Katie Wright on Federal Autism Funding's New Highlights and the Usual Lowlights
Why Worry? The NIMH Ignores IACC Report Anyway!
By Katie Wright
Normally, this time of year I read and re read the IACC Autism Research Strategic Report. The report highlights autism research priorities that the committee believes the NIH should fund. Usually, I am aggravated by the endless over emphasis of basic science and recommendations for the millionth “learn the signs of autism” research (redundant if anything ever was). For the record there are tens of thousands published studies on the early signs of autism, we do NOT need more, we need physicians to read what exists! Same problem for early intervention research, there are thousands of published studies. The problem is lack of service providers, not lack of research.
However, over the past few years, I have been pleasantly surprised by new IACC research recommendations about the need for treatment for ASD/ Gi disease, autoimmune dysfunction, the need to study housing options, the child to adult transition and self-injurious behaviors. For the record, medical research must be conducted by GIs or autoimmune experts, NOT psychologists or psychiatrists, as it often is. These are medical, not psychodynamic, problems.
Despite improved IACC recommendations, funded NIH autism research remains EXACTLY THE SAME. The NIH has completely ignored the IACC Strategic Plan. The same universities and researchers at Yale, John Hopkins, UCLA, UCSD, Emory, Univ of Washington etc. all receive the bulk of the funding to do the same antiquated research that NO stakeholders or taxpayers (do not want their money wasted!) want done. Tragically, the vast majority of the NIH funded research is wasteful, redundant and frankly, pointless. There is a reason families feel like no progress is being made. It’s because NO progress is being made.
I seriously doubt any of the mystery men and women (have any of them actually met a kid like mine? Doubt it!) secretly choosing autism grants even read the IACC report! There is certainly no evidence they have! New research recommendations are wholly ignored and the same ridiculous multimillion $ eye gazing, rare genetic variant, genomic boondoggles are fully funded year after year.
For example, let’s look at Yale’s MacPhartland’s Autism “biomarker” project. Yes, biomarker in paratheses because it is too ridiculous to be taken seriously! The “biomarkers” include eye gazing and interviewing! MacPhartland excludes all severely ASD kids, all children with epilepsy and Gi problems from his “biomarker” study! How can you develop ASD biomarkers after excluding half the ASD population?? It’s so stupid, it’s painful. Yet, this ridiculous project will rack up nearly 10 million dollars!
Autism Speaks funds very conservative research. However, even AS no longer funds “rare genetic variant” research! Previous AS Science Director, Dr. Frazier believed it was not fruitful and, frankly, irrelevant. Fragile X, Tuberous Sclerosis, Timothy Syndrome share some overlapping symptoms with autism, but they are not autism as lived by 99.99 ASD people. The percentage of ASD people supposedly, living with a rare genetic variant is grossly inflated and most cases do not fulfill DSM dx criteria. I have never even heard a stakeholder ask for more of this research, but wow, NIH loves to fund it!
The following are just some of last year’s NIH “Autism” grants that neither apply to, nor help anyone with autism. Timothy Syndrome study, $350,000, FX Gene Knockouts $450, 000, 3D Model of Genetic Mutations, $500,000, Fragile X $500,000, Mental Retardation and FX $450,000, Mitochondria and FX, $600,000, genetic variants $1.2 million. In total probably $15 million of taxpayer money wasted on this dead-end research that neither stakeholders nor IACC wanted funded. It is appalling.
While we are on the subject of waste and redundancy, let’s examine how the NIH continues to needlessly saturate “learn the signs” research with money as if it were 1990. The goal to create autism awareness among the public and medical profession has largely succeeded, we need to move on! Yet the NIH “dx and learn the signs” research STILL the major research focus of big ASD research centers: ACE (Autism Centers for Excellence), Eunice Kennedy Shriver, ECHO and more. NO ONE is asking for more learn the signs research. No one! The hundreds of millions of dollars currently spent on this subject should be spent on researching studying the transition from childhood to adulthood and associated inherent biological and logistical (housing) challenges. All stakeholders want this subject well-funded.
While the vast majority of NIH funded autism research goes towards basic science, critically important, IACC prioritized subjects have gone virtually unfunded. IACC mentions the importance of investing in “co- occurring” medical conditions in 5 places in the Strategic Plan. Unlike rare genetic variants or FX, GI disorders actually affect approximately 40% of ASD people! IACC recognizes that ASD/ GI disorders are tremendously debilitating and advocate immediate treatment research. Stakeholders regularly plead for GI treatment research. Parents see how their child’s GI pain renders them unable to learn or sleep.
However, the NIH has never funded ONE ASD GI treatment study. The few GI studies they have funded tend to be “the genetics of GI problems” or “the psychology of GI problems,” frankly useless work. The fact that the NIH chooses to ignore this topic for 20 years demonstrates how little they care about ASD people. If addressing life ruinous pain isn’t important, what is?
IACC has also called for much more safety research into elopement and drowning. We must develop programs and resources that help parents keep their child safe and help police find missing ASD children. The NIH has funded 3 small research projects. None of the safety research projects add up to the cost of one of the 25 Fragile X studies funded last year.
