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« A Critical Review of the Performance of The Interagency Autism Coordinating Committee Meeting | Main | Ohio Newspaper Suggests Fines/Incarceration for Pharma Execs »

The IACC (I Am Completely Clueless) Meets Again

Clueless no excuseBy Dan Olmsted

Bernadine Healy must be barfing in her grave.

At least the former National Institutes of Health director, who told the self-evident truth that vaccines could not be ruled out as a cause of autism, because the research hadn’t been done, because the government didn’t want to do it, didn’t have to sit through Tuesday’s meeting of the Interagency Autism Coordinating Committee. She didn’t have to hear the current NIH Director, Francis “gene” Collins, talk about all the advances in pinpointing the genetic causes of autism, now reaching 30 percent according to his math; didn’t have to listen to HHS Secretary Kathleen Sebelius laud IACC Director Tom Insel for all the progress he’s made on autism as the rate doubled over the past five years, or Insel laud Sebelius for all the progress she’s made on behalf of the President of the United States of America (much more on him later), or Collins laud Sebelius and Insel for … ad nauseum.

But I did. Yeesh.

This was the inaugural meeting of what Insel described as version 3.0 of the Interagency Autism Coordinating Committee, enabled by the re-authorization of the Combating Autism Act last year. As such, the session was a showcase for the failure of the CAA and in particular for the inaction, misdirection, and torpor that comes with having no mission except avoiding the reality of an autism epidemic and the accompanying truth that it’s an environmental illness in which the government’s own nutty War on Germs has played the major role. It’s sort of the living out in a Washington hotel conference room in 2012 of Bernadine Healy’s admonition from the grave. (“The question has not been answered,” Healy had told CBS. “One should never shy away from science, from getting causality information. I think the government or certain public health officials within the government have been too quick to dismiss the concerns of these families without studying the population that got sick.”)

So there sat Certain Public Officials and the grateful dopes they could find to agree with them. Insel even managed to rustle up three new members for the committee who are on the spectrum, and thrilled to be there (by which I mean on both the committee and the spectrum). Bully for them, but not one (to my memory) said anything about helping those for whom autism is a nightmare from hell every single day, or for their families.

There were a few bright spots. Several people whom I would describe as members of the Rebel Alliance stood up and turned their backs after listening to Sebelius repeat the same old blather. (See photos below.) All of them wore T-shirts that said, on the back, “Sebelius turned her back on the autism epidemic. Again," and displayed different pithy comments on the front – “$1 billion researching what doesn’t cause autism” being a particularly pertinent maxim, roughly the amount funded by the CAA, coordinated by the IACC.

The private hotel guards had been alerted by Homeland Security that there might be a protest, and two of them were talking behind me. “Protest?” one said. “They just look outspoken to me.”

Of course, that’s terrifying enough.

The room was odd and poorly suited to an event like this (how convenient!), with a giant six-foot pillar in the middle that made the turn-your-back event a little hard to see. But this strikes me as a first  by parent-advocates whose children, in Healy's words, "got sick," and who have turned against the status quo and its enforcers.

The committee is essentially a bunch of droning bureaucrats doing their masters’ bidding (the hierarchy being the IACC, the NIH, the HHS, and the White House), and a few non-government representatives who repeated how happy, so very happy, they were to be honored with such an honor as the honor of being on a committee such as this one. An exception is the redoubtable Lyn Redwood, who took the obligatory go-round-the-table-and-say-hi moment to make a statement that was only sharpened by her intimate and informal Southern style. Noting Insel’s comment about how hard, how very hard, the committee had been working – 17 meetings in one year! – she said, “Despite, Tom, all the meetings we’ve had, very little has been accomplished.”

Ouch, Tom!

Another ouch:  A new committee member named Jan Crandy from Nevada uttered the V word, saying that a possible relationship between vaccines and the autism epidemic needs to be investigated.

She might want to talk to Redwood about that idea. It was on the agenda for one brief shining moment during IACC 2.0 until Insel, no doubt in consultation with Collins and Sebelius, pulled an end run and got it knocked off. I can only imagine the orgy of congratulations all around on that one.

Afterwards, I asked Crandy why she had said that about vaccines. “Because I think that needs more research,” she said, looking at me like someone who needed the obvious explained to them, and sounding exactly like Bernadine Healy. “Someday it’ll be like cancer and the tobacco funds.”

(Remember that name, fellow members of the Alliance. According to her IACC bio, Jan Crandy is “a case manager for the Nevada State Autism Treatment Assistance Program (ATAP) and has been a leader in raising awareness and treating autism spectrum disorders in Nevada for more than 15 years. She is a dedicated advocate and parent of a child with autism. In her current position at ATAP, Ms. Crandy manages and develops programs for more than 65 children with ASD. In 2007, Ms. Crandy was appointed to the Nevada Autism Task Force by Governor Jim Gibbons. In that role, Ms. Crandy helped develop policy recommendations for state policymakers on ways to improve the delivery and coordination of autism services in Nevada. She also serves as Chair of the Nevada Commission on Autism Spectrum Disorders. Ms. Crandy began her career in advocacy in 1996 when her daughter was diagnosed with autism. With the support of family and friends, Ms. Crandy started a nonprofit organization called Families for Early Autism Treatment (FEAT) to help parents of children with ASD in Southern Nevada.”)

Vaccine enthusiast Allison Singer was there, late of the Autism Science Foundation, formerly with Autism Speaks, where she got the seat she clings to like a barnacle on the Titanic. Geri Dawson, chief science officer of Autism Speaks, who took that seat, was there, too. Dawson is a Flexian, a shape-shifter assimilating every viewpoint because Autism Speaks, like the Blob, must grow or die. So in the space of her three-minute intro Dawson could say she “resonated” with the execrable Matt Carey (Left Brain/Right Brain)  and his bogus concern about all the autistic adults who’ve been overlooked and need to be served, and also that she “resonated” with Lyn Redwood’s sense of urgency.

Anyone who can resonate with both Matt Carey and Lyn Redwood isn’t just resonating, she’s quivering like a bowlful of jelly.

Oh, and Michael Strautmanis, J.D., spoke. He is, according to the program, Deputy Assistant to the President and Counselor for Strategic Engagement to the Senior Advisor, Executive Office of the President. Yes, he works for the PRESIDENT of the United States of AMERICA, get it? And the president, he told us, calls him Straut. As in, during the signing of the Affordable Care Act in the Oval Office, the President said, Straut, we’ve got to do more.

Before him came Kareem Dale, JD, MBA, Associate Director, White House Office of Public Engagement and Special Assistant to the President for Disability Policy. These titles, I’m telling you, they’re wearing out my typing finger. Dale talked about being in The Oval for the signing; when Straut started talking to the IACC, he said Dale had stolen his thunder about that anecdote. He wasn't smiling, and I don’t think he was kidding. 

There was a subtle but distinct whiff of those-Republicans-are-ruining everything-for-you-autism-people. Sebelius remarked how there was not even a budget for this  fiscal year, let alone next, and that the Republicans were about to vote to repeal Obamacare for the 30th time. (I’m trying to remember, but didn’t Obama not submit a budget for this year? – not sure on that one.)  And it's hard, so very hard, to get any more money out of a recalcitrant Congress.

I’m a progressive, so I get to say this – I couldn’t help thinking that if the government couldn’t spend any money on healthcare, it couldn’t cause autism as effectively as it has, nor cover it up nearly as well. And the IACC wouldn't exist. So I wasn’t feeling the outrage on that one.

