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Autism Speaks misleads the public on the IACC’s stance on vaccine research

12 Nov

Autism Speaks recently announced that the Interagency Autism Coordinating Committee (IACC) included vaccine research studies into the objectives of the Strategic Plan. I’m sure many people who read their press release are thinking that the vaccine-autism research will definitely be funded. But, is this accurate? The answer is no.

According to the press release and the Autism Speaks website:

Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research. The new language, approved unanimously, calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems. “This revised plan is an important step toward a more comprehensive approach to exploring the wide range of risk factors that may be contributing to autism,” said Geraldine Dawson, Ph.D., Autism Speaks chief science officer.

I’ve already noted that the statement Autism Speaks gave before the IACC was incorrect. Vaccine research was not a “clear directive” of the Combating Autism Act. You can check for yourself.

Alison Singer of the Autism Science Foundation, and member of the IACC, has a statement on the ASF blog, Autism Science Foundation Agrees with Decision to Keep Vaccine Research Out of the IACC Autism Plan.

The ASF blog notes:

Autism Science Foundation President and Interagency Autism Coordinating Committee member Alison Singer joined her colleagues on the IACC in voting to eliminate references in the autism strategic plan that could imply that vaccines cause autism or that call for additional vaccine research. “Draft materials submitted to the IACC suggesting vaccines and/or vaccine components were implicated in autism were rejected by the committee because the IACC determined that they were not based on good science,” said Singer. In addition, the two research objectives proposed that specifically called for additional vaccine research were not approved.

Also:

Singer added that some groups seem to be misinterpreting the inclusion of the word “vaccines” in the list of examples of immune challenges as a mandate for vaccine research, and have issued misleading statements. “Based on the votes taken yesterday, the IACC was clear in its position about autism and vaccines. But if there is public confusion about this new research objective then I will try to make sure we clarify it at our next meeting,” Singer said. The IACC will continue its work on the plan at a meeting on December 11, 2009 with the goal of finalizing the revised plan by January, 2010.

The entire statement can be read on the Autism Science Foundation’s blog.

It appears that Autism Speaks is placing a fairly major spin on a single action taken by the IACC. Again from the ASF blog:

The IACC also voted unanimously to add a new objective to study whether or not there are certain subpopulations that are more susceptible to environmental exposures such as immune challenges (including naturally occurring infection, vaccines, and/or immune disorders).

Compare that to the Autism Speaks announcement:

IACC Includes Vaccine Research Objective In Strategic Plan For Autism Research
Autism Speaks is Encouraged by New Language Recommending Funding of Vaccine Research

Or, worse yet, the first line of their press release: “Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research”

As I noted above, I am very confident that many people reading the announcement are expecting autism-vaccine research to be funded.

But this isn’t a “vaccine research objective”. This isn’t calling for “vaccine research studies”.

What it is, is an objective that mentions vaccines. It is a very important distinction. Take a close look, the objective does not call specifically for a vaccine project to be funded. It doesn’t even call for immune challenges to be funded. These are just listed as possible examples.

This is a small example of why the IACC needs to be very careful in how and if they discuss vaccines. Groups such as Autism Speaks can act incredibly irresponsibly in spinning any statement including the word vaccines.

Autism Speaks pushes the “legislative history” myth about the Combating Autism Act

11 Nov

Autism Speaks has announced (possibly incorrectly) that the IACC (Interagency Autism Coordinating Committee) has included vaccine language in the Strategic Plan.

Autism Speaks has posted their statement on their website.

Here is the statement (from their press release):

In enacting the Combating Autism Act (CAA), Congress intended that the federal government examine potential links between vaccines and autism. During the Senate debate over the CAA, Mike Enzi, Chairman of the Senate Health, Education, Labor & Pensions Committee, instructed that “no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder.” 152 Cong. Rec. S8772 (Aug. 3, 2006). In the House, Joe Barton, Chairman of the House Energy and Commerce Committee, was equally clear: “[T]he legislation rightfully calls for renewed efforts to study all possible causes of autism – including vaccines and other environmental causes… The important thing to understand is that there are no preconceived notions contained in this bill; the bill language is clear that we should follow every avenue that science opens to us in searching for a cure.” 152 Cong. Rec. H8787 (Dec. 6, 2006)

Beyond this clear directive of the CAA, Autism Speaks supports rigorous, evidence-based scientific research onto all aspects of autism from potential causes, including both genetic and environmental factors, to diagnosis and treatments. As such, we strongly urge that further vaccine safety research be included in the Strategic Plan for Autism Spectrum Disorder Research. Comprehensive “good” science should be the standard in all areas studied and there are aspects of vaccine safety research that have not yet been, and should be, considered.

