The ASAN, Autistic Spectrum Advocacy Network, is continuing its takeover of the autism spectrum of disorders and its unrelenting attempt to transform autism from a medical disorder to a social club for persons with High Functioning Autism, Aspergers, self diagnosed "auties" and persons with autism like symptoms.
At the same time that the university students, lawyers, researchers and other very capable members of ASAN are expanding the definition of autism at the high functioning end of the spectrum they are seeking to exclude those persons with severe autism, the low functioning severely autistic persons with Autistic Disorder.
Any mention of the severely autistic or the challenges that confront them and the families who actually care for them is strictly verboten in the new world order of the self professed "auties" and "aspies" who take offense at being associated with persons who can not communicate by any means and who live their lives in institutional care. Better that the severely autistic become, or remain, invisible autistics then the self esteem of the ASAN leaders be hurt by inclusion in the public mind with lower functioning persons with Autistic Disorder.
Autism Speaks made the mistake of kowtowing to the ASAN outrage over the I Am Autism video which, like Autism Every Day before it, spoke of the harsher realities of actual autism. Now ASAN, drunk with victory for having forced a guilty plea from Autism Speaks, is planning to harass parents and other members of Autism Speaks in a walk for autism.
ASAN declares "nothing about us without us" and then acts to do that very thing to the very vulnerable severely autistic persons and autistic children who they do not represent. ASAN now harasses very many persons with autism disorders who they do not represent. ASAN does not want the world to know the truth, that autistic disorder is a severely disabling medical disorder requiring substantial commitment and sacrifice from families and society. Autism truth is not fashionable at ASAN.
Hopefully Autism Speaks has learned its lesson and will make a greater effort to present the realities of autism to the world notwithstanding howling from the barely autistic members of ASAN.
autism
3 comments:
ASAN and it's followers need to remember who has the $$$. Not them, not Autism Speaks but the PARENTS of those with autism.
http://autisticcats.blogspot.com/2009/10/grasp-deceptive-or-confused.html Sarah griped in this post about the lack of funds that ASAN has.
"What if an organization like ASAN had even a fraction of Autism Speaks' vast funds? I'd wager that money would be much better spent in terms of actually improving autistic people's lives."
I'm still trying to figure out how ASAN improves Autistics lives?? All I've heard is griping about how hard done by they are, how they are owed jobs, owed housing, and how they hate parents of children with autism.
As for money for ASAN... they better start sucking up to the parents.
http://autisticbfh.blogspot.com/2009/09/cultural-symptoms.html
http://rettdevil.blogspot.com/2009/09/you-arent-autism-we-are-shut-up-and.html
I have a lot more links.
But the people who make the decisions for their children and adult children are still the parents, not some 'organization' that claims to know all about something they know little about. People and children that actually have "autism".
Harold, about a year ago I had a brief E-mail contact iwht Ari, because I felt indeed ASAN was leaving out autistics who cannot pass for "just like everyone else" out from its advocacy (I myself don't like the oh-so-capable stereotype promoted by some Aspies/auties, either). I unfortunately lost his response, but remembe rhe pointed out some advocacy they'd done for lower-functioning autistics and autistics in institutions (one example that comes to mind is Nate Tseglin). I agree they could do more actual advocacy for autistic people to improve servces, community supports, etc., and I don't see the use in all of the protests (but then again I don't see the usefulness in Autism Speaks' walks, either). However, I thinkt he type of advocacy I'd want ASAN to do for lower-functioning autistics, is not something you'd agree with.
IMO, Autism and Aspergers need to be listed as separate conditions in the DSM because they are. Your son and mine do not have the same condition as someone with Aspergers, period. It is an entirely different degree of symptoms. This is not say that the symptoms of Aspergers are comprehensively better or worse, just that they are different.
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