So this.
News and commentary on the autism epidemic and my beautiful boy who is living with autism.
Showing posts with label Thomas Insel. Show all posts
Showing posts with label Thomas Insel. Show all posts
April 13, 2012
Fire Tom Insel
Chandler woke up at 3am and cried because it was not 6am. After I finally got him back to sleep, all I could do was lay in bed and stew about what a corrupt and horrible man Tom Insel is for working so hard to keep our kids trapped in autism land, and to fill our ranks with new families that have their children poisoned every day, that I had to get out of bed and get the bad thoughts out of my brain.
So this.
So this.
April 4, 2012
Tom Insel's Lame Attempt to Save His Job
Monday our community called for the unceremonious firing of The man who has spent the last six years perpetuating the autism epidemic by sabotaging the natural progress of research and inquiry. IACC chief Tom Insel (brother to a vaccine maker) has directed research from this environmentally caused epidemic to genetics... wasting millions of dollars and lives.
So about ten minutes ago, Insel sends out a link to a new blog he has written entitled:
So about ten minutes ago, Insel sends out a link to a new blog he has written entitled:
The New Genetics of Autism – Why Environment Matters
So my immediate thought is... "Well apparently we have gotten his attention, and he is going to now have to tip his had to environmental causes to stay in the game. Let's see what he has to say."
Well he certainly starts out asking the right questions:
Increasing prevalence suggests environmental factors like chemicals and microbes changing over the past decade, whereas genes change over generations. Why is anyone looking for genetic causes when there is such a rapid increase in prevalence? Shouldn’t every research dollar be invested in finding the environmental culprit rather than searching for rare gene variants?
Imagine my shock when he then fails to answer those burning questions and, who would have guessed it, he spent the whole piece promoting GENETICS! The thing actually should have been entitled, "The New Genetics of Autism - Why Genes Matter - Seriously They Do - Please Don't Fire Me - I'm Really Smart."
Un-freaking-believable!
He flat out says that at most 20% of cases are "genetic," and that seems to be his justification for not answering "Hell, YES!" to that last question on shouldn't research dollars be going to environmental causes!
He does say of course the obligatory, "environment plays a role," but even freely admits that genetic research will NOT find environmental causes! But hey... lets keep pouring our time, money and children down that bottomless pit called 'Genetic Research on Autism.'
This what I see when I read this horrid essay:
Hi. I'm Tom Insel.
I have been entrusted with finding the causes and cures of autism for the last six years, but instead, autism rates have more than doubled on my watch. I freely admit that more than 80% of autism is environmental, and less than 20% can be attributed to genetic causes, but I have decided to ignore the environmental factors in autism that could, if found and quickly addressed to prevent exposures, could end the autism epidemic in the next two or three birth cohorts.
Instead, I am going to continue to pour hundreds of millions of tax payer dollars into genetic studies that have not yet prevented one case of autism, nor lead to one medical treatment for autism, into this dead end, just in case we find something really cool that might help us call some kinds of autism one thing and some kinds of autism something else. They still won't tell us what we can do to prevent autism in kids of parents who have these genes, and it might even be that the genes are not even the parents genes, but genes that get broken in the sperm cells cause they are poisoned or microwaved or whatever in daddy's drawers before conception, but still... how cool is it to find different genes and stuff!
My earnest hope has been that you wouldn't notice that I have already wasted 700 million dollars doing nothing and issuing reports that say nothing except, "send me more money to figure this out, I am totally gonna fix this, I swear... but it is just so hard!", but as a hundred thousand or so of you in the autism community have just called for me to be fired, I am guessing that is out the door. So now I am really just hoping that I can get away with using the word "environmental" in a title on my blog and you will be fooled into thinking I am taking the autism epidemic seriously.
