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Not Much Happened on the Way to The (IACC) Forum


By Cathy Jameson

Last week, after listening to the Interagency Autism Coordinating Committee’s (IACC) meeting—but minus those in attendance who tirelessly offered their insight and efforts to treat and prevent the ever-growing autism epidemic, I walked away quite upset.  I shouldn’t have expected much, I know.  But, if you’ll remember I’m a dreamer.  I’m a hoper.  Most importantly, I’m a Mom who wants the help others avoid the negative side of autism—the kind that severely affects my son. 

So, against my better judgment, I gave the IACC another chance.  And why shouldn’t I; they claim they exist to help.  The IACC is “…a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services (HHS) concerning autism spectrum disorder (ASD). Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.” 

The IACC was established in 2006 when the autism rate was 1 in 110.  It came about with the enactment of the Combating Autism Act.  The key word in that sentence: combat.  Unless they’re using a different dictionary, combat means to fight against or to do away with.  With that in mind, you’d expect the agency, would actually work toward not just addressing but doing something about autism and its rising rate. 

Instead, meeting after meeting, and for far too long now, it feels like the IACC is still merely just talking about autism.  Anyone can have a conversation about autism.  I do on a daily basis.  But when I talk about it, I’m giving tips to parents on how to prevent it.  I’m sharing ideas with a therapist on how to treat it.  I’m also participating in action alerts on how to support practical changes to make affected children’s lives better.  I’m sharing real experiences peppered with practical solutions.

When I talk about autism I’m not tiptoeing around hoping no one will notice how much it’s been ignored.  I’m not suggesting wasting valuable dollars on more uninformative research.  I’m not citing inaccurate statistics, skewed by fraudulent individuals who are doing their damndest to cover up an epidemic that didn’t have to be.  I’m not dismissing the pleas being voiced by thousands of frustrated parents.  I’m not writing off the useful answers, advice and professional opinions of those in the trenches who truly know autism.  And I’m not creating more committees and subcommittees to talk about unnecessary data about autism.  I, unlike the IACC, am making an effort to combat autism.  They, for reasons that I am unsure, are not.  

You’d expect the experts who sit around the IACC table to do more than just consider what their invited guests and speakers have offered.  You’d hope the people who sit on such a committee could be the ones who’d crack the whip.  You’d even expect them to get something done.  In searching for why they haven’t, I gave a hard look at the IACC’s mission and at who they’ve chosen to sit around the table.  In doing this, I discovered I have less respect, expectations and hope for the committee.  Why?  After Wednesday’s deplorable meeting, I realized that the IACC doesn’t exist to prevent autism like I’d initially thought. 

The IACC isn’t there to offer funds to those who support a person with autism.  They’re not there to promote action.  They’re not there to rattle the doctors and providers whose unsafe practices contribute to autism.  Nope.  To me, it looks as if they exist as just a bunch of talking heads.  And if I’m right, then they are doing their job.  And they’re doing it quite well because:

•    They are there to talk about a disorder that affects 1 in 50 (but in actuality is more like 1 in 29). 
•    They are there to admit that autism affects many, many people. 
•    They are there to state facts. 
•    They are there to nod their heads in agreement that yep, something’s up. 
•    But they are not there to really do anything about it. 
•    No action required
•    No reallocating gobs of available research money to families in need right now. 
•    No admittance of anything. 
•    No acknowledgement of another.
•    No mission to combat autism or to ever make it stop. 

Nope.  Just talk, talk, talk, talk, talk, talk.  Talk all about autism.  Do it all damn day long and all over again every few months when another meeting is scheduled. 

Why do I think this?  Check out their mission statement: 

The IACC exists to:

•    Provide advice to the Secretary of Health and Human Services regarding Federal activities related to autism spectrum disorder.
•    Facilitate the exchange of information on and coordination of ASD activities among the member agencies and organizations.
•    Increase public understanding of the member agencies' activities, programs, policies, and research by providing a public forum for discussions related to ASD research and services

For those who benefit from simply talking about autism, for those who believe that autism is a gift, and for those who could care less about one more kid with autism dying after wandering, the IACC must be perfect. 

For those of us who want to make changes for the better, who don’t think autism is a gift, who also believe in recovery, and who wish things were so very different for their children, we were doomed the moment the IACC was created. 

