Katie Wright: IACC's Larry Wexler On Fire!
By Katie Wright
What is the deal with IACC member Larry Wexler, PhD, from the Dept of Ed? Until yesterday, in the five plus years I have watched Larry serve on the IACC committee I have never seen him express any sense of urgency regarding autism research or serving the autism community. But wow, yesterday Wexler on fire!
Thanks to the Gov. Accountability Office (if you are reading this I love you) IACC has been warned that they must stop recommending the funding of excessive duplication of genetic research. The NIH has spent nearly half a billion dollars since the first CARE was passed and has almost nothing to show for it. This is because the NIH wastes an inordinate amount of our research money duplicating the same “learn the signs” and genetic research 1,000 time over. Yes, research needs duplication yet, for example, 11,000 learn the signs studies are enough, just enough. Because the NIH grossly overfunds the area of early intervention and genetics, they have starved more promising areas of autism research (immunology, gastroenterology treatment, toxicology, vocational program research) of funds.
But rather than be grown ups about the commonsense GAO recommendation, most IACC members became histrionic in the face of this constructive criticism. THEIR feelings were hurt, their egos clearly bruised. The GAO clearly “doesn’t understand how science works!” Insel, Battey and Wexler and other members said as they puffed out their chests. “The GAO don’t understand duplication IS necessary in science! They are getting it all wrong!” No, IACC it is YOU who are getting it all wrong. You are failing to fund meaningful work, despite ample opportunities. The NIH rejects so much promising biomedical research in favor of the same old genetics and people with autism suffer as a result.
While discussing how they were going to incorporate the GAO recommendations into the new Autism Research Strategic Plan Larry Wexler just lost it. Suddenly Wexler appeared very agitated and raised his hand to speak. What he said next is priceless, priceless!
Larry argued that the autism genetic research the NIH funds directly benefits other autism research topics. Larry provided no examples of this. “The GAO doesn’t understand genetics is not in a separate silo!” Yes, it absolutely is! “When Tom Insel was made to appear before Congress about the excessive fund of genetics he showed his genius! Insel told Congress that all the genetics work advances other research disciplines!” Again, no examples given, but Wexler was deep in angry fairytale land now.
Larry became so worked up about this small criticism, meant to better deliver help to Americans suffering with debilitating aspects of autism, all that mattered to him was his own ego and the need to be proven right. Wexler argued that Congress and the GAO “need to be educated about how research works!” Essentially Wexler was saying that it should be perfectly OK to ignore all public input, ignore all treatable autism related suffering and ignore giant gaps in the research, in favor of excessive duplication of genetic research. Wexler wants to incorporate an “educational page” because “he is an educator,” at the beginning of the Strategic Plan, basically explaining why the GAO report is WAY off base and that IACC needs to do what IACC wants to do and anyone who disagrees with that “doesn’t understand science.”
I have witnessed many a temper tantrum with my kids. M A N Y. But Larry Wexler’s tantrum was epic. This man is in total denial about the stagnant state of autism science. I think Larry really feels everything is going great! Wexler also does not care, apparently at all, about importance of accountability or the importance of better serving people with autism. Wexler was behaving like a 4th grader, as if the GAO report was a personal insult to him and his best pal, Tom Insel. Why don’t these guys understand they work for us, not each other? This is not their money, it’s taxpayer money and Wexler and co. cannot just spend this money recklessly and throw a hissy fit when they are held accountable.
Larry Wexler you need to grow up.
A big thank you to John Elder Robsion who was the only IACC member to stand up to Wexler. Robsion reminded Wexler that the committee can and should focus on serving the autism community better by funding more meaningful research. In so many words John went on to remind Larry that IACC needs to pay attention to public input and not be so dismissive of the GAO criticism. But I bet this advice went in one ear and out the other and Wexler is working on his defiant “educational page” for the next Strategic Plan right now.
Katie Wright is a Contributing Editor for Age of Autism.
Cherry,
Have you been able to detox the mercury which caused your husband's autism? Has it healed him? This was an issue in my family and may be one for me eventually. I'm doing the Andy Cutler chelation, but it's a slow process. What did you use to detox the mercury? Is there any IV treatment which can get it out of the brain?
