Friday, October 02, 2009

ASAN's Autism Spectrum Takeover: Disempowering the Severely Autistic

ASAN is an acronym for an organization called the Autistic Self Advocacy Network. It's board of directors consists of persons self described as persons "on the autism spectrum". The founding president is Ari Ne'eman a university student who has declared to the world that "WE" don't want to be cured". Who is included in Mr. Ne'eman's Royal We is not entirely clear although it certainly does not include my son on whose behalf Mr. Ne'eman definitely does not speak. Essentially ASAN is comprised of a group of persons with Aspergers and HFA diagnoses, and others who identify with the Autism Spectrum and who purport to speak on behalf of all persons "on the spectrum". Although it purports to speak on behalf of all persons on the spectrum ASAN actually objects to truthful depictions of those suffering from the realities of classic, severe, autistic disorder diagnoses.

Other than its university student president the ASAN Board of Directors comprises other persons "on the spectrum" who are lawyers, computer science and information technology graduates. One who claims to have an autism diagnosis is a lawyer, married with two children and gainfully employed in the publishing industry. These people have nothing in common with the autistic persons who can not communicate or have very little communication ability, with or without technology. They have nothing in common with those autistic persons who live in institutional care.

The ASAN Directorate, understandably given its members impeccable academic and professional credentials, objects to any negative depictions of autism disorders. The ASAN directors and members want to redefine autism. They do not want to be identified with the many persons with Autistic Disorder who are intellectually impaired or otherwise severely challenged. They find offensive any mention of the challenges faced by families or society in caring for the severely autistic. ASAN has organized public protests and petitions to oppose any negative depiction of autism spectrum disorders. It's most recent victims were the parents who produced the "I Am Autism" video through Autism Speaks. Autism Speaks "kowtowed" (as described by Jonathan Mitchell of Autism's Gadfly) before ASAN's pressure. Autism Speaks effectively abandoned those parents and the severely autistic in favor of the academic and professional persons on ASAN's autism spectrum.

ASAN expressly subscribes to a social model of autism. That is to say that it does not see autism disorders (it does not use the term disorders to describe the conditions of those on the "Spectrum") as medical disorders at all even though some of them have medical diagnoses of unspecified Pervasive Developmental Disorders. ASAN objects to the notion of curing autism.

You will find no mention of the severely autistic on the ASAN web site. You will find no mention of Autistic Disorder. You will find no mention of the fact that many persons with Autistic Disorder also have serious intellectual deficits. Autism disorders are never mentioned in negative terms. You will see rationalizations and even glorification of some of the deficits associated with life "on the spectrum".

On the ASAN web site you will see an article, About Autism, borrowed from's autism (neurodiversity) page which does not refer to intellectual or other deficits. Instead it describes different sensory experiences, non-standard ways of learning and approaching problem solving, deeply focused thinking and passionate interests in specific subjects, atypical, sometimes repetitive, movement, difficulties in understanding and expressing language as used in typical communication and difficulties in understanding and expressing typical social interaction.

Those with severe autistic disorder, those autistics with intellectual deficits, those who live in institutions do not exist on the ASAN "spectrum". The severely autistic are being disempowered ... by an organization which defines autism in terms of the self images of the high functioning professionals and university students who comprise the ASAN leadership.

To the extent that ASAN suppresses free expression of the realities of the severely autistic it is acting contrary to the interests of the severely autistic. ASAN's leaders are disempowering and oppressing the very people who, unlike ASAN's leaders, would have been diagnosed as autistic under the DSM III.

ASAN is effectively engaged in the takeover of the Autism Spectrum.

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jonathan said...

I believe that since Ari Ne'eman wants to discuss problems autistics have in the workplace and offer his input in spite of the fact that he has never actually held paid employment of any kind that he should get a job in a group home with severely nonverbal autistics, and care for them and clean up their feces when they smear it. Restrain them when they attack people and run after them when they elope away from the group home.

Michelle Dawson, Morton Gernsbacher and Laurent Mottron should go to the homes of the parents of severely autistic children who perished from drowning, being hit by cars and trains, etc and look those parents in the eye and tell those parents that autism isn't harmful as per the journal article the three of them authored, Autism: Common, heritable, but not harmful.

Kim McKay-White said...

I'm speechless...and that doesn't happen very often...-- the mom of a severely autistic 7 year old....

farmwifetwo said...

What you said!!!!

So, Harold, when's the book coming out??? Seriously. May not agree with all your "talking points", but IMO the only way to make your own POV heard, is to write it yourself and send it to those that make the policies and those on your personal team.