Failing that, I can only hope that you have decided that I am an ineffectual douchbag who does not have the competence to figure this out, because if that does not fly, it will be super apparent to anyone to takes a hard look at me that I am a corrupt bastard trying to preserve my brother Dick's interest and those of the Administrations big donors. Also HHS... please don't notice that we are actually a vaccine maker too, and get cash payments from the people you THINK are making the vaccines, like Merck, cause we hold patents on the shots that we recommend you buy from them. (Have you heard about my brother Dick? Yyou see he brought a vaccine to market, sold the company to Wyeth, then went to work trying to cure diabetes. See what he did there... make a product that causes autoimmune disorders, then make a bundle treating autoimmune disorders! Money coming and going... genius really. He is the smarter brother, I will give him that.)
Also about HHS... please don't notice that we are actually a vaccine maker too, and get cash payments from the people you THINK are making the vaccines, like Merck, cause we hold patents on the shots that we recommend you buy from them. Yes I work for NIH and yes NIH holds the Gardasil patent, and yes NIH gets a check for every Gardasil shot you buy, and no we never disclose that, but I swear... vaccines are not a problem. It genes. Really.
In closing, please notice what a pleasant smile I have. Autism parents are good people.
Full text of the blog piece:
The New Genetics of Autism – Why Environment Matters
Last week’s autism news was about prevalence. The CDC reported a 78 percent increase in autism prevalence since 2002. This week’s autism news is about genetics—three papers in Nature describe new genes associated with autism. For many people, these two stories seem contradictory or, at best, unrelated. Increasing prevalence suggests environmental factors like chemicals and microbes changing over the past decade, whereas genes change over generations. Why is anyone looking for genetic causes when there is such a rapid increase in prevalence? Shouldn’t every research dollar be invested in finding the environmental culprit rather than searching for rare gene variants?The simple answer is that some autism is genetic. Autism, like schizophrenia and mood disorders, includes many syndromes. Indeed, we should probably speak of the “autisms.” Some of these autisms are single gene disorders, such as Fragile X, tuberous sclerosis, and Rett syndrome. While these rare genetic disorders account for less than 5 percent of children within the autism spectrum, children with any of these disorders are at high risk for autism, roughly a 30-fold higher risk than the general population and higher than any of the other known risk factors. Recent genomics research has discovered that many children diagnosed within the autism spectrum have other genetic mutations that have not yet been designated as named syndromes. Each of these mutations is rare, but in aggregate they may account for 10 - 20 percent or more of what we have been calling the autisms.1The new papers published today in Nature use an approach called whole exome sequencing, mapping every base of DNA across the exome—the 1.5 percent of the genome known to code for protein. The three research groups are members of the Autism Sequencing Consortium (ASC), an international team of autism genetics researchers. All three look for de novo or spontaneous mutations, changes in DNA sequence that are not found in either parent. Recent sequencing studies in the general population have demonstrated that each of us diverges genomically from our parents — the process of reproduction introduces variation even beyond the random mixture of the genomes we inherit from mom and dad. People with autism and schizophrenia are far more likely to have large de novo copy number variants, sometimes a million bases of DNA that are abnormally duplicated or deleted and not found in either parent.These new papers go beyond the previous discovery of de novo copy number variants to identify de novo single base changes associated with autism. This is tough sailing because there are so many of these changes in all of us and most of these single base changes have no impact. These studies tried to improve the odds of success by focusing on individuals from families with no one else affected (these are called “simplex” families), and sometimes comparing the individual with autism to a sibling without autism. The results are intriguing.There is no breakthrough or single gene that is a major new cause of autism. But the role of genetics becomes even more evident when these single base