Posted by: ciaparker | November 05, 2016 at 08:32 PM
Katie-Great article as always. Please try to change the board of directors of Autism Speaks if you have the power to do so. Their decision to no longer seek a cure for autism is a huge mistake and the result of having high functioning Asperger people who don't care about a cure! Why should they care about people like my adult son who can't take care of himself, can't go to college, can't live independently, can't make friends, and will have this condition for the rest of his life. Autism Speaks is abandoning an entire generation of people who deserve to have a chance in life that only scientific research into a CURE can provide.
Posted by: Gayle | November 05, 2016 at 09:08 AM
@ Nancy
"So Wexler said, "[A]ll the genetics work advances other research disciplines."
It ought not be left to PARENTS and GRANDPARENTS to "remind" Wexler .. he serves on the Interagency Autism Coordinating Committee (IACC) .. NOT the Interagency Genetic Coordination Committee.
It ought not be left to PARENTS and GRANDPARENTS to "educate" Wexler .. that duplicating genetic research that has proven useless to determining the "cause" of Autism does NOT ADVANCE ANY RESEARCH DISCIPLINES. NONE.
It ought not be left to PARENTS and GRANDPARENTS to "explain" to Wexler that .. according to an OLD article in Discover Magazine ... "Autism: It's Not Just In The Head" .. the following is WHERE the IACC should be investing their TIME and ENERGIES:
"First, autism may not be rigidly determined but instead may be related to common gene
variants, called polymorphisms, that may be derailed by environmental
triggers.
Second, affected genes may disturb fundamental pathways in the
body and lead to chronic inflammation across the brain, immune system, and
digestive system.
Third, inflammation is treatable."
The IACC should be vigorously researching the "environmental triggers" that cause "common gene variants called polymorphisms" to "disturb fundamental pathways in the body" .. which would REALLY SERVE TO "ADVANCE OTHER RESEARCH DISCIPLINES" .. such as .. immunology, toxicology .. and ... most especially .. CRITICAL "epi-genetic" research.
Unfortunately .. Wexler .. acting on behalf of the IACC .. arrogantly dismisses PARENTS AND GRANDPARENTS .. who are not among his "tribe" of highly-functioning PHd "educators" .. as "outsiders" .. who know nothing about AUTISM .. FROM HIS .. AND HIS ALONE ... PERSPECTIVE.
Posted by: Bob Moffit | November 05, 2016 at 06:44 AM
"I have witnessed many a temper tantrum with my kids. M A N Y. But Larry Wexler’s tantrum was epic..... Wexler was behaving like a 4th grader"
Sounds to me like Wexler is another PhD with Aspergers having a meltdown. There are most likely more members on the IACC with Aspergers than Samantha Crane J.D., Amy Goodman M.A. (ASAN) and John Elder Robison. who's now a Neurodiversity Scholar, whatever that is.
This is no longer about Autism, which it should be, but about Aspergers which as we learned from Simon Baron-Cohen and his select group of PhDs with Aspergers is not necessarily a disability. Why would successful people standing on the very, very tip of of the ASD-disability iceberg search for a cure for autism, or consider that their autistic traits could have been caused by brain damage triggered by environmental factors/vaccines? They won't allow themselves to think beyond genes, and never mind about the lesser-able autistics whom they seem to think can always find employment packing groceries, sweeping floors, or cleaning and polishing cars - the Epsilons or drones - they simply need accommodating.
One of the biggest mistakes (ploys) in my view was to amalgamate Autism and related disorders into one giant ASD category, promote identity-first language (so being an autistic could mean anything), state that autism is a life-long condition that shouldn't be cured because it is "an integral part of a person's identity", and employ the highest-functioning autistics to control the discussion and speak for everyone else on the spectrum, many of whom are either being cared for by their parents or in residential care because being actually disabled, and not pseudo-disabled, they need. to. be. cared. for. They're not out on their own leading independent lives.
These people do not speak for typically-developing, bright-eyed infants and toddlers who mysteriously become autistic. This kind of autism must have an environmental cause.
