Autism Centers of Excellence Devours Research Money with What to Show?
By Katie Wright
I have been poring over every NIH autism grant from 2009. Every single grant, the amount awarded and the investigator is listed and categorized within of the Strategic Plan guidelines. The Strategic Plan recommendations have been really improving over time but the NIH grants have not.
While tallying up categories of NIH autism research I kept coming across giant grants for something called ACE. What is ACE? I had no idea, but apparently it means Autism Centers of Excellence. Excellence is an adjective used very liberally here. If, like me, you interpret the word “excellence” as meaning novel, exciting, innovative research that raises the bar, sets higher standards, you would be wrong.
ACE would more accurately be described as Autism Centers Extracting $ from Taxpayers for Redundant Autism research. ACE-TRAR, for short. Maybe its just me but I think our families want to see some “excellent” research in clinical interventions, medical interventions and environmental science so that we can prevent a % of ASD by identifying triggers. Those 3 areas of research represent huge spending gaps within the NIH. They are high priority areas for families. When was the last time you heard a parent longing for more face processing research?
ACE centers do no research on regression or biomedical science. Neither does ACE invest in any research on the ubiquitous and ignored GI and autoimmune problems endured and rarely treated effectively in children with ASD.
Virtually all ACE centers are doing identical face processing, autism “gene,” mirror neuron (an area of research that has been found to be useless in autism research) and autism diagnosis research. If you actually need more than a diagnosis from one of these centers you are out of luck, buddy. ACE centers also do plenty of MRI studies, the most over funded area of autism research. The research is so redundant, each center is almost interchangeable. ACE does no biomedical research and no novel treatment research whatsoever. No, ACE specializes in the few areas of autism research already saturated w/ $.
ACE eats up over 13 MILLION dollars of our autism research monies. To make matters worse it appears that a high % of that number goes towards administrative costs. There are all kinds of sneaky grants towards “ACE supplementation admin,” or “ACE core supplementation.” Whatever… it equals bureaucracy.
What kind of accountability exists for ACE? Who approves all these nearly identical studies? Why are the administration costs so high? What is “excellence” actually supposed to mean? Where is the community and taxpayer input within ACE?
Katie Wright is Contributing Editor for Age of Autism.
Oh, poor Dick. You have been reading the wrong information. Andrew Wakefield, M.D. was never deceitful nor dishonest. Read the book, "Callous Disregard".
As far as your calling card here - ignorant vs 40 years of chemicals in your body? Please read, "Mercury, Medicine and a Manmade Epidemic for a better understanding of science here.
It may just be easier for you to wrap your brain around genes instead of those lovely chemicals that are part of your bread and butter. Denial for you is not that great river in Egypt.
Posted by: Teresa Conrick - To Poor Dick | November 01, 2011 at 05:35 PM
Wakefield category here:
http://www.ageofautism.com/dr-andrew-wakefield/
Posted by: John Stone | November 01, 2011 at 04:18 PM
Dick you're well off the mark. Read the Wakefield category. Also you won't find a more dedicated loving group of parents. You final comment is wholly offensive. Would you say the same to parents dealing with cancer? I think not. Kim
Posted by: Kim Stagliano | November 01, 2011 at 03:51 PM
yep,overdiagnosed. every kid who has the slightest comm deficit gets the diagnosis. As a biochemist and parent of a child with AUTISM not PDD-NOS or "on the spectrum". We are all "on the spectrum" people. But autism is different than being one of the eccentric professors we had in college. And yes, they are wasting huge amounts of money because scientists smell where the grant money is and that's where they go. I've seen it for 40 years in the medical industry.But please, Wakefield was a deceitful liar who faked research and preyed on desperate parents. And lets get off the vaccine stuff please. Get over it people, you got dealt a bad genetic hand of cards. Just do the best for your kid and love them like your other children.
Posted by: Dick Wicks | November 01, 2011 at 03:29 PM
Thank you again Katie,
Who selects the AoA pictures for the articles? Great photo work...
The number one goal of most Autism research is the next "pile of money" for more research...
No matter what, they have to continue looking in the wrong place.
Posted by: cmo | June 29, 2011 at 09:28 PM
In the 1990s I was told by a Medical Claims Solicitor at an autism conference that the FAA (Federal Aviation Administration) was too close to the airline industry just like the NIH, CDC and FDA (US Dept of Health and Human Services) with the pharmaceutical industry. Over time I realized what this Solicitor was telling me.
Kathy Blanco said the following:
"Are we that stupid to think these agencies have our best interest at heart? When they make billions off of us being chronically unwell?"
She is right.
When I wanted to get help for Eric with the IVIG treatment I searched in New Jersey for an immunologist and came across Dr. James Oleske who was mentioned in this TV movie:
The Littlest Victims (TV 1989)
A true account of the life of pioneering AIDS doctor James Oleske.
