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Perusing the IRS form 990’s for some autism organizations

18 Mar

How big are more outspoken autism organizations? How much do they support research? How much do they pay their executives? This became a big question about a year ago when it became public how much Autism Speaks pays their top people. Since the 2009 form 990 (IRS forms from non-profit organizations) are now public, I thought I’d take a quick look at some of the organizations out there. More importantly, we are in a tough financial time and charities get hit hard in recessions.

Autism Speaks

revenue: $45.5M down from $66.4M
Expenses: $43.6M down from $73.1M
Assets: $10.8M up from 8.9M

30 people listed as officers/directors.
14 people listed with salaries >$100k

Total salaries paid–$16.5M

Program services expenses:
$17,362,551 in research
$10,238,612 in awareness
$814,016 grants to families
$2,276,703 in other program service expenses

ratio of salary to program service expenses $16.5M/$30.7M=0.53

For those who want to know, Geraldine Dawson’s salary is $409,382. Very high, but also not as high as was reported last year. The previous year included many one-time expenses involved with her move to Autism Speaks.

Generation Rescue:

revenue: $641K down from $1,190k
expenses: $843k up from $745K
net assets $213k down from $445k

Salaries:
Stan Kurtz is now listed as “former” president. Salary: $129,167
Candace MacDonald: $100,000 in salary. Listed as president.

They spend about $19k on their website/year
biggest single expense (other than salary) is marketing, at $169k.

they list an expense of $729,340 for “GENERATION RESCUE PROVIDES EDUCATION, MEDICAL ASSISTANCE AND TREATMENT FOR CHILDREN WITH AUTISM SPECTRUM DISORDERS, DIRECTLY IMPROVING THE CHILD’S QUALITY OF LIFE FOR ALL FAMILIES IN NEED”

They spent $23k on research.

ratio of salary to program expenses: 364,686/729,340=0.50

The ratio of salary to program expenses is basically the same as for Autism Speaks.

National Autism Association (NAA)

revenue: $542K down from $595k
expenses: $696k up from $570K
net assets: $62K down from $216

no salaries for organization officers listed

15 people listed as officers/etc. (including Katie Wright, Dierdre Imus)

expenses:
$434k in “building a solid foundation” for the NAA. Public awareness, etc.
$75k in crisis support–direct support to families in case of disasters, deaths, etc.

ratio of salary to program service expenses: 134,511/509,232=0.26

The ratio of salary to program services is much lower than for Generation Rescue or Autism Speaks.

SafeMinds

revenue: $196K down from $24k
expenses: $126k down from $179K
net assets: $187K up from $117k

no salaries for organization officers listed
14 people listed as officers/members

Expenses
$41K in research
$31k in website/PR
$23k for conferences
$15k to the Age of Autism
$29k to Thoughtful house

ratio of salary to program service expenses: 0/96,016=0.0

This is the only group with a zero ratio.

TACA (Talk About Curing Autism)

revenue: $841K up from $780k
expenses: $912k up from $847k
net assets: $477K down from $532k

4 people listed as board members/etc
One compensated, at $44k/year

expenses
$349,565. Meetings/conferences/seminars for parent education
$135,753. Print and electronic publications
$99,472. direct financial support to families

ratio of salary to program service expenses: 320,442/586,12 4=0.55

This is similar to Autism Speaks and Generation Rescue.

Checking a few figures.

First, it was claimed a while back that the National Autism Association had thousands of dues paying members. The lowest dues level for the NAA is $35/year. The amount of dues collected was $12,465. This suggests a maximum of 356 dues paying members.

Second, the $15k payment to the Age of Autism intrigued me. Age of Autism portrays itself as an autism organization in advocacy efforts. They are not, however, a charitable organization. The Age of Autism is a limited liability corporation registered to Dan Olmsted. Because of this, financial records are not public. But we can attempt an estimate with public information:

Age of Autism has 4 sponsors listed on their website. (SafeMinds, Generation Rescue, the National Autism Association and TACA). Assuming that all 4 are paying $15k per year, this would mean $60k/year from sponsors. In addition, they received advertising revenue. A link on the top of the Age of Autism blog takes you to where you can see advertising rates. AoA has two types of ads, leaderboard ads (at $10/day) and sidebar ads (varying from $25/week with no image to $250/week for a large ad with picture). They have no leaderboard right now, but 6 sidebar ads. Using an estimate average of $210/week based on the sizes I see (and the fact that this divides easily by 7), that gives $30/day per sidebar. I am assuming that the ads for the books are gratis. If they fill the leaderboard ad, AoA could be getting $190/day from advertisements. 365 days of that gives $69,350. Together with sponsorship, the Age of Autism is bringing in an estimated $129,350 a year. They have to pay for hosting, but they also get donations. They do not specify how the money is distributed.