That was the dissonance – an audience full of people who believed this committee, an embodiment of the federal government, was in fact causing the problem it was supposed to fix. That’s enough to make your head hurt. 

While the committee was out to lunch (how do you tell?), our folks held a press conference upstairs at which Mark Blaxill, Jen Larson, Katie Wright and Katie Weisman, Jake Crosby and Mary Holland spoke wisely, passionately, and well. The contrast with the drones and doobies was quite noticeable.

Katie Wright talked about how her parents worked so hard to pass the Combating Autism Act and the IACC ,and Insel was now stuffing it with – I forget the exact wording – people not right for the task, looking into things that no one involved in creating the CAA ever cared about. 

After lunch, Mark, Katie Weisman, Jake, and Mary were among those making public comments to the committee. We’ll publish those powerful statements separately.

Before heading back for the afternoon session, Katie Wright kind of captured the day for me.

“I can’t believe what we just had to sit through,” Katie said. “I’m going back for more. I don’t know why, but I’m going to stay to the end.”

--

Dan Olmsted is Editor of Age of Autism.

Comments

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While the vaccine lobby move forward despite so many per cent of this illness and so many tens of per cent of that disease we see the cluelessness on just about every front of 21st century science.


Another top team of scientists found harm to organs and risks of cancer from GMO foods.

What was the response? The research shouldnt have been done. And can we have these ten or so new GMO foods put onto the market to cause more illness, more disease and of course eventually lots more cancer.


Pre clinical signs of diabetes now top 47 per cent with no one who advocates vaccines or the goodness of GMO food has a clue as to why this figure has arrived from zero percent.

Clueless is no excuse but clueless seems the norm for even knowing what illness we have and how much.

The last proper USA check for many illnesses threatening the country is now over 30 - 50 years out of date.


1913 Nobel Prize Winner found repeat vaccines cause normal and expected adverse reactions.

Nearly 100 years on its flu vaccine while pregnant and often repeat them several times and dont forget after a year its round we go again.

The miracle isnt that 47 per cent are suffering from just one of three million or so illnesses but how and why are there ANY healthy people left alive.

And how many more vaccines and or GMO food to push us over the top?


60 years ago it was time to save the insects, today the bees, bats and so on are nearly done for and its time to start to think about us!

@Jenny Allan,

It should be easy to verify since this site require moderation (all comment are moderated) and has the email address of the poster.

@Jen,

I was excited to have some support from Shain and M; you know, not being alone having my views here. That said, regarding operations which are coercive action, I don't know of any case where there could be coercive action but I do know it happened in the past (see the nuremberg code as a result).

Regarding psychiatry, this is a pretty unique position of having to respect both the patient and the public so coercive action are indicated but it's heavily regulated both in Canada's Criminal code and the Civil law and I don't think there any difference in the states.

A.L.

It's rather comic that AoA are being painted as proponents of coercive medicine. If Mr Carey doesn't like what 'Taxpayer' said - which are not the expressed views of AoA or its staff - he only needs to look at his cherished vaccine programme.

AL, I believe Shain was really the one who 'ran' with the forced treatment issue and you seemed to be quite excited about it, even directing others at RI to look at Shain's post here. Shain has not answered any of the questions (operations? Anti-psychotic meds?) about his post and does he not realize that "science"blogs referred to gut problems as a mere "claim" of the autismbiomedical movement. Not exactly supportive, I would say.

Autistic Lurker
The source of all this aggro is an article written by Matthew Carey aka 'Sullivan' in his LeftBrain/RightBrain website:
http://leftbrainrightbrain.co.uk/
"The disabled don’t have a moral right to refuse a cure or treatment?"

The above comment has been attributed to Age of Autism by Carey, but of course, AoA has little responsibility for anonymous views posted on their comments threads. As has been pointed out below, the person calling him/herself 'taxpayer' could be anyone, even Carey or Gorski themselves. This is just a pathetic attempt to manufacture 'smears' against AoA.

Another details, I don't condone Jake's action in his latest post about left brain right brain being uk based. This amount to trying to find lice where there is none.

A.L.

@Jen, I'm not in a position to defend forced treatment, as far as I know, only Taxpayer brought it to the table. Now if scienceblogs picked it up and ran with it, I missed it because I've only been there this morning and now (I ran a cursory check). If you have more specific, let me know and I'll handle it.

A.L.

@Jeffrey - oh please, don't get all offended about comments here when on the "science"blogs some Twits named Denise and Lilady mock Jake all the time, Denise recently making a rude reference to Jake's dating experiences. I think the way Scienceblogs use those ND people is just really sad.
It may well be faux outrage, "Forced medial procedures..." Where are Shaine and Autistic Lurker? They certainly haven't responded to some key points that they brought up here at AoA.

~Finally there are simply no words to address Taxpayer's stunningly ignorant comment or why AoA endorses this kind of nonsense:

"So yes, unless a disabled person is financially and physically independent they do not have moral right to refuse a cure or treatment. And they especially don't have any right to sit on a panel that was created to COMBAT that disability"~

I missed that endorsement Jefferey P.; perhaps you could point it out. For all we know, Taxpayer is just another poseur from Orac's team. I don't see how any person/group that is against forced vaccination would be okay with forced medical procedures of any kind. So I'm calling BS on Taxpayer AND the faux outrage it has caused with the ND's.

"Taxpayer": "What I am arguing against is the general ‘neurodiverse’ attitude that there is nothing wrong with autism, that it shouldn’t be treated..."

Here's what's wrong: There isn't any "neurodiverse attitude" that says that autism shouldn't be "treated". There that many things that can be done to help an autistic person live more independently, be healthier, be able to communicate better et al, without the attitude that they MUST not be autistic which is what that "Cure" attitude is all about.

To the person making fun of the autistic persons on the committee-the hole in their sock, the inside out t-shirt, etc... that's just rich. I don't see Jake Crosby being trashed for needing his own wrinkled shirt ironed when he addressed the committee. Hopefully your own autistic kids aren't bullied in this way when they grow up (ya know, if they're not completely cured by then)

Finally there are simply no words to address Taxpayer's stunningly ignorant comment or why AoA endorses this kind of nonsense:

"So yes, unless a disabled person is financially and physically independent they do not have moral right to refuse a cure or treatment. And they especially don't have any right to sit on a panel that was created to COMBAT that disability"

"IACC" = International Autism Cover-up Committee

"I was operated on and medicated against my will for things that other people convinced themselves I "suffered" from,"

Shaine, Your stand against unnecessary medical interventions rings hollow, considering ASAN's sympathizers routinely defend administering 27 shots before the age of two, with as many as six shots per doctor's visit - and these shots have never been tested in combination. The government has compensated people $2 billion for their vaccine injuries. Not your problem, right Shaine?

BTW, medicating people against their will is one of the core issues the biomed community fights against, so you're railing against the wrong people. As for operations, they are not relevant to a discussion about autism treatments, although I am sorry for you if you were operated on unnecessarily. You're not alone. I was too. Again, nothing to do with autism.

"You mostly can and will earn your tax dollars back."

Really Shaine? How? Please tell me. Because the money I'm earning barely covers my ongoing expenses. I don't seem to be earning my tax dollars back.

Shain@"Weirdly enough, though, the things having to do with my actual comfort like sensory or stomach things never got addressed, and things that made me "embarrassing" or "weird" to others around me did."

