"the NIH and NIMH are impeding progress in research about causes, diagnostics, and treatment in autism and similar syndromes.
By clinging to an oversimplified and outmoded model of autism (ie, it's gotta be genetic), the stubborn persistence of several research administrators in the NIH and NIMH means that funding for autism and autism-spectrum syndromes remains funneled into the hands of a small group of researchers who pledge (via NIH-grant contracts) to conduct their research in accord with the model wherein "it's gotta be genetic" (1).
This funding pattern imposes a serious limitation on research that ought be occurring, given the growing amount of new data which indicate that *more than* genetic-aspects need be considered.
The relationship between (a) the offically approved though outmoded paradigm and (b) subsequent funding patterns is worth re-stating:
The persistence of the NIH and the NIMH in focusing almost entirely upon a genetic-theory of autism means that a goodly amount of data continues to be ignored, shunted from view, and unfunded -- even as the primary genetics-model researchers are blessed with abundant funding despite decades of non-success (1). For instance, the data from Wakefield, Warren, Singh, Shattock, Oleske et cetera are important, as are patterns amidst parental anecdotes -- eg, gastrointestinal atypicalities, vaccination effects, extraodrinarily recurrent otitis et cetera.
The relationship between (a) the offically approved though outmoded paradigm and (b) subsequent funding patterns is worth re-stating:
The persistence of the NIH and the NIMH in focusing almost entirely upon a genetic-theory of autism means that a goodly amount of data continues to be ignored, shunted from view, and unfunded -- even as the primary genetics-model researchers are blessed with abundant funding despite decades of non-success (1). For instance, the data from Wakefield, Warren, Singh, Shattock, Oleske et cetera are important, as are patterns amidst parental anecdotes -- eg, gastrointestinal atypicalities, vaccination effects, extraodrinarily recurrent otitis et cetera.
However, as recent years have shown, despite the many new data and anecotes, the NIH and NIMH are resistant to change. The new data remain virtually ignored, the parents' anecdotes treated as if mere hearsay. Not surprisingly, in the face of this bureaucratic intransigence, the goal of changing and improving the NIH and NIMH in regard to autism funding will require increased effort."
Teresa Binstock, Researcher in Developmental and Behavioral Neuroanatomy, in IGNAZ SEMMELWEISS and AUTISM: when prevailing paradigms resist change, 1999
The Binstock article, referenced above, was a review of Jeanne Achterberg's book Woman as Healer and the sad story of Ignaz Semmelweiss who challenged medical orthodoxy of his time (1818-1865) by gathering data and arguing that peuperal (childbed) fever was caused by the unclean hands of those who delivered, or assisted, delivery of children. Hospital wards staffed by midwives had a 3% mortality rate due to fever while those staffed by medical students who often came straight from autopsy rooms to the maternity rooms, and either did not wash their hands, or wiped them on already bloody, dirty clothes, had a 10% rate.
The medical establishment of the time did not believe Semmelweiss and he was professionally punished by lowering his academic standing and restricting his hospital privileges. Ultimately he became depressed and committed to an asylum where he died of blood poisoning. Binstock noted similarities between the treatment afforded Semmelweis, his conclusions, and his data and what has happened today to the anecdotal evidence of parents and researchers who followed up on that anecdotal evidence.
Teresa Binstock's contention that research of a possible vaccine-autism conection has been discouraged by public authorities is in fact confirmed in the Institute of Medicine (IOM) Immunization Safety Review: Vaccines and Autism (2004) . In that document the public health authorities expressly discouraged research of vaccine-autism connections as shown at p. 152:
Biological Mechanisms Conclusions
In the absence of experimental or human evidence that vaccination (either the MMR vaccine or the preservative thimerosal) affects metabolic, developmental, immune, or other physiological or molecular mechanisms that are causally related to the development of autism, the committee concludes that the hypotheses generated to date are theoretical only.
SIGNIFICANCE ASSESSMENT
The committee concludes that because autism can be such a devastating disease, any speculation that links vaccines and autism means that this is a significant issue.
PUBLIC HEALTH RESPONSE RECOMMENDATIONS
The committee recommends a public health response that fully supports an array of vaccine safety activities. In addition the committee recommends that available funding for autism research be channeled to the most promising areas.
Policy Review
At this time, the committee does not recommend a policy review of the licensure of MMR vaccine or of the current schedule and recommendations for the administration of the MMR vaccine.
At this time, the committee does not recommend a policy review of the current schedule and recommendations for the administration of routine childhood vaccines based on hypotheses regarding thimerosal and autism.
Given the lack of direct evidence for a biological mechanism and the fact that all well-designed epidemiological studies provide evidence of no association between thimerosal and autism, the committee recommends that cost-benefit assessments regarding the use of thimerosal-containing versus thimerosal-free vaccines and other biological or pharmaceutical products, whether in the United States or other countries, should not include autism as a potential risk.
Apart from the express discouragement of funding of research of a possible vaccine autism connection it is interesting to note the first paragraph of the above quote. The highlighted portion states "In the absence of experimental or human evidence " that vaccines are causally related to autism any such hypothesis can be theoretical only. Having noted an absence of evidence the IOM then discouraged any research that might have produced such evidence. It is also becoming less certain that the epidemiological studies were as well designed as the IOM contended given the continued presence of thimerosal in vaccines, including some vaccines given to pregnant women.
