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Let's "Face" What’s Wrong with the NIH Autism “Biomarkers” Project: Everything.

More sameNIH Joins Public-Private Partnership to Fund Research on Autism Biomarkers; Biomarkers Consortium Project to Improve Tools for Measuring and Treating Social Impairment in Children with Autism

(NIH Press release is at the end of this post.)

By Katie Wright

First of all let me tell you who is excluded from this $28 million autism research project.

Excluded:

Autistic people with epilepsy

Autistic people w sensory/ motor problems

Autistic people with Metabolic/ Mitochondrial abnormalities

Autistic people with environmentally triggered autism

Ok I think that just about rules out 75% of people with autism?

Just imagine a giant $28 million NIH on the heterogeneity of the HIV population. But the study excludes gay men, IV drug users and sex workers and is ONLY studying hemophiliacs. Absurd right? Yet that is exactly how half-witted this autism biomarkers project is designed.

Ostensibly the hypothesis is that research progress has been impeded by the heterogeneity of autism. OK, fair enough, so why not actually study a heterogeneous group of ASD people and compare those biomarkers? But no, the NIH biomarker project is studying healthy largely HF ASD people, period. Naturally this is the group of ASD people who least need medical science’s help – so start there of course!

One hears the words autism biomarkers and, naturally, thinks of tissue samples, autoantibodies, immunoglobulin levels, cytokine profiles, T cell count, oxidative stress levels….but no, incredibly, the NIH believes “face processing” is a biomarker. The NIH “Biomarker” project will be studying: eye tacking, face processing, pupil light reflexes, social communication, EEGs (more needless torture for ASD kids). Basically every single item on this list has already been studied 10,000 times. Let’s see, for example there are 455 published studies on autism and face processing.

Unfortunately my son has been through at least 5 EEGs, ranging from 24 hours to 5 days long. Honestly it is a nightmare. To do this unnecessarily is unethical and cruel. A team of people glue probes to the child’s scalp. This takes hours. Then the child must wear a giant bandage turban on their head so they do not touch the probes. Did I mention that during an EEG the patient is tethered to the hospital wall, essentially a 5-foot leash? OK, then imagine this angry, uncomfortable child trying to sleep. Finally when it comes time to end this horrible experiment, the removal of the EEG bandages and probes is worse than the application. The poor kid is crazed with a desire to break out of that room. The smell of glue is awful and glue from the probes is stuck to hair, making the removal painful.

After all this, nothing particularly actionable is discovered. I mean SO rarely. The EEG remains a crude instrument picking up only really big abnormalities, even with epilepsy.

So that is the big $28 million NIH Autism Project: face processing and torturous EEGs of healthy HF autistic people. Is it just me or is this an insane waste of money?

The whole “we are studying autism’s heterogeneity” silliness writes itself here. The project claims to be researching autism’s heterogeneity by studying 1 form of autism: healthy and relatively HF ASD people. The project asserts that scientists from many disciplines and perspectives are involved. Ok, I see a bunch of super conservative neurologists and radiologists from the “autism is all genetic” world. Then I see a dozen psychologists from the “learn the signs early diagnosis” world. This is about as diverse as a group of white men studying racial heterogeneity.

We needed the “learn the signs” research 15 or 20 yrs ago. But it is 2015, and 10,000 published studies on the subject later, we must move on. We know the signs of autism. Right now we need pediatricians to read the research and we need more services providers and shorter waiting lists. That would actually help.

I feel like it is really time to have the “there is no Santa Claus” talk with the autism research community, because early diagnosis is failing to significantly help most children with autism.

There is this fantasy that once we can diagnose 6-month-olds (never mind that 40% kids develop autism only after age 1), we can train them to be social and not autistic. It is so naïve! Tragically naïve. Honestly if the only intervention is behavioral treatment, early diagnosis doesn’t matter that much.

Dr. Debbie Fein’s research clearly shows that even with excellent early intervention only 17% of ASD toddlers lose their diagnosis. Whether a child is diagnosed at 18 months or 24 months barely makes a difference. Time to face reality. I know, I know lots of psychologists who created EI treatment always seem to find that their methods make a big difference. Sure, EI studies can show a big pre-and-post difference if you hand pick your subjects and they are largely moderately or mildly affected to begin with.

Ironically it is the extreme homogeneity of research study designers that doom the NIH ASD “Biomarkers” project to failure. This group of academics has no idea, outside of "learn the signs" and EEGs, what autism actually involves. If you look at the organizational chart of this project your head will spin. It is bureaucracy squared! There are about 50 people in charge but not one of them has GI, immunological, toxicological or environmental science expertise.