Sorry to hear that Shain. That was actually my point too, amongst others, but apologies for writing in shorthand. I would never advocate for 'treatments' that merely serve to bandaid embarrassing or weird or even aggressive behaviours. When I use the words ‘treatments’ or ‘cures’ that refers specifically to things that would address underlying problems, issues like gut problems, chronic inflammation, autonomic or sensory dysfunction etc, things that drive “autistic” behaviours. It is not those behaviours that I view, or that I think society should every view, as a problem to be addressed, but rather the underlying issues that cause an individual to exhibit those behaviours. Without those medical issues there would be no weird behaviours or impairments of autism. Hope you are following? See http://www.treatingautism.co.uk/why-biomedical/

Autism doesn’t just happen, it doesn’t fall from the sky. Children don’t lose all the language and developmental progress overnight through Divine Intervention. Something is causing it. Even if it is purely genetic, lets find those gene/s and correct pathways that have gone wrong. Advocate for that. If some children are born with autism, so what?! Some children are born with Congenital Heart Disease, do we leave them as they are? Or do we advocate for treatments. Just please don’t say that autism is ‘alright’. Because it isn’t. There are billion and one monetary reasons why autism isn’t alright (see my previous posts), and that is without even mentioning the human element of the tragedy.

So we can discuss and disagree or agree on specific treatments (I might even agree with M on stem cells etc), on what treatment trials should be funded, what tests and protocols are most promising etc, but I take a huge issue with someone saying that autism is ‘alright’ and that it should not be treated or cured at all, and voting in principle against research and scientific progress that would lead to better, safer and more individually-targeted treatments that address the underlying issues.

Parents in the biomedical community do not advocate for medicating by force, or medicating at all in order to control symptoms. That is not the point of my posts. What I am arguing against is the general ‘neurodiverse’ attitude that there is nothing wrong with autism, that it shouldn’t be treated, or combatted (while at the same time asking the State to pay for support services). To have people who take that view sitting on the IACC panel, which is being funded by the taxpayer in order to combat autism, is beyond ridiculous. Imo it is downright fraudulent (misappropriation of funds and so on). Criminal.

In case one of our neurodiverse commenters questions my claim that "science"blogs tends not to be supportive of any GI problems or stomach things, one need look no further than Orac's Jan 6 post, titled, "Gut DIsorders and Autism: A New Consensus Statement" in which Orac writes off those problems as "one of the key claims of the 'autismbiomedical' movement." He goes on to slam Wakefield (saying he "popularized" it) and slamming Jenny McCarthy's views on it. So really, I can't see much support from that camp for people like Shain. I do feel bad for them in that they seem to be being used.

That's too bad for you,Shain, assuming you are telling the truth about your situation; here I see people concerned and very compassionate with issues like gut discomfort, sensory issues - my God that's a huge topic here! I think they discount that kind of thing more on the "science"blogs. I really don't see people favoring the whole 'anti-psychotic meds here, either, so I wonder if you are lashing out at the wrong spot?

@Taxpayer - I am a person with visible/physical disabilities as well as an Autistic person. I am allied with the Autistic self-advocacy movement because of my experience with exactly what you advocate, namely coercive treatment, with regards to my physical conditions as a child. I was operated on and medicated against my will for things that other people convinced themselves I "suffered" from, when my true suffering came from being in a situation where told me and treated me like I was and deserved less and then turned around and tried to "fix" me when I reacted badly to that. I would never wish what happened to me on anyone who didn't choose it for themselves. (And yes, for those of you who are going to inevitably be wondering about this - even though it's really something that is not your business - I was one of *those* Autistic people who wandered, who was aggressive, who had severe sensory issues, who had GI problems, and who was described as being "off in their own little world," among other things. Weirdly enough, though, the things having to do with my actual comfort like sensory or stomach things never got addressed, and things that made me "embarrassing" or "weird" to others around me did. So much for the compassion for the suffering of Autistic children.)

Back on topic... You mostly can and will earn your tax dollars back. I will probably never have back a lot of what I lost or didn't get to have through my experiences with involuntary treatment. If you think your saving a few more dollars every year is more important than people with disabilities not developing PTSD, internalized hatred and even more severe problems, then congratulations, you're even less empathetic and more antisocial than people like me are alleged to be.

Re:

So yes, unless a disabled person is financially and physically independent they do not have moral right to refuse a cure or treatment. And they especially don't have any right to sit on a panel that was created to COMBAT that disability.

Posted by: Taxpayer to Do-not-cure-my-autism brigade | July 12, 2012 at 03:25 AM


I'm not sure you absolutely meant the first sentence above, Taxpayer, at least I hope you don't. This is where the industry machine trends toward, removing the right to refuse "treatment" (they seem to assign the word "CURE" to realm of charlatanism) particularly for those assigned to the realm of psychiatry, and in the realm of "disease prevention."

I can understand why some advocating ND balk at even the hint of "cure," especially given what they've been offered and how it is offered, though I don't understand how they are comfortable working with the "mainstream" system--maybe they are not. In possibly unrelated health difficulties, I usually do no better, and often worse, with the "established" mainstream treatment.

I personally think the problem of the matter is that no one has the right to force, nor to deny, a procedure that might help, nor the right force nor deny someone else to fund it, but that is what our government is doing.

Even if industry standards for treatment were high in both efficacy and safety, which they are not, even if they had what they felt they could term a "cure," they would never be able to come up with a magic silver bullet that works for everyone, or is worth the cost for everyone. I don't think alternative medicine could either, and I hope those who find benefit there resist the urge to advocate force.

But, I do find the whole taxpayer funded coverup of some of the effects of an essentially forced "treatment" and avoiding looking at "treatments" or "cures" that don't follow the pharmaceutical profit-driven or elitist-driven agenda, while instead channeling those funds into that agenda, beyond adequate description of immoral.

I just looked up Ari's words on wandering (representing ASAN). He mentions that "there is no evidence that wandering has a medical cause." Talk about splitting hairs! He goes on to say that thought may not be given as to why a person wanders or bolts if it is viewed in a medical context. Well, I know the kids with autism love to be outside in the special needs classes and we use walkie talkies just to help keep them safe. Some of them can run pretty fast! The more I think about it, the guy 'You Can't Make this Stuff Up' mentioned who didn't look thrilled to be there maybe wasn't thrilled to be at the IACC meeting. Maybe the neurodiversity people feel kind of used by the "Science"-blogs and pharma.

I think people need to understand that Regressive Autism is not some neurodiverse difference in brain wiring. It is a disintegrative neurological condition. Something has happened to children in this sub-group so I'll never be all oh that's okay whatever it is let's keep it up in the name of neurodiversity. I do want my son to be comfortable in his autistic skin, though, since it did indeed happen and he is a little old for complete recovery. I struggle daily to balance those nuances.

Who was it, UC Davis maybe, that found Regressive Autism counts for 30% of Autism cases? That makes them a minority, even within autism. Yet researchers typically study autism as one monolithic condition. Could problems affecting sub-groups get missed under such a research model? Case in point - the Rochester GFCF study excluded autism patients with GI issues then concluded that GFCF diet is not helpful in autism (how does this happen when it is pretty much only the parents of kids with GI issues that ever found the diet helpful?) Then Penn State studied autistics with GI issues and concluded GFCF is helpful in autism.

Sub-groups researchers. It is all about the subgroups.
Why do I have to tell YOU that?

As a t-shirt wearing member of the "rebel alliance," I just want to add a comment on what Geri Dawson said because I, too, was horrified when she said she "resonated" with Matt Carey on the autistic adults. From what she went on to say, though, I got the impression she was talking about the huge numbers of adults that are just STARTING to overwhelm the system. You know, the ones that were born in the early 90s as the epidemic was just getting going. So, in that context her remarks about urgency made sense. I have to admit I find Dawson confusing. There's a lot she doesn't know about autism science, but perhaps she's willing to learn?