Storyline
Tim Matheson play a doctor that treats children with AIDS. He tries to convince his colleagues that the children got the disease from their parents. Based on a true story.
http://www.imdb.com/title/tt0097760/
Like Vijendra Singh, Andrew Wakefield and Arthur Krigsman, Dr. Oleske was a pioneer. Dr. Oleske fought the CDC and proved to them with his research that kids were coming down with AIDS. He did it by independent research, not getting funded by the NIH and not the CDC who stood in his way.
As Kathy Blanco said the pharmaceutical industry along with the CDC and NIH are only interested that the public is chronically unwell. Why then would they be interested in helping to cure children/adults with autism? In fact why would they be interested in curing any disease/disorder?
Posted by: Ray Gallup | June 29, 2011 at 05:54 PM
President Obama this morning in his press conference referenced how important research for diseases must be funded, and kept safe from cuts. However, in this instance, I would tell him, the cuts would be warranted if they go off on tangents that don't and never will identify the cause of autism, ie, it's the parents faults, your bad genes etc. I implore all to read the following, regarding the xmrv retrovirus and what it is "capable" of doing, knowing full well, retroviruses have been identified in childhood vaccines as well as a laboratory manmade shitoid that has somehow magically escaped the confides of their halls (think AIDS) (see http://www.laleva.org/eng/2010/10/autism_and_retroviruses.html#comment-321832) . Anyways...I just want a Ron Paul/Perot like look into what exactly are we funding into medical research which goes so far of tangents, (AS WAS INTENDED), that we never identify man made products as culprits (which are mega industrial military medical complex things). Here's the latest one, mammograms are GOOD FOR YA...ya, they cause cancer in the breast. Or how about all those dern side effects from EMBRIL or any other drug for that matter, which can kill you but are completely acceptible. Or, here's a good one, genetic flaws are increasing in our children spontaneously! Another one, that jugular veins in MS don't mean anything, and that unblocking them cures MS...nah, they would never say that, too much money in making the drugs for MS. The list goes on and on and on. Are we that stupid to think these agencies have our best interest at heart? When they make billions off of us being chronically unwell?
You cannot have a genetic epidemic. Either we are epigenetically altering our genes by the onslaught of GMO's, Glutamates, BT Toxins, Pesticides, Unleashed ungodlike viruses, Mercury and heavy metals in general in air, water, food and vaccines, unleashing lab retroviruses in vaccines or recombiant medicines, drugs in the water, chemotherapy in the water, immediate cord clamping, stopping breastfeeding too soon for economics (which depletes brain growth derived factors for the cerebellum to develop correctly, mold in homes or airtight homes, fluoride, lead, uraniaum and radiation leaks at nuclear sites (well known to happen even here in the US), birth drugs, the whole we can find autism in a test tube is mute point. What you have to do is ask every family member with an autistic child to have their bloods given to research and look at those factors above to see if they relate to the uprise in autism. If they aren't doing that, then as far as I am concerned, they are throwing good money after bad. Now, when was the last time these agencies have said that autism is in any way connected to these things, either on a whole, combination, alone, whatever? Just like how they study one pesticide at a time, and never know what the combination of factors bring? Yes, intense amount of money initially, but, the intial research would reveal things, SAVING money in the long run. All researchers who work on diseases should have the mindset to work themselves OUT of a job. What a concept. Do you think these researchers even WANT that to happen? Or their employers?
Posted by: kathy blanco | June 29, 2011 at 01:34 PM
@joyous, with that train of thought...I'm pulling out the stops and praying like a monk!
Posted by: Kevin | June 29, 2011 at 12:03 PM
Pray for a change of heart in these people. There was once a church who received a new paster who had no care for the people who went to the church. Rather he wanted to run the church his way at the risk of losing members. The members got togetner knowing they were stuck with him for at least a few years and they prayed that he would have a change of heart. Not long after, he died of a heart attack. I wish no ill on the people who don't care for kids with autism... But I do pray for a change of heart, and for God to deal with them in whatever way he sees fit to solve the problme.
Posted by: joyous | June 29, 2011 at 11:43 AM
The NIH has two programs that involve waste and fraud of the American taxpayer dollars for autism research and they are called internally the Promote Idiotic Stupid Science (PISS) and Science Headed Into Trash (SHIT). All autism research at the NIH (and CDC) are funneled through these two programs.
My question to the autism organizations that have supported the past and present Combat Autism Act (CAA) is............
"How's that working out for you?"
Especially since the sum end game/result equals zero!!!!
Posted by: Ray Gallup | June 29, 2011 at 05:34 AM
Millions, billions and probably trillions of dollars going down the NIH and CDC toilets. I went from 1995 to 2001 to get the NIH to fund immunology research on autism with no success by myself and with other parents and researchers including Bernie Rimland, Dr. Vijendra Singh and associates of Dr. James Oleske.