It is also essential that all scientific research recommended by IACC and funded by the NIH be rigorous and evidence-based to engender the trust of the scientific, medical and entire autism community. Without a solid foundation that supports confidence in scientific conclusion, the entire portfolio of scientific research is at risk of losing community trust. Further, vaccine safety research will increase both the level of confidence in the safety of our nation’s vaccine program and the rate of participation, which is absolutely crucial for the prevention of serious infectious diseases.

Autism Speaks calls on the IACC to consider the importance of evidence-based science, trust, and to remain true to the critical legislative purpose of the Combating Autism Act and asks the IACC to include vaccine safety research in the strategic plan.

The statement that vaccine research is a “clear directive of the CAA” is, simply, false.

The CAA (Combating Autism Act) does not include the statements by congressman Barton and Senator Enzi are part of the congressional record. They are statements made by the individual legislators.

They are not a part of the Combating Autism Act, much less a clear directive of the Act.

IACC includes vaccine language in strategic plan?

11 Nov

I was unable to listen to yesterday’s meeting. But according to a press release from Autism Speaks:

Autism Speaks is encouraged by yesterday’s decision of the Interagency Autism Coordinating Committee (IACC) to include vaccine research studies in the objectives of the updated Strategic Plan for Autism Research. The new language, approved unanimously, calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems. “This revised plan is an important step toward a more comprehensive approach to exploring the wide range of risk factors that may be contributing to autism,” said Geraldine Dawson, Ph.D., Autism Speaks chief science officer.

IACC full committee meeting tomorrow

10 Nov

The Interagency Autism Coordinating Committee will be meeting tomorrow (November 10th) “to discuss recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorder Research.”

You can listen in with
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Here’s the agenda:

Time Event
8:30 Registration
9:00 Call to Order and Opening Remarks
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC
9:10 Public Comments
9:30 Approval of October 23, 2009 IACC Full Committee Minutes
9:40 Consideration of Strategies for Updating the Strategic Plan
Thomas Insel, M.D.
Director, National Institute of Mental Health and Chair, IACC

How much change to make to the current Strategic Plan?

Examples of Questions for Discussion:

* Will adding or significantly re-writing chapters be helpful or confusing to the research community? Does this vary by chapter?
* Will adding/deleting objectives each year be helpful or confusing to the research community? Does this vary by chapter?
* Should the update include progress from the portfolio analysis for each objective as an indicator of accountability? What will this mean if objectives are re-written or deleted?

9:50 IACC Discussion of Strategies for Updating the Strategic Plan
10:30 Break
10:45 Recommendations for Updating the Strategic Plan: Discussion and Votes

* Questions 1, 2, 3, 4, 5, 6 and Infrastructure Items

12:00 Lunch
1:00 Recommendations for Updating the Strategic Plan: Discussion and Votes – Continued
3:00 Break
3:15 Recommendations for Updating the Strategic Plan: Discussion and Votes – Continued
5:00 Closing Comments and Adjournment

Recovery Act Funds Support Strategic Goals for Autism Research

9 Nov

The National Institutes of Health were given a large amount of money as a part of the economic stimulus package.

I just got the email below from the NIH autism listserve and thought some people reading here would be interested:

_____________________________
The National Institutes of Health (NIH) awarded more than 50 autism research grants, totaling more than $65 million, which will be supported with American Recovery and Reinvestment Act (Recovery Act) funds. These grants are the result of the largest funding opportunity for research on autism spectrum disorders (ASD) to date, announced in March 2009.