M@"Taxpayer funded support sometimes allows people with severe physical impairments to get out of bed, toilet, shower, dress and then go to well-paying jobs."

Yes, I would stress the word SOMETIMES !!! (I'd argue that even SOMETIMES is a very optimistic word to use to describe chances of ASD affected individuals ever going out to ANY paid jobs, let alone well paid, support or no support).

What about all those millions of other times when that doesn't happen? When all the support in the world will leave an individual somewhat better functioning, but nowhere near independent?

And who said anything about stemcells ;-) ? Many ASD adults are chosing to treat themselves, there are lots of treatments out there that are safe and work for many etc, so the bit about 'early days blah blah blah' is a strawman. That line of argument just doesn't cut it. You are giving is a very lame excuse for sucking up taxpayers dollars for the mere reason of 'wanting to stay who you are'.


@Taxpayer to the don't-cure-my-autism brigade
Stem cell therapy: highly experimental. Robot walking exoskeleton: costs $200000, slower and less energy-efficient than using a wheelchair. Accessible buildings and transport: good for everyone (eg people with prams, shopping jeeps, temporary injuries, aging population...). Taxpayer funded support sometimes allows people with severe physical impairments to get out of bed, toilet, shower, dress and then go to well-paying jobs.

Obviously, autism and physical disability are different, but some useful comparisons/similarities. I'd say more, but run out of energy for words.

"M", Autistic Lurker said, "we are the PRIMARY stakeholders in that debate." I just feel it's odd and plain unfair that some parents of children who are more severely affected are not asked to represent their children. I believe one of your fellow Aspergerians (Ari Neeman) even spoke against wandering codes at a public meeting- someone else may be able to clarify this. As an educational assistant I find this very upsetting.I think 'Dictionary help' put it in perspective well when they said if you're not interested in 'combating autism' then perhaps a different advocacy group would be a better fit. I honestly do wish you well.


Per the following posts........

Apparently, the IACC had squandered much of the morning session congratulating themsleves on the "wonderful job they have been doing" .. however .. your CRITICAL COMMENTS OF THE OVERALL PATHETIC PERFORMANCE OF THIS COMMITTEE WAS JUSTLY DESERVED!!!

Posted by: Bob Moffitt | July 11, 2012 at 08:17 AM

and

Except for some smoke-clearing moments in the public comments portion, I felt like I was watching a surreal discussion on how to "humanely" maintain an epidemic of assaulted children indefinitely.

Posted by: Jeannette Bishop | July 11, 2012 at 05:34 PM


Exactly the words by Bob Moffitt, "Pathetic Performance of this committee" (IACC and for that fact Federal agencies like the NIH and CDC for their lack of performance regarding the autism epidemic.....and avoiding the link to vaccines and autoimmune reactions among our kids).

Exactly the words by Jeannette Bishop, 'I was watching a surreal discussion on how to "humanely" maintain an epidemic of assaulted children indefinitely.' The IACC along with the NIH and CDC want to maintain the autism epidemic because to look at the link of vaccines to this epidemic would get their masters at the vaccine companies pissed at them. After all these people at the IACC, NIH and CDC want to make sure they have future job opportunities working for the vaccine companies. It is all about job security and to hell with the kids with autism and their families that are suffering.

I saw this happening going back to 1995 when I first went to an NIH conference on autism and the researchers involved were totally ignorant of Vijendra Singh's blood tests that showed kids with autism testing positive for myelin basic protein antibodies. They didn't care then and they don't care now. It is all about getting funding on a long-term basis for their own autism WPA project that never ends. Whether there is an epidemic of autism, that is not important to the IACC, NIH and CDC.

In the future, parents that go to these meetings may want to look at the backs of these IACC, NIH and CDC people. They will find out they are not flesh and blood human beings but some kind of wind-up toys/robots that give prepared speeches. Shakespeare said it best in Macbeth, "It is a tale told by an idiot, full of sound and fury signifying nothing."


M@"Does focusing on access barriers rather than cure make a wheelchair user less of a stakeholder in discussions re physical disability?"

From my taxpayer perspective the answer is No, they don't have a right to be there. No one has the right to refuse a cure or a treatment that would make them less needy of state-sponsored services.

I would much rather see my tax dollars going towards a CURE, I would rather be paying to ERADICATE autism than paying for your wheelchair access barrier and many millions of wheelchairs to come.

So yes, unless a disabled person is financially and physically independent they do not have moral right to refuse a cure or treatment. And they especially don't have any right to sit on a panel that was created to COMBAT that disability.


@Julie and @Kapoore

It's difficult to address your point but I'll try; I have a brother who's supposed to be higher functioning than me and somewhat, he is (helping me pack my stuff in preparation for a move or helping me cleanup my appartment) and he is not (calling me 6-10 times a day for common questions such as is this food good enough, computer help and whatnots)...I lived all my life with that brother and he is older than me.

A.L.

Jen says that autistic adults "do not serve a place at the table when they call themselves the 'primary stakeholders' in the debate on relieving, improving autism symptoms. The primary stakeholders would be the kids who can't actually speak (even with assistive devices!), the kids who bolt, the kids who wander, the kids who can't toilet themselves, the kids who have sensory impairments and pain that causes them to scream and wail". Many suggest that autistic adults don't have health issues.

Every single autistic adult I know (either in person or online) has significant sensory issues - hypersensitivity, hyposensitivity (particularly to pain), processing problems or some combination. Some did not have functional communication until mid-childhood. Some currently lose speech when overloaded. Some self-injure (at least occasionally), even as adults. Some bolted/wandered as children. I'm probably not the only one who repeatedly hit others, and was restrained/secluded as a result. At least half have chronic health problems (I have refractory epilepsy - multiple daily seizures for 20+ years, including many episodes of status epilepticus). A significant proportion either can not live independently, or have great difficulty doing so. Services for high functioning people? At least 2 'high functioning' autistic bloggers have written about experiencing severe malnutrition: http://www.existenceiswonderful.com/2009/06/on-feeding-of-quirky-mammals-part-1.html (I have some similar difficulties, and found that series of posts very useful). Check the stats for eg sexual assault or financial exploitation of autistic adults. Check the unemployment stats (astronomical amongst 'high functioning' autistic and Aspergers adults). And so on.

Tell me again how we're not stakeholders?

The overwhelming majority of adult wheelchair users aren't interested in walking robot suits or stem cell treatments (Christopher Reeve was a *very* controversial figure in the disability rights movement). Rather, they argue for things like accessible buildings and transport, funding for wheelchairs and communication aids, not having to live in an aged care facility, and having support for more than 2 showers a week. Does focusing on access barriers rather than cure make a wheelchair user less of a stakeholder in discussions re physical disability? Why are the rules different for autistic adults? (yes, I'm not like your child. I'm also not like myself as a child, and - like many autistic adults - my ability to write online does not match well with my abilities in other ways).

OMG, I listened to much of the meeting online & OMG they can talk about nothing forever, what I heard mostly was the same thing that Charlie Brown heard when his teacher talked, Blah blah blah, but they can sure brag on themselves.

I think dealing with people like Tom Insel is like dealing with Spock from Star Track, heartless.

This meeting was disgusting, with NO since of urgency.