Unless their mission changes, which is highly unlikely, we should ask that this committee be disbanded.  A different advisory committee, made up of people who really understand autism and who spend their life’s work to support those affected by it, would better serve our community and our children’s futures.  I’ve got a few nominees I’d like to suggest, but I’ll save those for another post.  I’ll write that after I can stomach re-watching the IACC broadcast and listening to the drivel from some of those members who should have been given the boot long ago.
Cathy Jameson is a Contributing Editor for Age of Autism.



By the way, as should be obvious, the above and all my comments are not medical advice, they represent purely my own personal lay mans opinion. There are plenty of Doctors such as Dr Sears who anyone could talk with who want medical advice..
You asked for my opinion though, and that is what I gave you.


Sarah; I grew up in the generation where measles mumps and rubella were typical childhood diseases, and I had them all. A week or two at the most, kind of like getting flu. The worst I can remember is not being allowed to scratch the itches.
( Which apparently means I now have better antibody protection against them than those who had vaccines that can wear off.)
Whooping cough has been making the rounds through the vaccinated kids at the local school. While anyone with a cold or respiratory infection should stay away from babies or the vulnerable, all of the people I know who have caught it are just fine. More puzzled by the long lasting 'cold' they caught til a doctor finally told them it was whooping cough than anything else.
None of them are heading for lifelong institutional care because they can't speak any more.
If the chance of a bad reaction is vanishingly rare, then a 1 in 50 chance( or lets make it 1 in 55 to leave out the genetic cases) of neurological damage doesn't seem to be good odds in comparison.

Modern medicine has also likely got better at treating infectious diseases over the last 40 or so years.

Not all infectious diseases are created equal.

Re kids who develop autism because they have fragile X ( about 6% of the autism population) or say agenesis of the corpus callosum; if they have a genetic disorder, then that won't change. The things that will change are the harm we cause to otherwise healthy individuals.
Prior to vaccines autism seemed to exist at about 1 in 10 000.Those non vaccine related cases will probably still occur. But why would that be used as an excuse not to save the rest?
To use the same argument; Thalidomide causes birth defects, but some children get birth defects from other causes. therefore we should keep using thalidomide?
Re markers of those likely to develop autism.
There are plenty of people who have already been injured by vaccines to study.yet no one seems to want to do so. Shouldn't such study be a major priority?

If you were looking to prevent vaccine injury; what kind of information is out there?
What do we do with other medicines such as penicillin allergies for example?
Typically doctors look at family history and prior reactions. Did siblings react? Parents? Does the kid have a history of allergies and ear infections, and should they be tested for immune dysfunction?

( By the way, kids can be tested for certain types of immune dysfunction, some of which can cuase bad vaccine reactions.
There are also certain family histories of immune disorders that are linked to autism. Interestingly these less vaccinated family members did not get autism. Perhaps genetically overactive immune systems can't take so many immunizations that work by stimulating the immune system without developing damage?

If you are interested, I'll see if I can find the studies on the family immune dysfunction autism link. Its pretty strong..
What breaks my heart the most though , are the children who reacted to a vaccine, then reacted to the next, and then reacted to the next, until they became permanently disabled.

What better outcome might these children have had, if they stopped getting vaccinated after the first reaction?
Just some thoughts.
Let me know what you think.


Sarah W and Hera,

Thanks for the responses. What I am not clear on is exactly what tests you would suggest to find those kids who are vulnerable to vaccine damage. As far as I know, they don't exist. Are we supposed to wait for vaccine damage to manifest itself first? Or stop all vaccines for all kids? But that might lead to more infectious diseases.

Also, what about those kids that have never been vaccinated and still have autism? How would they have been saved?

Christine MacVicar

At least you have an Austim Bill however useless it is. In Scotland our government successfully defeated a private motion to bring this in. They don't even pretend that they want to help!



According to the CDC, the autism rate is now 1 in 88 up from 1 in 110 in 2009- a 20% increase in just four years. Based on this growth rate, what will be the rate in 2016 or 2020?? When the risks outweigh the benefits, isn't it time to speak out.

Personally I think the core problem lies in the CDC vaccine schedule which I think is overloaded and too aggressive. I think multiple vaccines are triggering a neuroimune dysfunction in a subset of kids- OUR kids.

