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proverbialwisdom

(4,959 posts)
Fri Nov 15, 2013, 12:07 PM Nov 2013

(LIVE NOW) 2013 IACC Strategic Plan Update Workshop Agenda

http://iacc.hhs.gov/events/2013/strategic-planning-workshop-agenda-nov15.shtml

2013 IACC Strategic Plan Update Workshop Agenda

Friday, November 15, 2013
8:30 a.m. to 5:00 p.m. Eastern

National Institutes of Health


The registration desk opens at 8:00 a.m. Eastern for members of the public attending in person, and the meeting will also be available to the public by live videocast and conference call. The materials for the meeting can be found here.

http://videocast.nih.gov/live.asp?live=13225&bhcp=1

Link from:

http://www.ageofautism.com/2013/11/lisa-goes-iacc-testimony-1.html#more

Lisa Goes' IACC Testimony

11:45 - 12:15 p.m. Public Comment

Posted by Age of Autism at November 15, 2013 at 5:46 AM
5 replies = new reply since forum marked as read
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(LIVE NOW) 2013 IACC Strategic Plan Update Workshop Agenda (Original Post) proverbialwisdom Nov 2013 OP
2012 IACC Public Comments by Mark Blaxill. proverbialwisdom Nov 2013 #1
2012 IACC Public Comments by Professor Mary Holland. proverbialwisdom Nov 2013 #2
Positive shifts are being discussed on multiple fronts in today's meeting which will be archived. proverbialwisdom Nov 2013 #3
New developments in autism research remain aggressively rejected by DUers, not so around IACC table. proverbialwisdom Nov 2013 #4
LEARN HERE. proverbialwisdom Nov 2013 #5

proverbialwisdom

(4,959 posts)
1. 2012 IACC Public Comments by Mark Blaxill.
Fri Nov 15, 2013, 02:13 PM
Nov 2013

[div class="excerpt"



Published on Jul 10, 2012

Canary Party Chairman, Mark Blaxill, challenges the federal Interagency Autism Coordinating Committee for wasting six years and a billion dollars, and failing to make any medical recommendations on how to prevent or treat autism.

You can read Mark's formal (written only) comments to the committe here: http://www.ageofautism.com/2012/07/when-science-and-health-policy-trumps-inconvenient-evidence.html


Below are Mark Blaxill's formal comments to the IACC in July 2012.

My name is Mark Blaxill. I am the co-author of the book, The Age of Autism and recently helped to launch a movement called The Canary Party, which was created to stand up for the victims of medical injury, environmental toxins and industrial foods. Unfortunately, we need to stand up for these victims, the proverbial “canaries in the coal mine,” because so many of them cannot speak for themselves. I am also the father of a 16 year old daughter diagnosed with autism. Thanks to biomedical interventions and therapy, Michaela is more verbal, social and flexible than most affected children, but sadly, she will not live independently. She most certainly does not have a capacity for self-advocacy, so (like most affected individuals) her parents must speak for her.

Unfortunately, the climate for parent advocates, never favorable in autism, has grown progressively more hostile. We have gone from being bad parents whose contempt for their infant children caused them to withdraw into autism, to raving lunatics who are a danger to the public health and whose opinions must be suppressed.

Why? Because the autism parent community refuses to stand down in offering inconvenient evidence to the makers of science and health policy. This evidence is simple. Before 1930, the rate of autism was effectively zero. Before 1990, autism in the United States was exceedingly rare, as low as 1 in 10,000. Three months ago, we learned that 1 in 88 children born in the year 2000 were autistic, 1 in 54 boys. The conclusion is inescapable: autism is manmade.

The health policy implications of this evidence are obvious. The only rational policy for autism would

* Declare a public health emergency as our country did with poliomyelitis (a much smaller epidemic) and AIDS.
* Urgently gather good numbers on the nature and extent of the epidemic
* Objectively and without financial conflict, consider the short list of candidates for such an unusual and massive scourge
* Collaborate closely with affected families to develop answers: prevention, treatments and resources throughout the lifespan.

Sadly, the policy response of the health agencies of our government has been precisely the opposite.

* The NIH has funded research to concoct arguments that the crisis is an artifact of better diagnosing. Instead of mobilizing for the epidemic, science policy has promoted denial.

* The CDC has organized surveillance to measure autism rates that are at least a decade old and trend evidence that starts just a few short years after the epidemic started. Instead of urgently gaining insight, health policy has promoted ignorance and delay.

* The agencies of HHS act in unison to promote vaccination, a candidate exposure of great concern to parents, while agency leaders rotate out of their government positions to take lucrative jobs at pharmaceutical companies. Instead of objectivity, the investigation of cause has become fraught with conflicts

* The IACC, newly reconstituted after the explosive 1 in 88 report, appears to have been recruited to rubber stamp this policy of epidemic denial. Instead of collaboration with parent leaders, public servants have turned their backs on us.

