Approximately 75-80% of persons with Autistic Disorder also have Intellectual Disabilities or cognitive impairment. Yet ASAN, the "Autistic" Self Advocacy Network Board of Directors has no members who represent that large segment of the Autistic Disorder community. The ASAN site profiles its directors all of whom are, by the descriptions on that site, very intelligent and do not have an intellectual disability. It is not clear if persons with Autistic Disorder are represented at all since the Directors are all described as being "on the spectrum":
"Ari Ne'eman ... is currently studying political science in the Sondheim Public Affairs Scholars Program at the University of Maryland-Baltimore County and expects to graduate in May 2010.
Scott Michael Robertson ... has a bachelor's degree in computer science from Rensselaer Polytechnic Institute and a master's degree in human-computer interaction from Carnegie Mellon University. He is currently a Ph.D. Candidate in information sciences and technology at Penn State University's University Park campus.
Dora Raymaker, MS, Systems Science ... currently works on a number of research projects on topics related to healthcare and well-being (through OHSU, http://ohsu.edu), alternative and augmentative communication
Paula Durbin-Westby, B.A.(BA degree info obtained here) .... has testified at numerous IACC meetings
Meg Evans is currently employed in the legal publishing industry. She is a licensed attorney in the State of Ohio and received her law degree from Case Western Reserve University in Cleveland, Ohio.
Elesia Ashkenazy ... possesses a B.A. degree in Speech & Hearing Sciences from Portland State University. She is a licensed Speech-Language Pathology Assistant (SLPA) (BA degee and SLPA license info obtained here)
Melanie Yergeau is a Ph.D. candidate in Rhetoric, Composition, and Literacy at The Ohio State University, where she also teaches courses in writing, digital media, and disability studies."
The ASAN purports to be an Autistic Self Advocacy organization yet it excludes from membership on its Board of Directors persons with Autistic Disorder and Intellectual Disability even though 75-80% of persons with Autistic Disorder are also cognitively impaired. This is the same organization that rages and rants against Autism Speaks because it claims that its Board is not representative of the autism spectrum.
None of the specific "autism spectrum" diagnoses of the Directors are disclosed so it is impossible to determine whether some of the Directors are persons with Autistic Disorder diagnoses. In the case of Melanie Yergeau the ASAN site does not indicate whether she has an "autism spectrum" diagnosis at all. In the case of Paula Durbin Westby the site indicates that she learned about being on the autism spectrum but there is no indication that she has an actual autism disorder diagnosis. Meg Evans "was identified as autistic in early childhood". The site bio information does not indicate that she was actually diagnosed as having an autism disorder.
The lack of representation of persons with Autistic Disorder and Intellectual Disability on the ASAN Board is important in light of their claim to be an autistic self advocacy network working on behalf of all persons "on the spectrum". ASAN has organized protests of awareness campaigns that portray the harsher realities of autism disorders and describes autism not as a disability in the medical sense but only in the social sense that a person with an autism disorder is someone who is simply different. It is only society's intolerance that creates the disability.
As the parent of a child with Autistic Disorder with cognitive impairment I can not see this falsehood being perpetrated without speaking out against it. When I am dead or infirm my son will require the assistance of society in order to live and prosper. He can not survive on his own. His reality is shared to a greater or lesser extent by the 75-80% of persons with Autistic Disorder who are also intellectually disabled. The brilliant directors of ASAN who are "on the spectrum" do not know him and do not share his challenges. They have absolutely no right to claim to represent persons with Autistic Disorder and intellectual disability to the extent that they do so in the guise of being "self advocates".
ASAN directors oppose curing autism. They declare that "WE" do not want to be cured. Well and good. If my son had their intellectual AND social skills I would not want a cure for him either. But he does not have their abilities and many persons actually diagnosed with Autistic Disorder do not.
ASAN is wrong to oppose research aimed at curing autism. ASAN is an elitist group of high functioning individuals, some of whom may not even have an autism diagnosis, some of whom are known to have Aspergers diagnoses. They all demonstrate social, behavioral, intellectual and communication abilities not typical of most persons with Autistic Disorder.
ASAN misrepresents itself when it claims to being a "self advocacy" network for persons on the "autism spectrum". It is a claim that should be dropped.
autism
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