Saturday, March 12, 2011

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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