And Now the Truth: Environmental Toxins "Not a Good Fit" for NIH Autism Research
By Dr. Mary Catherine DeSoto
This is in the context of broad disapproval and frustration within the autism community over NIH funding priorities. The general level of concern was documented by a 2008 letter signed by eleven major autism organizations (including Autism Speaks, Autism Research Institute, Safeminds, Autism Society of America, Generation Rescue, National Autism Association). The letter stated, "Research on the environment, gene-environment interaction and treatment are underrepresented...." There seems to be great frustration among these groups and others that regardless of acts of Congress, directives or calls for serious investigation into how the environment triggers persons predisposed to autism, there is too much research focused on genetics to the detriment of studies of environmental triggers.
The Inter-Agency Autism Committee (IACC) developed a plan that included serious research spending on investigating autism's environmental causes. Their strategic plan was published. In 2009 there was a program to increase federal spending (the "ARRA" funds related to the need to stimulate the economy out of recession and into recovery) and NIH announced a multitude of new funding opportunities as a result. There was a long "Research Funding Announcement" (RFA) which is a call for scientists to submit proposals to spend available grant money on their research interests.
Persons who get their PhDs in a scientific field learn how to get grants to support their research interests. One thing that is often done is to send an initial, short letter of inquiry, to get some feedback on how to pitch a full application for grant monies. Full applications are big long documents, sometimes 100 pages or more.
Like many researchers employed at a university, I receive emails from my university's grant office calling my attention to new funding opportunities that might be a good match, and I was encouraged to consider the ARRA grant opportunities from NIH. I noted there were a lot of RFA's (the full document was 181 pages!). I searched for calls with the word Autism in the announcement: there were ten. Eight clearly did not match the environmental intent of the strategic plan; they were about developing registries or comparing treatments. One was about gene and environment interactions but mentioned determining specific genetic variations and seemed to require genotyping. Only one mentioned the Interagency Autism Coordinating Committee (IACC) Strategic Plan and measuring biomarkers. This one looked good.
It was the only RFA on the NIH website posted (out of 181 pages of short postings) that mentioned the IACC strategic plan or seemed to be a fit for measures of Autism's environmental triggers or exposures. The NIH document included available grant opportunities for all branches of NIH (including NIEH, NIMH etc). I then looked up the IACC strategic plan and read it carefully. It seemed like a great fit. The RFA I inquired about read:
04-MH-101* Autism: Addressing the challenge. Target research gap areas identified by the Inter-Agency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research, including biomarkers, novel interventions, and new tools for screening, among other topics. Contact: Dr. Ann E. Wagner, 301-443-5944, [email protected] [Note: Ann E Wagner is currently a branch chief at NIMH, the part of NIH directly that houses the IACC]
My plan was to measure toxic levels in the environment, and then directly measure the levels in children with autism and controls (biomarkers of), and correlate levels to symptoms. In this way, I could establish norms for measured biomarkers based on measured environmental exposures among typical children, and then compare those with ASD to the norms. Possibly (this is what I hoped to check), if levels were higher than expected based on similar exposure in autistic children, this would point towards vulnerability to exposure and efforts could be made to limit toxic exposures in vulnerable children. It was a good match to the strategic intent of the IACC plan because I planned to measure biomarkers of exposure, which could lead to a novel intervention. I took the time to look at the IACC strategic plan (since it was directly mentioned in the funding announcement I was interested in pursuing). I located it and read it carefully to see if my aims were congruent. They were. To wit, the IACC website strategic plan on USA's Health and Human Services website (HHS.gov) included these key statements:
Initiate studies on at least five environmental factors identified in the recommendations from the 2007 IOM report.
Identify and standardize at least three measures for identifying markers of environmental exposures.
Determine the effect of at least five environmental factors on risk for subtypes of ASD.
From my read, out of the 181 page NIH document and hundreds of their RFA's, this was quite clearly the only possible match for what I wanted to do, which was to measure environmental exposure both environmentally and via biomarkers, among children with and without autism, and compare to symptom expression which could suggest strategies for intervention. However, I also had a specific methodological question about the possibility of including initial testing of a brand new technology being developed by some physicists to measure toxins. This prompted me to send a short inquiry via email. This is what I wrote.
