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FYI, SPEAKING TRUTH TO POWER: AOA on "IACC Full Committee Meeting - July 2013"
"Oh, no, that is a verboten subject at IACC - outside the public comment (truth telling) period, of course."- Katie Wright
http://videocast.nih.gov/summary.asp?Live=12921
VIDEO
Air date: Tuesday, July 09, 2013, 9:00:00 AM
Total views: 1331 (768 Live, 563 On-demand)
Description: Meeting of the Interagency Autism Coordinating Committee
Author: Dr. Thomas Insel
Runtime: 07:51:21
Permanent link: http://videocast.nih.gov/launch.asp?18032
VIDEO
Air date: Tuesday, July 09, 2013, 9:00:00 AM
Total views: 1331 (768 Live, 563 On-demand)
Description: Meeting of the Interagency Autism Coordinating Committee
Author: Dr. Thomas Insel
Runtime: 07:51:21
Permanent link: http://videocast.nih.gov/launch.asp?18032
http://www.ageofautism.com/2013/10/for-payam-iacc-comments-make-tom-insel-squirm.html#more
Posted by Age of Autism at October 11, 2013
For Payam: IACC Comments Make Tom Insel Squirm
By Katie Wright, Contributing Editor to Age of Autism
IACC: http://videocast.nih.gov/summary.asp?Live=12921
18 years ago Albert Enayati’s son, Payam was a happy, healthy well-adjusted toddler learning English as well as his parents’ native Farsi. Payam had reached or exceeded all age appropriate toddler milestones. However, after a series of childhood vaccines, most of which contained an excessive amount of mercury, Payam rapidly regressed into severe autism. Payam lost all his language and all his skills. As a result Albert became a pioneering autism advocate, involved in the inception of both SAFEMINDS and Cure Autism Now.
I want to draw attention to hour 4:05 on the IACC video cast Albert Enayati shows at IACC. Please view it. It is an incredibly compelling video of Payam today. Payam is yelling and hits this head with a closed fist so continually and ferociously that he has bald spots on his scalp. The family had to split up into 2 houses because of Payam’s unpredictable violence. Yes, Payam received early intervention ABA and speech but to no avail, behavioral interventions do not reverse mercury poisoning.
In 2011 the National Vaccine Advisory Committee recommended that the NIH study adjuvants and the vaccine schedule as they are administered. The IACC committee then voted to put vaccine research into the NIH autism research Strategic Plan. This proposed study would have amount to less than .01% of autism research monies. However, at the following IACC meeting, with no discussion or debate, Dr. Insel suddenly and unilaterally vetoed the committee vote. Albert asked Dr. Insel why he has blocked this research. It is a perfectly reasonable question.
Insel lost his typically cool persona and became visibly agitated as he claimed to have no power to decide what kind of autism research gets funded. Sorry Dr. Insel you cannot have it both ways, you unilaterally overturned a full and fair IACC committee vote, YET you no have no power to make research commendations? Good luck selling that argument.
Dr. Insel is easily the MOST powerful person regarding autism research at the NIH. He has chaired the Inter Agency Autism Coordinating Committee for over decade. I do not think that his boss NIH Director Francis Collins has sat through even 1 meeting IACC. Dr. Collins told us himself at an autism community meeting that he relies on Dr. Insel that they speak often about IACC and autism. So I think Dr. Insel is able to make p-l-e-n-t-y of recommendations.
Albert was asking why Dr. Insel overturned the committee’s recommendations yet Insel totally refused to answer the question. Just because one is an unelected bureaucrat does not mean one is unaccountable to the public. It was a reasonable question that Insel should be compelled to answer.
Instead of answering Albert’s question Insel starting scolding Albert as if he were the bad guy in all of this. The absence of empathy I have witnessed time and time again towards parents like Albert and children like Payam never fails to astonish me. How could a doctor not be moved to action, moved to help, moved to DO something to help severely affected people with autism after seeing the devastating video of Payam? How is that none of the federal representatives, people who have power to help the Payams in the world, did nothing, said nothing to Albert? How is it that no one even asked a question about Payam?
Scott Robertson, who never fails to take an opportunity to talk about the neglected needs of ASD adults, was suddenly silent. Noah Britton, fervent supporter of ASD adult issues was absent and hence, silent. Jon Elder Robison another ASD adult advocate had nothing to say after Payam’s video. OK, so here was their big chance to show us that the HF ASD (high functioning Autism Spectrum Disorder) people on IACC are about more than HF ASD people. They failed.