changes are considered. For instance, an individual with autism is nearly 6-fold more likely to have a functional variant in genes expressed in the brain. Sanders et al. estimate as many as 14 percent of affected individuals have such a risk variant.2 This 14 percent is in addition to the 10–20 percent with a large copy number variant or identified genetic syndrome. O’Roak et al. find that 39 percent of these variants are related to a specific biochemical pathway, important for brain signaling.3 And Neale et al., while cautioning that the net effect of all of these changes still leave much of the risk for autism unexplained, note the roles of a few specific genes as genuine risk factors.4Stepping back from this flood of genomic information, what is most important? First, these reports along with previous publications confirm that genetic risk is both complex and substantial. While individual genes appear to confer limited risk, the aggregate effect of spontaneous coding mutations across the genome is now estimated to increase the risk of autism by 5–20-fold.4 Complex genetics does not mean modest effects.Second, the kinds of small and large genetic changes associated with autism are common in everyone. Risk is conferred not by the size of the mutation or the number of mutations (we all have many) but by the location. Increasingly, we see that interference with the genes involved in development of synapses confer risk; a similar change upstream or downstream does not.A third point takes us back to the questions we started with. It is important to understand that de novo mutations may represent environmental effects. In other words, environmental factors can cause changes in our DNA that can raise the risk for autism and other disorders. One of these papers reports that spontaneous changes are four times more likely to show up in paternally inherited DNA and are correlated with paternal age.2 The father’s germline, his sperm cells, turn over throughout the lifespan. Presumably, with advancing paternal age, there are a greater number of spontaneous mutations and a greater likelihood that some of these will affect risk genes. Environmental factors and exposures can cause sperm cells to develop mutations that are not found in the father’s somatic, or body cell, DNA, but these new, spontaneous mutations can be passed to the next generation, raising the risk for developing autism. In the initial report of the relationship between autism and paternal age, boys with autism were 6-fold more likely to have a father in his 40s vs his 20s. In girls with autism, this difference went up to 17-fold.5 Paternal age has, of course, increased in the past few decades. This does not explain the increasing prevalence of autism, but it may contribute.Is autism genetic or environmental? These new studies suggest it can be both. Genetics will not identify the environmental factors, but it may reveal some of the many syndromes within the autism spectrum (as in other neurodevelopmental disorders), it can define risk (as in other medical disorders), and it should yield clues to the biology of autism (revealing potential targets for new treatments). These three new papers on spontaneous mutations are an important milestone in a long journey. In parallel we need to find environmental factors, recognizing that there will be many causes for the autisms and many roads to find them.Finally, an unavoidable insight from these new papers is that autism even when genetic may be spontaneous and not inherited in the sense that one or both parents carry some reduced form of the syndrome. Perhaps this insight will finally reduce the “blame the parents” legacy perpetuated for too long in the absence of scientific evidence.References
1Geschwind DH. Genetics of autism spectrum disorders. Trends Cogn Sci. 2011 Sep;15(9):409-16. Epub 2011 Aug 18. PubMed PMID: 21855394.1
2Sanders SJ, Murtha MT, Gupta AR, Murdoch JD, Raubeson MJ, Willsey AJ, Ercan-Sencicek AG, DiLullo NM, Parikshak NN, Stein JL, Walker MF, Ober GT, Teran NA, Song Y, El-Fishawy P, Murtha RC, Choi M, Overton JD, Bjornson RD, Carriero NJ, Meyer KA, Bilguvar K, Mane SM, Sestan N, Lifton RP, Günel M, Roeder K, Geschwind DH, Devlin B, State MW. De novo mutations revealed by whole-exome sequencing are strongly associated with autism. April 5, 2012. Nature.
3O’Roak BJ, Vives L, Girirajan S, Karakoc E, Krumm N, Coe BP, Levy R, Ko A, Lee C, Smith JD, Turner EH, Stanaway IB, Vernot B, Malig M, Baker C, Reilly B, Akey JM, Borenstein E, Rieder MJ, Nickerson DA, Bernier R, Shendure J, Eichler EE. Sporadic autism exomes reveal a highly interconnected protein network of de novo mutations. Nature. April 5, 2012.
