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Autism Community “United in Expressing Our Disapproval” of the NIH Strategic Plan for Autism Research

RejectedEditor’s note: One core feature of the Combating Autism Act (CAA) was the requirement for the National Institutes of Health (NIH) to develop a strategic plan for autism research. Why? Because if the CAA was going to direct NIH to devote considerably more resources to the investigation of autism, then NIH needed to be held accountable for the coherence of its oversight of these resources and the effectiveness of that spending. In the last year, the Interagency Autism Coordinating Committee (IACC), headed up by Dr. Thomas Insel of the National Institute of Mental Health, has been working on completing a strategic plan for autism research. Recently, a draft plan had been circulated for public comment (HERE).

On Wednesday, a broad coalition of eleven autism groups, including the three autism organizations represented on the IACC (ASA, Autism Speaks and SafeMinds), and all four Age of Autism sponsors, distributed a joint letter to all the members of the IACC (most of which represent various federal agencies). This letter states that “as a community we are united in expressing our disapproval of the draft plan.”

The eleven organizations that signed the letter were:

Autism New Jersey (formerly COSAC)
Autism Research Institute (ARI)
Autism Society of America (ASA)
Autism Speaks
Generation Rescue
National Autism Association (NAA)
Organization for Autism Research (OAR)
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

Click below to read the letter. The link is HERE. 

November 12, 2008

RE: Concerns on Draft IACC Strategic Plan

Dear Members of the IACC:

The Combating Autism Act required the IACC to prepare a strategic plan for autism research in order to enhance the quality, effectiveness, and overall benefits of autism research spending within HHS agencies. While the 2008 planning activities reflect improvements relative to earlier Autism Matrix efforts, ultimately the draft plan and the planning process have fallen short. Autism advocates have identified a range of deficiencies and each may place priorities on different concerns. Nevertheless, as a community we are united in expressing our disapproval of the draft plan for the reasons outlined here.

(a) The plan fails to communicate a sense of urgency reflecting the alarming increase in
prevalence and autism as a national health emergency. The beginning pages of the plan should embody urgency and the critical need of the government to apply the resources to address a crisis situation.

(b) The plan fails to allocate commensurate resources. The CAA authorized $645 million
for NIH research over five years. The plan falls short by close to $200 million. Given the urgent situation, we consider the CAA allocation to be a minimum requirement for federal agencies and feel that even greater resources are needed.

(c) Research on the environment, gene-environment interaction, and treatment are
underrepresented in the draft plan. The plan should apply additional resources to these areas.

(d) Provisions for accountability and evaluation for the research spending are absent.
Adoption of oversight, review and evaluation mechanisms, such as an Autism Advisory Board and a Department of Defense grant review model, should be added to the plan.

(e) The planning process diminished the voices of important segments in the autism
community. Future activities related to the SP should ensure integral participation of the diverse community representing families and individuals with autism.
We ask that the IACC approve these specific action items: (a) adoption of amendments to the plan responsive to the above 5 concerns; (b) specification that research spending be at least the CAA minimum and establishment of a workgroup to be convened in January 2009 to develop recommendations to the IACC for increasing the research spending to at least that minimum and adding objectives which will bolster research on the environment, gene-environment and treatment; (c) inclusion of oversight provisions including an AAB and DOD-model review process; and (d) specification that oversight bodies and workgroups have strong and diverse community

Each day, decisions are being made on autism research by NIH and other federal agencies which are outside of the SP. It is imperative that the plan be improved in the areas noted above at the November 21, 2008 IACC meeting.


Autism New Jersey (formerly COSAC)
Autism Research Institute
Autism Society of America
Autism Speaks
Generation Rescue
National Autism Association
Organization for Autism Research (OAR)
Southwest Autism Research & Resource Center
Talk About Curing Autism (TACA)
Unlocking Autism

Cc Dr. Della Hann, NIMH



First off, thank you to the parents and organizations which have been watching over this process and actively doing salvage to prevent something worse than what we see now. I'm relatively new to this process but I have an inkling of what individuals have sacrificed for this and how grueling it is to just advocate for one's own effected kids, moreso for everyone else's.

I've been looking over the SP and noticed one thing right off the bat: whenever you see the term "core" or "core values" used every other paragraph, you're generally looking at a corporate writ. I believe it's one of those management seminar incantations designed to inspire cult-like loyalty and sacrifice from minions who are about to be refused cost-of-living wage increases. I was gaping at how many times the terms were used. Interesting. In any case, this document was written by bean counters.