In a press released issued on January 16, 2013, the IOM openly admitted this: "However, the elements of the schedule -- the number, frequency, timing, order, and age at which vaccines are given -- are not well-defined in existing research and should be improved."

So IOM is basically saying that key elements of the CDC vaccine schedule has never been safety tested yet the CDC recommends that Peds across the country follow this unsafety tested schedule when vaccinating our children.

Knowing a subset of kids are at risk for serious adverse reaction to vaccines, don't you find that the least bit irresponsible?

Fact is too much of a good thing is a very bad thing for some kids. It's time to put the brakes on and slow down this runaway train called the US Immunization program.

Noone is saying to stop vaccinating altogether rather slow down, spread the shots out and wait until children are older and their immune systems can handle the shots.

Too many, too soon. It's that simple!

IOM Source:

Date: Jan. 16, 2013; FOR IMMEDIATE RELEASE

"IOM Report Details Strategy for Monitoring Safety of Childhood Immunization Schedule"


(Since there are two Sarah's on AoA now, I am changing my ID to Sarah W)


Doctors ethically are not allowed to hide side effects of medical treatments from people.
Pretending children are not getting neurological damage from vaccines because it suits public policy is not ethical.
Its pretty basic.
And ignoring this has made the mess we are in now, when we have no way of caring for many many children, now becoming adults, with permanent disability, yet we keep harming more and more children because policy says we should pretend it is not happening.

An outcome that leaves some people unable to communicate and requiring lifelong institutional care is not an ok outcome. And one our country quite frankly can't afford.

The reality is that if a program is causing lifelong neurologic damage in possibly as many as 1 in 50 people it needs to be re examined and restructured.
Obviously screening of people who will react badly to the vaccine isn't happening.
What I would expect truthfully is that a discussion that looks at real risks and benefits would occur.
How would the "vaccines save lives and save money" paradigm actually look if we included the cost of providing lifelong care for people with severe autism?
For example;if you are preventing potential side effects from a treatable disease like say,hearing loss, but causing side effects like permanent neurological damage, in far greater numbers than would have got the original side effect, then what is the point of your intervention?

Penicillin saves lives too, but we don't keep injecting it into people who react badly to it.
My guess is that some vaccines with the highest rates of side effects would no longer be recommended.

People with family histories of immune disorders might well be better screened, and side effects such as seizures following a vaccine would perhaps be taken more seriously, maybe presenting further vaccine damage from occurring.

I'm guessing what will happen if the truth is acknowledged is that some people will live independent lives instead of being permanently disabled. What do you think will happen?

John Stone


I think we are perhaps talking about your structural mind-set here i.e. we should not talk about these things openly for fear of the consequences (what happens if people stop trusting the vaccine programme etc). But if the truth is messy we should nevertheless address the truth when deciding on a course of action not some bureaucratic fiction or expedience.


If the IACC finally admitted that vaccines cause autism, then what would you want to see? Would you wish that all vaccines were eliminated? And then what would you expect would happen?


"It is difficult to get a [CDC] scientist to understand something when her salary depends on her not understanding it."

- Upton Sinclair (paraphrased)



The J Bart Classen piece looks about like the info I have put forth in the "Inflammation" thread to which I keep posting. In fact, I have linked the Classes report there. Yet, in spite of my enthusiasm for the appearance of his report it is hard not to think it would not have made it to the top of the link pile "Google wise" were it not for Jenny McCarthy going on the view. The media powers use the issue when it suits there ends while mainly making we who see the evidence and linkage the ""bearded" lady..

Too cynical?


Time for a newspaper ad proclaiming how useless this committee is to the autism community and consequently to the taxpayers funding it.
It’s pathetic really. As long as they have the autism community waiting outside the door in anticipation of scraps like a mangey abandoned stray, the longer the charade will continue.
Move on.......and do it loudly.


RE WSJ...except for:

"The Wall Street Journal news department was not involved in the creation of this content."

Still good to see that Claussen's press release was published by a major outlet though.

John Stone


Who knows - perhaps we are getting near the tipping point?



It is this very month and it says:

"We have been publishing for many years that vaccine induced inflammation is causing an epidemic of type 1 diabetes and other diseases. Our new data, as well as the extensive data from others regarding the role of inflammation in the development autism, leaves little doubt vaccines play a significant role in the autism epidemic,”

Game over, all done, right?

Probably not.