Awards were based on the quality of the proposed study and how well it addressed short-term research objectives detailed in the Interagency Autism Coordinating Committee’s (IACC’s) Strategic Plan for Autism Spectrum Disorder Research.

“These studies currently hold the best promise of revealing what causes autism, how it might be prevented, what treatments are effective, and how service needs change across the lifespan-questions noted in the IACC strategic plan as critically important to improving the lives of people with ASD and their families. The Recovery Act funding makes it possible to do the type of innovative research necessary to find these answers more quickly,” said Thomas R. Insel, M.D., director of the National Institute of Mental Health (NIMH), part of NIH, and IACC chair.

Examples of awarded studies include:

· Catherine Lord, Ph.D., of the University of Michigan, and Somer Bishop, Ph.D., of the Children’s Hospital Medical Center in Cincinnati, will lead a two-site study to adapt the Autism Diagnostic Interview-Revised-the current gold standard for diagnosing autism-into a brief parent interview that can be done over the telephone. This new tool will help reduce research screening costs and help researchers to quickly identify potential participants for ASD studies.

· David Amaral, Ph.D., Sally Rogers, Ph.D., and Judy Van de Water, Ph.D., all of the University of California Davis, aim to expand on a previous pilot program to identify different subtypes of autism based on behavioral, biochemical, and brain imaging markers. This research may help improve future efforts to study, diagnose, and treat children based on their subtype of autism.

· Joseph Buxbaum, Ph.D., of Mount Sinai School of Medicine; Richard Gibbs, Ph.D., of Baylor College of Medicine; Gerard Schellenberg, Ph.D., of the University of Pennsylvania; James Sutcliffe, Ph.D., of Vanderbilt University; and Mark Daly, Ph.D., of the Broad Institute at MIT; will lead a collaborative network of research labs and centers using cutting-edge technologies to discover specific genes underlying autism. Their research will provide insight into the biology of autism and expose genes and pathways that constitute high priority targets for the development of novel treatments.

· Sally Rogers, Ph.D., and Laurie Vismara, Ph.D., both of the University of California Davis, aim to develop and test a parent-delivered preventive intervention for infants 6-11 months old who are at high risk of developing ASD because they have an older sibling with the disorder. The intervention will focus on reducing atypical behaviors and developmental delays to help lessen or prevent the disabling symptoms associated with ASD.

· Olga Solomon, Ph.D., of the University of Southern California, will lead a study on how race, gender, socio-economic status, family culture, and communication during clinical encounters affect the health care experiences of African American children with ASD in an urban setting. Such research may help reduce the existing disparities in ASD diagnosis and service delivery for this and possibly other underserved populations.

· Ruth Carper, Ph.D., of the University of California San Diego, seeks to fill a gap in scientific understanding of the effects of ASD in later life. By exploring age-related changes in cognition and possible protective factors, as well as the changing service needs and quality of life concerns among adults and older people with ASD, this project may reveal targets for intervention and inform public policy.

· Rob McConnell, M.D., of the University of Southern California, and colleagues will explore possible links between traffic-related air pollution and ASD risk. They will also examine genes that help process pollutants in the body among children with and without autism to determine how these genes may affect ASD risk.

· Steven Camarata, Ph.D., and Mark Thomas Wallace, Ph.D., both of Vanderbilt University, will evaluate the effects of “sensory integration treatment” on communication and social skills in children with ASD. Based on desensitization techniques, this widely used but little studied treatment is believed to help reduce children’s resistance to outside stimuli and improve the integration of sensory information.

In addition to the contributions of direct findings from these studies, much of the data will also be available to other researchers through the National Database for Autism Research (NDAR). As a tool for the autism research community to exchange research related information, this use of NDAR is likely to advance the understanding of ASD heterogeneity to a far greater degree and at a more rapid pace than would be possible through any single project.

The grants will be administered by the five NIH Institutes that currently fund autism research: the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Institute on Deafness and Other Communication Disorders (NIDCD), the National Institute of Environmental Health Sciences (NIEHS), and the National Institute of Neurological Disorders and Stroke (NINDS), with NIMH taking the lead on this effort and providing more than half of the total funds. This effort is included in the $5 billion in grant awards for biomedical research supported through the Recovery Act during FY 2009, as announced by President Obama during his visit to NIH on September 30, 2009.