Autism parents spend a lot of time debating how the science and health policies surrounding autism have gotten to this place. Is it because autism is merely fodder to help recover and extend the massive research investment in the human genome? Is it because psychiatry grabbed hold of autism with Leo Kanner and refuses to release its grip? Is it because pediatricians are afraid to confront the idea that they may be harming more children than they are helping? Is it because the massive resources of the pharmaceutical industry have so tilted science and medicine in the direction of their financial goals that policy is now driven by money rather than reason? Is it because government officials are too busy worrying about their retirement, too afraid to rock the boat and confront inconvenient truths? Is it because the idea that there are human costs to some aspects of technical progress is too difficult for intelligent people to accept?

Or, more hopefully, is it because some people have simply made bad decisions that we have the freedom to unmake?

I don’t propose to answer all of these questions today. Instead I want to offer you all a challenge. Unmake your bad decisions. Treat autism as an emergency and not as something to celebrate. Approach the problem of prevention with the intellectual and moral urgency that an epidemic requires. Treat the canaries in the coalmine as signals of a crisis of public health not as a public relations problem. Offer respect and standing to those who speak for the injured, don’t handpick more convenient representatives to speak against us.

Most of all, I challenge you to do the right thing. Until you do, we will keep making you feel uncomfortable.

Posted by Age of Autism at July 10, 2012

proverbialwisdom

(4,959 posts)
2. 2012 IACC Public Comments by Professor Mary Holland.
Fri Nov 15, 2013, 02:18 PM
Nov 2013


Professor Mary Holland Addresses the July 2012 Federal Autism Committee

http://www.ageofautism.com/2012/07/iacc-protest-tom-insel.html

Six Years. A Billion Tax Payer Dollars. Autism Has Doubled on Tom Insel's Watch. IACC Protest.
Posted by Age of Autism at July 05, 2012

proverbialwisdom

(4,959 posts)
3. Positive shifts are being discussed on multiple fronts in today's meeting which will be archived.
Fri Nov 15, 2013, 02:36 PM
Nov 2013

eg. 20 - 30% of kids are 'recovered.'

proverbialwisdom

(4,959 posts)
4. New developments in autism research remain aggressively rejected by DUers, not so around IACC table.
Tue Nov 19, 2013, 12:10 PM
Nov 2013
RECOMMENDED: 'Environmental' and 'biomedical' uttered by multiple Interagency Autism Coordinating Committee (IACC) members without challenge. Watch when video becomes available in archives.

http://iacc.hhs.gov/events/2013/strategic-planning-workshop-agenda-nov15.shtml
http://videocast.nih.gov/PastEvents.asp


OTOH, what I interpreted as HUGELY positive tacit validation, others more informed criticized, as in this comment at AOA summarized by the song, 'Let's See Action.'

http://www.ageofautism.com/2013/11/lisa-goes-iacc-testimony-1.html#comments

COMMENTS:

Insel practically begged the committee to come up with some justification for the $380,000,000 dollars they've spent in 5 years, then he asked them (more than once), what do we know now that we didn't know then? (Why, as head of this committee, doesn't he know that off the top of his head?) CDC director Colleen Boyle stated that we won't have answers for another 5 to 10 years, while all these self absorbed, defensive academicians and scientists described all the "rich data" and "robust" work (the words "rich" and "robust" are being permanently removed from my vocabulary after yesterday because they both now make me nauseous). A developmental pediatrician on the committee expressed concern for her license that she is using treatments that have not been approved but that work and she tells them that 5 years (let alone 10) is too long for the public to wait for researchers to make an impact on the clinical setting. There was no shortage of empty statements, like "the quality of life has been improved for individuals with autism" with absolutely no evidence to back them up. The word environmental was thrown around as though it is descriptive enough in itself - no identification of any specific environmental toxin outside of Lynn Redwood's comment where she included mercury in a short list (and the excellent public statements which were ignored). She also stated that some 30% of autistic children are being recovered using alternative and complementary treatments (I wonder how many times she has said that in prior meetings), and that was ignored as the discussion continued with the predominant themes being that they know a lot, they know a little, they don't know anything, they can't help, maybe in 5 or 10 years, but they are doing a terrific job.

<>

Posted by: Linda | November 16, 2013 at 01:04 PM


RELATED: http://www.ageofautism.com/2013/11/public-enemy-number-one-white-suburban-educated-moms.html

proverbialwisdom

(4,959 posts)
5. LEARN HERE.
Thu Nov 21, 2013, 03:17 PM
Nov 2013
http://videocast.nih.gov/summary.asp?Live=13225

Air date: Friday, November 15, 2013, 8:45:00 AM
Time displayed is Eastern Time, Washington DC Local

Category: Interagency Autism Coordinating Committee
Runtime: 07:33:03


Description: The workshop will feature discussions between IACC members and external subject matter and community experts regarding updates from the field and from the community that the committee may consider when developing the 2013 update of the IACC Strategic Plan.
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