4Neale BM, Kou Y, Liu L, Ma’ayan A, Samocha KE, Sabo A, Lin CF, Stevens C, Wang LS, Makarov V, Polak P, Yoon S, Maguire J, Crawford EL, Campbell NG, Geller ET, Valladares O, Schafer C, Liu H, Zhao T, Cai G, Lihm J, Dannenfelser R, Jabado O, Peralta Z, Nagaswamy U, Muzny D, Reid JG, Newsham I, Wu Y, Lewis L, Han Y, Voight BF, Lim E, Rossin E, Kirby A, Flannick J, Fromer M, Shair K, Fennell T, Garimella K, Banks E, Poplin R, Gabriel S, DePristo M, Wimbish JR, Boone BE, Levy SE, Betancur C, Sunyaev S, Boerwinkle E, Buxbaum JD, Cook EH, Devlin B, Gibbs RA, Roeder K, Schellenberg GD, Sutcliffe JS, Daly MJ. Patterns and rates of exonic de novo mutations in autism spectrum disorders. Nature. April 5, 2012.
5Reichenberg A, Gross R, Weiser M, Bresnahan M, Silverman J, Harlap S, Rabinowitz J, Shulman C, Malaspina D, Lubin G, Knobler HY, Davidson M, Susser E. Advancing paternal age and autism. Arch Gen Psychiatry. 2006 Sep;63(9):1026-32. PubMed PMID: 16953005.Learn more about: Autism, Children and Adolescents, Genetics. View all posts about: Autism, Children and Adolescents,Genetics.
April 14, 2011
Mark Blaxill Public Comment to the IACC: A Time to Lead
AoA ran this piece a few days ago. I am reprinting it here to make sure my readers didn't miss it.
Please repost everywhere.
Blaxill has spoken for us, yet again, and landed an eloquent punch.
How ever long they think they can ignore this, they cannot outlast us.
Please repost everywhere.
Blaxill has spoken for us, yet again, and landed an eloquent punch.
How ever long they think they can ignore this, they cannot outlast us.
A Time to Lead
My name is Mark Blaxill. I am the father of a 15 year old daughter diagnosed with autism, a Director of SafeMinds and editor-at-large of Age of Autism. I am also a co-author of The Age of Autism: Mercury, Medicine and a Manmade Epidemic. Since our book was published last September I have had the privilege of traveling across the country to meet with dozens of groups and thousands of families affected by autism. I was deeply impressed by the affected individuals, mothers, fathers and family members I met on our tour. Above all else, I was impressed by how so many families have the same story to tell and by how many of us are asking for the same things. We are asking for bold leadership that unfortunately we have not yet seen.
Most directly, in the midst of the greatest childhood epidemic of all of our lives, we are trapped in an historic failure of the scientific process. Thomas Kuhn taught us how communities of “normal scientists” can prevent progress and trap important field of inquiry in scientific orthodoxy. We have seen this pattern play itself out in autism, first in the idea that parents and especially mothers caused autism because they hated, indeed even wanted to murder their children. More recently we have been trapped in the equally failed search for inherited autism genes. In the meantime, we are investing next to nothing in environmental causation. This is a fundamentally irrational approach, yet the orthodox researchers who benefit from this irrationality have defended their territory while they invoke science in the name of their own interests. Not a single dollar spent in the process has prevented a single case of autism. Worse than that, we are spending millions of dollars to promote denial.
In an environment of increasing budget scarcity, this is more than just a scientific failure; it’s an economic one as well. We are wasting taxpayer resources and approaching the governance process with a lack of urgency that seeps into all aspects of autism science. As a near monopsonistic buyer, NIH has a unique power in setting scientific agendas. The IACC should serve the consumers of autism science. Instead you appear to most of us to serve the medical industry, aiding and abetting the fiction that the controversies over autism research pit “parents vs. science.” In reality, that couldn’t be further from the truth. The real controversy is one between critical consumers of autism science and the orthodox producers whose work has failed us. In the debate between the autism community and the medical industry, your responsibility here should be clear.
