"My identity is attached to being on the autism spectrum"
Ari Ne'eman, New York Times, Nov 3, 2009
If you ever wondered why some autism self advocacy groups like ASAN, and some self advocacy leaders, like Ari Ne'eman, protest and exert pressure to prevent discussion of the harsher realities faced by low functioning persons with autistic disorder, particularly those with Intellectual Disabilities, you now have the answer.
Ari Ne'eman and some other autism spectrum self advocacy groups who protest realistic depictions of persons with low functioning autistic disorder like to identify with autism but not with those who live in institutional care or otherwise lack their own considerable intellectual, communication, social .... and ... self promotion skills. Parents talking about the harsh realities of their own children's severe autistic disorders just isn't a feel good experience for the very high functioning Ari Ne'eman and other "autism spectrum self advocates".
Fortunately for Ari and company the New York Times, the New Yorker, CBC and other mainstream media are happy to indulge their whims as the NYT almost confessed in A Powerful Identity, a Vanishing Diagnosis :
Asperger’s has exploded into popular culture through books and films depicting it as the realm of brilliant nerds and savantlike geniuses.
I say almost confessed because while the NYT points out that Asperger's has exploded into popular culture through books and films it does not mention that media organizations like the NYT, the New Yorker and CBC, also dote on the Asperger's and High Functioning Autism end of the spectrum while ignoring the harsh realities of those with severe Autistic Disorder. The result, with organizations like Autism Speaks bowing to pressure from groups like ASAN, is that the most severely autistic persons remain hidden from public view in institutions or in their parents' homes ... they remain the Invisible Autistics. Meanwhile Mr. Ne'eman, barely autistic, revels in the media spotlight ... his identification with his own self defined autism spectrum intact.
autism
A developmental delay in joint attention, perspective taking, sometimes referred to as an absence of theory of mind is a hallmark of autism spectrum disorders. That adults who might be considered by some "barely autistic" are unable to take the perspective of parents of more impaired children on the autism spectrum is no big surprise.
ReplyDeleteOkay, I will make my own confession. Being autistic is part of my identity too. PART of my identity, not the WHOLE of my identity. Just like being a flute player or being clumsy, being an honor student or being shy are part of me, so is my HFA.
ReplyDeleteIf anyone wants to know my full position on Neurodiversity, I'll tell you. But here is not the time or place.
I remember a young man on YouTube who identified as having Asperger's Syndrome. He was extremely angry and regularly gave out death threats to people who disagreed with him. This included fellow Aspies, and it didn't matter how polite you were or how trivial the disagreement was. I remember this man threatening another Aspie not to come to England. If he did, he would trap him on a highway and speed toward him in a truck with intent to kill him. This is what he deserved for seeking to exterminate the autistic population.
What was this poor Aspie do to earn such a fate. He had the nerve to enjoy the movie "Mozart and the Whale." He did NOT believe that it was propaganda that was offensive to autistics and a danger to society. What an Uncle Tom, not to mention Nazi!
As for lower-functioing autistics? "They are a disgrace to the autistic community! I don't even want them on the same planet as me!" He also accused them plenty of times of being retards.
Straight from the horse's mouth!
" That adults who might be considered by some "barely autistic" are unable to take the perspective of parents of more impaired children on the autism spectrum is no big surprise."
Frankly, I think this is more an issue of immaturity than anything else. The most hard-core club ND members tend to be in their teens or early 20s and don't have the life experience or the perspective to see outside this happy-go-lucky ND universe they feed into.
At one point, I was more extreme on the ND issue than I am now, but I have mellowed out considerably.
Also referred to as the "inability to generalize or empathize with others."
ReplyDeleteYou know, I left a comment on Planet of the Blind this morning about the article...and I am being attacked right off the bat for not agreeing that Ne'eman speaks for "all autistics". Wow! Now I know what you feel like, Harold! They sure do get stressed!
ReplyDeleteDespite the fact that I disagree with the vigor with which ASAN protests what IMO are minor insutls to autistics (I for one laughed at the I Am Autism video), I have not actually seen Ari refer to autism, or Asperger's for that matter, as anything close to "feel good". In fact, when I've implied in the past that maybe ASAN is indeed excluding some autistics from its advocacy because they are not independent enough, I've been corrected with many examples of how ASAN helsp "low-functioning" autistics.
ReplyDeleteWith regard to your constant reminder to the world that there are autistics in institutions who do not have the communicative/social/self-care skills Ari presumably does: where did Ari deny that? All he might've said is that their disability isn't intrinsically confining them to institutions, but the way the care system works.
Astrid
ReplyDeleteYou don't seem to have read my comment carefully. I didn't say that Ari Ne'eman had used the expression "feel good" to describe having autism or Aspergers. Although he does state on behalf of all autistic persons - "we do not want to be cured" - and expressly disavows Autism as a medical disorder.
What I said is that Mr Ne'eman objects to negative depictions of autism which are not "feel good" images.
You also seem to object to me mentioning the severely autistic on this forum and reminding people that there are many who face much more severe challenges as a result of their autistic disorders.