> -----Original Message-----
> From: Cathy DeSoto [mailto:[email protected]]
> Sent: Thursday, March 19, 2009 5:25 PM
> To: Wagner, Ann (NIH/NIMH) [E]; Rob Hitlan
> Subject: 04-MH-101 Autism: Addressing the challenge
> We are interested in applying for the grant referred to below and will
> be submitting an application in early April. I have read the Interagency
> autism committee strategic plan and believe our aims would be a good match.
> The overall goal will be to investigate environmental risk factors,
> primarily via sources of pollution/toxic emissions from the perspective
> of genetic susceptibility for toxins having neurological effects,
> although we do not intend to measure genotype in anyway. We intend to
> propose direct measures of toxins among those with an ASD and controls
> (blood, hair or both) as well as measures of toxins in the environment
> relating to prevalence patterns, all of which will be elaborated upon in
> the actual proposal, of course.
> My reason for writing is to inquire if it would be appropriate to
> include a relatively small portion of the budget for testing of new
> spectroscopy instrumentation for the purpose of quantifying
> environmental toxins. Because we will already be proposing measures of
> toxins (for example soil samples via a grid layout in pockets of high
> prevalence) and because the new spectroscopy technique would be expected
> to allow easier and more highly accurate measures than is currently
> available (which would be explained in the full proposal), it would be a
> cost effective way to validate the method. Once validates, it is
> possible the new technique would be highly useful in relating toxins to
> health outcomes such as autism.
> I ask because whether or not to include this would change the key
> personnel. If this would be appropriate, we would include the developer
> of the new method (Dr. xxxxx xxxx and one of his graduate students) as
> key personnel, although we would anticipate actual funding only for the
> graduate student's time and the actual cost of testing. As above, it
> would be a relatively small portion of the budget, but will change how
> the grant is written.
> Thank you for your time,
This sort of note should be quite familiar to other research scientists with experience dealing with NIH. When I wrote this, I expected a fairly simple answer. Like, "No, new research tool for measuring chemicals would probably not be a good match, it may be best not to include this." or maybe, "NIMH is seeking to investigate novel ways to measure relevant exposures, although it is hard to say without the full proposal, such would be consistent with the broad aims..." .
However, what I received was quite a different sort of answer. The email was sent to Ann Wagner, as the RFA directed. The email letter was intercepted, however, and sent to a Lisa Gilotty :
> Subject: RE: 04-MH-101 Autism: Addressing the challenge
> Dear Dr. DeSoto,
> Thank you for your interest in the Autism Challenge Grant Topic. I have forwarded your inquiry to Lisa Gilotty, who will respond to your questions about your proposed research. Due to the extremely high volume of inquiries for the challenge grant topics, Dr. Gilotty will not be able to provide individual assistance to potential applicants. Thank you.
> Frank R. Avenilla, Ph.D.
> National Institute of Mental Health (NIMH)
> Dear Dr. DeSoto,
> While this general plan fits with the goals of the IACC's Strategic Plan for ASD Research, it is not a good fit with the priorities of the NIMH. As such, I would strongly encourage you to direct this application to one of the challenge grant topics from NIEHS. Barring that, you should indicate assignment to NIEHS in your cover letter. This work (while extremely significant) would not be a high priority for the NIMH.
I was sincerely surprised. In fact I was so surprised I thought there was a mistake. I had read the IACC goals, and was sure it was exactly the kind of proposal that fit with their goals, " Determine the effect of at least five environmental factors on risk...". I could not (at the time) imagine that the idea of investigating environmental toxins in persons with autism was off limits for an RFA from the NIH that requested biomarker research and referred to IACC goals and an NIMH contact person. There was a stated budget to do so, a pretty big one. Furthermore, I did not see any NIEHS challenge grants that remotely fit my aims. I sincerely thought my letter of inquiry had been routed to the wrong person, by mistake. So I wrote them back.
From: Cathy DeSoto [mailto:[email protected]]
Sent: Friday, March 20, 2009 7:42 PM
To: Gilotty, Lisa (NIH/NIMH) [E]
Subject: Re: 04-MH-101 Autism: Addressing the challenge
Please forgive me but I am a bit confused.
The grant I am inquiring about appears to be a challenge grant.