Posted by: ATSC | November 04, 2016 at 11:11 PM
So Wexler said, "[A]ll the genetics work advances other research disciplines."
What a ethically warped attempt to justify the defunding of other more fruitful autism research avenues, such as environmental causality... particularly the uncomfortable vaccine topic with its rich veins of incriminating evidence.
Wexler's malfeasant research reprioritization is analogous to a myopic dog owner letting his biggest hound eat his other dogs' food, then congratulating himself heartily on having such a well-fed dog -- while the others starve.
Posted by: Nancy Hokkanen | November 04, 2016 at 06:11 PM
Insel still needing the brain mechanics in to sort out a few major problems with his rational.
MMR RIP
Posted by: Angus Files | November 04, 2016 at 04:03 PM
To Sharon de Nunzio,, It is not just human error that accounts for the inablility to do correct research into both autism and Alzheimers. This is a deliberate effort to avoid the really really, REALLY bad news that both conditions are caused by mercury ( with perhaps some other modifying factors ) And dont forget NOT to study mercury laden dental amalgams and NOT study the effects of a lifetime of eating fish . Notice how each of these entities is separate from the others. - I mean you have websites for autism and websites for mercury dental amalgam sickness, websites for Kawasaki disease , websites for Alzheimers, Parkinsons and ALS- when in fact, all should be joined under one umbrella as a powerful force.
And you are absolutely correct- It is possible and in fact easy to reverse symptoms of Alzheimers. No doubt Dr. Breseden is one of the best. I did it for my husband simply by understanding a little bit of mercury toxicology. Right now it seems that the Alzheimers Kentucky Derby is playing out - Will the news of how to reverse Alzheimers get out first, or will Big Pharma produce some pharmaceutical that helps you to some minimal extent with your Alzheimers be pulled out of the pharma hat first ? I personally look forward to the new era of medicine in which effects of metals on the human body become common knowledge.
But we must remember that good treatments for autistic children are being suppressed by the same people who impede research.
Posted by: Cherry Misra | November 04, 2016 at 01:53 PM
Perhaps there should be a term limit so that something great can be accomplished.
Posted by: Shelley Tzorfas | November 04, 2016 at 01:10 PM
This NIH waste in repetitive genetic studies for autism mirrors the waste in repetitive amyloid plaque targeted drugs for alzheimer's.
In the alzheimer's world, over 3 Billion dollars has been spent on amyloid plaque modifying or reducing drug therapies, and 100% of these have failed. The only doctor who has actually reversed alzheimers symptoms and functioning is Dr. Dale Bredesen of the Buck Institute of Aging. Look him up! His work is exciting!
Dr. Bredesen used a 36-point model, based on functional medicine protocols, using lifestyle and nutrition treatments, to reverse alzheimer's in 9 of 10 patients. The tenth had severe long-standing alzheimer's. His protocol addresses amyloid plaque as only area of 36 in an overall goal to rebalance synapse making and destroying activity. He does not believe that simplifying alzheimer's -- looking at only one protein (beta amyloid) and only one drug to reduce that protein -- will ever achieve success. Yet, the NIH keeps granting more and more money to the next beta amyloid blockbuster potential drug....
Yet another system that is BROKEN....
Posted by: Sharon DeNunzio | November 04, 2016 at 11:51 AM
>:(
Like Maureen, at first I though Wexler was mad at the other side! But no. Thank you for being there and reporting on this, Katie!
Posted by: Twyla | November 04, 2016 at 11:14 AM
If they're starting to get hysterical it's because they feel threatened and they should feel threatened because their house of cards is folding around them exposing their crimes to the world. Good news.
Posted by: Linda1 | November 04, 2016 at 10:43 AM
Everything I read about the IACC, Tom Insel and his friends, makes me believe they are CONTROLLED OPPOSITION.
http://www.urbandictionary.com/define.php?term=Controlled%20opposition
Posted by: Susan | November 04, 2016 at 10:00 AM
For a moment, I thought the fire was going to blow in our direction. But, silly me, I should know better and that all they do is blow the fires out. Thanks for being our guide through the drill.
