By Katie Wright
The grants AS’ Scientific Advisory Committee have chosen to fund are alienating the community of families. Parents see the redundancy and waste in so many over financed genetic and behavioral projects at the expense of meaningful treatment, biomedical interventions and environmental causation research. Over and over and over again, when board members had the opportunity to fund an innovative researcher, someone outside the box, someone studying critical environmental factors, someone proposing biomedical treatments, they have chosen the same names and the same tired projects. This tiny review board is jeopardizing Autism Speaks’ relationship with the community of families, who have a right to expect better.
First let’s look at the scientific grants. $450,000 to studying Skank 3- genetics. $450,000 to study social processing. $450,000 to study Fragile X mutant mice- genes. $265,000 to study Fragile X genetic links. $449,000 to study early identification in infants- the 10th such AS study. $450,000 to do a study on the outcome of ASD adults in order to identify their needs (good but ask the parents!) as well as a study on the effects of loss of sleep.
All these grants are modeled on the paradigm “autism is genetic” and this committee’s belief that dozens of early identification studies are an appropriate substitute for research helping children living today with autism. Social processing, visual processing, face processing are dated over researched tools for studying autism as a wholly heritable, genetic and behaviorally mediated disorder. There is nothing innovative here. A number of GI studies were rejected. An important biomedical treatment study for children with regressive autism was rejected as well as meaningful and under financed environmental research. No research on adjuvants, autoimmune interventions, severe food allergies or the urgent and immediate needs of ASD children and adults with severe chronic illnesses.
The study on the effects of loss of sleep isn’t bad, it just isn’t great. Don’t we already know (or better yet- live with) sleep deprived children and see everyday how it hinders their academic progress? Rather than describe what we already now, why not invest in research that would address the biological causes of wakefulness (often pain) and research cutting edge interventions?
The scientific advisory board is betting the house that millions of dollars invested into Fragile X, Retts and Tuberous Sclerosis will somehow, some way, some day benefit the other 90% of ASD children without these defining chromosomal defects. Reasonable people can agree to disagree on this research, but by any stretch of the imagination the sheer amount of Fx, Retts and TB grants is excessive. How could they fail to realize that?
Your kid is in unbearable gut pain? Tough luck. Your child regressed after multiple vaccines? Too bad. Your child is chronically sick and there are virtually no doctors or interventions available? Sorry. You are terrified to vaccinate your second child because you don’t know if the vaccine schedule is safe? Sorry the Scientific Advisory Committee can’t help you.
Now for the Treatment grants. $200,000 to teach parents pivotal response training. That is a good thing for those parents. $300,000 to study a medication for anxiety disorders. I really hope this is a worthy investment but the “search for the drug” theme that dominates the “let’s find the biological cause, not only treat the symptoms” concerns me. $200,000 treatment for Tuberous Sclerosis. $200,000 for Retts Syndrome Pharmacological research. Where does this end? $300,000 to Dr. Nancy Minshew (that’s right, Dr. Minshew) to study neurological/ cognitive therapy for high functioning young adults and a $157,000 computerized feedback program to facilitate speech and computer software for real time visual feedback.
Is it just me, or are the treatment grants practically identical to the science grants? Treatment interventions for Retts Syndrome, treatment interventions for Tuberous Sclerosis. So much redundancy! $157,000 for computerized feedback- the ultimate “Big Man, Big Machine” research. For Pete’s sake isn’t there a program at CalTech that would do this for free?
$300,000 to Dr. Nancy Minshew. I doubt any members of the hermetically sealed SAB are even aware of this researcher’s reputation. Minshew is infamous for her brusque dismissal of parental concerns and her vociferous defense of Paul Offit and the CDC. Even worse her study is not well designed and should have been a pilot program before awarding her a massive $300,000.
One of the biggest problems with the SAC is their tendency to fund the same researchers and the same projects over and over and over again, while rejecting innovators. I would bet Dr. Catherine Lord has received 5 grants thus far. She is only rivaled by Dr. Rebecca Landa, of Kennedy Kreiger. Both do extensive early intervention research. Both view autism as a behavioral disorder. Dr. Lord also maintains a busy schedule voluntarily testifying against our families in vaccine court. Lord has been funded to study underserved populations, a laudable goal, but she is conducting a study a measurement study of differing behavioral interventions. Don’t our underserved families deserve a researcher who has an appreciation and understanding of autism as a total body disease that often cannot be addressed by ABA alone? Underserved families are far more likely to live in polluted areas, raising the probability of chronic illness and the importance of studying environmental triggers and appropriate medical interventions.
Although it is not a top environmental science priority for families, the Vitamin D study does sound interesting. I hope it yields useful information. AS does not control the CHARGE study or the EARLI studies. The children to be studied by CHARGE have yet to be born! We are on our own when it comes to getting meaningful environmental science research done.
The SAC needs to be re-configured with parents, clinicians, immunologists and environmental scientists who are a part of the autism community and get it. The current review panel lacks a sense of urgency as well as scientists who have the courage to fund real environmental research.
Dr. Coyle is a psychiatrist Emeritus at Harvard, president of the Neuropsyhopharmacological Association. I’m sorry I do not see his relevancy and haven’t we all had enough psychiatry research in autism research to last a lifetime? Dr. Daniel Geswind is a professor of Neurology, Psychiatry, and Genetics. Dr. Geswind is nice guy, frequently on PBS programs speaking of ASD as a disorder that is 90% genetic and the need for MORE genetic research. Dr. Gary Goldstein is a neurologist and president of Kennedy Krieger, probably the largest single recipient of AS grants. When Goldstein was the chief science officer he rejected every GI grant, every regression grant and every biomedical treatment grant. Now Dr. Geri Dawson is AS’ chief scientific officer. Dawson is renowned for her work on early diagnosis and behavioral interventions. However, Dawson’s scientific advisory board still has NO experts in environmental science, no biomedical experts, no parents of severely affected children and no innovators.
So the final word on all AS grants are decided by a psychologist, a psychiatrist/ geneticist, a neurologist, an epidemiologist, a psychologist and one clinician. Where is the parent community? Not one of these individuals has a severely affected child or a child who regressed, or a child with chronic illnesses or a child who experienced severe adverse vaccine reactions. I doubt that some of these members have spent an hour with an ASD child w/ incessant diarrhea, fevers and immune diseases.
It is time to place parents and a new generation of scientists looking to the future, not the past, in those seats.
Katie Wright is a Contributing Editor for Age of Autism.