By Katie Wright
I have been poring over every NIH autism grant from 2009. Every single grant, the amount awarded and the investigator is listed and categorized within of the Strategic Plan guidelines. The Strategic Plan recommendations have been really improving over time but the NIH grants have not.
While tallying up categories of NIH autism research I kept coming across giant grants for something called ACE. What is ACE? I had no idea, but apparently it means Autism Centers of Excellence. Excellence is an adjective used very liberally here. If, like me, you interpret the word “excellence” as meaning novel, exciting, innovative research that raises the bar, sets higher standards, you would be wrong.
ACE would more accurately be described as Autism Centers Extracting $ from Taxpayers for Redundant Autism research. ACE-TRAR, for short. Maybe its just me but I think our families want to see some “excellent” research in clinical interventions, medical interventions and environmental science so that we can prevent a % of ASD by identifying triggers. Those 3 areas of research represent huge spending gaps within the NIH. They are high priority areas for families. When was the last time you heard a parent longing for more face processing research?
ACE centers do no research on regression or biomedical science. Neither does ACE invest in any research on the ubiquitous and ignored GI and autoimmune problems endured and rarely treated effectively in children with ASD.
Virtually all ACE centers are doing identical face processing, autism “gene,” mirror neuron (an area of research that has been found to be useless in autism research) and autism diagnosis research. If you actually need more than a diagnosis from one of these centers you are out of luck, buddy. ACE centers also do plenty of MRI studies, the most over funded area of autism research. The research is so redundant, each center is almost interchangeable. ACE does no biomedical research and no novel treatment research whatsoever. No, ACE specializes in the few areas of autism research already saturated w/ $.
ACE eats up over 13 MILLION dollars of our autism research monies. To make matters worse it appears that a high % of that number goes towards administrative costs. There are all kinds of sneaky grants towards “ACE supplementation admin,” or “ACE core supplementation.” Whatever… it equals bureaucracy.
What kind of accountability exists for ACE? Who approves all these nearly identical studies? Why are the administration costs so high? What is “excellence” actually supposed to mean? Where is the community and taxpayer input within ACE?
Katie Wright is Contributing Editor for Age of Autism.