It is listed as a priority here (having an * by it) NIH Challenge Grant
I certainly do not want to submit to a program not deemed to be a good
fit, and I very much appreciate honest feedback on this, but I want to
be sure my intent is clear before looking elsewhere. I had meant to
inquire to Dr. Wagner, if somehow my email has gotten misdirected.
04-MH-101* Autism: Addressing the challenge. Target research gap areas
identified by the Inter-Agency Autism Coordinating Committee (IACC)
Strategic Plan for Autism Spectrum Disorder Research, including
biomarkers, novel interventions, and new tools for screening, among
other topics. Contact: Dr. Ann E. Wagner, 301-443-5944,
But she clarifies. No mistake.
Gilotty, Lisa (NIH/NIMH) [E] [email protected]
Dear Dr. DeSoto,
I apologize for the misleading text in my previous note.
Yes, I understand you are inquiring about the below-referenced Challenge Grant Topic, Autism: Addressing the Challenge. I also understand that you were likely trying to e-mail Ann Wagner about this inquiry since she was listed as the contact for that topic. However, that was an error in the contact listing (one among many, I'm afraid). I am the appropriate contact for that challenge topic. As a result, she has been forwarding all inquiries about this topic to my assistant, Frank Avenilla, who was responding initially on my behalf.
I hope this clears up at least some of the confusion. In terms of your research plan, as outlined it sounds very interesting, however it is not quite the right fit for an NIMH topic. You would be better to check the topics for NIEHS or perhaps NINDS for a better overall fit.
I apologize for my initial brief, and possibly brusque-sounding, reply.
Again, there were no other matches to apply to in the entire document, and what I had in mind would fit very well with the IACC plan the RFA cited. But there was no alternative contact or program suggested for NIEHS. This cannot be explained by rejecting funding of the project due to poor proposal quality, or anything like that, because they had not seen any methods or any proposal. They did not even know which toxins I wanted to measure. It was not that I applied, they read and considered, and then they rejected it based on something about methods or anything else. It was the topic. Environmental causes. She stated their overall position in black and white.
About six months later, NIH sent a press release touting its adherence to the IACC's Strategic Plan for Autism Spectrum Disorder Research in its funding of 50 research projects. If anyone wonders why none of the $60 million dollars went to measuring biomarkers of toxic exposures in case and control children and trying to relate this to symptoms, it was not because there were no researchers interested.
Catherine DeSoto earned her doctorate at the University of Missouri (Ph.D., 2001) with specialization in Developmental Psychology and Cognitive Neuroscience. Her principal area of research involves investigating the influence of hormones on both normal behavior and the expression of psychopathology, particularly borderline personality. She is broadly interested in how brain function affects behavior, and has done research involving various brain imaging techniques, including ERP’s, optical imaging and MRI. Current research projects involve direct measurement of estrogen and testosterone levels via radioimmunoassay. Additional areas of interest are sex differences, autism, and understanding how internal biology interacts with environmental experiences and exposures to predict outcomes. She has published in leading peer reviewed journals ranging from the Journal of Experimental Child Psychology, to Clinical Toxicology, to The Journal of Cognitive Neuroscience. Her research articles have led to recognition by the Borderline Research Foundation, have been noted to be among the most read articles for all of Biology, and have been reviewed in media outlets ranging from Science to First for Women. Dr. DeSoto is married to Robert T. Hitlan and is the mother of four.
Thank you for this excellent exposé of behind the scenes. In my experience once a bureau-ratacy has secretly decided that x is not going to happen, there is absolutely nothing you can do to change it. I have had ten years of attempts at getting honesty from the NHS in the UK, and the lies lies lies (and non-answers) etc just go on and on. e.g. the still-unanswered questions at http://www.bit.ly/foihg . A crucial factor in this present case is that Cathy DeSoto has previously written some excellently "embarrassing" articles about mercury/autism and consequently the NIH etc have her on their secret blacklist. So when her application came in they would automatically go into excuse and buckpassing mode. Sort of like my NHS experience of "see a dentist" - "see a doctor" - "see a dentist" - "see a doctor" (ad infinitum including the NHS pseudo-Ombusdman). And also the endless cheap lies such as you can see at http://www.autismcauses.info/2008/01/peer-reviewers-of-pseudoneurotoxicology.html
Posted by: Robin P Clarke | June 30, 2014 at 07:10 PM
I'd like to recommend the 2012 documentary PINK RIBBONS, INC (newly available on Netflix, etc, and DVD). THE STORY IS THE SAME.