In the last year the Poling case upset the IOM 2004 strategy. Government had to acknowledge that, at least in some subsets of children vaccines could trigger "autism like symptoms" :
if you're predisposed with the mitochondrial disorder, it can certainly set off some damage. Some of the symptoms can be symptoms that have characteristics of autism.
Dr. Julie Gerberding, Director, CDC, CNN Interview with Dr. Sanjay Gupta, March 29, 2008
As many have noted there is no intelligent distinction between autism and autism like symptoms. Autism is currently diagnosed by symptomatic behavior. In addition to Dr. Gerberding's reluctant acknowledgement of a vaccine-autism connection, Dr. Bernardine Healy, former director of the American Red Cross and the NIH, exposed limits of the epidemiological studes and expressed the need for further research of possible vaccine-autism connections in April 2008.
It is sheer folly to discourage research into possible environmental triggers or causes of autism. Not doing the research means that we might have missed out on possible treatments or preventative measures for autism. Teresa Binstock pointed out the folly of such a course of action in her 1999 comment. Now Irva Hertz-Picciotto, an author of the recent California study, has called for increased funding of research of possible environmental causes of autism.
It is time to move away from the "it's gotta be genetics" paradigm of autism research that Binstock described in 1999. It is time to move ahead with the autism research paradigm shift that the University of Minnesota called for in 2007, a paradigm based on the premise that autism is caused by a combination of environmental influence and genetic vulnerabilities.
It is time to end the "its gotta be genetics" autism research folly.
The medical establishment of the time did not believe Semmelweiss and he was professionally punished by lowering his academic standing and restricting his hospital privileges. Ultimately he became depressed and committed to an asylum where he died of blood poisoning. Binstock noted similarities between the treatment afforded Semmelweis, his conclusions, and his data and what has happened today to the anecdotal evidence of parents and researchers who followed up on that anecdotal evidence.
Teresa Binstock's contention that research of a possible vaccine-autism conection has been discouraged by public authorities is in fact confirmed in the Institute of Medicine (IOM) Immunization Safety Review: Vaccines and Autism (2004) . In that document the public health authorities expressly discouraged research of vaccine-autism connections as shown at p. 152:
Biological Mechanisms Conclusions
In the absence of experimental or human evidence that vaccination (either the MMR vaccine or the preservative thimerosal) affects metabolic, developmental, immune, or other physiological or molecular mechanisms that are causally related to the development of autism, the committee concludes that the hypotheses generated to date are theoretical only.
SIGNIFICANCE ASSESSMENT
The committee concludes that because autism can be such a devastating disease, any speculation that links vaccines and autism means that this is a significant issue.
PUBLIC HEALTH RESPONSE RECOMMENDATIONS
The committee recommends a public health response that fully supports an array of vaccine safety activities. In addition the committee recommends that available funding for autism research be channeled to the most promising areas.
Policy Review
At this time, the committee does not recommend a policy review of the licensure of MMR vaccine or of the current schedule and recommendations for the administration of the MMR vaccine.
At this time, the committee does not recommend a policy review of the current schedule and recommendations for the administration of routine childhood vaccines based on hypotheses regarding thimerosal and autism.
Given the lack of direct evidence for a biological mechanism and the fact that all well-designed epidemiological studies provide evidence of no association between thimerosal and autism, the committee recommends that cost-benefit assessments regarding the use of thimerosal-containing versus thimerosal-free vaccines and other biological or pharmaceutical products, whether in the United States or other countries, should not include autism as a potential risk.
Apart from the express discouragement of funding of research of a possible vaccine autism connection it is interesting to note the first paragraph of the above quote. The highlighted portion states "In the absence of experimental or human evidence " that vaccines are causally related to autism any such hypothesis can be theoretical only. Having noted an absence of evidence the IOM then discouraged any research that might have produced such evidence. It is also becoming less certain that the epidemiological studies were as well designed as the IOM contended given the continued presence of thimerosal in vaccines, including some vaccines given to pregnant women.
In the last year the Poling case upset the IOM 2004 strategy. Government had to acknowledge that, at least in some subsets of children vaccines could trigger "autism like symptoms" :
if you're predisposed with the mitochondrial disorder, it can certainly set off some damage. Some of the symptoms can be symptoms that have characteristics of autism.
Dr. Julie Gerberding, Director, CDC, CNN Interview with Dr. Sanjay Gupta, March 29, 2008
As many have noted there is no intelligent distinction between autism and autism like symptoms. Autism is currently diagnosed by symptomatic behavior. In addition to Dr. Gerberding's reluctant acknowledgement of a vaccine-autism connection, Dr. Bernardine Healy, former director of the American Red Cross and the NIH, exposed limits of the epidemiological studes and expressed the need for further research of possible vaccine-autism connections in April 2008.
It is sheer folly to discourage research into possible environmental triggers or causes of autism. Not doing the research means that we might have missed out on possible treatments or preventative measures for autism. Teresa Binstock pointed out the folly of such a course of action in her 1999 comment. Now Irva Hertz-Picciotto, an author of the recent California study, has called for increased funding of research of possible environmental causes of autism.
It is time to move away from the "it's gotta be genetics" paradigm of autism research that Binstock described in 1999. It is time to move ahead with the autism research paradigm shift that the University of Minnesota called for in 2007, a paradigm based on the premise that autism is caused by a combination of environmental influence and genetic vulnerabilities.
It is time to end the "its gotta be genetics" autism research folly.
autism
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