I think IACC exists to provide cover for what has become a national eugenics program. Some of the members don't know it-they are being used.

John Stone

Hi Katie,

Indeed, and why doesn't Francis Collins get it now when more than seven years ago as head of the genome project he told Congress that autism was not a genetic problem because it was rising far too rapidly.

"But genes alone do not tell the whole story. Recent increases in chronic diseases like diabetes, childhood asthma, obesity or autism cannot be due to major shifts in the human gene pool as those changes take much more time to occur."


A new paper by J Bart Classen links the rise of type 1 diabetes and autism with infant vaccination but no doubt Collins and his pal Insel will continue to look everywhere they know the answer isn't.




IACC = Interagency Autism Cause-Coverup Committee

John Stone

Hi Paul,

Perhaps after all you have better politicians in the US. Of the last four British Prime Ministers autism visited:

The grandson of John Major

A nephew or niece of Tony Blair

The step sister of David Cameron's wife (daughter of government minister Lord Astor)



Katie Wright

Even when IACC delivers a pretty good strategic plan as it did 2 years ago, the NIH just ignores it and funds whatever nonsense NIH bureaucrats want to fund anyway. So what is the point of this whole exercise???

There needs to be transparency at the NIH. At the DoD members of the ASD public are invited to take part in the grant making process. Ask any of the DoD personnel about this. They would actually argue that working with the public makes for much better autism grants! What a concept!

Instead the NIH makes autism grants in complete secrecy and with NO public buy in at all. The DoD program also invites organizations in participate in proportional to their membership numbers rather than just choosing academics or friends of friends to participate. There are a lot of NAA and AS parents, for example help choosing grants at the DoD. 60% of DoD stakeholder seats are NOT assigned to those who embrace autism as a gift, rather than a disability.

The people at the DoD get it. Why doesn't Frances Collins? I am so tired of hearing about the brain project and instead want to see some of our $ spent wisely and usefully for a change.


Cathy thanks for going, I know you have a large family that really puts demands upon you.

You said:"But, if you’ll remember I’m a dreamer. I’m a hoper. Most importantly, I’m a Mom who wants the help others avoid the negative side of autism—the kind that severely affects my son."

By speaking up we have probably saved a lot of kids of peds and doctors and maybe Tom Insel's brand new grand baby.

Paul S

May the first born or first born grandchild of these free loaders, sucking the dollars and not being productive be struck autistic.
This will change their outlook. It's called a "Dan Burton". He became an advocate after his grandson was stuck Autistic.


I have an 8-year-old neighbor whose issues clearly land her on the spectrum of autism.

But her mother is having difficulty getting her diagnosed. Apparently DSM 5 is kicking in? Time to make it look like the epidemic is going away?

This kid has trouble with eye contact, attention span, has difficulties with balance, with visual tracking, has no concept of space, talks loudly with a flat affect, prefers repetitive tasks, likes to spin, has socialization problems--and has all the physical symptoms we are all so accustomed to: eczema, constipation, stomach aches, toilet-clogging poops.

The mother was told that her daughter doesn't qualify for a diagnosis, and therefore doesn't qualify for an IEP.

But they're perfectly happy to push meds on her.

It just gets worse and worse--even for the kids who are lucky enough to be verbal.

Heidi N

I applaud efforts, but I just sought out those who knew how to recover kids to recover mine. You can't make people who are greedy not be greedy. They are who they are. The only way fix to this situation is to stop all government funding to medicine. It's become a waste-haven of greed, causing more harm than good. If we eliminate the free-loaders, they will leave, and then the ones with actual results will be left standing -- since they do it no matter whether there is money or not. People lie to themselves and actually believe they are doing good. You can't convince them to change. But, you can convince Congress or some other entity to make them change. You have to go around these agencies, like the many of us are already doing to succeed at recovering children.

I almost wish there was no Internet, so I could go back to believing agencies were run by caring people. It's so disheartening to learn the truth. It's even more disheartening watching your children lose symptoms before your eyes with free information concerning recovery, proving the dysfunction and sick corruption of mainstream medical which still to this day, can't do basic things concerning autism recovery.

Eileen Nicole Simon

The meeting is online at http://iacc.hhs.gov/events/index.shtml and click on the VideoCast link.