The ribbon branding and commercialization seen in Oct (breast cancer) and April (autism) are parallel but, more importantly, the exact extreme skew in research dollar spending on environment vs genetics in the study of breast cancer was exposed by Breast Cancer Action and others.
According to the film only 5% of breast cancer research explores environmental factors involved in causing the disease even though not more than 20% of cases are due to genetics. Sound familiar?
Dr Martha Herbert's concluding statement at the Maine CDC conference (which Ginger Taylor has available on her AdventuresInAutism blog) nails it. "What if..."
Posted by: FYI | June 18, 2014 at 12:09 PM
Looks like NIEHS has taken on autism so if NIH isn't going to help maybe seek out help through NIEHS.
Posted by: autismmom | June 17, 2014 at 03:28 PM
Everyone's predisposed to autism, given enough vaccines. You can't persistently load the bloodstream with toxins with impunity.
There are those at the NIH who are well aware of it.
Posted by: Shawn Siegel | June 17, 2014 at 10:59 AM
Thank you, Dr. DeSoto, for publishing your experience, and for making an effort to bring about valuable research.
"However, that was an error in the contact listing (one among many, I'm afraid)."
Maybe another "error" in Dr. Gilloty's mind was that this one and only one environmentally oriented RFA someone managed to stay on the list.
The last congressional hearing seems to have been by and large show. Some at the GAO tried to do their job and got chewed out for it. Obscurred by the focus on "potential duplication," the unresearched IACC priorities that only came up once or twice, unfunded it now seems because they didn't match the goals of federal "health" bureaucracies.
There's a rumor over the net that no federal income tax revenues actually go into funding our federal government activities, but going along with the unchallenged presumption that they do, we could just defund all these agencies, leaving a little more purchasing power in the hands of those who by and large want research priorities such as vaccine safety, leave research to private grants or maybe even crowd-sourcing and not do worse IMO. I'm pretty sure the founding of the NIMH for instance hasn't done anything to improve the mental health of the U.S.
Posted by: Jeannette Bishop | June 16, 2014 at 08:10 PM
Toxin research not a good fit for NIH autism research!? Lol, I just bet it isn't! A complaint should be made.
Posted by: Jen | June 16, 2014 at 06:10 PM
Give me a break! This was long to read and I was pressed for time but I just had to......what is the problem? They state there is money for environmental studies but then one is rejected (more likely hundreds) which follows what is needed and they do not even ask for more details.....who is helping out kids????? We as parents can only do so much - we need more help from the organizations that control the $$ so research can be done.....AND we are not even mentioning Vaccines!
Posted by: Trina | June 16, 2014 at 05:38 PM
Maybe time to involve a higher authority to complain about blocking an applicant as Ms. Gilotty is trying to do.
I found the name of these woman who works in HHS grants Office of Grants Policy, Oversight and Evaluation.
•Office of Grants Policy, Oversight and Evaluation Director, Audrey Clarke
◦Email: [email protected]
Ms. Dean works in this Office of Grants Policy, Oversight and Evaluation and is the Director, Division of Grants Compliance and Oversight for NIH:
About the Office of Grants Policy, Oversight and Evaluation
The Office of Grants Policy, Oversight, and Evaluation (OGPOE) formulates Department-wide grants policies including uniform administrative rules and provides oversight and review on implementation of HHS grant policy. OGPOE provides coordinated leadership in cost policy management and Department-wide cost policies and procedures affecting assistance awards. The Office leads the preparation of HHS and Government-wide positions on proposed legislation or Government-wide policies affecting grants and represents the Department’s interest regarding internal and external grants management activities.
OGPOE develops the Department’s grants training and certification program and provides management oversight across HHS for implementation of these activities. OGPOE leads HHS efforts to streamline and improve the transparency of grant information.
Office of Grants Policy, Oversight and Evaluation
ABout the HHS grant review process:
Key HHS Grant oversight contacts:
Posted by: autismmom | June 16, 2014 at 02:33 PM
This is outrageous obfuscation of research that could lead to understanding the environmental triggers of developmental regression. These people should be investigated for blocking important environmental research. Thank you Dr. DeSoto for sharing this vital information. I am disgusted with these NIMH research gatekeepers who have blocked environmental research. This is really basic science to measure baseline exposures to toxins. What a dishonoring of human life! Appalling!