Political abuse and the abuse of autism

5 Nov

“Political autism” has emerged again in a row within the European Union (EU). Despite taking Britain into the EEC (the forerunner of the EU) in 1973, the Conservatives have always been vulnerable to disputes between their pro-European wing and the euro-sceptics who are mistrustful of European federalism and keen to defend British independence. The Labour Party has comparable factions within its ranks.

Thus political leaders of both the main parties have always had to perform a tricky manoeuvre, demonstrating their European credentials to a business community that knows where its markets lie and appealing to an electorate, many of whom prefer to blame faceless European bureaucrats for all our ills. This has led to an inconsistent approach that causes exasperation amongst some of our European partners.

This came to a head again this week over the lack of commitment by the Conservative Party leadership to the European Union. According to the Guardian

Pierre Lellouche, France’s Europe minister, described as “pathetic” the Tories’ EU plans announced today, warning they would not succeed “for a minute”.

Giving vent to frustration across the EU, which has so far only been expressed in private, Lellouche – who said he was reflecting Nicolas Sarkozy’s “sadness and regret” – accused William Hague, the shadow foreign secretary, of a “bizarre autism” in their discussions.

He said: “They have one line and they just repeat one line. It is a very bizarre sense of autism.”

This is not the first time autism has been used as a term of abuse in politics. But the National Autistic Society launched an immediate complaint

Autism (including Asperger syndrome) is a serious, lifelong and disabling condition. Comments such as those attributed to Pierre Lellouche, France’s Europe Minister, in which he seemingly suggests the Conservative Party, and in particular, William Hague, demonstrate a bizarre sense of autism are therefore extremely unhelpful.
To use the terms ‘autism’ and ‘autistic’ in a derogatory or flippant manner can cause deep distress and hurt to people affected by the condition. The National Autistic Society (NAS) is keen to address this issue, in order that these terms are not used lightly, particularly by commentators or people in positions of power or influence.
Autism is much more common than most people think and affects over half a million people in the UK. To use the terms as a criticism, for dramatic effect or to try and gain political advantage only perpetuates the confusion and misunderstanding which people with autism have to cope with everyday. This is simply unacceptable and must stop.

Today’s Times ran with the story of Monsieur Lellouche’s apology.

France’s Europe Minister has expressed his deep regret at causing offence by calling the Conservative Party “autistic”, but also blamed a mis-translation for the furore today.

Pierre Lellouche said that he was voicing his real concern about the Tories’ Eurosceptic slide under David Cameron when he reproached the party for “a very bizarre sense of autism” in an interview with The Guardian.

He also called their hostility to the European Union “pathetic” and said that the party’s policies in the European Parliament had “castrated” them. Aside from the political row, the remarks were condemned by autism advocacy groups.

However, although the minister said today his remarks were “clumsy”, he claimed that the term, which is colloquially used in French to refer to a stubborn person who does not listen, is a common term of political abuse in France.

Leaving politics aside, this derogatory use of autism reflects some very primitive and harmful ideas that still hold sway in France. Two years ago I wrote about an abusive “treatment” known as “packing” that is still going on today

“A French treatment for autistic children with psychiatric problems which involves wrapping the patient in cold, wet sheets from head to foot is undergoing a clinical trial for the first time, which critics hope will see an end to the controversial practice.

The treatment, known as “packing”, involves wrapping a child in wet, refrigerated sheets in order to produce a feeling of bodily limitation and holding, before psychiatrically trained staff talk to the child about their feelings. Critics have called the procedure cruel, unproven and potentially dangerous, but its proponents say they have seen results.”

This cruel treatment has been condemned by advocates for neurodiversity and proponents of biomedical cures alike. I have made my feelings regarding Lorene Amet’s position on vaccines and biomedical treatments perfectly clear here and, more recently, here. But I agree with her that Packing is barbaric.