Was Payam ignored because he makes Dr. Insel and some of the other IACC members uncomfortable? Not too long ago Dr. Insel held a special autism conference: “Autism: Being Different!” all about the gifts and wonders of autism! Yeah! Autism is terrific! Payam does not figure into that carefully cultivated picture of a quirky but brilliant young man. There was no special Insel conference on “Typically Developing Toddlers Who Regress Into Severe and Self Injurious Autism!” Oh, no, that is a verboten subject at IACC - outside the public comment (truth telling) period, of course.
After the video was shown all I could see was Albert’s courage and the NIH’s shame. Dr. Insel and NIH research reviewers have ignored autistic children like Payam for 2 decades. Personally I would find the guilt paralyzing, but that’s me…and you I am sure. Like 99% of the people, I would be unable to function knowing I had the power to help all those Payams but did not. Year after year almost no NIH money is invested in the causes of regression or on biomedical research to help severely biologically and medically affected people with ASD. Little wonder that Dr. Insel hustled Albert off the podium with such urgency.
Dr. Insel halted Albert’s public comment after just a few minutes. Why was Albert, who came all the way from Los Angeles, held to the strict 3 minute speaking limit? Dr. Lee Watchel of Kennedy Krieger rambled on for at least 25 minutes in excess of her allotted time about ECT in 19th century Russia! Who has more of a right to be heard: a severely disabled, self injurious man who basically has this 1 opportunity in his entire life to present his challenges to IACC or a local doctor promoting ECT? Who is IACC set up to serve: disabled citizens or the Electro Convulsive Shock industry?
The answer is obvious, unless the self-injurious severely affected young man makes you very, very uncomfortable.
Katie Wright is Contributing Editor to Age of Autism.
Posted by Age of Autism at October 11, 2013
Posted by Age of Autism at October 11, 2013
For Payam: IACC Comments Make Tom Insel Squirm
By Katie Wright, Contributing Editor to Age of Autism
IACC: http://videocast.nih.gov/summary.asp?Live=12921
18 years ago Albert Enayati’s son, Payam was a happy, healthy well-adjusted toddler learning English as well as his parents’ native Farsi. Payam had reached or exceeded all age appropriate toddler milestones. However, after a series of childhood vaccines, most of which contained an excessive amount of mercury, Payam rapidly regressed into severe autism. Payam lost all his language and all his skills. As a result Albert became a pioneering autism advocate, involved in the inception of both SAFEMINDS and Cure Autism Now.
I want to draw attention to hour 4:05 on the IACC video cast Albert Enayati shows at IACC. Please view it. It is an incredibly compelling video of Payam today. Payam is yelling and hits this head with a closed fist so continually and ferociously that he has bald spots on his scalp. The family had to split up into 2 houses because of Payam’s unpredictable violence. Yes, Payam received early intervention ABA and speech but to no avail, behavioral interventions do not reverse mercury poisoning.
In 2011 the National Vaccine Advisory Committee recommended that the NIH study adjuvants and the vaccine schedule as they are administered. The IACC committee then voted to put vaccine research into the NIH autism research Strategic Plan. This proposed study would have amount to less than .01% of autism research monies. However, at the following IACC meeting, with no discussion or debate, Dr. Insel suddenly and unilaterally vetoed the committee vote. Albert asked Dr. Insel why he has blocked this research. It is a perfectly reasonable question.
Insel lost his typically cool persona and became visibly agitated as he claimed to have no power to decide what kind of autism research gets funded. Sorry Dr. Insel you cannot have it both ways, you unilaterally overturned a full and fair IACC committee vote, YET you no have no power to make research commendations? Good luck selling that argument.
Dr. Insel is easily the MOST powerful person regarding autism research at the NIH. He has chaired the Inter Agency Autism Coordinating Committee for over decade. I do not think that his boss NIH Director Francis Collins has sat through even 1 meeting IACC. Dr. Collins told us himself at an autism community meeting that he relies on Dr. Insel that they speak often about IACC and autism. So I think Dr. Insel is able to make p-l-e-n-t-y of recommendations.
Albert was asking why Dr. Insel overturned the committee’s recommendations yet Insel totally refused to answer the question. Just because one is an unelected bureaucrat does not mean one is unaccountable to the public. It was a reasonable question that Insel should be compelled to answer.
