What Does the Alleged Autism Science Foundation Mean by the Expression Self Identified Individual with Autism?

The Autism Science Foundation has appeared, during its brief existence, to be nothing more than an undisguised element of the Offit Offensive aimed at discouraging open discussion of, and any research aimed at, possible vaccine autism links. For appearances sake the ASF does involve itself somewhat in other autism issues. But if the "science" in the Autism Science Foundation title means anything, whether it be research or the overwrought opinions of celebrities  which can be used to encourage the belief that vaccines never cause neurological damage or any other type of  harm or "adverse event" it is primarily directed at promoting vaccine programs. The Autism Science Foundation has no identifiable autism expertise to boast about.  It is difficult given its brief history, and primary mission of protecting vaccine programs, to know what they meant by "self identified individual with autism" as that statement was used in its recent all caps headline screaming post titled AUTISM SCIENCE FOUNDATION ANNOUNCES IMFAR STAKEHOLDER TRAVEL GRANT RECIPIENTS.

 In the list of travel grant recipients some were identified as parents, some by their occupation.  Two recipients were designated as self identified individuals with autism:

Mark Fornefeld—Self Identified Individual with Autism
Molly McGrath—Self Identified Individual with Autism/MIT Media Lab

The expression could mean that the two individuals named are persons with real autism disorder diagnoses who have identified themselves publicly as being autistic.  Or it could refer to individuals who do not have actual autism diagnoses but who have identified themselves as being autistic.  Such a practice does exist in some advocacy organizations which accept a person with a self identified autism diagnosis as constituting a person with autism.  ASAN, the organization with  a corporate board comprised of  very high functioning persons with autism and Aspergers does accept self identified or self diagnosed persons as actually having autism as stated on its web site:

About AutismAutism is a neurological variation that occurs in about 1 in 150 people and is classified as a developmental disability. Although it may be more common than previously thought, it is not a new condition and exists in all parts of the world, in both children and adults of all ages. The terms "Autistic" and "autism spectrum" often are used to refer inclusively to people who have an official diagnosis on the autism spectrum (see Diagnosing Autism) or who self-identify with the Autistic community. While all Autistics are as unique as any other human beings, they share some characteristics typical of autism in common.

If the Autism Science Foundation is referring to persons with self diagnoses of autism  when it refers to individuals self identified with autism it should make it clear in their press releases.  The ASF should, with its purported support for autism science,  also make it clear whether autism research projects they fund include  as subjects self diagnosed or self identified individuals with autism. 

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Offit Offensive Has Failed, Vaccine-Autism War Continues, Child Vaccine Refusals Increase in U.S.

Breaking News Update:


I had just posted this comment when I read the CP Breaking News update Parents with more education less likely to let their daughters get HPV shots featuring extensive commentary by Field Marshal Paul Offit the man with great vaccine credibility ... with the main stream media ... not so much ... maybe none at all ...  with parents, including apparently better educated parents.  Personally I think including Paul Offit in an article about vaccine safety is counter productive if parents are the audience that authorities are trying to convince. The article despite the education levels of the parents, blames the internet for leading these parents to question public health authorities pronouncements on vaccine safety.  As always the possibility that parental concerns might be legitimate is not referenced in the article.  The Offit Offensive ... the insanity ... continues.

 
The latest news from the Vaccine-Autism front is summarized succcinctly in the CBC headline Child vaccine refusals increase in U.S. The article reports on the study by Philip Smith and his colleagues of the U.S. Centers for Disease Control and Prevention in Atlanta which found that "between 2003 and 2008, the percentage of parents who refused or delayed vaccination doses "increased significantly from 22 per cent to 39 per cent."  Authorities will scratch their heads over this information, will wonder how they can get through to those stupid, ignorant, hysterical and ill informed parents who do not accept their dictates about what is best for their children.  They will continue to follow the same insane strategy of trying to convince parents, while insulting them,  that all vaccines, and all vaccine ingredients are always safe no matter how many times they are given and no matter what contrary information they might stumble  upon.  

What the authorities will not do, can not do, is acknowledge that they have not always been forthright in addressing public concerns and that they have ignored credible health professionals who in fact do have questions about the state of the "science" on vaccine safety particularly as it pertains to autism. 

If anyone from American or Canadian public health offices reads this blog commentary and decides that what I  say in this comment is typical "anti-vaxxer" nonsense they should know that I have two sons all of whom have received all of the recommended vaccine shots. I have never attributed my youngest son's severe autistic disorder to vaccination although I do have an open mind on the issue now.  I do not  believe the rhetoric of the failed, and insane, strategy of public health authorities and mainstream media giants who simply dismiss parents, health professionals and researchers who question whether "science" has actually determined for all time that all vaccines are always effective and safe.  The strategy has failed and yet the strategy continues to be relied on by the same authorities and media giants hoping for a different result.

On January 24 2009 in Einstein's Reply to Paul Offit I questioned the rationality of public health authorities and professionals who keep following the same failed strategy to convince parents to vaccinate their children and expecting to see different results.  I set out two quotes as an introduction to that comment:

"These outbreaks have not, apparently, been sobering. If anything, the number of parents choosing to delay or withhold or separate vaccines is increasing. So what will it take?

Paul Offit

Insanity: doing the same thing over and over again and expecting different results.

Albert Einstein"

It is now 16 months later and Paul Offit and company keep doing the same thing over and over and over again and keep expecting to see different results. The insanity has not ended and there are no signs that it will. There are no signs that  public health officials or the mainstream media will abandon the Offit strategy which has been an utter failure.  The increases in vaccine refusals are clear indicators that it is insane to keep following the Offit strategy and expecting a different result.