Recently various autism organizations pushed for more funding by the NIH in the Combating Autism Act (CAA).
More money down the toilet!!!
By the way when I had an organization called the Autism Autoimmunity Project, I went to the NJ Governor's Council on Autism. Dr. Emanuel Dicicco-Bloom represented NAAR and Autism Speaks at the Council and got funding from them for research that did nothing for kids with autism. He said to me at the meeting that the NIH was the "Gold Standard" for research. I asked him what disease/disorder the NIH cured....he couldn't answer me.
Now this same doctor is with the organization that pushed for the CAA per..............
Emanuel DiCicco-Bloom, MD
Autism Science Foundation Scientific Advisory Board
http://www.autismsciencefoundation.org/scienceadvisoryboard.html
Posted by: Ray Gallup | June 28, 2011 at 09:57 PM
Katie - I'd love to see the ACE list. Do you have a list?
Posted by: What is the list? | June 28, 2011 at 08:26 PM
Why find the cause of autism or a cure when you can spend 30-40 years living off the taxpayers with nothing to show for your life's work? What a racket.
Posted by: Harry H. | June 28, 2011 at 10:32 AM
On the subject of diagnosis, this is an article on the nature of psychiatry which mentions the DSM-V changes due in two years time:
Part1:
http://www.nybooks.com/articles/archives/2011/jun/23/epidemic-mental-illness-why/
Part2:
http://www.nybooks.com/articles/archives/2011/jul/14/illusions-of-psychiatry/?pagination=false
A notable quote:
Even Allen Frances, chairman of the DSM-IV task force, is highly critical of the expansion of diagnoses in the DSM-V. In the June 26, 2009, issue of Psychiatric Times, he wrote that the DSM-V will be a “bonanza for the pharmaceutical industry but at a huge cost to the new false positive patients caught in the excessively wide DSM-V net.”
Posted by: GH | June 28, 2011 at 10:09 AM
Agreed. Existing academic and research institutions with skilled staff and grantwriters love that they can slap the term "autism" on their templates and corral new dollars to fund their existing projects, operations, and overhead. It's more than maddening. Unfortunately their skill set also extends to bureaucratic ju-jitsu, which was clearly on display at the recent White House Conference on Autism. All they seemed to want talk about was either getting funding for their labs or early diagnosis, the latter of which is clearly important but not the be all and end all. Post early diagnosis, protocols and interventions have been static for years so, IMHO, these folks with a lot of letters after their names don't really have much to rest their laurels on. The IACC has a (very) few nice ideas on paper but appears to have no teeth whatsoever to prevent the NIH from spreading it's largesse to its favorite large institutions, irrespective of their effectiveness or even tangential relationship with autism.
Posted by: Dadvocate | June 28, 2011 at 10:08 AM
My son put on an episode from the 2nd series of Blackadder last night (Tudor setting). Included a classic conversation between Blackadder and his doctor:-
Dr: You know the leech comes to us on the highest authority.
Blackadder: Yes I heard that. Dr Hoffman of Stuttgart, isn’t it?
Dr: Yes, that’s right. The great Hoffman.
Blackadder: Owner of the largest leech farm in Europe.
Why is our society incapable of ever learning anything?
Posted by: John Stone | June 28, 2011 at 09:53 AM
@ Eileen .. "These people love autism. They don't want to find the cause. It's their bread and butter!"
A wise sage once commented that most .. if not all .. well intentioned organizations go through the same evolution:
Founded upon a "good cause" .. say combating autism .. they naturally transition into a "good business" including high salaries and perks for administrators .. eventually becoming no more than a "good scam".
@ Katie .. they say a "picture is worth a thousand words" and your picture of money being pored down a toilet is a perfect example of that.
Thanks for all you do for our community.....
Posted by: Bob Moffitt | June 28, 2011 at 07:58 AM
Katie, thanks again for expressing your outrage so well. I went to IMFAR back in 2002, which may be when the ACE were established. One of the people I attended that IMFAR meeting with remarked loudly as we came out of one of the lectures, "These people love autism. They don't want to find the cause. It's their bread and butter!" They do deserve to be put to shame.
Meanwhile, my two cents: Developmental language disorder is the core handicap of children with autism, which has many causes and is associated with many co-morbid conditions. Brain systems involved in language development should be the mandated focus of research.
I suggest starting with the seminal paper by Seymour Kety, in which he reported the highest blood flow in the brain was found in the brainstem auditory pathway. The auditory system is therefore most vulnerable to any potentially toxic substance in the circulation. The paper, written by Kety in 1962, is free online at:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1804882/?tool=pubmed
Much more is available on the importance of auditory function for learning to speak, and its vulnerability to toxic substances like mercury and lead. See citations on my website, which I first posted in 2000.
Posted by: Eileen Nicole Simon | June 28, 2011 at 06:53 AM