This is not an abstract problem. 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. Today, with roughly 1% of children born in the 1990s, it should be breathtakingly clear that autism is manmade. And that makes the autism epidemic not merely a public health crisis but a crisis of public ethics and morality as well. Hundreds of thousands of children, now growing to adulthood, are victims of preventable injury, a form of invisible violence. It is a form of violence that requires witnesses. Yet because of the nature of the injuries involved those witnesses must typically have scientific, medical or technical training. In large part, this witness pool also has career and economic interest in the medical industry, one of the main suspects. Tragically, but perhaps not surprisingly, we are seeing a moral failure of enormous proportions, as potential witnesses are sanctioned, censored and intimidated while the entrenched power of the orthodoxy has successfully sustained its prerogatives. This is not right. More to the point, it is not good. And it is long past time for a change.
More than any other single group of individuals, you members of the IACC are in a position to lead that change. That requires many things of you. It requires you to pay attention. It requires you to think independently and rationally. It requires you to take personal risk. It requires you to challenge close friends and colleagues who are part of the orthodoxy that perpetuates the problem. Above all, it requires moral courage. The only thing it does not require is that you wade through the complex machinations of denial because the problem is simple and staring you in the face. We are staring you in the face. And because autism is what it is, we will be standing in front of you until we are gone, or until you have done the right thing, whichever comes first.
October 19, 2009
Autism Chair Thomas Insel Refuses to Ride in an Elevator With an Autistic Child
"I'm not riding up with them" - Dr. Thomas Insel
On April 17, 2007, Holly Bortfeld attended an autism hearing in the Senate Appropriations Subcommittee run by Senator Tom Harkin. At that hearing Dr. Thomas Insel, Director of the National Institute of Mental Health, now current head of the Interagency Autism Coordinating Committee, was there to testify.
Beforehand, Ms. Bortfeld, was waiting with her 11 year old son Max, who has autism, at an elevator on the way up to the hearing. When the doors opened they got on. After they did, Thomas Insel and a female companion approached and entered the elevator just before the doors closed. Ms. Bortfeld reports that once they were on the elevator together...
"...Max stimmed. Insel looked at him, looked at me (yes, he had his little name tag on, so he knew that I knew he was) then he hit the open door button and ushered his coworker off. As the doors were closing, he said "I'm not riding up with them", looking at my son."
The head of the National Institutes of Mental Health refused to ride an elevator with a child with mental health issues.
...again for clarity and perspective on this episode...
The chair of the Interagency Autism Coordinating Committee will not share an elevator with a child with autism, on the way into an autism hearing.
This odious behavior is not one of a healer committed to the well being of the disadvantaged or disabled, it is the behavior of a bigot.
It is just one more example of the pattern of astonishing contempt that Insel shows towards the autism community, as he routinely leaves IACC meetings early, dismisses the input of the autism community, and chairs an autism committee with some completely inappropriate appointments, like...
- Alison Singer, who was asked to resign from Autism Speaks because of her behavior on the IACC, but is still considered qualified by Insel to be on the committee, presumably because she now runs an "autism organization" out of her basement that she subsequently founded with vaccine maker Paul Offit (who admits he has never treated a child for autism), and despite the fact that she is widely disliked by both members of the neurodiversity community and the biomedical community. (Or perhaps because Singer went to college with HHS head Kathleen Sebelius?)
- Dr. Yvette Janvier, who is highly offended at the idea that people with autism could possibly have GI dysfunction despite the fact that now even the denialist CDC now tells docs to screen for GI disturbances in children with autism, and who, despite being neither a person with autism nor an autism parent, is holding a seat meant for members of the public
- Dr. Storey Landis who resigned this weekend after passing notes during an IACC meeting disparaging another member who is an autism mom
- And perhaps the strangest appointment of all to the committee, Insel's neighbor, a reportedly pleasant autism parent that does not represent any group, does not do any public advocacy, does not seem comfortable with discussing autism science and doesn't seem to have any qualifications for being on the IACC. What are the odds that one of the most well qualified autism parents to sit on the most powerful government panel on autism just happens to live in the neighborhood of the chair of the IACC?
Add to that the fact that after the IACC voted to add vaccine/autism research to the government's strategic plan for autism, Insel pulled classic, corrupt smoke filled back room shenanigans, schemed to get people to change their votes, and then surprised public members of the committee with a revote, not on the agenda, but known to Alison Singer who had parted with Autism Speaks the night before because they didn't approve of her upcoming vote change, to ditch the vaccine research.