It is time that the French medical and educational systems came to grips with the reality of today’s autism. Placing autistic children in hospitals, under psychiatric surveillance, refusing their inclusion in proper educational systems, refusing their access to medical examination
and treatments, violating their human rights and dignity, and even worse still allowing interventions such as “packing” to be conducted in hospital settings is unhelpful and has to be stopped.

According to the Times French autism organizations have welcomed the NAS response and are equally condemnatory of the casual use of autism as a term of political abuse in France.

French autism groups said that the affair demonstrated how offensive was the current use of the term in French public discourse.

Patrick Sadoun, a member of the Sesame Autism Association, said: “The English are right to be shocked. I congratulate a country that reacts to this. I am horrified that French politicians, at the slightest occasion, call one another autistic.”

While autism is an acceptable term of abuse autistic people continue to be the victims of unacceptable physical and psychological abuse.

This post is also available on Action for Autism.

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IACC to hold extra conference call on risk factors and prevention tomorrow

3 Nov

This notice just in from the IACC email list:

At the request of members of the IACC, the Interagency Autism Coordinating Committee (IACC) Scientific Workshop Panel 3 will be holding a conference call tomorrow from 12:00 – 1:00 PM ET, Wednesday, November 4, 2009 to discuss the updating of Question 3 of the 2009 IACC Strategic Plan for Autism Spectrum Disorder Research.

The agenda for the conference call will include a discussion of recommendations for line edit changes for Question 3 of the IACC Strategic Plan – “When Should I Be Concerned?” which addresses ASD risk factors and prevention. The draft line edits will be discussed at the November 10, 2009 meeting of the IACC full committee.

This phone call will be open to the public via conference call lines. Members of the public who call-in will be able to listen, but will not be heard.

To access the conference call dial:

USA/Canada Phone Number: 1-888-455-2920
Access code: 1050786

The latest information about the call can be found at: http://iacc.hhs.gov/events/2009/iacc-scientific-workshop-conference-call-cont.shtml.

You received this announcement because you attended a previous meeting of the IACC or joined the IACC mailing list. We apologize for duplicate notices. For more information on this meeting, or the IACC, please visit http://iacc.hhs.gov/

The IACC also can now be found on Twitter (www.twitter.com/IACC_Autism).

Please note: Schedule subject to change.

Age of Autism: misquotes Story Landis…jumps to unsupported conclusion

2 Nov

When the Age of Autism reported on a note written by Story Landis, they added a word that dramatically colored what was said. I am left wondering why would AoA make such an clearly detectable misquote? Read on and you will see what I mean.

Take a look at the piece titled “Dr. Story Landis: Autism not a multi-symptom disease but a money making scheme?“. That whole “money making scheme” part is what got people riled up. But is it really supported by what was said?

Here’s a little screenshot of the Age of Autism blog post, if you don’t want to click through to their site:

Segment of post about Story Landis

Segment of post about Story Landis

I know this seems redundant, but here is what they quote Dr. Landis as saying:

“I wonder if Lyn Redwood is pushing autism as a multi-symptom disorder in order to feed into vaccine injury awards.”

Emphasis added by me.

Why add emphasis, you might ask? Because “awards” is not in what Dr. Landis wrote in that first line. Go ahead and check. Here’s the note, as downloaded from the of the Age of Autism blog.

“I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?

It is the second line that mentions awards:

Would be a good justification for looking at vaccine injured kids who have gotten awards.

The insertion isn’t a simple mistake–it is made twice in the same blog post. Here is the second place the mistake was made:

How could Landis imply that families are “trying to make” autism into a total body disease in order “to feed into vaccine injury awards.”

Neither section in the “quotes” is accurate. “Trying to make” isn’t in what Dr. Landis wrote, and, as we have just seen, “feed into vaccine injury awards” isn’t either.

Without the word “awards” added the meaning that the Age of Autism blog post tries to convey, heck, the title of the blog post–that Dr. Landis was speculating that this was a “money making scheme”–is unsupported.

Let’s dive into this a bit deeper. David Kirby, blogger at the Age of Autism and at the Huffington post did a very strange thing. In his piece he gets the correct quote from the note, doesn’t mention the mistake made at the age of autism, but still pushes the Age of Autism interpretation:

To many parents, it seemed that Dr. Landis suspected Redwood of “pushing” the study of these multisystem problems merely to boost the number of autism cases filed in vaccine court (the Vaccine Injury Compensation Program), and to increase their chances for victory. Judging by the comments on Age of Autism, those parents were profoundly offended by the implications of that interpretation.

