have been complicit in the possible theft and misappropriation of public property”

    What exactly do you think that they stole? The notes that were left behind by Dr. Landis? Don’t be absurd.

    “the processes of the IACC have been indirectly reffered to as ‘peculiar’ by at least one vaxx-skeptic friendly member.
    the IACC has been reffered to as a ‘sham’ on AoA.”

    Oh my god, they called them “perculiar” and a “sham”? Why aren’t these thugs behind bars by now? I mean if they used both words in a single sentence that would be like a death threat.

    “Insel has had his competance questioned and has been heavily implied to be corrupt.”

    A public official had their competence questioned and was said to be corrupt? That is completely unprecedented and never happens, expect for possibly EVERY SINGLE DAY.

    Give it a rest already, if you try to bend the reality any further you may possibly beat the large hadron collider in creating a black hole on Earth.

  15. Mike Stanton October 22, 2009 at 06:39 #

    MJ
    do you distinguish between federal employees and members of the federal government? The former work for the government and keep their jobs whoever is elected to office. The latter would include political appointees to run government departments who do change with a change of administration.

    All are accountable of course. But I would argue that there is a difference between the accountability of someone who works for the government and someone who is part of that government. It seems to me that doctors and scientists who serve on IACC belong in the former category and should not be treated like politicians. I referred to them as public servants. If that term is too ambiguous perhaps you can suggest another.

    Now it is true in one sense that all public servants, as I understand the term, are employed by the citizens of a country. But they are simultaneously citizens themselves. How do we balance their rights as citizens and their rights as employees alongside their duties and obligations?

    This is especially the case when they are asked to serve on a committee with mixed membership like IACC that has a set of duties imposed on it by law. To repeat my earlier question when I wrote:

    IACC has a mix of public servants, technical experts and members of the public. Do the same rules apply to all these people pertaining to their conduct while at IACC meetings?

    I would add this question. Do they all have an equal share in the responsibility for IACC successfully discharging its duties?

  16. Joseph October 22, 2009 at 13:30 #

    You really believe Dr. Landis’s explanation of her second comment? Wow, there is one born every minute.

    @MJ: There’s no need to believe the explanation. See this comment by Anne, which I guess you missed. Apparently Dr. Landis was the only member of the IACC (other than SafeMinds members) who was recommending a vaccinated/unvaccinated study.

    In retrospect, why would she care about what AoA thinks of her? Why would she call them the “autism community”?

  17. Dedj October 22, 2009 at 17:03 #

    “What exactly do you think that they stole? The notes that were left behind by Dr. Landis? Don’t be absurd.”

    As suggested in another thread, the passing of notes could have been an ethical violation of the applicable US Code, as all material is public (according to that person – although I pointed out that there is a massive exclusion list, and it has to be agency business to be included), this would therefore make any material generated by and from the meeting public property due for release through the appropriate channels.

    Any private individual who removed any document, regardless of significance, from the room without going through the appropriate channels, may be committing an act of theft.

    Remember, I’m not the one that came up with the absurd notion that the notes were public property, or public documents. That was all the creation of Dr Landis’ critics.

    I’m not sure what you think the rest of your needlessly sarcastic answer is all about.

    This isn’t about not having a legitimate right to complain, as you have already been told multiple times. This is not about individual words or complaints, as you have already been told.

    This is about whether the pattern (which you seem unable to see) of complaints, derogatory references, threats of legal action, use of legal action, implied and overt accusations of undisclosed COI’s, accusations of corruption, accusations of incompetance, accusations of favouritism, accusations of bigotry, and the like, is indicative of deliberate or modus operandi attempts at unduly influencing members of the IACC, or others associated with them.

    You haven’t even begun to recognise what this thread is even about. You have thus far failed to address the issue of what this pattern of behaviour by AoA indicates in terms of their intent.

    Do so, or get out.

  18. Sullivan October 22, 2009 at 18:57 #

    Holding people accountable is part of a free and democratic society. Don’t get me wrong.