Instead of answering Albert’s question Insel starting scolding Albert as if he were the bad guy in all of this. The absence of empathy I have witnessed time and time again towards parents like Albert and children like Payam never fails to astonish me. How could a doctor not be moved to action, moved to help, moved to DO something to help severely affected people with autism after seeing the devastating video of Payam? How is that none of the federal representatives, people who have power to help the Payams in the world, did nothing, said nothing to Albert? How is it that no one even asked a question about Payam?
Scott Robertson, who never fails to take an opportunity to talk about the neglected needs of ASD adults, was suddenly silent. Noah Britton, fervent supporter of ASD adult issues was absent and hence, silent. Jon Elder Robison another ASD adult advocate had nothing to say after Payam’s video. OK, so here was their big chance to show us that the HF ASD (high functioning Autism Spectrum Disorder) people on IACC are about more than HF ASD people. They failed.
Was Payam ignored because he makes Dr. Insel and some of the other IACC members uncomfortable? Not too long ago Dr. Insel held a special autism conference: “Autism: Being Different!” all about the gifts and wonders of autism! Yeah! Autism is terrific! Payam does not figure into that carefully cultivated picture of a quirky but brilliant young man. There was no special Insel conference on “Typically Developing Toddlers Who Regress Into Severe and Self Injurious Autism!” Oh, no, that is a verboten subject at IACC - outside the public comment (truth telling) period, of course.
After the video was shown all I could see was Albert’s courage and the NIH’s shame. Dr. Insel and NIH research reviewers have ignored autistic children like Payam for 2 decades. Personally I would find the guilt paralyzing, but that’s me…and you I am sure. Like 99% of the people, I would be unable to function knowing I had the power to help all those Payams but did not. Year after year almost no NIH money is invested in the causes of regression or on biomedical research to help severely biologically and medically affected people with ASD. Little wonder that Dr. Insel hustled Albert off the podium with such urgency.
Dr. Insel halted Albert’s public comment after just a few minutes. Why was Albert, who came all the way from Los Angeles, held to the strict 3 minute speaking limit? Dr. Lee Watchel of Kennedy Krieger rambled on for at least 25 minutes in excess of her allotted time about ECT in 19th century Russia! Who has more of a right to be heard: a severely disabled, self injurious man who basically has this 1 opportunity in his entire life to present his challenges to IACC or a local doctor promoting ECT? Who is IACC set up to serve: disabled citizens or the Electro Convulsive Shock industry?
The answer is obvious, unless the self-injurious severely affected young man makes you very, very uncomfortable.
Katie Wright is Contributing Editor to Age of Autism.
Posted by Age of Autism at October 11, 2013
3 replies
= new reply since forum marked as read
= new reply since forum marked as read
http://thinkingmomsrevolution.com/we-go-together-like-football-and-vioxx/
We Go Together Like Football and Vioxx
Posted on October 10, 2013 by LuvBugTMR
Popping up through the news feed this Fall has been the tale of the NFL and their players settling the “Concussions Suit” for $765 million dollars. Admitting no wrong doing, the NFL settled with 4500 players after a judge ordered to arbitration a case that contends information regarding the seriousness of head injuries was downplayed or withheld from players. The settlement is viewed as a win for the League as the drawn out legal maneuvering and dark PR cloud of denying these injuries could have been costly in terms dollars and reputation.
More than a couple folks have pointed out the similarities between the power the NFL must have in order to hush this issue for so long, and the pharmaceutical industry...
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[img]
[/img]
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[img]
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That is why it is so important to take the time to stop and THINK.
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We Go Together Like Football and Vioxx
Posted on October 10, 2013 by LuvBugTMR
Popping up through the news feed this Fall has been the tale of the NFL and their players settling the “Concussions Suit” for $765 million dollars. Admitting no wrong doing, the NFL settled with 4500 players after a judge ordered to arbitration a case that contends information regarding the seriousness of head injuries was downplayed or withheld from players. The settlement is viewed as a win for the League as the drawn out legal maneuvering and dark PR cloud of denying these injuries could have been costly in terms dollars and reputation.
More than a couple folks have pointed out the similarities between the power the NFL must have in order to hush this issue for so long, and the pharmaceutical industry...
<>
[img]
[/img]
<>
[img]
[/img]
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That is why it is so important to take the time to stop and THINK.
Rarely do we find men who willingly engage in hard, solid thinking. There is an almost universal quest for easy answers and half-baked solutions. Nothing pains some people more than having to think.
- Martin Luther King, Jr.
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