Thanks for the great article, Dan. It's refreshing to hear someone tell it like it is. The IACC for six years has been mostly bureaucrats. With Dr. Francis Collins at the head of NIH, autism research will continue to be too focused on genetics, at a time when people are realizing the environmental impact is much bigger than previously thought.

I agree with the Mark Blaxills, Lyn Redwoods, and Jennifer VanDerHorst-Larsens who advocate more research into environmental causes as well as vaccines. I applaud their efforts and those of the Canary Party, and believe that through social media much can continue to be accomplished.

Dan...you make the most brilliant statement I've read so far this week..."I couldn’t help thinking that if the government couldn’t spend any money on healthcare, it couldn’t cause autism as effectively as it has, nor cover it up nearly as well. And the IACC wouldn't exist." Amen and thanks to you & all @ AoA for continuing to spread the truth.

@Lurker, you need to understand something since you are so "into" needing services. The services people like you need are for higher functioning people. My child and many others like her have Down Syndrome and Autism. Not one child I know with the dual diagnosis is high functioning. At least with just DS, there is a good chance for school, for friends, for jobs, etc. For kids with the dual dx, it is almost guaranteed that it won't be the case. So while you may need some help, kids like mine (and the estimates are now anywhere from 18.2% to as much as 22% of the Down Syndrome population) will need MUCH, MUCH more. And it will be devastating if the rates increase in our population (and it is.)

Thank you for the article. I learn so much from Age of Autism. It's great to have advocates for children such as the people who attended this conference and spoke truth to power. Perhaps the Lurker is just ignorant. He has not lived with a sick child for twenty years. He doesn't know what it looks like on the inside of vaccine damage. (And my daughter has recovered more or less, if such a thing is possible with all the emotional fall out and lost years) It's hard to describe the rage, to contain the rage....and it is the vaccines, sorry Lurker. Right now there is a 2 year old in my family who does not speak, has rock hard poop, and skin rashes. He hasn't totally faded out, though. I did mention vaccines, but that was dismissed as impossible, fringy. If the parents read Age of Autism they would know the stories of parents who had a child right there on the cusp and then they LISTENED to the doctors and the next vaccine sent the child into seizures and the low end of the spectrum. That to me is criminal. It is a crime; those authorities (those doctors) should be in jail. Sorry my opinion. It's murder in some ways, or like murder, or man slaughter, or like it... you can see I'm losing myself to rage again.

Thanks to everyone that went to Washington to protect, and speak up for those who can't, you guys really stuck it to them, as they all appeared to be stunned.It seems like all the suggestions made to much sense to the IACC, in-fact they couldn't handle it, they just wanted the meeting to end, it couldn't end quick enough for them, they didn't like hearing about how they are FAILURES in the autism communities eyes.

Everyone,

For what its worth, I believe "Autistic Lurker" is something other that who he/she is pretending to be.

I suspect this new poster is really just a troll, trying to derail the momentum that has clearly been building over the last day or so.

My suggestion suggestion is that we let this, and other similar dissenting comments just stand without response for a couple of days or more. Lets just stick with the positive, and get back the negative later on if need be. That way no harm is done, and no time is wasted.

Dan,

Love reading these scathing reports of the events that so many of us miss due to our sick kids needing us at home. It must have been painful to have witnessed this chosen assembly of deniers, liars and those guilty of malfeasance. This sounds like a surreal Twilight Zone episode yet hearing that Lyn Redwood and Jan Crandy were the shining lights of sanity gave me some hope. Thank you and to all the other heroes trying so hard to stop this epidemic of autism and help those already affected. We appreciate you all so very much.

That's cool, AL. We all want answers and respect and safety for our loved ones on the spectrum - thanks for the chat. KS

Thanks Kim for the welcome but I'm not really sure you'll like my position in the debate; essentially, I worked for a research group who was researching autism's strength with a widely varied clientèle (LFA to HFA and aspergers) and is now working on an educational program destined for the autistic clientèle (in replacement for ABA). The educational program rely on autistic strength to improve learning abilities.

On the subject of vaccine, I am pro-vaccine and thus, I don't believe vaccine cause autism. It can certainly bring physical or neurological problems but not autism. On the same length, I don't know what cause autism, there seem to be some genetics but genetics is not responsible for everything.

I'll follow for sure but I don't comment a lot because I am very busy in a given day and I don't have enough with 32 hours per day :)

A.L.

"All autistics people should be able to get the help they need to thrive."

Yes, Lurker, you are absolutely correct. And you may also be right that there will always be autistic people -- perhaps at the "old" paradigm numbers of 1 in 10,000, before the current epidemic began. However, providing resources is going to become unsustainable if the numbers continue to grow at present rates. This is especially so when many of the children represented by parents on these boards are at the non-verbal, low-functioning end of the spectrum, with little ability for self-care, and have numerous co-morbid medical conditions that are routinely ignored by the medical community as a whole and autism researchers in particular.

The explosion of these children is the primary issue of concern for the parents on this board who were so splendidly represented by those parents who spoke at the meeting. Something is causing our children to be ill. It ain't genetics, unless you count de novo mutations with a chemical cause. Finding the underlying medical causes of our children's autism may or may not lead to better treatment and recovery options for them. But it would go a long way toward preventing the same medical fates from befalling future generations, and would in the process protect the finite service and fiscal resources for those like you who are already on the spectrum.

Hi, Lurker - we have adults on the spectrum who read us - and you're welcome to unlurk - IACC has failed adults who need support with myriad issues too - housing, jobs, insurance - medical care - we're as devoted to helping those who are HERE as we are to those who may follow. I have 3 girls with autism, one almost 18 - so adult issues are important to me.

Best, KIM (Managing Editor)

@Dictionary help for Autistic Lurker

Thanks for the definition but I don't feel threatened by the statement "Combating autism act", there will be autistics forever.

@jen

relieving, improving autism symptoms

The debate is wider than that, accomodation for autistics people count too. All autistics people should be able to get the help they need to thrive.

I wish I had been invited to sit in on this little Comedy of Errors. Maybe I'd have spoken about my 14 year old, who went undiagnosed until his little brother was diagnosed with Autism at 18 months free being erroneously delivered the ADULT dosage of the flu vaccine (which I'd have remained blissfully ignorant of had a naval hospital doctor not called two weeks later - while my then 6 month old was already beginning to show the lack of eye contact, disappearance of mastered skills, you know the drill - to inform me of the snafu, but to assure me that everything was all right, because it was "the same thing they give to children, just in a different version not FDA approved for use in children. Gee, doc, I wonder why? Did I mention that neither the flu shot nor the phone call appear anywhere in my child's medical records anymore? Curiouser and curiouser...). My oldest was instead diagnosed with ADHD and early onset bipolar disorder at age 5...a diagnosis that he carried until his brother's diagnosis and my subsequent devouring of every printed material on every form of PDD, leading me to Tony Atwood's work on Asperger's Syndrome and finally, a correct diagnosis at age 12. This past January, we found him hidden behind his bed with a bathrobe tied around his neck in the early stages of suffocation. During the time that he was hospitalized, we learned that although he can walk and talk and is deemed "high functioning" within our community, he felt so isolated and alone within the confines of his own existence that he sought to end his life. To me, that's not "functioning" at all...and I'd bet that my teenage son would tell anyone that would care to listen how much he dislikes not neo able to relate to others and being shunned by his peers, who he desperately wants to engage with, but lacks the skills necessary to properly do so. I might also have talked about how it has become a full-time job to fight for ANY services for my older son (we were shot down by the Regional Center after over a year - and a formal Admin Law mediation - with an offer to "come back when he graduates high school, if he is still lacking in independence and self care skills as he is now," and they will reassess him then), as well as the continued battle to retain what little services we do have in place for our younger son.
I would have gone on to share how devastating it is to watch your baby meet and exceed all developmental milestones, only to regress into nonverbal "global delays" within weeks after receiving a flu vax loaded with thimerasol, which you held your child down to receive as he wailed and thrashed, simply because you were told to do so by your pediatrician...who incidentally had been assuring you for MONTHS that there was no link whatsoever between vaccines and Autism. I would have spoken about the path to diagnosis, doctors who looked at me like I was fishing for a diagnosis for my nonverbal toddler, doctors who I politely told to take their "professional opinion" and stick it right where suppositories go, and who later offered no apologies when I returned with a formal diagnosis from both the Regional Center and a developmental pediatrician...they merely congratulated me for being so dedicated and unrelenting...like I'd earned a gold star for finally uncovering the truth.