Also, reading over the budget that someone here was good enough to seek out and report, it's not a big surprise that four times the funds are alotted to psychopharmaceutical studies than to research for "biomedical" interventions. The skew is obvious: the NIH never saw a psychotrope they didn't think was "safe and effective" for children. The NIMH site on autism even recommends drugs by brand name.

So far, our community has been able to retort to orthodox criticisms of diet, detox and supplements by pointing out that many of the psych drugs usually recommended for treatment of ASDs are sometimes "unapproved" or "untested for safety" on the target population. As the funding of drug studies is squeezed out of every budget created by the NIH and NIMH, we may have to come up with another retort. If the past is any guide, it seems likely the "research" will have positive findings for the drugs and not so positive findings for the alternative medical treatments.

So the community's demands for oversight on spending (and the research itself) are really needed. Maybe there's more hope to see some of these changes implemented with a new administration.

Kelli Ann Davis

Hey Kub:

What you're doing is great -- meeting with your Congressman and getting your feet wet! Trust me, we've all been there.

Personally, I've always been pretty much focused on the *national level* (although I did focus on the NC Attorney General for a few years when I first started out) and even then, I've been primarily focused on the *research related issues* vs. the *service related issues* and that's why I was heavily involved with CAA and IACC.

But thank goodness there are other individuals within our community who are *focused* on the local and state levels so we're able to *blanket* the issue on all fronts!

Working together -- all of us doing our small part -- is what's producing the *overall movement* that we’re seeing. There are just too many of us now and our combined efforts are creating critical mass in all areas of government, media, etc.

In regards to your writing, I think you're great!!! And I think you have a whole slew of other fans as well ;-)


Kub Marshman

Thank you. I've now ventured down the congressional road and have met with Congressman Joe Donnelly's (Indiana-District 2) district director and then was pointed towards a pleasant person named "Lauren" who works for Congressman Donnelly from D.C. To say I was naive regarding the process of speaking to your congressman about autism would be an understatement. If Stagmom approves I would love to write about the encounter. How does H.R. 1881 fit in with the CAA? What suggestions do you have to get our voice heard at the state level? Not My Man Mitch Daniels, gov of Indiana, will love to hear from me, I can feel it.

Barbara Fischkin

thank you for this.
The post/protest is warranted. Correct. And important!

I caught a few words of Leonard Lopate's segment on autism this afternoon. New York Public Radio, our local NPR affiliate. I could be wrong but it sounded like he was trying to lead his speakers to fess up about the extent of the epidemic and about the lack of support for parents when it comes to both education and health insurance.

Kelli Ann Davis

"My point is that I've been a good solder in our cause and have EARNED the right to be critical when MY leaders and MY organizations screw up."


Sorry, but you don't have any *right* to be critical of me on a public forum, period. I'm doing what I think is best for my son --first and foremost -- and so is every other parent that is advocating for their child.

We are *NEVER* all going to agree on strategies/approaches and that is why there are multiple groups. So, you have a choice: 1.) Either connect with a group that shares your approach or 2.) Start your own group.


"Will this letter have any bearing on this?"

This is a pretty strong consensus letter and the fact that AS and ASA signed on is no small feat (trust me on that one) and so it's about as powerful as it gets in presenting a *united front*.

Plus, there are other *behind the scenes* pushes that we also are working on to try and correct this whole debacle.


Great idea on sending out info to Congressional offices. Thanks.

And then of course, last but not least...


Murse!!!! Totally classic video. And as the saying goes...."I rest my case."

But I gotta say -- I don't think Craig's gonna be letting you back into the club anytime soon after this latest, juicy video. Just call it a *hunch* ;-)


Will this letter have any bearing on this? I would think it would but is it too late at this point to change the current funding? Is there anything we can do right now to help change this?


Ben's Dad

....$128,000,000 - NIH est 2009 autism research spending
$35,000,000,000 - Annual estimated autism costs (Ganz, 2006 Harvard)

A 0.37% research to cost ratio.

(other estimates go as high as $90 billion/yr, increasing to $300-400 billion/yr in 10 years)

Does anyone not see a problem with these ratios?