Also, send email to [email protected] and ask to be sent the written and oral comments submitted for this meeting. Many parents have expressed much anger in what they wrote and in their oral presentations. They were so far behind schedule by the time they got to the Public Comments period that I cut mine really short, and just asked that they discuss the concerns I submitted in writing.

They did not discuss any of the public comments.

If you scroll down to the bottom of the events page, you will see that the first IACC meeting was held Nov 19, 2001. I attended the one on Nov 21, 2003, which followed a conference billed as an “Autism Summit”.

We need another Congressional Hearing. I am trying to contact MA Senator Elizabeth Warren about how to revamp this committee to focus on the issues that matter most to families with afflicted children. For over a decade now the IACC has been a huge waste of money. Can’t we band together to demand change???

For Twyla

Archived July 2013 meeting link: http://videocast.nih.gov/summary.asp?Live=12921

Angus Files

Aye Ali..

Wet Wet Wet - Lip Service


God Bless us all!! fight the fight..

Bob Moffitt

If memory serves me right .. the widely respected .. rightly so .. Dr. Bernie Rimland .. a fearless spokesman on childhood autism .. warned the "watered down version" of the originally proposed Combat Autism Act .. would prove to be the "Pretend Combat Autism Act".

If memory serves me right .. some of the very same organizations that chose to ignore Dr. Rimland's prescient warning .. vigorously defended accepting the "watered down" version of the originally proposed Combat Autism Act .. their only reasoning being ... it was "better than nothing".

Well .. how did that work out?


Is this IACC meeting available to see online?

Alli Edwards

It's called "lipservice".

L Land

I use to have hope like you. Not any more.

Cat Jameson

Thank you for the correction, Anne. I appreciate how thorough you are and how much information you are able to share.


Anne Dachel

Thank you, Cathy, for this summary of the non/mal-feasance of IACC.

Let me correct one thing. In 2006, when IACC was invented, the rate was actually one in every 166 children in the U.S. (I know it's hard to keep the numbers straight because they're changing every couple of years.)

Here is a NY Times story announcing the increase in autism from one in 166 to one in 150 in 2007, the year after IACC started. http://www.nytimes.com/2007/02/09/health/09autism.html?_r=0 In the that story, the Times was right there telling us it probably wasn't a 'true increase,' but just 'the result of our better studies,' quoting Julie Gerberding, then head of the Centers for Disease Control and Prevention. (She has since of course, moved on to head the vaccine division at Merck.)

These are the autism changes that have occurred under the watchful eye of Thomas Insel and IACC:

2004 1:166
2007 1:150
2009 1:110
2012 1:88
2013 1:50

Most of the time, all this is attributed to a broader definition of what autism is. The diagnosis was expanded back in 1994 and officials have played it for all it's worth. Incredibly, when the rate pole-vaulted to the stupefying number of one in every 50 U.S. children, we were still told it wasn't because more kids actually had autism. Almost 20 years after the diagnosis was changed, doctors are still finding kids that they missed.

What I like best about the Times story from 2007 was the correction made at the end:
"Correction: February 10, 2007

"An article yesterday about a new study of the prevalence of autism spectrum disorders misstated the age range for the estimated 560,000 Americans who suffer from the disorders. They are age 21 or under, not 18 or under."

Oh, so instead of referring to Americans 18 and under, the one in 150 applied to those 21 and under. Amazingly, that didn't bother anyone at the Times and certainly no one at IACC. If IACC really wants to talk about autism, they should ask where all the adults are. I mean the 40, 60, and 80 year olds disabled like our children are.

Of course, if they waste another seven years doing nothing, the adults will be there. They'll be the hundreds of thousands of young adults with autism who have no place to go that we'll be paying for for years and years and years............

Anne Dachel, Media

tara mcmillan

Politically correct...to soothe some and to appear to be doing important things....only to save face..... only to appease....that's why they are there...... shame shame shame....

John Stone

As I wrote nearly 4 years ago:-

"What we have is the longest filibuster in history - people using every kind of procedural trick to block a proper discussion, which if it ever took place they would certainly lose - in fact they have already lost on moral grounds. Issues which should have been addressed a decade ago are still being talked out, and any concessions they ever make are simply with a view to wasting more time."


Obviously the IACC is a lot older now than it was then, but before the IACC there was the IOM report, dribbling the ball down the field from 2001-4.

Victor Pavlovic

To me it seems as if they are there to stall and hinder.

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