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.