Finally, IACC advocates more research into early life environmental exposures. Right now, the majority of autism environmental research is invested in the hypothesis that fat old moms cause autism. I think I can speak for all ASD Moms when I say this is insulting and stupid. Advanced maternal age a risk factor in EVERY developmental disability, autism, less than most. Obesity a tiny issue among ASD Moms. According to environmental scientist, Dr. Irva Hertz Pinchero, these factors account for possibly 2% of autism. We need environmental research on infant exposures and corresponding behavior changes, not nonsense.
The brains, lungs and immune systems of newborns and toddler are immature but rapidly developing. Their blood brain barrier more delicate. They have an immature detoxification system. Babies and toddlers come into greater contact with toxins than adults. They crawl on the floor, put random objects in their mouth and are constantly in contact with dust and dirt. We need research into the effects of flame retardant on infant mattresses, pollutants, pesticides, cleaning products, bisphenol A, mercury, phthalates. The effect of these toxins on babies has barely been studied although all forementioned exposures are known to cause neurological damage.
At least 25% of ASD kids develop typically for a year and then lose language and skills. Instead of just taking pictures of their brain, as in Piven study, we must examine co-occurring environmental exposures. We need to track exposures, medical records at the same time MRI performed. Studying the brain in isolation helps no one and prevents not one case of regressive autism. ASD researchers must raise the bar. Rather than what is interesting to them, autism researchers need to think, how will this help people with autism? Are we delivering value to the taxpayer? Right now, the answer is “no” to both questions. Read the IACC report and get consumer grant reviewers. Clearly, the NIH autism grant reviewers has no sense of that is at stake here.
Wireless radiation is known to damage brain and body. Dr. Herbert, et al, connected EMF and wireless to autism and other neurological problems years ago, yet the advice to avoid this pollution is ignored like the science doesn't exist.
One thing it is known to do is it opens the blood brain barrier and makes other environmental exposures worse.
Children should not be exposed to wireless. No phones, devices, smart meters, wifi at home, cell towers, no idiot cancer stick air pods in their ears, etc.
Pregnant women and their husbands should not have any of this at home. No pregnant woman should be using a cell phone for anything. Sound harsh? How's the autism rate?
The PTB are getting ready to get rid of safe nonirradiating wired land lines. That needs to be fought. Every home should have a wired land line for talking. Sound old fashioned? Want to live? Want to grow old with your brain intact? Want your children to have a life? To heal? Get a wired land line, hard wire all devices, get rid of wifi and stop irradiating your family. Just stop.
https://ehtrust.org/wireless-radiation-and-its-impact-on-children-with-dr-martha-herbert/
https://ehtrust.org/key-issues/cell-phoneswireless/autism-adhd-wireless-electromagnetic-fields/
https://mdsafetech.org/
Posted by: Linda Englander | January 22, 2022 at 03:36 AM
https://www.cdc.gov/childrensmentalhealth/data.html
1 in 2 kids have serious behavior issues.
Posted by: Coral | January 21, 2022 at 09:31 PM
Thank you for all you do Katie. Remember a few years back when Autism Speaks was launching the huge campaign to search for the autism gene ? Everyone was free to sign up and help search their database of DNA sequences to see if anyone could find it.
Of course, they wanted millions up front first to do the groundbreaking research. Not sure how things are going at Autism Speaks these days. Do they still have an office in NYC?
Autism has taken a back seat to Covid for the past few years, and certainly much the same a ways into the future. The vaccine industry has moved on to trashing billions of more people with billions of free dollars from all over the world.
Posted by: Still with Trump | January 21, 2022 at 08:04 PM
Well done summary. I watch you on Twitter, and this is a good way to add up everything that has happened over the last year.
Maybe we should propose a solution: Specific studies by specific people that you think would help us? Suramin is one big hope that seems to have gone by the wayside. Any specific GI research you want to see happen?
I keep hoping for the miracle that will help my son. Thank you for shining a light on all this, Katie.
Posted by: Brian Nomi | January 21, 2022 at 03:17 PM
Amen Emma and Jeannette.
Posted by: David Weiner | January 21, 2022 at 10:24 AM
Thank you so much for this depressing synopsis of how they waste our taxpayer dollars and do nothing to help our kids. I appreciate the time it takes you to read and report on it and how frustrating it must be year after year to see them do nothing to make our kid's lives better.
Posted by: MelissaD | January 20, 2022 at 08:41 PM
Fox News posted a video of Floridians telling New Yorkers to “stay outta our state you liberals” while THIS happens in “free and loving Rose Red Florida” https://www.lossofbraintrust.com/post/florida-lawmakers-look-to-limiting-restraint-on-disabled-students
LITERAL STRAITJACKETS ON VIOLENT STUDENTS.
FL is no longer the Sunshine state. What should we call it now? The PEDIATRIC PSYCH WARD STATE?
And NY requires COVID19 nano tech parasite egg shots for kids to attend schools, eliminating all parental consent for kids 14 and older.
With the worldwide and nationwide vaccine poisoning and autism epidemic, I become more and more doubtful there is any “free healthy” country or state left. Being prideful and revisioning history, regardless of country or state, doesn’t fix anything even to a slight degree about this satanic neurodegenerative illness and SPED psych ward epidemic.