I don’t know if these people just do not want to succeed or if they don’t care that they keep failing? I do know that the NIH is exceedingly unambitious in ASD science. They settle for crumbs of progress and vigorously patting each other in the back in the progress. The researchers in this “Biomarker” are largely academics with little experience with the ASD community and almost none caring of an ASD person. Imagine if 50 men were running a PMS research project. This is just as harebrained.

Finally, I thought that IACC was supposed to guide NIH research choices, not the other way around. After choosing not to have an IACC meeting for over a year Dr. Cuthbert presents this enormously expensive NIH autism research project as a done deal -- with ZERO community input. I think there are maybe 2 ASD parents (naturally both are very conservative) involved in this gigantic project. The NIH developed this silly study in total isolation from ASD families (who do not want it) and voted to award their own researchers the project. Why bother having IACC at all? Does it just exist to rubber stamp the projects NIMH has already selected? The sense of entitlement towards the spending of taxpayer money with no outside input or accountability is appalling.

The NIH Autism “Biomarkers” Project is a preposterously foolish endeavor and a waste of our research money. Does anyone know anything about forensic auditing of taxpayer money? Is there a research recall process?

--

Katie Wright is Contributing Editor to Age of Autism.
--

About the study: Government, non-profit and other private partners will fund a multi-year project to develop and improve clinical research tools for studying autism spectrum disorder (ASD). The project will receive a total of $28 million over the next four years to test and refine clinical measures of social impairment in ASD in order to better evaluate potential behavioral and drug therapies. It is supported by the National Institutes of Health (NIH), the Foundation for the NIH (FNIH), the Simons Foundation Autism Research Initiative (SFARI), and others. NIH funding comes from the National Institute of Mental Health (NIMH), the National Institute of Neurological Disorders and Stroke, and the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

The effort is the latest addition to the prestigious list of projects supported by the Biomarkers Consortium, a large public-private partnership that aims to accelerate biomedical research progress. James McPartland Ph.D. of Yale School of Medicine, New Haven, Connecticut, serves as principal investigator. The Consortium supports research to identify disease-specific biomarkers and develop targeted technologies and treatments. Its ultimate goal is precision medicine —an emerging approach to prevention and treatment that takes into account an individual’s disease-related variations in genes, environment, and lifestyle.

ASD is a group of neurodevelopmental disorders that affects social interaction and communication skills and can cause restricted and repetitive behaviors. Approximately 1 percent of children throughout the world have an ASD, each with his or her own unique combination of symptoms and levels of impairment. It is this extensive spectrum of symptoms and severity that has proven to be particularly challenging for clinical research.

“The heterogeneity in people with an ASD makes it imperative that we find more precisely diagnosed groups of research subjects so that we can objectively evaluate the clinical effects of an intervention,” said NIMH Director Thomas R. Insel, M.D. “This consortium project will develop reliable tools and measures that clinical researchers can use to assess potential treatments.”

McPartland and his team will conduct a multi-site study of preschool (3-5 years) and school aged (6-11 years) children, both with and without ASD, over the course of several months. Research sites include Yale University, Duke University, Durham, North Carolina, the University of California, Los Angeles, the University of Washington, Seattle, and Boston Children’s Hospital.

The research team will begin by comparing lab-based measures of domains of social impairment to commonly used, standardized clinician and caregiver assessments of social function. Specifically, they will investigate the sensitivity and reliability of these unique measures in terms of how well they indicate changes in a participant’s core social impairment symptoms over time.

The researchers will then evaluate the potential utility of eye tracking responses and measures of brain activity via electroencephalogram (EEG) as biomarkers for future clinical trials. They will investigate how these two noninvasive and relatively inexpensive biomarker measures relate to their recently validated lab-based measures of social function. Together, these findings will lay the groundwork for ASD researchers to objectively select meaningful subgroups of children and reliably measure the clinical effects of interventions.

In addition to the behavioral measures and biomarker data, this community resource will also include blood samples from subjects and their parents for use in future genetic studies. Data and resource sharing are key components of this Consortium project. All data generated in the project will be made available for other researchers to view and analyze through the NIH-funded National Database for Autism Research   and the NIMH Repository and Genomics Resource .

More information on the project may be found at www.asdbiomarkers.org .

U19 MH108206

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About the National Institute of Mental Health (NIMH): The mission of the NIMH is to transform the understanding and treatment of mental illnesses through basic and clinical research, paving the way for prevention, recovery and cure. For more information, visit the NIMH website.

About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. For more information, visit the NICHD website. 