Just how big is the National Autism Association anyway?

29 Apr

The Interagency Autism Coordinating Committee (IACC) is meeting tomorrow. On the agenda is “Welcome and Introductions of IACC Members”.

It is no secret that many groups have wanted a seat at the IACC table. Autism Speaks was previously represented by Alison Singer, but she left Autism Speaks to form her own organization, the Autism Science Foundation. The vaccine-causation groups have been very interested in increasing their presence on the IACC. Currently, they are represented by Lyn Redwood of SafeMinds. But, Generation Rescue and the National Autism Association and, I assume, TACA would like to have membership on the Committee.

In a recent blog piece discussing the IACC, Katie Wright, board member for the National Autism Association and Generation Rescue, pointed out the broad membership base of the NAA and TACA. Further, she stresses the importance of a “significant public constituency”

The National Autism Association, representing 12,000 dues paying parents and TACA representing 17,000 parents implored Dr. Collins to assign these organizations seats on IACC. Of the 19 members on the committee, only 3, Lyn Redwood, Lee Grossman and Stephen Shore represent a significant public constituency.

To me, the message seemed clear. The NAA or TACA should be on the IACC because they are so big. They represent such a large base of support.

I’ve been reading about how these groups represent “thousands” or “tens of thousands” of families for some time. The statements are always unsupported, so I tend to give them little weight. But when I read the above statemen, I spotted the phrase “dues paying”. To me, that reads as “a fact I can check”.

So I pulled the 990 forms for the NAA. 990 forms are the tax forms that charitable organizations file in the US, and they are made public, albeit after a couple of years.

The 2008 form 990 shows under “membership dues” that the NAA took in $17,640.

Membership dues to the NAA is $35/year for an individual, $60 for a family. This was the same in 2008.

Taking the $35 value, that gives a membership for the NAA of 504 (an upper bound estimate). Very respectable. Not 12,000, though. Perhaps they’ve had a major membership boom since 2008. Perhaps I misunderstood something. But, this fact check would suggest that the 12,000 claim for the NAA’s membership is, perhaps, somewhat high.

Maybe 2008 was a bad year for the NAA? Checking the other Form 990’s for the NAA gives the following amounts for dues collected:

2006: $14,950
2007: $22,592
2008: $17,640

Hmmm. Looks like they may have peaked in 2007.

Perhaps there are a number of dues paying members in the NAA chapter. Guidestar shows a number of these NAA chapters. The few I checked (like the Northeast Ohio chapter) report no dues.

I’m open to being corrected, with proof. But, for now, it looks to this observer that the National Autism Association membership is much less than the 12,000 claimed.

Whether the size is important, that is a discussion for another post.

Did TACA change the rules to deny a blogger attendance at a conference?

27 Feb

Two years ago, AutismNewsBeat was Expelled! from an autism “conference” (AutismOne). Today, he was denied admission to the TACA Real Help Now Conference in Wisconsin.

TACA’s stated policy on the website is:

TACA strives to ensure that the focus of our conference is education and support, and to provide a safe, supportive environment for our attendees. TACA reserves the right to refuse admittance to any individual.

But this seems to be a new addition to the website. The Google Cache version of that page, from February 11, doesn’t have that language at all.

Two years ago, AutismNewsBeat attended a conference and did what many other parents were doing: he videotaped.

That didn’t get him thrown out (although it was used as the excuse for why he was thrown out)

What got him thrown out was asking an important question in a respectful manner:

I also attended a Q&A with Dr. Jon Poling, MD, PhD, and his wife, Terry. The Polings have been on a media blitzkrieg since March when they were identified as test case petitioners in the Vaccine Omnibus hearings. The details of the case are shrouded in speculation, since the Polings have not publicly released their daughter’s relevant medical records. I asked the Polings if they plan to release those records soon. Terry Poling said she and her husband would not discuss their daughter’s case as long as there was ongoing litigation.