Posted by: Dawn Loughborough | June 16, 2014 at 01:27 PM
I find this very perplexing and frustrating.
I think Dr. DeSoto should write Ms Gilotty back and ask her to explain exactly how this proposal is "not a good fit" given that they include environmental exposures in their RFA (see NIMH RFA excerpt below). Described below are areas of interest in the RFA for NIH autism research grants. Environmental and environmental exposure are described in this grant under "area of interest". Gilotty's explanation is too vague. On what grounds she is claiming that this is not a good fit. Her own personal judgement or is it based on the criteria outlined in the RFA- because the latter shows that is a good fit which makes me wonder why she would dissuade Dr. DeSoto from applying.
Title: Research on Autism and Autism Spectrum Disorders (R03)
Lisa Gilotty is listed under people to contact- maybe ask other contacts.
"Areas of Interest:
"Epidemiology: Studies of the genetic and environmental epidemiology of autism to determine risk and protective processes in the etiology of autism, including environmental exposures during pregnancy and early childhood; longitudinal studies of high-risk populations; epidemiologic research on interactive genetic and environmental factor or processes that increase or decrease risk for autism; research on the expression of the full range of autism spectrum disorders; studies of their developmental course across the life-span; studies that characterize the range of expression within families; and research on co-occurring features, especially research that characterizes and quantifies risk and protective processes associated with co-occurrence. Also of interest are clinical epidemiologic studies of autism spectrum disorders in clinical settings, including studies of clinical decision-making in personal-encounter care for individuals and families.
Screening, Early Identification, and Diagnosis: Key diagnostic and phenotypic features associated with various stages of development; development of new screening tools for use in a variety of settings; assessment of comorbid features including hyperactivity, attentional or executive dysfunctions, and epilepsy; the creation of new measures to be used in longitudinal studies and measures that further differentiate the subtypes of autism spectrum disorders; and, developmental factors relevant to reliable and valid diagnosis.
Genetic Studies: Family-based or population-based genetic analyses that aim to 1) Identify specific susceptibility genes using candidate gene/region based approaches, whole exome as well as whole genome sequence approaches; 2) Investigate epigenetic mechanisms and long range control of gene expression; 3) Conduct high-resolution mapping and positional cloning studies; 4) Detect locus heterogeneity; and 5) Analyze the interaction of autism susceptibility genes with environmental exposures and/or genes responsive to environmental insult. An area of particular interest is the effect of genetic factors on therapeutic drug response in individuals with ASD (see Pharmacogenomic Studies, below).
"Brain Mechanisms: Studies of brain mechanisms underlying the development, regulation, and modulation of behaviors characterizing autism and autism spectrum disorders, particularly those mechanisms involving communication and social interaction; studies of brain mechanisms and biological factors underlying autistic regression, or the loss of previously acquired skills; studies of brain mechanisms involved in the development of abnormal electroencephalograms and epilepsy and studies to clarify the subtypes of seizures and seizure disorders in autism; studies to define the neurobiological basis of neurological abnormalities and neuropsychiatric symptoms, and the exacerbation of these symptoms, including the role of neuroimmune/autoimmune factors and mitochondrial dysfunction; studies that seek to define basic processing deficits using neuropsychological and cognitive neuroscience techniques; studies using animal models to examine brain dysfunction related to autism and autism spectrum disorders, based on either genetic or environmental factors or their interaction; studies using novel reagents and tools to identify molecular, cellular, or developmental mechanisms distinguishing autism spectrum and control subjects."
Posted by: autismmom | June 16, 2014 at 12:43 PM
And so we see, clearly, why the idea that autism can be diminished and prevented seems to make no headway when it comes to government policy. This is NOT just an issue of pharmaceutical lobbying influence on democrats to promote and protect vaccine (and other synthetically derived or toxin containing) medicine. Neither do the republicans, who love their oil and chemical lobbyists, want autism to stray from the purgatory of incurable genetic unsolvable psychiatric illnesses.