    But, here is an example–The Committee on Science and Technology’s Oversight Subcommittee investigated the IACC. This was part of a “year long collaboration” between the committee, Generation Rescue and SafeMinds. That was a statement made in July of 2008, when the committee sent a letter to the IACC.
    http://www.ageofautism.com/2008/07/congressional-o.html

    The IACC in it’s present form held the first meeting in November of 2007. http://iacc.hhs.gov/events/

    In other words, GR and SafeMinds started the process to bring congressional investigative pressure to bear *before* the IACC went to work.

    That isn’t “holding people accountable”. That is intimidation.

  19. Roger Kulp October 22, 2009 at 19:26 #

    Is there a way to read what Dr.Janvier said in the original context?

  20. NightStorm October 22, 2009 at 20:16 #

    So let me get this straight since I have been hiding under a rock. Story Landis wants a “Vax/UnVax” study done, she is also on the “Vax=Autism” boat? What is AOA gripe with her? And why did she resign exactly?

    I a got a lot of muddled answers, I just want to be clarified on what the frak is going on.

  21. Dedj October 22, 2009 at 20:44 #

    “Is there a way to read what Dr.Janvier said in the original context?”

    Unfortunetly, not yet.

    We do not have enough context to determine what it was that Dr Janvier was responding to.

    That some people with autism may also have GI issues is not a surprise.

    That GI issues can affect presentation of autistic behaviours and the frequency of behaviours (no suprise given that some autistic behaviours are believed to be related to stress and anxiety) is not news and is no suprise, as it is no suprise for any source of pain and discomfort, as it is not a suprise in any client with any condition similar to or related to autism.

    That GI issues are intricately involved in the aetiology of autism is a claim that is not yet well supported in the general literature.

    The claim that people with autism are intrinsically physically sick and are autistic as a result of being sick is both unsupported in the general literature and can be seen as offensive, as it can be seen as reducing characteristics that are considered part of the personality when displayed in a neurotypical range into mere ‘signs and symptoms’ of an illness regardless of their personal value to the autistic person or their situational effectiveness.

    We do not know why Janvier got angry and offended.

    What we do know is that the comment quoted by AoA does not support the contention that she is offended by sick autistic kids.

  22. Sullivan October 22, 2009 at 21:03 #

    I don’t think we can stretch Dr. Landis’ remarks as actual support for the idea of autism being a vaccine injury. She appears to have been open to supporting research on the subject.

    She did want a coordinated effort between the IACC and the NVAC (National Vaccine Advisory Committee). She felt that the vaccine language was premature in the IACC Strategic Plan when it was inserted in there in December of last year.

    Keep in mind the fact that the vaccine initiatives were inserted into the strategic plan outside of the normal channels. The initiatives were not discussed by the science subcommittees.

    As another twist, Dr. Janvier–also targeted by the Age of Autism bloggers–noted in that January meeting that it wouldn’t be appropriate to push the vaccine/autism question onto NVAC, given the high level of parent concern. Yep, she wanted the IACC to address the issue. You won’t read that on AoA.

  23. Dedj October 22, 2009 at 21:04 #

    Nightstorm:

    Landis has supported calls for a vax/unvax study as supported by the links provided by Anna, as linked to be Joseph above. I’m not sure if this puts her in the anti-vaxx camp, as her calls were about looking at a broad range of outcome measures.

    AoA’s gripe with her is that she questioned whether Lyn Redwood was attempting to promote autism as a multisystem disorder to tie in with vaccine injury. This was taken as accusing parents of pretending thier children had been vaccine-injured in order to make money from suing the government.

    Her note is freely available from AoA, and clearly does not support any such interpretation.

    She basically resigned due to the stir the posting of her note caused. She was pretty clear that the notes were personal, taken out of context, and were interpreted beyond what she intended.
    http://leftbrainrightbrain.co.uk/?p=3326

  24. David N. Brown October 23, 2009 at 00:58 #

    Since AoA is trying to use government to pressure IACC, let’s turn the tables: Demand that Lee Silsby be placed under FDA jurisdiction.

Trackbacks/Pingbacks

  1. Facing Autism Disorders in New Brunswick: Neurodiversity Nonsense: lbrb Just Gets Weirder and Weirder - November 22, 2012

    [...] counted on to attack any parent or professional that does not share their ND ideology. With their latest howls about intimidation by the Age of Autism and various pro-cure organizations though they have just gotten weirder and [...]

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