Soon after I asked my question, a hotel security official asked me to turn off my video camera. At the conclusion of the Q&A, 15 minutes later, I was surrounded by hotel security and escorted out of the building. I had registered six weeks earlier as media, and received a confirming email. I was handed a press pass and told to fill it out myself at the registration desk Friday morning, after being told the computer system was down and my name could not be pulled up. But the conference organizers were having none of it, although by now Westin security no doubt realizes I was totally truthful and cooperative, even turning over my driver’s license for photocopying.

The story as to why AutismNewsBeat was expelled has changed over time.

The first was that I had snuck into the gathering without registering. When conference organizer Ed Arranga realized that I was indeed registered, the story changed to “you broke your agreement not to videotape any of the meetings.” There was, of course, no such agreement, and no evidence of such an agreement. I filmed openly for two days without incident, as were dozens of other parents, not to mention film crews from local television stations. So that couldn’t be it either.

So, now he has been denied entry to a conference for a reason which may not have been in effect when he registered.

It should be noted that after AutismOne, AutismNewsBeat did what many people have done before: he posted his videos to YouTube. Videos such as this one from an autism and the media session.

Perhaps AutismNewsBeat breaks the unwritten code: don’t expose those parts of the autism parent conventions that are best kept behind closed doors.

With the facts against them Dr. Wakefield’s supporters appeal to emotion

3 Feb

I should stop being shocked and amazed at how little groups like the Age of Autism blog think of their readership. Sorry to put it so bluntly, but it is pretty clear that they expect us all to just read what they have to say and never go to the original sources and think for ourselves.

Case in point, the GMC hearing on Dr. Andrew Wakefield. Dr. Wakefield was guilty of ethical violations in the treatment of his disabled patients. Not once, not twice but many many times. But you wouldn’t know that to read some of the reports on the blogs and even a couple in newspapers.

We have the NAA SafeMinds and TACA telling us all about how bad this ruling is. We have been told that there was “false testimony”.

OK, take a look at the actual charges. Just for a moment. Here are a few examples

1) Dr. Wakefield took money from the Legal Aid Board (LAB) for procedures paid by the NHS. He then diverted some of the LAB money to other projects.

2) Dr. Wakefield got ethical permission to do his study in December 1996, only on patients enrolled after that date. However, he had already started research on children. Here are two examples:

Child 2 had an MRI, colonoscopy and lumbar puncture in September of 1996.

Child 1 was also a research subject without ethical approval. Tests were performed which were not in the clinical interests of the child.

3) For people who promote the myth that “the only thing he did was start early”, note that Dr. Wakefield’s team did invasive tests that were not called for. For example:

Child 3 was also a research subject without ethical approval, having started before the approval. He underwent a lumbar puncture even though: “The Panel has taken into account the fact that there is no evidence in Child 3’s clinical notes to indicate that a lumbar puncture was required.”

Was this the result of some “false testimony? According to the GMC ruling, experts on both sides stated that the lumbar puncture was not clinically indicated.

Experts on both sides, Professor Rutter and Dr Thomas both considered that such a test was not clinically indicated.

Dr. Thomas is not accused by the defenders of Wakefield as “giving false testimony”.

The above are only a few of the examples of clear misconduct on the part of Dr. Wakefield.

How many times must a man be found guilty of not doing what was in his patients’ clinical interests before we are allowed to consider him as, well, someone who doesn’t always put his patient’s clinical interests first?

Kim Stagliano has taken to the Huffington Post with “The Censorship of Autism Treatment“. No mention of the actual charges. No mention of the fact that Andrew Wakefield was guilty. No mention of the fact that Andrew Wakefield’s research efforts for the past 12 years have centered on repairing his own damaged reputation, not on autism treatment.

Can you find a single mention of the word “ethics” in her post? How about any comment about the actual charges levied against Dr. Wakefield?

You know you are in trouble just with the title from this story: MMR doc’s just guilty of caring . At least that article makes one clear statement:

It [the GMC ruling] focused on the methods of research used, some of which were undoubtedly questionable, but which were performed in the name of finding solace for desperate parents convinced their children had changed for ever following their one-size-fits-all MMR injection.

Yes, you can be unethical if you are “finding solace for desperate parents”.