Insulting Jenny McCarthy and other parents fighting for their children will not work.  Let me repeat that one since it is quite simple yet difficult for Offit and company to grasp: insulting Jenny McCarthy and other parents fighting for their children will not work.

Ignoring health professionals and researchers  like Dr. Bernadine Healy  and pharmaceutical official Dr. Julie Gerberding, both of whom have previously stated that a study comparing autism rates of existing vaccinated and unvaccinated populations could and should be done will not work. Ignoring a clinical and academic neurologist and parent like Dr. Jon Poling who has called for more environmentally focused autism research, including more vaccine oriented autism research will not work. Ignoring a researcher like Dr. Irva Hertz-Picciotto who says that the studies allegedly disproving a thimerosal autism connection are flawed and that stronger sceince is needed on the issue.

Playing politics by appointing those like Ari Ne'eman who oppose curing  autism to the IACC will not work.  Allowing an Alison Singer, nominated to the IACC by Autism Speaks, to  abandon that organization's mandate by voting against an historically crucial recommendation for the comparative autism vaccine study before jumping ship to join Paul Offit at the Autism Science Foundation, will not work. 

Parents know that the "science" on vaccines and autism is not as solid as portrayed by the Offit media armies. They know that research of vaccine and other potential environmental triggers of autism has been discouraged since the 1990's.  They know that public health authorities like the IACC have pushed the flawed thimerosal autism studies while refusing to  conduct the comparative studies recommended by Gerberding and Healy and while refusing the Hertz-Picciotto and Poling recommendations for stronger scientific research on thimerosal and other vaccine autism issues.

I am a parent who vaccinates my children but still has questions about vaccines.  I acknowledge the important role that vaccines have played in public health and disease prevention in children.  But there is a resource which is even more important in protecting and promoting the health of children and that resource is parents. It is that resource which has been subjected to unrelenting attack by the Offit armies as part of a failed and insane strategy to convince parents to vaccinate their children. 

It is long past time for the Offit armies, including the new Autism Science Foundation, mainstream media like the NYT, the Chicago Tribune, the Globe and Mail and PBS and internet foot soldiers like the blogging sites listed on the Autism Science Foundation web site to leave the field.  It is time for health authorities and researchers who understand that parents are the number one resource in child health promotion to work with parents and address their concerns instead of dismissing them. 

Will my small voice be heard and have any impact? Highly, highly unlikely.  The odds are good that a year from now, two years from now, vaccine refusals will have increased again in the US and the Offit armies will still be in the field attacking the number one child health resource ... their parents ... and hoping to see a different result.

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Autism Science Foundation - Doesn't Science Require An Open Mind?

The Autism Science Foundation, a new purported autism advocacy group, has been formed and announced to the world.

I have some concerns about the ASF's approach to advocating for "autism science". The new Foundation has announced that it will focus on non-vaccine related causes of autism. From its inception it has ruled out the possibility that vaccines could cause or contribute to autism, even in potentially susceptible population subgroups. To this humble non-scientist such an approach smacks more of political goals than scientific research. The ASF makes a clearly political statement supportive of vaccine programs and concluding with finality that vaccines do not cause autism:

The Autism Science Foundation’s mission is premised on the following facts and principles:

• Vaccines save lives; they do not cause autism. Numerous studies have failed to show a causal link between vaccines and autism. Vaccine safety research should continue to be conducted by the public health system in order to ensure vaccine safety and maintain confidence in our national vaccine program, but further investment of limited autism research dollars is not warranted at this time.

In fact Dr. Bernadine Healy former CDC head, and Dr. Julie Gerberding, recent NIH head, have indicated that more vaccine autism research is needed. Dr. Duane Alexander, Director of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), an NIH agency stated, as reported by David Kirby at the Huffington Post that "scientists must investigate susceptible subpopulations of children, including kids with mitochondrial disorders and those who have trouble metabolizing mercury." Kirby quotes Dr. Alexander's statement from a February 24, 2009 interview with Dr. Geraldine Dawson of Autism Speaks:

"One question (is) whether there is a subgroup in the population that, on a genetic basis, is more susceptible to some vaccine characteristic or component than most of the population, and may develop an ASD in response to something about vaccination. We know that genetic variations exist that cause adverse reactions to specific foods, medications, or anesthetic agents. It is legitimate to ask whether a similar situation may exist for vaccines"

Given the existence of legitimate questions concerning possible vaccine autism questions it seems odd for an organization founded to provide quality scientific research to make such a dogmatic statement conclusively ruling out those very questions. It also seems odd that the founders of this organization believe that public confidence in the vaccine program will be maintained by shutting the door on areas of research in which substantial numbers of the population believe are legitimate areas of inquiry - including members of the public like Dr. Bernadine Healy, Dr. Julie Gerberding, Dr. Duane Alexander and Dr. Jon Poling.

Personally, this father of a 13 year old autistic boy does not have a rigid view of the vaccine-autism issues. While I once accepted without serous question the official view of these issues I have changed my position. While I have not concluded that vaccines or vaccine ingredients cause autism I now have an open mind on the issues, largely because of the views expressed by credible people like Dr. Healy. As a lawyer I can also not ignore the fact that some of the vaccine cases have resulted in settlements in favor of the plaintiffs where a vaccine-autism connection was alleged, particularly in the Banks and Poling cases.

Personally, this humble member of the public would have greater confidence in the safety of vaccine programs if more research of the type suggested by Doctors Healy, Gerberding and Alexander were conducted and the results were positive than by the incessant repetition of the dogma that the vaccine-autism link has been disproven. It has not. And many members of the public know that. It is time to do the research and move on.

Hopefully the "Autism Science Foundation" will stick to advocating FOR research of possible autism causes, and treatments, and not spend its time simply promoting the view, not shared by all, that there is no possible vaccine- autism connection.

autism

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