I’m curious as to how Mr. Kirby came to the conclusion that Dr. Landis’ note was “merely to boost the number of autism cases filed in vaccine court” and “to increase their chances for victory”. Dr. Landis didn’t mention the court, the chances of victory…or even “awards” in the context that would support Mr. Kirby’s interpretation.

I’d be curious as to whether Mr. Kirby pointed out the mistakes to the Age of Autism blogger in question.

A casual observer might find it odd how Mr. Kirby corrected the quote and yet persisted in pushing (yes, I’ll use the term pushing) the interpretation based on the misquote. The same casual observer would find it especially odd, since Mr. Kirby was the one to publicly disclose Dr. Landis’ explanation of her comment:

The other part of my note addressed the fact that it is important for autism researchers to study the children who have been most profoundly affected by their response to vaccines. That in no way mitigates my sincere apology to the families who interpreted my note to be uncaring and disrespectful.

“The other part of my note” being “Would be a good justification for looking at vaccine injured kids who have gotten awards.”

If you can look at the quote fresh, consider this interpretation–the first sentence, “I wonder if Lyn Redwood is pushing autism as multisystem disorder to feed into vaccine injury?” is discussing the if autism as a multisystem disorder would feed into the *idea* of autism as a vaccine injury. The assertion that her comment referred to vaccine injury “awards” is at best speculation and, at worst, a pretty clear misquote. I could speculate on the motives of the Age of Autism blogger, but haven’t we just seen how dangerous it is to speculate on motives with little information?

note: I made some small edits for clarity shortly after publishing this.

IACC meeting November 10

29 Oct

The following is an announcement from the Interagency Autism Coordinating Committee (IACC)

The Interagency Autism Coordinating Committee (IACC) will be holding a Full Committee Meeting on Tuesday, November 10, 2009 from 9:00 AM – 5:00 PM ET at the National Institute of Mental Health (NIMH), Neuroscience Center, 6001 Executive Boulevard, in Rockville, MD.

The agenda for the meeting will include a discussion of recommendations for the annual update of the IACC Strategic Plan for Autism Spectrum Disorder Research.

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be available on a first come, first served basis, with expedited check-in for those who are pre-registered. Online pre-registration will be available. Please visit the IACC website for pre-registration information: http://www.iacc.hhs.gov/events/2009/full-committee-mtg-announcement-November10.shtml.

The meeting will be remotely accessible by videocast and conference call.

To access the conference call dial:

USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

The latest information about the meeting, including videocast information and online registration can be found at: http://iacc.hhs.gov/events/.

You received this announcement because you attended a previous meeting of the IACC or joined the IACC mailing list. We apologize for duplicate notices. For more information on this meeting, or the IACC, please visit http://iacc.hhs.gov/

The IACC also can now be found on Twitter (www.twitter.com/IACC_Autism).

Please note: Schedule subject to change.

You can call in for whatever amount of time you have available. Get the information firsthand.

The war on Tom Insel and the IACC

23 Oct

Tom Insel is director of the National Institute of Mental Health (NIMH) but he is better known to readers of this blog as the chair of the Interagency Autism Coordinating Committee. If you read other autism blogs, he’s probably very well known to you, as he has been the target of a concerted attack from the vaccines-cause-autism groups for a few months now. They even got the publicist, David Kirby, to take their battle to the public in a CBS interview.

Let me take a moment to make a side point. The vaccines-cause-autism groups (SafeMinds, Generation Rescue, the National Autism Association, Talk About Curing Autism (TACA)…I’m probably missing one or two), are basically a single consortium as evidenced by their single blog and their shared membership. I don’t see the need to treat them as separate entities. I really don’t see that they should be given multiple representations on the IACC.

I’ve been watching the IACC pretty closely for some time. I’ve also been watching the vaccines-cause-autism consortium. I’ve been watching the consortium build pressure against Dr. Insel.