For economic reasons alone, we should be investing 10 times what we currently spend on research in order to avoid spending $35 billion a year. A discovery leading to a 1% improvement would save more than 2 ½ times what we currently spend. Imagine if we made real progress.

This CAA is what it is, a huge improvement, much appreciated, but still vastly inadequate. We need to get what we can out of the CAA, but start over with this new government. Hey don't think of us as autism parents, think of us as economists!

That missing $200 million – is that getting spent on non-autism categories?


"My point is that I've been a good solder in our cause and have EARNED the right to be critical when MY leaders and MY organizations screw up.
PS: And I think I've earned a little respect too."

No doubt. I think I've seen your TV spots on line. Kudos. But there is a big difference between accusing someone of "screwing up" (being critical) vs telling them they're actions are "obscene" or that they "sold out" (granted - not your words - but that sentiment was posted as well)

Deborah might also be another very politically active warrior - and mad as hell is something everyone understands - but in an age where politicos and bureaucrats twiddle their thumbs while watching our kids go up in smoke, these people are fighting on just like you. We may question their techniques, their rationale, their direction, even their results, but not their motives, which is what "selling out" calls into question specifically. I just think that went over the top. Just my 2c, fwiw...


Let's see...since 2000 I've attended the marches, faxed and written my legislators, spent hundreds of hours on the phone and computer helping "newbies", donated numerous (over 50 - David you still owe me a beer) EOH books, paid my dues, done four local TV reports about autism, worn out my "autistic" t-shirts, etc. My point is that I've been a good solder in our cause and have EARNED the right to be critical when MY leaders and MY organizations screw up. And that's exactly what they did. Rewriting history I can tolerate...repeating it, I CANNOT.


PS: And I think I've earned a little respect too.

Doreen Carlson

If we object - NIH will know they are on the right track! As long as they stay away from the convincing evidence the autism community offers, they will be fine. How do you think they have gone 5 decades funding Type II Diabetes research without a CAUSE in sight?


Any political strategy can be argued till the cows come home. And the stakes are high of course. But suggesting that any of these groups are "obscene" or that they "sold anyone out" is just plain painful to read.

I'm outside of the US and have no skin in the CAA discussion - but I would kill to have half the courage and strength and determination - and skill - of any of the parents in these groups.

Kelli - I think the club is going to permanently blacklist me after this - but if I can borrow and bend the Budweiser tagline, all I can say is "for all you do, this Murse is for you"....


*Let Your Legislator Know About This*

Coming off the Congressional Briefing we still have a lot of momentum. The breifing was recent enough that we should still be able to easily get their attention.

The offices that I have developed relationships with have asked me to keep them posted on the federal activities and any committee actions in the house or senate. They can't keep up with every committee and/or NIH action on their own. We need to be putting these concerns in front of them. This type of information sheould give them the needed context that will allow them to understand the tone of frustration they sense from our community.

I emailed a Consressional and Senate Office this morning and got an immediate response from both. If you don't have a persons name in your legislators offices, call and ask who to send it to. Use the general email as a last resort. It takes days or weeks for those emails to be read.

Here's the email I sent, (Note) I including three other relevent articles concerning the actions of the IACC to give them further context:


I wanted to make your office aware of this letter from 11 Autism Organizations. The letter outlines concerns regarding the NIH's IACC Draft Strategic Plan for Autism Research which is a feature of the Combating Autism Act. I have also listed three other recent articles discussing concerns regarding the actions of this committee. This is something I think the H.E.L.P. Committee should be aware of.

The letter is addressed to the Interagency Autism Coordinating Committee of the NIH. It is signed by;

Autism New Jersey (formerly COSAC)
Autism Research Institute (ARI)
Autism Society of America (ASA)
Autism Speaks
Generation Rescue
National Autism Association (NAA)
Organization for Autism Research (OAR)
Southwest Autism Research & Resource Center (SARRC)
Talk About Curing Autism (TACA)
Unlocking Autism

Other Recent Events Concerning the IACC

* Here's a previous piece covering concerns over how the IACC is working. NIMH Flip-Flops on Pivotal IACC Workgroup Meeting

* Congressional Oversight Committee Presses for Vaccine Research, "Today, the Subcommittee on Investigations and Oversight of the House Science and Technology Committee sent a letter (click HERE to see the letter) to Health and Human Services (HHS) Secretary Michael Leavitt asking for the Interagency Autism Coordinating Committee (IACC) to “promote a balanced research portfolio when examining the underlying causes for Autism Spectrum Disorder (ASD)."

