Saturday, June 24, 2006

NOT THIS YEAR

Sources of funding add too much fuel to the fires in the debates over vaccines or thimerosal as possible triggers of autism. The vested interests of vaccine manufacturers and government regulators deprive any study they may fund of credibility among those of us who believe there may be a link. On the other hand, those that are inclined to discount any connection between vaccines and autism will automatically disbelieve any study funded by SafeMinds, Generation Rescue or any of the other advocacy groups. What we all need are studies funded by entities that aren't tied to a specific agenda on the issue.

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.

3 Comments:

Blogger Kristina Chew said...

Wade, I really appreciate your (as always) thoughtful assessment of a big topic-----what research a huge organization like Autism Speaks funds.

And, as much research needs to be funded, I would also like to see Autism Speaks putting out some money for teaching and therapist training----perhaps scholarship money for students to attend undergraduate or graduate programs---the individuals who spent the time teaching Charlie do such important work, and they more than deserve $$$$$ to help them.

6/24/06, 9:57 PM  
Blogger Wade Rankin said...

You are absolutely correct, Kristina. The state of services provided in our schools is a disgrace. An organization with the resources of Autism Speaks can certainly do much to make things better in the short-term, which is just as important as the long-term gains to come from research.

6/24/06, 10:13 PM  
Blogger María Luján said...

Hi Wade
As always, an extremely important reflexion.
A very recently published manuscript focused on treatments used by parents of children with ASD
J Dev Behav Pediatr. 2006 Apr;27(2 Suppl):S156-61.
Parental perceptions and use of complementary and alternative medicine practices for children with autistic spectrum disorders in private practice.

Harrington JW, Rosen L, Garnecho A, Patrick PA.

Department of Pediatrics, New York Medical College, Maria Fareri Children's Hospital, Westchester Medical Center, Valhalla, NY 10595, USA.

The prevalence of autistic spectrum disorder (ASD) in the United States is approximately 1 in 150 children. Many health care providers are unaware of parental beliefs and treatments, both medical and complementary, that parents use for their child with ASD. Understanding these beliefs and practices concerning diagnosis, cause, and utilization of medical and complementary care may help physicians provide better comprehensive care. Parents of children with ASD from 2 private practices-one in New York and one in New Jersey-were mailed a 6-page, self-administered survey. In addition to demographics and ASD type, the survey asked parents who diagnosed their child and if there was a perceived delay in that diagnosis; whether they believed there was any causal reason for their child's autism; what chronic symptoms, if any, their child experiences; and, if they had used any complementary and/or alternative therapies and at whose recommendation. Respondents included 77 of the 150 parents (51%) contacted. Most children were diagnosed by a neurologist and/or developmental pediatrician (54% and 47%, respectively). Average perceived delay in diagnosis was 18 months. Parents most frequently cited immunizations (54%), genetic predisposition (53%), and environmental exposure (38%) as a cause of their child's autism. Approximately half of children were reported as having at least one gastrointestinal, neurological, and/or allergic symptom; more than a third had immunological symptoms. Almost all parents (95%) indicated some use of complementary and alternative medicine (CAM) therapies, with most of the self-reported referrals generated from a physician or nurse (44%). Systemic complaints, parental beliefs, and use of CAM practices warrant open discussion by all health care professionals who provide care to this population.

What I see more and more , beyond the traditional research areas, is that the gap between what is being done by parents and doctors in practice and what is the research focusing is more and more big.

My sensation is that the funding is more focused in the traditional sense of genetic causes and neuroanatomic findings than in the treatments as a whole, including the effect of environment and xenobiotics(educational, therapists and biomedical field).


The situation I faced was not information-nothing- from mainstreamed medicine in practice about biomedical treatment, information about what NOT to do- or biomedical criticisms- from non-link defenders (and some very useful about what to do educationally) and mainstreamed research, and some trustable information about what to search from the link proponents and some rational information about further actions.
Where is the trustable, complete and serious-based on published science- information about what TO DO with the available information? This is a question that today each parent and each family must answer finding help in loneless and under personal research doing finally the most responsible decission that can, finding a doctor/many doctors with open mind to explore all the possibilities- with a rational and common sense- based approach-, (beyond the extremely important educational resources) with the information available to the family. Teachers in my country and special teachers were excellent in the advice of the educational issues. For me, I have found useful (and also non-useful) information in web/ conferences /books /published research in serious journals about autism from mainstreamed and non-mainstreamed sources and researchers. Again, the field of the greys in different degrees, as it seems to me is all in Autism.

When an integrative view of autism is going to be explored enough? When Doctors like MArtha Herbert can form part of a multidisciplinary team to give a serious insight of what biomedical is?
When an integrative view of what autism is, considering genetics epigenetics gene expression and environmental potential contributions will arise, from the concerted effort of different groups studying the issue analyzing all the possibilities from the non-link and the link in COMBINATION?
When all the published clues are going to be analyzed TOGETHER with open mind?
How does this situation will allow a space of real discussion of what is junk and what is not, what is useful and what is not and what treatments (under biomedical and mainstreamed) are really effective and safe?.
I am really concerned about all these issues.
María Luján

6/25/06, 9:24 AM  

Post a Comment

Links to this post:

Create a Link

<< Home