About the National Institute of Neurological Disorders and Stroke: (NINDS) is the nation’s leading funder of research on the brain and nervous system. The NINDS mission is to reduce the burden of neurological disease – a burden borne by every age group, by every segment of society, by people all over the world. For more information, visit the NINDS website .

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit the NIH website .

Comments

Linda1

Michael,
Absolutely. There's no money in a cure either. Well, I guess it depends on how much they're able to charge for it.

Bob,
Research has definitely shown that vaccines up and down regulate genes. The effect varies with each recipient.

Shelley Tzorfas

So they are Excluding Autism from an Autism study-once again. Science without conscience

Bob Moffit


Katie writes:

"The project asserts that scientists from many disciplines and perspectives are involved. Ok, I see a bunch of super conservative neurologists and radiologists from the “autism is all genetic” world."
----------------------------
Received the following from a contributor on another site .. who recommended the following "youtube" on "epigenics" .. that I found extremely interesting .. especially the part about IDENTICAL twins .. having the EXACT SAME GENES .. 1 normal .. 1 severely autistic .. so .. there is no confusion .. AUTISM IS NOT ALL GENETICS!!!
-------------------------------------

https://www.youtube.com/watch?v=clGePC9A7Ko&feature=share

I am encouraged by this research that points towards environmental impacts. This is an area of great potential for discovery and treatments. We are truly in the infancy of this science.

Epigenetics may play a role in the development of diseases such as diabetes, autism and cancer. Consider the phenomenon of identical twins who are alike in every aspect of appearance, even in their physical milestones, until one of them is diagnosed with autism. Their genetic material is identical, so the difference must be environmental. Scientists believe that such factors as diet and exposure to chemicals-perhaps even methods of parenting-can turn genes on or off.

"We know environmental stimulation has an impact on brain development and brain function," says Dr. Kaufmann. "And this impact we now know is mediated, at least in part, by epigenetic mechanisms."

Shanti

Thank you Katie for telling us how it is.
Now we need a revolution.

go Rand

Thank goodness we still have "breathtaking Autism research" coming from Autism Speaks each and every year.

..."Walk in circles" and carry Autism Speaks balloons, all year long, all over the United States...

From there, perform a few thousand "free DNA cheek swabs" for Autistic children. The news media turns out to cover the "cheek swab events" nation wide...

TAKE ALL THE REST OF THE MONEY, and search for the Autism Gene. Keep 20 to 30 million dollars for a rainy day.

Report back that the gene science is going great and you just need another decade or two to create some treatments.

michael

Linda1,

When I first read your comment it may have been a semi, Freudian slip--"The study is designed to accommodate the 'investors' limited scope of expertise...." We know science is for sell, outcomes are for sell, whatever will serve the marketplace which we know is genetics because there's money in them thar hills. There's no money in a man-made toxic environment. There are only costs..human costs.

AnneJ

Unbelievable!
Thank you, Katie for continuing to shine a spotlight on the perpetual BS that flows from NIH and the CDC.
Parents want real research on real biomarkers. I don't see how "face processing" research will help any person with autism.
What a sad, sad waste of valuable research dollars.
I do not believe the CDC or NIH will EVER discover anything useful regarding actual prevention and treatment of autism, because they obviously do not want to.
The answers will have to come from somewhere else.

Katie WRight

Thanks everyone.

My feeling, as I watched the presentation, is that the child psychiatrists in charge of the project do not really understand why autism is- at all.
They are operating on idea that it is all behavioral/ genetic and we can neatly fit kids into categories based on their test results, which are largely social. Obviously won't work except for super HF kids.

I don't understand how one can stay So isolated from the community they serve. But Yale is a very conservative place, no room for immune originated autism or enviro factor of any kind (the than parental age, they love that one!).

NIH Biomarker team really thinks we would like their project! My guess if this team has never read Deth, Herbert, Hertz-Pinchero, Frye, MacFabe Rossingnol, Jynounchi, Herbert, Jill James....They just do not underhand any of this because they are so isolated.

The bottom line is that this hugely expensive project should have been debated at IACC BEFORE it was approved, not just taken to Yale and say, "her is $28 million, have fun!"

Jill

Thank you Katie. This stuff is just so frustrating to read. This is not rocket science. Look at the kids that recovered. Figure out why that worked. Voila! Some of the pieces of the puzzle are just staring them in the face. There are none so blind as those that do not want to see! Just ridiculous. What Benedetta said - Amen!

Birgit Calhoun

Doing these studies is a steady source of income. How are they going to make more money if they actually find the answer.

Reader

This is a joke. So Obama should sign an executive order to find cause of autism now. Quite frankly I think it's more important than the EO for guns. Can you imagine a Trump lab? There wouldn't be 28 million dollar jokes passing for research, that's for sure.