I'd have shared how my toddler failed to recognize any of his loved ones, and how deafening his silence was. Then, I'd have brought it around to my decision to refuse any further vaccinations for either of my boys, and how we rejoiced when, shortly before his third birthday (and 3 weeks after beginning the GFCF diet), he said his first word...Arm...and just how sweet that one word sounded to our sleep-deprived ears. I'd have outlined the next year and a half of biomedical interventions, which brought our younger son out of the silent fog that he'd existed in, and helped him join the people who loved him most in our world. He'll be 5 in August, and speaks in full (although still developmentally delayed) sentences, has limited pretend play skills, and engages fully with all members of his immediate family. About six months into the GFCF diet (and other interventions), he also began having the first solid stools of his life, and the fecal smearing that once took upwards of 4-6 hours of my day to disinfect have become a thing of the past.

I might have also asked why Obama, who claimed to be a candidate FOR Autism families (remember that particular nugget of goodness from the "change you can believe in" days?), has all but shut our community out - at least those of us who dare insinuate that our children were harmed by vaccines...but I see a collective, sweeping failure that has yielded less of the "change" I'd "believed in" as more of the same - has not done more to figure out why our numbers continue to rise. After all, this is happening on his watch...and so far, I haven't seen much coming from Washington that hasn't nauseated me. His wife came out here to Camp Pendleton for a nice photo-op with some families of special needs military children, but other than that, not much can be heard over the collective sound of crickets chirping.

Can Autism be great? Absolutely. I have two boys who don't care what race, religion, or sexual preference a person may have, don't want or need the latest and best clothes or toys to impress friends, and are honest (almost to a fault). That innocence and purity of spirit are perhaps the best things about this journey...aside from the amazing friendships I've forged with my fellow warrior parents. However, there are enough "bumps" on this journey (I can put a lock on my door to prevent my little guy from eloping...but how do I put a lock on my older son's heart and mind, to protect him from himself when the darkness envelops him? I can't...and that mortal fear for my child - and the litany of dangers my little guy can fall prey to...is enough to shake even the strongest parent to their very foundation).

To the individuals with Autism out there who embrace their lives wholeheartedly and do not feel impeded by their condition, my hat is off to them. They're the gold standard to which I aspire my children to someday join in their ranks. But the story is far less optimistic for the majority of us, and finding a handful of people with ASD diagnoses willing to come to the fore and espouse the fantabulous world of Autismland does not an epidemic erase...and it doesn't make this mother's quest for healing any less important. I'm personally past the "why" - it's too late for us - but there is an entire generation coming up behind my children whose future is bleak if we don't find a way to put the brakes on this devastating disorder. I've been on this journey for a little over 3 years now, and I've already witnessed a family that I've personally known destroyed because a parent snapped and took their own child's life. While there is absolutely no excuse for that senseless tragedy, it is a constant reminder to me that Autism can be a lonely, dark, and sometimes, deadly place (in more ways than one) to exist. Our families need help...and above all, they deserve more than what they're currently getting from our broken government.

Nobody needs to speak for me...I'm perfectly capable of doing that for myself. What I'd REALLY like is for someone to actually LISTEN. Unfortunately, there seems to be a huge wad of cash stuck in the ear canal of those with the capacity to do something about this mess. I wonder if they'll need a committee to remove it, or at least reinstate the souls of these people.

Thank you for fighting the good fight. History will be on our side...I just hope it won't be too late for the next generation by the time someone finally decides to write the Autism chapter.

"I was stunned listening to Insel continue the IACC meeting after Mary, Katie, Mark, and Jake spoke, each giving a scathing review of IACC's record and the people in charge. He went on as if nothing happened. He didn't even attempt to justify IACC's existence in the face of charges of total incompetency."

This is exactly why Insel was selected to do the job. He is unflappable, he does not give away his emotions just continues with the script that was written for him.

OMG, Dan, you'd better insure that typing finger, that's all I've got to say! Reading your description of this pathetic, taxpayer funded, government sanctioned screwing over of the autism community is about the closest I'm gonna get to taking a vacation in this decade.

I was very pleased to hear Mary, Mark, and Jake make their public comments as well as the Canary Party showing up to protest by standing during Secretary Sebelius' comments. The tides are turning on those who scoffed, ridiculed, and lorded over our concerns. More from our community should consider writing public comments and joining the work being done. Keep up the good work.

Thank you, Dan, for this report, and thank you to all those who attended. It wasn't easy to watch this yesterday, so I don't know how everyone there made it through. Except for some smoke-clearing moments in the public comments portion, I felt like I was watching a surreal discussion on how to "humanely" maintain an epidemic of assaulted children indefinitely.

According to the magic of Wiki, Noah Britton also is apparently a punk musician and performance artist who was DX 5 years ago, when he was in college, and once embarked on a 12 day tour playing music in New England bathrooms. His comedy troupe Asperger's Are Us "take a firm position against the cure-based mentality of Autism Speaks, once quoted as saying “it’s like the Klan running the NAACP and not letting any black people in”.

I can see why they'd rather have him on the committee than Martha Herbert. She might actually want to, you know, DO something researchy (gasp!) and have the scientific gravitas to make people listen. He, on the other hand, is the embodiment of their PR campaign that autism isn't anything to worry about, hinges on a capricious and possibly erroneous diagnosis (if DSMV were applied), and produces otherwise healthy, colorful, quirky characters who can navigate the world on their own. This guy, he doesn't need any $3million in services over a lifetime, right? He doesn't wear a diaper, hit others, wander off, bang his head, have to worry about mito/gastro/seizure/autoimmune issues. It's all good, the kids are alright, right? Sigh.

At least he hates AS as much as we do. That's a start, I guess...but really, it's like a put-on for the administration earpieces who were there, right? "The Nazis turned Theresienstadt into the equivalent of a film set, the Nazis applied a fresh coat of paint to the buildings, cleaned the streets, and brought in ample props for the making of a propaganda film that depicted life at a concentration camp as comfortable and enjoyable. The little old women knit, a small boy waters a garden with an oversized water barrel, and everyone wears a lazy smile and a healthy layer of fat."

What's worse than these Fascist Bastards (IACC, Autism Speaks, APA 1, APA 2, AMA, NIH, CDC, HHS, etc. you get the point) stealing federal reserve notes (counterfeit paper printed by the Feds) of honest hardworking decent people? Sharing this "money" with their concubines (Johnson $ Johnson, Pfizer, Merck $ Company, GlaxoSmithKline, etc. you get the point) in order to poison and kill babies and children. In 1984 (how Orwellian?) Dr.Robert Mendelsohn warned us all that vaccines would prove to be a medical time bomb. I watched yesterday's display of inhumanity and cried for every baby, child and adult that has been victimized by the above agencies. AoA and Family are the Heroes in this insane bizarre nightmare.

