NOT THIS YEAR
Autism Speaks could be such an entity, but it has yet to earn the trust that will be needed to give its work credibility on both sides of these issues.
When Autism Speaks first came on the scene, its arrival was met with skepticism because its co-founder, Bob Wright served as the chief executive for a business (NBC) that derived advertising revenue from the pharmaceutical industry. Eyes were set rolling even more when Autism Speaks merged with and took over the National Alliance for Autism Research (“NAAR”) in a deal that had the new organization “adopting” NAAR's scientific advisory board and scientific advisory committee. Because NAAR had long earned the reputation of not wanting to look beyond simple genetics in studying autism, there was little room for optimism that Mr. Wright's initiative would do anything to help resolve the controversy.
But while it was still discussing the merger with NAAR, Autism Speaks issued a policy statement noting the still-unproven hypothesis of a connection to thimerosal, and it noted the need to further explore all environmental exposures:
The thimerosal question has highlighted a number of points whose further consideration should significantly advance autism research. First, although genes are believed to play a major role in autism, more attention needs to be paid to mechanisms where genes exert their influence by altering susceptibility to environmental exposures and mechanisms by which environmental exposures may alter gene expression. Second, there is a great need, when studying environmental exposures, to find ways of identifying highly susceptible individuals. And, third, because autism is a complex condition possibly having multiple causes, researchers need to find reliable ways to distinguish autism subgroups with distinct etiologies.
. . .
Autism Speaks plans to strongly support a multidisciplinary research agenda on environmental exposures and autism. We believe that projects acknowledging the role of gene-environment interaction and incorporating markers of exposure susceptibility and etiologic heterogeneity will be the most productive in the long-term. Given present knowledge, there is a fairly broad array of neurotoxic environmental exposures worthy of further study but, moving forward, the type and timing of exposures under investigation should continue to comport with emerging developments in autism neurobiology.
Thus, many of us hoped that Autism Speaks would step up and fund independent and credible research to help all of us move forward. And some day Autism Speaks may do just that, but not this year.
Autism Speaks issued a list of its Pilot Grants, in which it will dole out $5,600,000 to fund 50 projects over the next two years. Not one of the 50 projects directly addresses the question of thimerosal or vaccines, and none seek to examine the efficacy of the biomedical approaches so many of us use.
That is not to say that the studies receiving funding have no value. Most of the studies will add to the body of knowledge we need in areas like autistic cognition, visual processing, adaptive skills, the etiology of language deficits, sensory integration.
Other funded studies seem to be wasteful. Do we really need a two-year study, funded at $118,880, to detect and try to artificially eliminate body rocking and hand flapping? That seems to me to be the least of our worries. And while I'm sure that studying the impact of bilingual language exposure will yield interesting results, it seems to me that the $42,800 earmarked for that one-year study could have been spent better.
I count at least four studies on the role neuroligens play in autism. It's an important question, to be sure, but those studies, which are duplicative to a large extent, are being funded at the expense of other important questions. The same can be said for the over $223,000 to be spent over the next two years for two separate studies that will use functional MRI technology to measure cognitive changes during facial expression processing and social perceptions. Yet another two-year study will use fMRI technology to study visual motion processing impairments in autistic adults. (Indeed, fMRI must be the new toy of the moment as there are other studies using it as well. The other pervasive theme is the proliferation of studies trying to create an animal model for autism.)
One of the neuroligen studies is being conducted by Dr. Craig Powell at the University of Texas, who is also the recipient of another two-year grant trying to create an animal model for autism by studying a mutation of the PTEN gene. I'm sure Dr. Powell's credentials are outstanding, but so are those so many other fine researchers who might want to look into the questions Autism Speaks said they wanted answered.
The studies that may add something of substance to the issues of vaccine and mercury exposures, or environmental insults in general, are few. Dr. Ivana Kawikova of Yale has been awarded $120,000 for a two-year study looking at the role that inadequate immune systems may play in the pathogenesis of autism. Dr. James Briscoe received $59,948 for a one-year study of the impact of prenatal exposure to chemical tetrogens, including anti-seizure medications.
Another two-year study will look at neuroinflammation and the kynurenine pathway. How did this one get funded? I'm sure it had nothing to do with the fact it is being conducted by Dr. Michael Vogel, who just last year served on the panel that reviewed grant applications to NAAR.
I'm glad that someone besides Boyd Haley and the Geiers will be looking at the role of testosterone in autism. But the two-year study by Dr. John Gilmore at UNC (funded at a relatively modest $85,979) will look more at general influences testosterone levels may have on early brain development rather than the hypothesized synergy testosterone may have with particular environmental insults (i.e., mercury).
Two separate studies will look at abnormalities in glutamate reception and transmission, but neither will look at the interplay with environmental insults. Like so many of the researchers who are receiving the Autism Speaks grants, the focus will be solely on genetics.
Autism Speaks is a noble idea on the part of Bob and Suzanne Wright. I believe their intentions are good, and that they can do much good. Unfortunately, their vision has been hijacked by those who would rather stick their heads in the sand than acknowledge that other models for autism exist.
Debating the hypotheses of environmental triggers detracts from addressing the issues of what we can do to address the problem. The greatest progress will come after we have found out ⎯ with a reasonable degree of certainty ⎯ whether we are right or wrong in believing that vaccines and heavy metals played a role in triggering autism in so many of our children. Autism Speaks may yet surprise us all and be the organization that helps us determine the truth. But not this year.