Posted by: Maurine Meleck | November 04, 2016 at 09:31 AM
If Wexler's "educational page" makes it into the Strategic Plan, then someone should send a copy to the GAO lead auditor.
The IACC may have the unpleasant surprise of a follow up audit.
Posted by: Carolyn M | November 04, 2016 at 08:48 AM
But, of course, it was Francis Collins back in 2006 - at the time head of the human genome project and long head of the NIH - who told Congress that no progress would be made into autism and other epidemic health conditions with the genome project. He already knew it was a dead end. Collin's moment of frankness aside we are left with Eisenhower's conclusion back in 1961:
"Today, the solitary inventor, tinkering in his shop, has been overshadowed by task forces of scientists in laboratories and testing fields. In the same fashion, the free university, historically the fountainhead of free ideas and scientific discovery, has experienced a revolution in the conduct of research. Partly because of the huge costs involved, a government contract becomes virtually a substitute for intellectual curiosity...
"The prospect of domination of the nation's scholars by Federal employment, project allocations, and the power of money is ever present and is gravely to be regarded.
"Yet, in holding scientific research and discovery in respect, as we should, we must also be alert to the equal and opposite danger that public policy could itself become the captive of a scientific/ technological elite."
And that is exactly what we are looking at here.
I wonder if perchance Larry Wexler is related to Deborah L Wexler, of Immunization Action Coalition, ACIP, Voices for Vaccines, Philadelphia Children's Hospital, ECBT, etc etc.?
http://www.immunize.org/aboutus/wexler.asp
I think we should be told.
Posted by: John Stone | November 04, 2016 at 07:47 AM
Heredity has long been the stigma associated with childhood mental afflictions. Now it's called genetics, and most ridiculous is looking for "autistic traits" in parents and siblings, deflecting attention away from looking for causes of the increased prevalence of autism since the 1990s.
An "elephant in the room" was discussed at the second IACC conference call on Question 3 (What Caused this to Happen?), whether any cause should be sought.
Returning to last century's polio epidemic, would anyone have said no cause should be sought? I am so glad this question is continually pointed out on AoA by Dan Olmsted and others. I hope the new chairman of the IACC, Dr. Joshua Gordon, will begin taking public comments more seriously, and promote fuller discussion of them.
Posted by: Patience (Eileen Nicole) Simon | November 04, 2016 at 07:05 AM
"The GAO clearly “doesn’t understand how science works!” Insel, Battey and Wexler and other members said as they puffed out their chests. “The GAO don’t understand duplication IS necessary in science!”
Wexler would be correct .. IF Insel, Battey and Wexler were spending scarce financial resources "duplicating science" that warrants "duplicating". Unfortunately .. as Katie observes .. there is absolutely no reason to CONTINUE wasting TIME and MONEY duplicating "learn the signs" and "genetic research" over and over again.
Indeed .. Wexler appears confused .. "duplicating science" already proven not worth duplicating .. over and over again .. is NOT SCIENCE .. that is more like Einstein's definition of INSANITY .. which is "to do the same thing over and over again .. expecting different results each time it is done".
Katie continued:
“When Tom Insel was made to appear before Congress about the excessive fund of genetics he showed his genius! Insel told Congress that all the genetics work advances other research disciplines!”
Again ... Wexler and Insel appear confused .. the Interagency Autism Coordinating Committee was created to examine issues related to Autism Spectrum Disorders .. NOT ... issues related to GENETICS.
Indeed .. after spending enormous time and energies on GENETIC RESEARCH .. without ANY substantial progress regarding "issues related to ASD" .. the IACC must leave the time and energies for the "advancement of genetic research" .. however well-intentioned .. to those dedicated to genetic research.
In other words ... and .. I suspect Einstein would agree ... GENETIC RESEARCH ought not remain the high priority the IACC has given it.
Posted by: Bob Moffit | November 04, 2016 at 06:54 AM
Thanks Katie for holding our public-serving officials to account. I was there the day Insel testified to that congressional committee on the GAO report. He called it a "teachable moment" to convey how science really works. I have never seen someone dripping with such condescension.
Posted by: dan olsmted | November 04, 2016 at 06:38 AM