A blog post by the National Autism Association stated:

“Many parents of children with autism view the GMC investigation as little more than character assassination of a physician brave enough to investigate controversial issues”

Well, not this parent. Anyone who paints the GMC investigation as “character assassination” didn’t read the ruling. Seriously, trying to dismiss this fact-filled ruling as “character assassination” is just plain bizarre.

another post comments, discussing the work Dr. Wakefield’s team performed on his study subjects:

the procedures involved were routine

and

No children were harmed and no parent or guardian has complained about the care these three men provided.

Lumbar punctures are hardly “routine”. Further, there is no reason to do them if not clinically indicated. Colonoscopies are not routine, especially in patients whose symptoms don’t warrant them. Say, as in Child 1.

One child suffered a perforated bowel (in 12 places!). His family won a lawsuit against the Royal Free hospital.

High Court papers alleged that the colonoscopy procedure performed on Jack in 1998 was ‘not clinically indicated or justified’. They also claimed the ‘principal reason’ for the surgery was to further research into links between autism and bowel conditions rather than Jack’s clinical needs.

How does that not count as not “harmed”? Is it because he wasn’t one of the original 12 from the study in The Lancet?

The behavior of the Wakefield supporters is totally predictable. They have no science. They have no first (or second) tier researchers. They rely heavily on Dr. Wakefield. Who else has the perceived stature of Dr. Wakefield for them? When Brian Deer broke the story that Dr. Wakefield may have “fixed” data in his study last year, there was an immediate reaction from the Wakefield supporters: give him faux awards! Make him the keynote speaker at their conventions!

For the past year the message has been “Dr. Wakefield has not been discredited”. They’ve lost that now.

We’ve been warned that they are bringing out their big guns. Yes, David Kirby will blog about this on the Huffington Post. With apologies to Mr. Kirby, but when he’s their “ace in the hole”, you know they don’t have much.

As I finished this, David Kirby came up with his post: “The Lancet Retraction Changes Nothing”. Joining in the style of the times, Mr. Kirby also ignores the actual GMC ruling. Nothing that actually defends Dr. Wakefield against the real charges.

Seriously, go read for yourself. It’s David Kirby with his usual talking points and straw men.

I hope David Kirby is wrong. I hope that things have changed. I hope that the future is a world where the loudest voices in the autism communities fight for a better life for autistics, rather than for a political goal of recognition for bad science, badly done.

I hope.

How Anti-Vaccine ‘Science’ Holds Back Credible Research

4 Jan

An expert panel says there’s no rigorous evidence that digestive problems are more common in children with autism compared to other children, or that special diets work, contrary to claims by celebrities and vaccine naysayers.

This is a totally non contentious piece of work. The panel examined all _credible_ research into the subject and decided there simply wasn’t anything available to support the idea of a things such as autistic entercolitis – a faux syndrome pushed by the section of autism anti vaxxers who believe Andrew Wakefields fake science.

Take careful note though of what they are saying:

1) That there’s no credible evidence. Parental anecdote is not credible evidence.
2) Thats autistic children may well have gut issues and that if they do they should be treated medically.
3) That special diets show no eficacy in _treating autism_ .

The issue for me therefore is that when autistic kids have gut issues they need to be treated properly by medical staff. This means making appointments that allow for the special needs of autistic people (either first in the day or last in the day to avoid waits, quiet waiting rooms with appropriate distractions and most of all well trained staff who won’t say caustic things to parents).

A TACA representative is quoted as saying:

“I’m filled with hope after reading this report,” said Estepp of the support group Talk About Curing Autism. “I wish this report would have come out 10 years ago when my son was diagnosed.”

Ironically, TACA who support the work of Andrew Wakefield probably _could_ have had a report like this ten years ago if the work of Andrew Wakeild hadn’t been so heavily promoted by groups like TACA.

The new report says the existence of autistic enterocolitis “has not been established.” Buie said researchers and doctors have avoided digestive issues in autism because of their connection with Wakefield’s disputed research, which set off a backlash against vaccines that continues to this day.

Quite understandably, researchers didn’t want to get involved in a field tainted by a person like Wakefield and his demonstrably false and disproven idea that MMR causes or contributes to autism. If they did, when they came out with science that contradicted Wakefield they would be subject to the same sort of hate crimes currently perpetrated against numerous other scientists such as Paul Offit who has recieved death threats. Who would want that?

Quite simply – if people like Wakefield admit their error and then shut up, more science will be done that will reveal more results groups like TACA may well support.

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)

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.