Ann Dachel;

Speaking of DSM
I understood that they were combining aspergers and PDD-NOS-- right now I have been told the only difference between them is history. As chldren aspgerger always spoke while PDD-NOS did not. I have not been told this but it has to be true --- it the darn I Q too.

I understood that if you already had the dignosis aspergers that you would continue to have that dignosis, it is just the future kids comeing that DSM would effect..

Did anyone notice that the new guy on the committee that professor with aspberger--with those long, beauitful fingers and hands - actually breathed a big sigh of relief.

What I did not understand;
out of the group under the new DSM
*three of the apsbergers lost their dignosis
*five of the PDD-NOS lost their dignosis and was put under ADHD.

History is important - not just present for dignoisis. .

PDD-NOS their history is they did not have language to begin with - worse than the aspergers. I would like to know how in the heck PDD-NOS lost a dignosis let alone more of them than the aspergers?

Shelly, interested to see your mention of the "red shirting" on "60 minutes." as I have a Child Studies degree with an ECE emphasis and 2 late fall babies I find the issue interesting. Some observations: while it might be true that boys develop a little later, a child held back from enrolling will absolutely have no more advantage in terms of leadership abilities etc. Some neighbor went on about that one time and I assured her that my girl child's teachers were not even aware that my child was a late birthday because she displayed maturity that they did not see in many of the other students. For awhile I really agonized about my choice, though. Furthermore, there was one male child in the class that was a September birth day and held back (parents owned a fancy schmancy private pre-school- they actually were very nice people but simply wanted him to have some advantage) but the child was tall, came across as really different and assumed the role of class clown. I have later heard that he had problems and they eventually ended up skipping a grade to have him be more with same age peers. So it actually backfired for them. For my son (also a late fall birth) we did wait until he was fully 5 to enter kindergarten but we don't have any overestimation as to that being a guarantee of his success. It's not that simple. I really remember a lot of parents being judgy on the matter and funnily enough my kid attended one of the top uni's in Canada at 17 and is just fine; in fact better off than a lot of the ones who were 'held back.' Honestly,, the main consideration to keep in mind is the child's social/emotional maturity, regardless of age or sex. Some people really are very selfish but one day they'll learn. I don't know how they sleep, either!
Autistic lurker- they do not serve a place at the table when they call themselves the 'primary stakeholders' in the debate on relieving, improving autism symptoms. The primary stakeholders would be the kids who can't actually speak (even with assistive devices!), the kids who bolt, the kids who wander, the kids who can't toilet themselves, the kids who have sensory impairments and pain that causes them to scream and wail.


I'm not surprised that Sebelius and others at the IACC meeting would blame Republicans for their own lack of inaction on issues involving the vaccine link to autism. Also I'm not surprised nothing was accomplished. These people running the show at the IACC and US Dept of HHS, like Sebelius are political hacks and they have their hands out to the pharmaceutical industry, so what else is new? I dealt with similar useful idiots back in the 1990s and early 2000s at the NIH and CDC under Democrat and Republican administrations. Nothing changes. I'm just glad I'm no longer involved in wasting my time and spinning my wheels going to Washington DC. It is a swamp and sewer of lobbyists including the pharmaceutical industry and useful idiots at the US Dept of HHS.

By the way, I looked at the recent 990 for Autism Speaks for year 2010 and I wanted to check out Geri Dawson's name under compensation. On Schedule J, Part II, page 2 of the 2010 990 Form (page 48 of 96), I found the following for Geri Dawson:

Base Compensation: $387,712.00
Bonus and Incentive Compensation: $35,000.00
Other Reportable Compensation: $1,290.00
Retirement and Other Deferred Compensation: $9,800.00
Nontaxable Benefits: $22,618.00
Total $456,420.00

Other Totals (including Retirement, other reportable compensation, and nontaxable benefits):

Mark Roithmayr $391,892.00
Peter Bell $261,489.00
Thomas Hetzel $183,810.00
Patrick Kemp $229,311.00
Richard Brown $198,093.00
Sophia Colamarino $182,941.00
Andy Shih $196,308.00
Clara Lajonchere $208,482.00
Anita Sostex $213,980.00
Marc Sirkin $183,639.00
Stuart Spielman $156,583.00
William Shea $143,692.00
Scott Liebowitz $156,218.00
Jamitha Fields $146,961.00
Lorri Unumb $151,932.00

With salaries and benefits like this why would the WPA people at Autism Speaks (like Geri Dawson) want to kill the goose laying the golden egg??? Why would the IACC want to find an answer to autism when it can be a life-long WPA project

Dan -
This was just the chuckle I needed this morning! Your critique of this pathetic band of chumps is spot-on.

There has been a strong push by the ND bloggers to twist the fact that warrior parents who are fighting to heal their childrens' very severe medical issues somehow want to "cure" adults with autism, as well.

This manipulation has resulted in a small, but very vocal group of resentful people - of which the IACC managed to find THREE to sit on this committee. I'm sure they were nominated precisely for that reason.

People with autism who are eloquent enough to speak as these men did, proficient enough to advocate for themselves, and self-aware enough to know that they are happy with who they are only represent a small fraction of what we see as "autism" among children born in the 1990's and later.

Most parents of more severely affected children do everything they can to heal their childrens' vaccine injuries in the hope that their children will someday be:

* Pain-free

* Capable of speaking eloquently (or just speaking at all)

* Able to advocate for themselves (or to simply have their needs/wants recognized by caregivers)

* Happy in their own skin

This does NOT in any way mean we are trying to "cure" those people who have already achieved these goals.

@Autistic Lurker: "Why that guy don't deserve a place? We are the primary stakeholder in that debate."

Did you get that one wrong or what! :)

The only reason for the IACC to exist is to COMBAT autism. This is its mandate. The people sitting on the panel should be concerned with COMBATING autism. This is what that billion of dollars should be spent on.

COMBATING Autism Act. Remember?

com·bat
(km-bt, kmbt)
v. com·bat·ed or com·bat·ted, com·bat·ing or com·bat·ting, com·bats

1. To oppose in battle; fight against.
2. To oppose vigorously; struggle against.

etc. Or is there a new meaning to the verb COMBAT that I should be aware of ;-)

Autistic Lurker,

What debate? Whether or not Noah Britton should be cured? That's a non-debate. Nobody wants to cure him.

My head does hurt. Quoting from another comment "Noah Britton's statement about himself made it very clear that he was recruited for the position and that he guessed it was because he leads a comedy troupe.

Was this comedy?:
He was the only one of the three who did not utter another word after his intro, but spoke through his T-shirts. The first T-shirt, worn inside out, had "My body my choice" hand-scrawled on it."

My body, my choice - isn't that the point people supporting vaccine choice are trying to get across? Isn't that what those who are doing HBOT and stem cells and bio-med are doing? Isn't that what the Canary Party and the Parental Rights movement and the Just Label It movement, etc. are screaming? When we say it, we're saying something wrong. When he says it, it is a great thing to say? It is great that he likes his life and is healthy enough to know he likes his life, to actually write that on a shirt and tell people he likes himself. But what about the others?

