Saturday, October 16, 2010

Ari Ne'eman disenfranchises pro-cure and nonverbal autistics yet again

I see that once again, neurodiversity spokesman, Ari Ne'eman is
shooting his mouth off yet again yet again, claiming that the "autistic community" takes offense at eradicating autism. I have to wonder, yet again, does the "autistic community" include me? Does it include Jake Crosby, Stephanie Keil, Oliver Canby, JediKnight, Tom McKean, Sue Rubin and numerous others on the spectrum who have expressed desire for a cure? How about Connor Doherty who may not be in a position to speak for himself. What about Sean Lapin, Dov Shestack, John Belmonte and many other autistic persons who have limited to nonexistent speech who are incapable of rebutting Ne'eman's nonsense and asking him to butt out and speak for himself and and not for other autistics.

Ne'eman also stated in this diatribe at Harvard that autism should be looked upon as a disability and not a disease, yet neglects to explain the difference between a disability and a disease.

As has been meticulously documented in numerous posts on autism's gadfly, Ne'eman has repeatedly stated that he does not believe that autism is a disability in spite of claiming he never said anything to that effect. We have to wonder why he is now backpedaling and now stating autism should be looked upon as a disability. Could there be political reasons?

Ari Ne'eman and ASAN, I resent you trying to speak for all autistic persons. Almost all of us, myself included, are lower functioning (or more impaired for those who express distaste at the low functioning high functioning dichotomy) than you are. There are others who can't speak and say that they would like autism eradicated. There are others, besides me, who have expressed a desire for a cure. Their numbers seem to be ever growing.

Remember, Ari, nothing about us without us.

4 comments:

Kent A. said...

Jonathan,

I will be confronting ASAN in Washington D.C. on November 6th. Unlike last time: http://www.youtube.com/watch?v=7I6gmC9EHL0

I'll be there as an advocate journalist and asking some hard questions of the protestors.

I doubt Ari will be there after posting this on your blog. He's a bit afraid of me and he does read your blog for material to incorporate.

If you or anyone else would like me to ask a certain question to ASAN's high functioning Aspies, you can email me at kent99@me.com with your question.

JediKnight2 said...

Living as an autistic person is like living in a trailor park home. I could easily have as much fun in that type of home setting as much as I have fun now.

lurker said...

I agree Jedi. I'd probably be relieved living in a trailer compared to the mess I live in now.

It's so disappointing that Ne'eman has made a mess of a conference, which likely could have sustained some productive discussion if he hadn't practically screamed genocide again. Due to his increasing fame, it's getting too easy for him to get involved in things like these as a sought "autistic self-advocate".

Roger Kulp said...

“If you look at the last 30 years of dialogue about autism, the question has not been, ‘How do we make a better world for people with autism,’ but ‘How do we make a world without people with autism,’” said Ne’eman, who added that autism should be viewed as a disability rather than a disease.

Actually it's both.Something a lot of higher functioning types will never get.Putting aside possible political connections of Ne'eman's family,while I can see the rationale for putting a "person on the spectrum" on the IACC,certain people who made this decision,may not realize something about most people with Asperger's.They see all autism as Asperger's,and seem to think everybody with an autism diagnosis has experiences just like them.

This seems to be unique to Asperger's.People with other forms of autism,don't have this view. While I can see that someone with a more severe form of autism might not be able to serve on the IACC, if you truly wanted to represent the needs of every autistic,getting someone with Asperger's would not be the way to go.

I also think it's wrong to talk about a cure,when you don't know what you are curing.Once you realize what you are curing. Increasingly we are finding autism is due to an increasing number of genetic conditions,hyperbilirubinaemia,which can be caused by a number of genetic syndromes.DiGeorge Syndrome is not Fragile X is not mitochondrial disease.All these syndromes,and hundreds more cause autism. Management of autistic symptoms is possible,but not a cure for the forseeable future.

The research into genetic causes of autism is moving along nicely. There are many like Ne'eman,who are ignoring or avoiding it,every bit as much as the antivaxers are.

Have you noticed how much Ari Ne'eman looks like Allan Sherman?