Why ARE so many FL children violent and mentally ill?
Posted by: Sadness | January 20, 2022 at 04:15 PM
Katie, can you comment, or can anyone comment, on the tragic fate of the planned longitudinal children's study. It had Phillip Landigran’s name on it and it promised to follow children and their toxins from gestation thru early childhood. The study design looked excellent. How else to assess environmental impacts, including autism, on children. Then the study completely collapsed. And only at that moment did I realized that vaccination status has been surreptitiously removed from the study design anyway. It was a tragic moment for science. Does anyone know more about the story. Are there any studies in design that could honestly address the issue.
Posted by: Anna Quandt | January 20, 2022 at 03:27 PM
Another related issues I want to post is this
alutfriends.org and akimisrael.com or AKIM and ALUT, these organization are from Israel and pertain to autism and intellectual disabilities. My point here is these groups are mostly privately funded organizations that provide housing,nursing care, part time jobs, sheltered workshops, day care, therapy, ect. for those with serious disabilities including autism. What interested me more is that many people benefiting the organizations are foreign and Israeli volunteers who are vetted. This is an example of what I mean by privately funded and worth learning from autism parents.
Posted by: Bill | January 20, 2022 at 11:40 AM
Thanks for keeping an informed eye on the federal research.
Ten million on eye-gazing types of bio-markers? Maybe we're looking at grants for other things and autism is the cover story for the spending. Maybe the epidemic TPTB clearly have no intention of reversing is useful in setting up stuff like DARPA's transhumanism projects.
People are talking about Project Veritas' release of a DARPA publication where the participants discussed (pre-plandemic) suppressing drugs that would work, like Ivermectin, against their coming plan-demic. If this paper is legit, or even partially, I wonder if we have similar "classified" discussions about the "federal" approach to autism. Maybe even some "not gain-of-function" gain-of-function research was funded with autism funds?!?
But clearly they keep recycling the same approaches with or without much advanced planning. How hard is it to get Suramin for instance, especially now that some think it would help shut down Spike, but they shut it down when it became apparent it was extremely beneficial for some poisoned into autism.
But they are making sure our injured can get injections of spike-protein generation technologies (and who knows what else) without contraindication!
IMO, we cannot afford to allow them (the captured federal government, largely) to have anything more to do with determining the course of things, nor have anything to do with what they promote. We can't affort to empower them to "help" our injured.
Posted by: Jeannette Bishop | January 20, 2022 at 10:52 AM
There is no mystery. Fauci is at the heart of the coverup by controlling grants. It has always been depopulation via vaccines. It continues with the Covid jabs. Get rid of Health and Human Services and the 1986 National Childhood Vaccine Injury Act. Only then will the numbers subside.
Posted by: Emmaphiladelphia | January 20, 2022 at 10:49 AM
Katie-thank you for your excellent post on the money being wasted on the wrong genetic and other useless autism studies. We have been working with a doctor who also knows that the NIH and CDC and other organizations have wasted millions of dollars on useless genetic studies, looking for signs of autism with all kinds of new stupid tests, and they have wasted many years of time that should have been used to do important research into "neuro immune dysfunction syndrome," which is what our doctor is calling this condition. He says our children have an illness that must be addressed with the right medication research that can actually "cure" the autism condition. The money needs to be redirected at the CDC, NIH and other research institutions that can help develop the medications that will correct our children's disease/illness condition. They have wasted so many years of useless studies and thrown away millions of dollars that could have helped our children recover years ago. I have an adult son with autism and know so many other parents who have adults with autism now and we have made no progress in correcting their tragic condition. We have the technology and if you have any connections or know someone who can get through to the CDC, NIH or other research institutions our doctor and our family as well as many others would be very grateful. We need this desperately to save our children and future generations of children from a lifetime of this tragic autism condition. Thank you all for reading this urgent message.
Posted by: Gayle | January 20, 2022 at 09:45 AM
Katie, many thanks for doing this work for us every year. It is indeed appalling, and heartbreaking, to see so much money being wasted that could otherwise go towards understanding, alleviating and eventually resolving the struggles of the growing mass of people and families with autism. Is there anything we can do at all? Are there any points of contact in the NIH grant-awarding area where we could hope to apply some pressure?
Posted by: R's Dad | January 20, 2022 at 08:49 AM
Funding depends on NOT looking in the right place for answers. They really already know the answers. It makes me ill to see commercial after commercial stating that pregnant Moms should get the CoVid shot to protect their babies. That the "science" has deemed these shots "safe and effective." As if there have been years and years of stellar research. No worries here. So when the babies have problems later on - if they survive to be born - will that be blamed on CoVid as well and not the shot? When my daughter was diagnosed in 1996, the numbers were 3 or 4 out of 10,000 children were diagnosed with autism. Now what are the numbers? For boys, 1 in 36? 1 in 31? Maybe when it gets to be a 50/50 shot, (haha) people will stop rolling the dice. Just sick.
Posted by: Jill in MI | January 20, 2022 at 08:25 AM