*An open letter to Thomas Insel of NIMH, From the editor, "I called Kelli Ann Davis, Generation Rescue’s Washington liaison, about the Interagency Autism Coordinating Committee’s implementation workgroup meeting last week. She told me she’d just written a letter about it to Thomas Insel, the committee’s chairman and director of the National Institute of Mental Health. She agreed to post it here as an open letter. Bottom line: She’s worried the IACC, which plans to study five possible environmental causes of autism, will not investigate vaccines — the environmental factor suspected by millions of Americans. Here is her letter."


I'm usually the first person to rip into Autism Speaks (Ok, maybe the second, a certain founder of a GR is first.) But I'd like nothing better than to see them turn that giant ship around and really start making life better for kids with autism AND work on prevention issues as well. God almighty, if America and Japan could be the kissing cousins we are today (how many of you drive a Toyota or Nissan?) after WWII, the autism groups can pull it together for the kids.


I find it rather encouraging that all these groups are standing united on this issue. I too would like things to move more quickly than they are -- but the wheels of government turn slowly. I think the fact that all these groups are together on this issue will help things move more quickly in the right direction.


KelliAnn -excellent points. You have worked hard to set things right. Thanks for "sp"

Kelli Ann Davis

Kathy, Charles and Deborah:

Like it or not, the NIH funds research – always has, always will.

Now, we can *sit around* and say nothing and *hope and pray* that the right research get done, or we can *step up to the plate* and make sure the RIGHT research gets done.

No organization “caved” in regards to the CAA -- in fact, we worked our butts off for a solid year to make sure the language that was in the ORIGINAL CAA was altered to reflect our concerns. And by the way, the biomedical community had absolutely NO input on the ORIGINAL version of the CAA and it was on course to get passed until organizations from our segment of the community HALTED it.

So, we spent the next year altering it and made major changes to it by inserting the best possible language in it, *and* we were able to influence Senators Enzi and Dodd to include the following in their floor statements:


The HELP Committee reported this bill without making the determination for the autism spectrum disorder research community of what are the “most promising areas” for investigation. Instead, the bill reported by the HELP Committee contemplates key research activities, including environmental research, that focus on a broad range of potential contributing factors, with meaningful public involvement and advice in setting the research agenda.

***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.


In our search for the cause of this growing developmental disability, we should close no doors on promising avenues of research.

***Through the Combating Autism Act, all biomedical research opportunities on ASD can be pursued, and they include environmental research examining potential links between vaccines, vaccine components and ASD.***

Let me ask you three a question: Do you honestly think those statements just *appeared* out of nowhere??

Personally, I could have thought of better ways to spend the summer of 06 but instead I decided to lend my voice to stopping a really bad bill from getting passed without major modifications. And, I did it on my own dime.

Now, what we are attempting to do is make sure that the officials at NIH (and other agencies) are FOLLOWING through on what Congress intended through CAA and we’re seeing a lot of *push back* which certainly doesn’t surprise me considering what’s at stake.

So again the choice: Do we sit here and complain and *do nothing* or do *ALL* of us do our part (like submitting public comments to the SP – strategic plan Jennifer) to make sure the environmental research within the CAA is DONE – including research on vaccines.

Here's my answer:

Bottom Line: Instead of dissing parents from the sidelines, I suggest each of youo do your own part to make sure environmental research is conducted by the NIH because the fact is – research dollars WILL BE SPENT and no amount of sticking your head in the sand is going to stop that from happening.

D.C. Political Liaison, Generation Rescue


What is truly obscene is the fact that the organizations that are suppose to represent us; the parents of this "autistic" community (i.e. A-Champ (or whatever they are calling themselves these days), NAA, ASA, basically the 11 organizations now bitching)refused to listen to us when we were bitching about this watered down do nothing bill. Well, when u except substandard then that's what you get. Especially when dealing with the government. You made your beds now lie in them.

Charles your "vote with your feet" comment is dead on. However, unlike you I did exactly that when the 11 sold out my son and family.

Maribel McIntyre

I am glad that somebody is doing the math.

On 2007, the IACC invested about $15 million dollars (12% of the ASD Research budget of $126 million dollar) on Characterization of ASD and Associated Genetics and another $20 million dollars (16% of total budget) on Genetics/Genomics. This is 28% of the total budget!