Margaret

Another study with children. Any study only involving children is a scam. It's a lifelong condition. Why are they not studying adults? I have no doubt that there will be three year olds who do not have autism. They have something and are on a late-talking track, so they can superficially appear to have autism, but they will skew the results of any study. I know a number of adults who supposedly recovered from autism, but the most likely answer is misdiagnosis. Let's look at adults in day habs. These are the people who should be studied, but it's sure going to be harder to cheat if you do.

Benedetta

And no Kelly; these people are scared to death about succeeding - they are stalling. I told you that. Tom Insel stopped stalling and took off running.

Can he run far enough away for us to forget?

Benedetta

Meanwhile: I think they have a zika vaccine about ready.

Benedetta

Megan Kelly has it out for Trump. She claims he put the moves on her. Oh, really she just could not handle the suave play boy billionaire because she is such a delicate, naive, virgin, flower that some how has manged to flourish in the concrete jungle of journalism.

Megyn Kelly managed to survive that jungle but looking into the camera and saying it to every parent that has witnessed their child regress after a vaccination that this issue has been studied and proved there is no link and it is time to get over it.

Compare little o'le Megyn to a real reporter that also at one time worked for FOX News before she got sacked. Alisyn Camerota she was actually putting on informative news reporting about the effects of vaccination. That the Vaccine court when they conceded the case of the Polings; and then made the statement that vaccines made the Poling's daughter's mitochondria disease worse - as fishy language. Since she did not have autism but then did have autism.

So what do you think? Hmmmmm; I think that Megyn Kelly's attitude toward Trump - is trumped up by Murdock all because of Donald Trumps statements about vaccines.

Some people really need to burn in Hell.
So, let us have NAMES of these people that have decided where 28 million dollars of MY TAX Money is going to go. I want them on a list cause Bastille Day in America might be coming.

Linda1

"There are about 50 people in charge but not one of them has GI, immunological, toxicological or environmental science expertise."

The study is designed to accommodate the investigators' limited scope of expertise which does not even begin to address the complexity of the disease, and to meet the investigator's need for continued gainful employment. Keep it simple stupid research. Pathetic.

Bob Moffit

Katie writes:

"I don’t know if these people just do not want to succeed or if they don’t care that they keep failing? I do know that the NIH is exceedingly unambitious in ASD science. They settle for crumbs of progress and vigorously patting each other in the back in the progress ..."

After so many years .. so many scarce millions of dollars squandered .. are there ANY members of the NIH that have .. over years .. demonstrated by their personal actions .. they "really want to succeed" and .. by raising their personal voices demanding to know "why they keep failing"?

It appears to me .. the NIH is a perfect example of a morally bankrupt bureaucracy .. that mirrors insanity .. which has been described as "doing the same thing over and over again .. expecting different results".

AutismGoAway

I care very much about autism research. I really believe that autism is recoverable, even in older, more severe children. I think these children have a lot to contribute to our world. I think we need research to discover what we need to do to recover the children, to heal their guts and bodies. I am tired of seeing my child suffer every day.
A study that excludes kids with sensory issues?!!?
I am happy that a large sum of money is being put into an autism study and so so sad that it is being so so wasted. Katie, thank you for calling it what it is! The world has to hear what you are saying so that we can have change. Can you put together a book with the articles you are writing? Can you put your articles into big newspapers? Can you speak on tv or on college campuses?
I still dream of my child being free to be the person he was meant to be. $28 million put into gut research instead of garbage could get him there.

Barry

Autistic people with environmentally triggered autism

********

As if there was any other kind

Visitor

They don'the want to succeed and add to the large amont of evidence already indicating the involvement of biological markers you mentoned. They shift the focus as you show and will surely use this "data" as something that apples to most autism to serve as a fabricated confounder of the real markers in all the rest they are not studying. Medical politics masquerading as sincere research.

Patience (Eileen Nicole) Simon

Children who suffered perinatal problems are also excluded from this study, according to one of the slides McPartland presented at the last IACC meeting. My first two sons suffered head trauma and asphyxia at birth. It was almost too late when my son Conrad was finally resuscitated at birth, and he was a case of classic Kanner autism.

Back in 1969 I read the article by WF Windle, which documented damage of the brainstem auditory pathway caused by asphyxia. This was confirmed by RE Myers in 1972, and in 1976 I published a paper on echolalic speech suggesting how this might be the result of auditory system damage.

But I am only a parent, and my request for back and forth discussions with the new professional experts are quickly dismissed. Katie, keep up the heat!!!

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