And on a side note, did anyone see 60 Minutes on Sunday. The segment on "red shirting" kindergarten boys? I'm not opposed to holding back a child if they have cognitive struggles or learning disabilities. However, one mom interviewed said that she would do what ever it took to give her son the advantage, even if it meant holding him back and making him the oldest in his class. From the piece I didn't take it that this child had any cognitive delays or learning disabilities - he just needed a foot up in the athletic arena and he'd do better at academics if he was the oldest in the class. Holding him back would make him more competive against the younger kids. She wasn't concerned how having a child potentialy 18 months older that some of the kids would impact the class - not her worry, just her job to makes sure her child gets every advantage he deserves.

And we are the ones who are called selfish. We are the ones considered lunatics. Another sad, sad day in this country. Sadly, I have a feeling that all of those who should be ashamed of themselves slept just fine last night.

(I'm posting the same comment on both IACC stories here today.)

I was stunned listening to Insel continue the IACC meeting after Mary, Katie, Mark, and Jake spoke, each giving a scathing review of IACC's record and the people in charge. He went on as if nothing happened. He didn't even attempt to justify IACC's existence in the face of charges of total incompetency.

At the meeting Insel talked about the fact that IACC had been reauthorized until Sept 30, 2014. I was left wondering if that would be the end of IACC. In May, 2013, the APA's new DSM 5 will come out, narrowing the definition of autism to such an extent that half of those who currently are labeled autistic could lose their diagnosis. I can imagine the final meeting of IACC in 2014. Insel, Sebelius, et al. will sit there congratulating each on a job well done and Insel will announce to the nation that they've finally gotten the diagnosis right and the epidemic is over.

For years, the health care disaster that threatens the future of our country has been met with pretend science, denial, and obfuscation. IACC has engaged in autism busywork to make it appear that someone somewhere is doing something about autism. Experts and officials regularly announce they know nothing, despite non-stop studies and millions of dollars being spent. Their final coup de grace will be the redefining of autism and making the problem simply go away.

Anne Dachel, Media

Interagency Autism Coordinating Committee (IACC) has "no mission except avoiding the reality of an autism epidemic and the accompanying truth that it’s an environmental illness in which the government’s own nutty War on Germs has played the major role."

Dan, what a perfect illustration of the problem with ferreting out the cause, and more importantly, the culpability in the autism epidemic! More time, money and effort has been spent on shifting blame or simply finding new ways to contort the truth, than on helping anyone with autism. Thank you for being there so we could all get a taste of what everyone had to "stomach."

"Insel even managed to rustle up three new members for the committee who are on the spectrum, and thrilled to be there...

Would not the PARENTS of children on the Autism spectrum, who "cannot speak or go to the bathroom properly" be better members for the IACC committee ?????

Thank you all for attending and making an impression.

Any mention of the NOW 13 year old request by CONGRESS for a simple vaxed / unvaxed study to see if the Autism rates for these two groups are the SAME ?????

Even a blind eye and a bag of M & M's didn't help me get through the meeting over my internet yesterday. My ears work too well.
Maurine
Thrilled with the public comments. Wish Insulting Insel or
Sub-human Sebelius had vomited into their laps during that half hour.
Maurine

Thank you for posting the videos of Ms. Holland, Ms. Weisman, Mr. Blaxill and Mr. Crosby, and thank you, Mr. Olmstead, for your synopsis. The passion of those from our autism community was urgent, alarming, and breathtaking. I have never heard Ms. Holland speak with such emotion. Sadly, most IACC members have no passion to research the causes of autism (which are rather obvious to anyone not employed by Pharma with an affected child or affected children) or stop autism from occurring. Insel should be embarrassed and ashamed by his failure to address, and properly research the reasons for the rising numbers of children with autism occurring on his watch. Of course it is environmental. Of course it is the vaccines and their mercury- and the mercury-polluted, air, soil, and water. Of course it is the enormous amount of aluminum, in vaccines and in canned foods and canned drinks, combined with mercury from any source acting synergistically on neurons, too. Wake up, IACC! Do something worthwhile, albeit not worthwhile to Pharma. Do you need a job working for Pharma after you leave the IACC that badly that you are willing to ignore the damage to this generation of children, and the next, and the next after that? Please find your hearts and souls and help save the children.

Dan, LMAO at your coverage of the event. How can any of what they have done (mostly not done) be considered "combating" autism? More like enabling autism.

@You Can't Make This Stuff Up,

Why that guy don't deserve a place? We are the primary stakeholder in that debate.

A.L.

Good work Dan-O! Your typing finger must be smoking.

"Insel even managed to rustle up three new members for the committee who are on the spectrum, and thrilled to be there (by which I mean on both the committee and the spectrum)."

One of the three did not seem to be very thrilled to be there. Noah Britton's statement about himself made it very clear that he was recruited for the position and that he guessed it was because he leads a comedy troupe.

Was this comedy?:
He was the only one of the three who did not utter another word after his intro, but spoke through his T-shirts. The first T-shirt, worn inside out, had "My body my choice" hand-scrawled on it. He had explained that it had nothing to do with abortion. Then what? He had also said he represented "thousands" who did not want to be cured. Did his T-shirt express a fear that a band of biomed moms would chip in on an Hbot machine and force him inside, or lure him in with gluten-free cookies?

Later in the day, he stood up in the middle of the proceedings, dashed out, and showed up in a new T-shirt. This one said "Don't pity me." Ironically, he was the only one of the three who was pitiable. The 29-year-old federal appointee also wore baggy shorts and sneakers whose heals were stepped down (bedroom slipper style) exposing a gaping hole in the back of his sock that was several inches in diameter.

Was he the product of an upbringing that had taken "acceptance" to the extreme? Or was he just a rebel? Hard to say.

But I hope he doesn't upgrade his attire or start to show any hint of enthusiasm about his appointment. It all speaks so eloquently of how desperate the IACC was to find another autistic who thinks autism is just grand.

Interesting that Sebelius made special mention of the three appointees. Maybe she'll start sporting a hole in her pantyhose, in solidarity.

Simpson Wood

I am not sure I want Bernardine Healy to rest in peace (even if I would wish her to be spared untoward emetic events). I would like her spectre to stalk the earth reproaching daily her failed, corrupt, time serving, (p)sychophantic colleagues. Her job is not yet done.

Thanks to everyone representing us at this conference , thanks for reporting back the proceedings . But Dan you said it all
"I couldn’t help thinking that if the government couldn’t spend any money on healthcare, it couldn’t cause autism as effectively as it has, nor cover it up nearly as well. And the IACC wouldn't exist. So I wasn’t feeling the outrage on that one." let me join you on this one .

God bless the Rebel Alliance , Jan Crandy , and Bernadine Healey RIP .

Thank you for your constant and unwaivering diligence working for children and families affected by Autism. I wish I could have been in D.C. with you, but I could not afford to travel Autism has bankrupted me. Perhaps a good idea might be to create some sort of non-profit that will raise money to help get families to the locations they need to be (like D.C.) to assist with your lobbying.

I have seen the videos of Mark Blaxill, Katie Weisman, Jake Crosby and Mary Holland commenting before the IACC and these people did a tremendous job exposing the "do nothing, accomplish nothing" IACC committee.

Apparently, the IACC had squandered much of the morning session congratulating themsleves on the "wonderful job they have been doing" .. however .. your CRITICAL COMMENTS OF THE OVERALL PATHETIC PERFORMANCE OF THIS COMMITTEE WAS JUSTLY DESERVED!!!

"After lunch, Mark, Katie Weisman, Jake, and Mary were among those making public comments to the committee. We’ll publish those powerful statements separately."

Of course, Insel wittered on afterwards as if nothing had said. He did say that the would would discuss the critical comments at 4.30 but this did not happen. Was anyone very surprised.

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