Insel also canceled research on chelation as a treatment for autism with the justification that DMSA chelation was to dangerous to even study, despite the fact that it has been the standard treatment for metal toxicity since the Navy developed it in the late 1950's, and is the treatment of choice for lead poisoning in children.
And why was Insel, the head of the National Institute of MENTAL Health present to testify with CDC chief Thomas Frieden at the H1N1 hearing held by the House Oversight and Government Reform Committee? Flu is not a mental health issue, is it? [Update - My bad... it was Anthony Fauci at the hearing... not Thomas Insel.]
Could it be that vaccines are the Insel family business and Insel's participating in this whole IACC political theater is merely to protect the vaccine program? It is surely is not because he has a heart for those with autism, as he won't dane to be in their presence and it cannot be because he is fascinated with autism itself, as he can't be bothered to sit through the meetings themselves.
Insel cares so little for people with autism that he actually ended a meeting early, preventing the testimony to the IACC of a child with autism who had flown in from California to address the committee. The child actually had to give his speech to an empty room.
Thomas Insel is an embarrassment to NIMH and the IACC is an complete farce under his leadership. I join with Dan Olmsted and call for his resignation from his leadership positions of both organizations, and for him to take his bogus committee appointees with him.
Please contact President Obama and demand the dismissal of Thomas Insel from NIMH and IACC, and put an end to the fraud, corruption and CYA in autism causation. Demand that someone who loves and values those with disabilities, who will legitimately pursue autism treatment and causation, WHO HAS A TRACK RECORD OF BOTH, be put in his place, not another elitist bureaucrat.
End the charade of the IACC, its obstruction of advancement in autism research and its complicity in the growing autism epidemic.
October 2, 2009
CDC to Announce New 1 in 100 Autism Prevalence Rate
Today in a conference call with Kathleen Sebelius and Thomas Insel, HHS told a small circle of autism groups that they would be releasing the new 1 in 100 autism rate on Monday.
They cautioned however, that they didn't know if the increase was a real increase or whether greater awareness... changes in measurement methods... better diagnosis... blah blah blah... because apparently our government doesn't even read their own publications.
The whole thing was so predictable that I could have written it for them yesterday.
AAP will also be releasing autism information on Monday, but we were told that it was embargoed.
Sebelius (before ditching out on the call five minutes in) also announced that Barack Obama was all over Autism, dropping 85 million for research into genetics, services, "evidence based treatment" (which is code for everything but biomedical which we refuse to research so it can't have any "evidence" so we don't have to recommend it) and telehealth (video conferencing for rural families).
No where were the words, "diet", "vaccine", "environmental", "toxic", "neuroinflamation", "autoimmune", "recovery" or any of those other words that I was looking for, ever spoken.
They did however excel in self-congratulations, Insel yelling "ouch!" at one point as he apparently dislocated his shoulder, while patting himself on the back. Pray for his speedy recovery. I am sure his Pharma Bros. can get him some good pain meds.
The conference call was not announced to the press or public, but merely in an email sent out at 9 am inviting around fifty people in the autism community (almost exclusively friendly to the administration) to the 2pm call with a "sorry for the short notice".
After listening to the call, my cynicism is increased, and I continue to encourage my readers NOT to wait for the government to do anything to prevent your child from contracting autism or to treat him. If you are reading this blog you are likely way ahead of Insel and company, and who knows how many years it will be before they catch up with us.
If this is the Obama approach, then I expect it will be at least Summer of 2013 before we hear a conference call from the administration that dares to utter the shocking phrase, "gastrointestinal damage".
They did talk about services, but I can't even give them the benefit of the doubt on that today. So when a child actually benefits from the 85 million being dropped on all this busy work, I will let you know.
And if your child benefits from anything Obama/Sebelius/Insel does, then make sure to drop me a note.
Until then, I just see this as talk because the heat is on and they have to look productive.