I was curious about the studies being funded by the IACC, so I asked for more detailed information. Below is some the information that I received form the NIH.

Just over 6 million dollars (5% or of the budget) was invested in the Environmental Influences. 11 studies were funded:
- Social Determinants of the Autism Epidemic - $805,000
- Environmental Ethiologies of Neurological Disorders - $10,602
- Center for Econogenetics and Environmental Health - $100,00
- A California population-based twin study of autism - $554,554
- The Charge study: Childhood autism risks from genetics and the environment - $1,031,807
- Epigenetic Interaction of the MECP2 and organic pollutants in neurodevelopment - $219,369
- Gene-Environment interactions in an autism birth cohort - $2,817,872
- Molecular and cellular toxicology - $99,330
- UC Davis Center Children's Environmental Health - $693,827
- Mercury-Induced Immune Dysfunction in Autism/ASD - $238,866
- UNC-CH Center for Environmental Health & Susceptibility - $100,864

There has been only one study funded to sudy the mechanisms and model systems of environmental influences.
- Viral Pathogenesis of neural and behavioral injury - $336,750

Lastly, the treatment area has received about $18 million dollars (or 14% of the budget). This area has been divided into 5 sub categories:
- Psychopharmacology (about $5 million dollars or 4% of the budget).
- Biomedical(just over $1 million dollars or 1% of total budget)
- Services Research($1.5 million dollars or 1% of total budget)
- Biomarkers for Treatment Response (only 1 study) total amount of $161,155 (about .001% of the total budget.

Yes! I am happy that someone else noticed!


Thanks, Mr. Moody, for posting the link to the 148 IACC comments. Though names were redacted, I can identify many of the authors -- especially one wingnut whose profanity does not further his cause.

Many commenters provided personal stories about vaccine injury. Some of those urging IACC to avoid the vaccine safety issue came off sounding rather... uh, shall we say... unscientific:

"Please do not fund any more research on vaccines and autism. This idea is a dead horse. It is beyond dead. It is a rotten, bloated, beaten to a quivering pulp of a stinking corpse of a horse. You don’t need to listen to hysterical parents, some of whom are outright liars, tell you about how their baby descended into the hell that is autism within minutes, days, weeks, or months following a vaccine."


Thanks Jim and Ben

just in case Jim's link got messed up because of the period at the end of the url.

Here is the link without the period

Jim Moody

You can read the draft strategic plan and the148 "public" [but names withheld] comments here: The IACC meets 11/21 and all can attend either in DC or by phone and webinar. Register here:

Ben's Dad

I believe this is the latest draft on the web from August08

By comparison, on the 2009 NIH funding estimates by Research/Disease Areas (2/5/08), autism ranks as the 106th priority, not that this should be a competition.


Vote with my feet.

When I served in the Navy in the late 1970s, times were very hard as our pay hadn't kept up with the high rate of inflation. When we complained to our leaders, we were told to shut up and "vote with your feet". In other words "don't re-enlist" and when President Carter realizes no one is available to sail his ships, he'll fix the pay problem.

When the autism organizations I’ve faithfully supported decided to cave in and support the “Pretending to Combat Autism Act”, I nearly “voted with my feet” but was urged by the leaders to shut up and have faith as we’ll fix the problem with the CAA later.

Well it’s “later” and I’ll certainly “vote with my feet” if the problem is not fixed. Please do not re-enlist with ANY autism organization which caves in on this. When they don’t have someone to raise their sails...

Kimberly Davis

I don't know if I'm impressed or alarmed that Autism Speaks is one of the organizations rejecting this plan.

Kathy Blanco

It's obscene that these people think they are helping our kids out...for whom are they working? For our kids, or for their large and spacious offshoot research (aka, long term employment) that doesn't give a rats behind about them?. When are we parents going to wake up, that the CDC and NIH and IOM and AAP are out mortal enemies? And the causal agents of this epidemic? Deal with the devil? No thanks....


Is there a link to the draft available?

Holly M.

Are we dancing around vaccines? Is environmental-gene suppose to mean vaccines? Why can't vaccines and autism be put in black and white? Are we playing their game?


way to make the CAA count for something. I think we're all at the point now of crossing our t's and dotting our i's to make sure that NO MORE TIME GETS WASTED in fundamental ways. GOod job you guys! What's the SP? I just had a glass of wine but I'm not sure what that is.

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