Let's say, for instance, 30% of our population suffers from mitochondrial and/or methylation issues, making them vulnerable to vaccines (or the toxins in them), and certain non-mandatory manmade chemical toxins in our daily environments. . . Which markets or suppliers would be comfortable saying it's okay with them to lose almost a third of their target buyers (who will avoid them once informed)?
Thank-you so much, Dr. Desoto, for showing so clearly what I consider to be corruption within the NIH.
Posted by: Jenny | June 16, 2014 at 10:50 AM
So maddening, so wrong. Thank you for speaking out, Dr. De Soto. This confirms what seemed to be.
Posted by: Twyla | June 16, 2014 at 10:33 AM
The skrew ups -- the upper, political savy upper crust of the NIH told the lower, skrew ups -- but at least honest skrew ups -- no environmental studies.
We all know why.
Posted by: Benedetta | June 16, 2014 at 10:26 AM
I really respect Dr. De Soto for putting this out.
This clearly shows what's wrong with the thinking of the current regime. Studying environmental influences on autism is just not on the agenda.
There is a reason for that.
This is why the status quo - and the Combating Autism Act - must end.
Posted by: Louis Conte | June 16, 2014 at 09:15 AM
Autism is a neurological disorder. Failure of language development is the most serious disability. This has not been addressed in any of the IACC strategic plans.
An article in the Scientific American (the October 1969 issue) provided an explanation for me of why my first two children were having trouble learning to speak. Nuclei in the brainstem auditory pathway were severely damaged in monkeys subjected to asphyxia at birth. FH Gilles reported the same neuropathology in human children and suggested this might be a cause of developmental aphasia (J Neuropathol Exp Neurol 1963, 22:318). See also http://www.ncbi.nlm.nih.gov/pubmed/7376826.
Complications at birth have been reported more than any other factor as a possible cause of autism. This topic is as carefully avoided as vaccinations.
I received many email messages after I put up my website (conradsimon.org) asking how soon after birth Conrad’s umbilical cord had been clamped. It was before he was breathing. Conrad was across the room, white as a sheet, with a team of people working to resuscitate him.
Clamping the umbilical cord immediately after birth was adopted as standard practice in the mid 1980s, about the same time the vaccine schedule was ramped up. I have tried to bring up the danger of umbilical cord clamping at IACC meetings since November 2003. Finally, this was briefly discussed at the meeting in April 2014. I will try again in July. I will continue to try to point out my presentation in 2008, online at http://iacc.hhs.gov/events/2008/slides_eileen_simon_112108.pdf.
The focus of research must be the brain, and how it is affected by all of autism’s many causes.
Posted by: Eileen Nicole Simon | June 16, 2014 at 08:33 AM
So what little they put toward environmental research was just for show -- and the skrew ups underneath the political savy guys do not even have enough sense try to fake it.
Or perhaps -- a glimmer of hope --- they are at least honest.
Posted by: Benedetta | June 16, 2014 at 08:32 AM
I was encouraged to read that Dr. Mary Catherine DeSoto has requested research using new spectroscopy instrumentation for the purpose of quantifying environmental toxins to measure toxic levels in the environment.
Unfortunately, I suspect the moment Dr. DeSoto mentioned using "spectroscopy instrumentation" .. a huge red flag was raised .. by those responsible for awarding research funds.
Correct me if I am wrong .. but .. I believe the discovery of viral DNA (pig virus) found to be contaminating Rotarix vaccine was made by a team of scientists at an independent research lab in San Fransisco, California, where they used new technology (spectroscopy instrumentation?)to detect fragments of viral genetic material .. that was invisible without the technology .. in vaccines using genetic sequencing.
Am I wrong .. did I read somewhere that Sutterella (?) virus found in the gut of autistic children was also discovered using spectroscopy instrumentation?
Can you imagine the panic that gripped the entire vaccine industry when this new "spectroscopy instrumentation" became available for researchers? Suddenly .. all kinds of toxic "impurities" contained in vaccines that were not visible to researchers using "old technology" .. were now being discovered for the first time in history.
Heck .. I am just "joe six-pack" .. but .. I can easily understand why an application to use "spectorscopy instrumentation" .. was not well received by those responsible for awarding research funds.
Posted by: Bob Moffitt | June 16, 2014 at 08:07 AM