UPDATE: I was going to ask a question, bu the Q and A period ended as I was about to do so. Apparently several people asked questions that challenged the administration, but they were screened out by the call administrator. David Kirby's post on the matter.
They cautioned however, that they didn't know if the increase was a real increase or whether greater awareness... changes in measurement methods... better diagnosis... blah blah blah... because apparently our government doesn't even read their own publications.
The whole thing was so predictable that I could have written it for them yesterday.
AAP will also be releasing autism information on Monday, but we were told that it was embargoed.
Sebelius (before ditching out on the call five minutes in) also announced that Barack Obama was all over Autism, dropping 85 million for research into genetics, services, "evidence based treatment" (which is code for everything but biomedical which we refuse to research so it can't have any "evidence" so we don't have to recommend it) and telehealth (video conferencing for rural families).
No where were the words, "diet", "vaccine", "environmental", "toxic", "neuroinflamation", "autoimmune", "recovery" or any of those other words that I was looking for, ever spoken.
They did however excel in self-congratulations, Insel yelling "ouch!" at one point as he apparently dislocated his shoulder, while patting himself on the back. Pray for his speedy recovery. I am sure his Pharma Bros. can get him some good pain meds.
The conference call was not announced to the press or public, but merely in an email sent out at 9 am inviting around fifty people in the autism community (almost exclusively friendly to the administration) to the 2pm call with a "sorry for the short notice".
After listening to the call, my cynicism is increased, and I continue to encourage my readers NOT to wait for the government to do anything to prevent your child from contracting autism or to treat him. If you are reading this blog you are likely way ahead of Insel and company, and who knows how many years it will be before they catch up with us.
If this is the Obama approach, then I expect it will be at least Summer of 2013 before we hear a conference call from the administration that dares to utter the shocking phrase, "gastrointestinal damage".
They did talk about services, but I can't even give them the benefit of the doubt on that today. So when a child actually benefits from the 85 million being dropped on all this busy work, I will let you know.
And if your child benefits from anything Obama/Sebelius/Insel does, then make sure to drop me a note.
Until then, I just see this as talk because the heat is on and they have to look productive.
UPDATE: I was going to ask a question, bu the Q and A period ended as I was about to do so. Apparently several people asked questions that challenged the administration, but they were screened out by the call administrator. David Kirby's post on the matter.
July 22, 2009
The Cruel Bureaucracy of Thomas Insel and The Interagency Autism Coordinating Committee
If ever there was metaphor that most succinctly captured the federal government 'don't give a damn attitude' toward people and families with autism, it is this.
A boy with autism, putting on a tie and flying across the country to address the HHS Interagency Autism Coordinating Committee on his struggle, and giving his carefully prepared speech to an empty conference room, because the IACC canceled the public comments and left early, with only his mother to clap for him when was finished.
Why is the destiny of our children in the hands of smart people who don't give a shit about us or our children? Does it matter how many letters they have behind their name if their values suck?! Why are we trusting our babies to people who are not concerned with our babies???!!!
A boy with autism, putting on a tie and flying across the country to address the HHS Interagency Autism Coordinating Committee on his struggle, and giving his carefully prepared speech to an empty conference room, because the IACC canceled the public comments and left early, with only his mother to clap for him when was finished.
Why is the destiny of our children in the hands of smart people who don't give a shit about us or our children? Does it matter how many letters they have behind their name if their values suck?! Why are we trusting our babies to people who are not concerned with our babies???!!!
January 19, 2009
Shenanigans at the IACC
The Combating Autism Act of 2006 set aside almost a billion dollars for autism research, some of which was to go to environmental causes, some of which were to be vaccine research.
CAA created the Interagency Autism Coordinating Committee, to be made up of both federal officials and members of the public to put together a strategic plan deciding who would get the money to research what.
We got a good idea that the fix was in when Joyce Chung, wife of Roy Grinker, autism epidemic denier, was appointed the committee coordinator, and Thomas Insel, committee head, began making decisions to cancel chelation research (claiming that chelation procedures that are currently the standard of care for metal toxicity and have been so for the last half a century, were suddenly too dangerous to be tested on children with autism.)