One thing I’ve noticed: this level of pressure directed at Dr. Insel wasn’t always the case. Less than a year ago, Dr. Insel was not their target.

Take a look at one of the classic pieces of IACC intimidation: a piece called “Grinkers Stinker“. This is dated January, 2008. It was timed to coincide with a 4-day workshop that was the kick-off for the Strategic Plan process.

“Grinker’s Stinker” was a piece about the Dr. Joyce Chung, the former IACC coordinator. She is the wife of Prof. Roy Richard Grinker, anthropologist and author of the book Unstrange Minds. Dr. Grinker has publicly stated that he accepts the scientific consensus that vaccines did not cause an epidemic of autism. Dr. Chung has made no public statements (at least that I can find), but the lack of actual information about her or her opinions didn’t stop a blog post decrying her position on the IACC. From the blog post:

Does Joyce Chung agree with her husband? Did they ask her this question before she took the job?

Oddly, the last comment to that blog piece, by Generation Rescue’s “DC Liason” Kelli Ann Davis, starts with the question, “Can I suggest that we try and put an end to all the mudslinging?”

History has proven that, no, the Age of Autism can’t put an end to the mudslinging. Unfortunate, that.

Take a look at the blog post. There is no mention of Dr. Insel. No one decrying his “lack of leadership”, no one claiming “collusion” or “malfeasance”. None of the mudslinging terms currently used against members of the IACC, especially Dr. Insel. In fact, the first mention of Dr. Insel is in the comment by Ms. Davis. In her comment Ms. Davis suggests that Dr. Insel will be watching out for conflicts of interest.

Times certainly have changed. The Age of Autism likes to demonize those it disagrees with, and Dr. Insel certainly has been a recent target.

What happened?

Dr. Insel (a) had the IACC reconsider an initiative to call for a vaccine-autism study to be included in the Strategic Plan and (b) spoke before a congressional hearing about why vaccine/autism studies are not a high priority.

Not surprising to many of the readers here, I am sure, the vaccines-cause-autism consortium have a single issue (vaccines). As long as Dr. Insel’s position on vaccine/autism research, there was hope for the consortium and they left him alone. Once his current opinion formed and was public, he was public enemy number one. Yes, Dr. Paul Offit (vaccinologist and outspoken critic of the notion that vaccines cause autism) has been superseded.

Recently, Dan Olmsted (owner of the Age of Autism website) called for Dr. Insel to resign. Again, it boils down to the single issue: vaccines.

So, here we are. The vaccines-cause-autism consortium has declared war on Tom Insel for opposing their single-item agenda. If you think “war” is too strong a word, take it up with Mr. Olmsted. In referring to the recent incident where notes from an IACC member were made public:

…notes dropped on the floor (see the notes here) at the IACC, recovered by friendly forces and reported on our blog…

Yes, the Age of Autism people are “friendly forces”.

Here’s my perspective on Dr. Insel, for whatever it may be worth. He is the chair of the IACC. In my opinion, his role is to run the meetings and manage the staff. He should be getting good people in to serve on the IACC and the subcommittees and good people to consult on the topics that are discussed. Basically, his role is that of a facilitator–get good people together with the tools they need to do their job. He needs to be knowledgeable enough on the subject (autism) to do this.

You know what? Given the fact that his full time job is director of the NIMH, he’s actually done a pretty good job.

Is there room for improvement? Heck yeah. How about putting a greater emphasis on research into the needs of autistic adults? The majority of autistics are adults. And yet only 5% of the funding is being applied to this critical area.

But, of course, the squeaky wheels (the vaccines-cause-autism consortium in this case) get the grease. The squeaky wheels have been calling for research into environmental causes of autism. Tens of millions of dollars are being focused on this. Why are the squeaky wheels unhappy? Because the squeaky wheels didn’t really mean “environmental causes”. That was only a code word for vaccines.

This level of tension is not just sad. It is detrimental to the progress of the IACC. There are a lot of autistics, parents, professionals and organizations who are interested in working with the IACC. Why spend any more effort on the groups that have declared war?

(note, I made a number of changes in this piece shortly after publishing it)

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