By Katie Wright
Accountability at IACC! Thanks to the incredible, and I mean incredible, work of Dr. Susan Daniels’ IACC team the IACC audience were all treated to a wonderful presentation detailing the exact breakdown of how all NIH autism research monies were spent. (Click link for details spending analysis.) I love this office! Dr. Daniels’ team gets the job done like no one else. They produce an incredible amount of really important work. This work = accountability. Wow, did this office use the their IACC hiatus well. They produced reams of valuable information as well as a great web search program. Thank you.
The report CLEARLY showed that despite promises and assurances to the contrary, the NIH continues to spend the lion share of its $ on genetic research (76,798,748) and only 5% (yes, FIVE PERCENT, $4, 432,899) of its entire autism research budget on studying environmental factors. Just how many times have we heard Dr. Insel waxing on and on about how he now understands the importance of environmental research. Speaking for myself I have been hearing this sorry refrain for 5 yrs. Insel goes on talk shows, NPR, web interviews talking about how committed the NIH is to researching potential environmental triggers of ASD. This feels like just another case of a politician telling the voters what they want to hear and then quietly doing the opposite.
As usual Dr. Linda Birnbaum of the NIEHS defends the lack of environmental research by stating that “environmental” category is strictly defined as the study of chemical compounds and much gene / environment research was not included in this category. Please- “gene- environment” research is usually 90% genetic and 10% environmental in nature, so let’s be totally transparent here. Incredibly, we can always count on Dr. Birnbaum to rationalize the lack of environmental research funded via IACC. Of course environmental research means the study of chemical compounds! What is environmental supposed to mean: the study of Fragile X and the genome? No. Families want strictly accurate categories, not environmental padding.
Clearly it is not just the public comment speakers who are unhappy with the fact that ASD environmental science is grossly underfunded. Almost immediately Dr. Insel went on the defensive, attempting to rationalize the massive disparity between genetic and environmental research investments. Insel stated:” I mean people are all upset about this but it isn’t like 95% of the research is genetic and only 5% is environmental!” Yes, Dr. Insel that is pretty much exactly how it is! How I wish I was not in listen-only mode.
Clearly Dr. Insel had been working over time pre IACC meeting in order to portray the IACC report as an incomplete or inaccurate measure of autism research expenditures. In order to hide from the actual facts, Insel argued that the IACC portfolio report did not include all the autism research IN THE ENTIRE WOLRD and therefore the report was only semi accurate portrait of environmental research. Furthermore, only if one looked at all the research IN THE ENTIRE WORLD there is actually a great deal of ASD environmental research. Oh boy was Dr. Insel on a tear here! On and on and on about the explosion of autism research all over the globe and how much environmental research is really going on. In fact, by Dr. Insel’s count 38% of all autism research $ is spent on environmental science. We should be counting the ENTIRE WORLD of autism research in our portfolio accounting!
OK, this is nuts on so many levels. You know that crazy speech Otter gives Dean Wormer and the college students in “Animal House?” Otter insists that if Delta House is put on double secret probation then the entire fraternity system should be on probation and if Dean Wormer is blaming the entire fraternity system than he is blaming all colleges, and if all colleges are at fault than isn’t the entire United States of American really at fault…I know it makes no sense, but that is my point. Finally Otter says to Dean Wormer, “say what you want about me sir! Say what you want about Delta House! But I am not going to stand here and let you badmouth the United States of America!” All the students applaud.
I kept imaging Insel saying, “Say what you want about me! Say what you want about the almost total absence of NIH ASD environmental research! But I am not going to sit here and let you badmouth the ENTIRE WORLD of autism research!” We cannot flee from our failures and hide behind the whole world of autism research because:
1) We are all Americans here. So let’s stay put for a moment, and focus on our own problems.
2) NIH autism research is overwhelmingly genetic in nature. This research is conservative and uninspired. As a result we have achieved no breakthroughs and developed no new treatments in the past 10 years.
3) Sorry Dr. Insel, you cannot seriously claim that 38% of all the autism research in the world is environmental. Nor can you use that dubious figure to counterbalance the NIH’s failure to reasonably fund ASD environmental research.
4) France could be doing 100 studies the environmental science of face processing and call it environmental. Please, other countries can label their research any way they like that doesn’t mean it’s true. We have zero means by which we can hold foreign countries accountable.
Ok, so let’s return to earth and focus on the issues at hand. Why isn’t the NIH funding environmental research? I would like to hear a discussion about that. When Dr. Insel did return back to the United States all he wanted to discuss were the private and academic gene and brain institutes throughout the country doing some autism research and how IACC should include them at IACC meetings. IACC’s mandate is that public seats must represent the public. That means, people affiliated with large national autism advocacy and research orgs. These orgs must be totally transparent in their financials and legitimately represent the ASD community. For example, AS, the National Autism Association, Talk About Curing Autism and SafeMinds are such organizations. But no, Dr. Insel did not want leaders from NAA or TACA on IACC, despite the fact that these organizations have over 30,000 members, fund research and serve 10s of thousands of ASD families. Instead, Dr. Insel wants IACC to guest host academics and bureaucrats from the Rockefeller Institute- who do more, wait for it….Genetic research! Dr. Insel just doesn’t get it and never will.
Let’s bottom line it: the NIH spends only FIVE PERCENT of
its entire autism research budget on studying environmental factors. This is
unacceptable and must be remedied.
Katie Wright is Contributing Editor to Age of Autism.