Our suspicions were confirmed last week when, after giving the thumbs up to vaccine research in the previous meeting, a surprise revote was held, and the IACC decided to reverse itself and decided that vaccine research into the causes of autism was not necessary.
And it is not just the revote itself that stinks to high heaven, but stories of individual dramas surround the revote are coming to light, most notably Alison Singer's decision to resign from her VP position at Autism Speaks the night before the surprise revote because she knew that she was going to have to vote in opposition to the AS's stance that vaccine research is needed. But wait... if the revote was a surprise... how did Alison know the night before that the vote was coming and that it would be on the topic that it was on and that she would be voting the way she would and that AS would not like it?
What did Alison know and when did she know it?
And is Alison being given any incentives, financial or otherwise, to vote thusly? I mean quitting a six figure income job as VP in the biggest autism org in the world over one vote is quite a step, especially in this economy. She has been dining with Paul Offit and Every Child by Two was the first to run her press release on leaving AS. Merck funds Offit and Wyeth funds ECBT. Is Pharma money making its way into Alison's bank account in exchange for her vote to kill research into whether or not vaccines cause autism?
And wouldn't that be a criminal offense?
Today we learned that Generation Rescue and some friends have been tracking a large number of shenanigans that have been going on at the IACC, and that legal inquires may be on the horizon. Turns out that the committee is not being run by the rules. Shocker right?
The Federal Advisory Committee Act sets the rules on how federal advisory committees, (which IACC is) are to be run. Makeup, prior notices, input, disclosures and the like. But apparently Insel's IACC is above these rules and can just do what it likes.
Stay tuned... this is going to get interesting.
UPDATE: Katie's pissed.
CAA created the Interagency Autism Coordinating Committee, to be made up of both federal officials and members of the public to put together a strategic plan deciding who would get the money to research what.
We got a good idea that the fix was in when Joyce Chung, wife of Roy Grinker, autism epidemic denier, was appointed the committee coordinator, and Thomas Insel, committee head, began making decisions to cancel chelation research (claiming that chelation procedures that are currently the standard of care for metal toxicity and have been so for the last half a century, were suddenly too dangerous to be tested on children with autism.)
Our suspicions were confirmed last week when, after giving the thumbs up to vaccine research in the previous meeting, a surprise revote was held, and the IACC decided to reverse itself and decided that vaccine research into the causes of autism was not necessary.
And it is not just the revote itself that stinks to high heaven, but stories of individual dramas surround the revote are coming to light, most notably Alison Singer's decision to resign from her VP position at Autism Speaks the night before the surprise revote because she knew that she was going to have to vote in opposition to the AS's stance that vaccine research is needed. But wait... if the revote was a surprise... how did Alison know the night before that the vote was coming and that it would be on the topic that it was on and that she would be voting the way she would and that AS would not like it?
What did Alison know and when did she know it?
And is Alison being given any incentives, financial or otherwise, to vote thusly? I mean quitting a six figure income job as VP in the biggest autism org in the world over one vote is quite a step, especially in this economy. She has been dining with Paul Offit and Every Child by Two was the first to run her press release on leaving AS. Merck funds Offit and Wyeth funds ECBT. Is Pharma money making its way into Alison's bank account in exchange for her vote to kill research into whether or not vaccines cause autism?
And wouldn't that be a criminal offense?
Today we learned that Generation Rescue and some friends have been tracking a large number of shenanigans that have been going on at the IACC, and that legal inquires may be on the horizon. Turns out that the committee is not being run by the rules. Shocker right?
The Federal Advisory Committee Act sets the rules on how federal advisory committees, (which IACC is) are to be run. Makeup, prior notices, input, disclosures and the like. But apparently Insel's IACC is above these rules and can just do what it likes.
Stay tuned... this is going to get interesting.
UPDATE: Katie's pissed.
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