One of the great surprises of the Obama administration, for this Canadian father of a 14 year old boy with severe Autistic Disorder, and long time autism advocate, is the nomination of a divisive, confrontational but very high functioning young university student with Aspergers to a prominent US disability council. Mr. Obama won respect around the world, including here in Canada, for his ability to reach across traditional political battle lines to move forward with a consensus. Yet, with the nomination of Ari Ne'eman President Obama has nominated a young man of limited experience with, or knowledge of, autism disorders and absolutely no experience with severe Autistic Disorders who opposes curing autism, and mocks and ridicules the concept of recovery from autism disorders despite the work done over many years by people like Dr. Doreen Granpeesheh of CARD to do exactly that.
Mr. Ne'eman also attacks the Autism Speaks organization which has raised autism awareness substantially by its many high profile media events and by its involvement in the establishment of World Autism Awareness Day recognized by the United Nations. Mr. Ne'eman himself has found an organization led by people just like him ... very high functioning autistic persons or persons with Aspergers. He has displayed in his public comments no understanding of the serious life long challenges facing severely autistic children and adults.
Nor has he shown any respect whatsoever for the role of parents in raising severely autistic children to live the most fulfilling lives possible and the wishes of many of them that research aimed at finding autism treatments and cures continue. Mr. Ne'eman, the young university student, views the "autism spectrum" as an entity of which he is the natural leader. In Mr.Ne'eman's mind he is better suited as a person with an extremely mild form of autism spectrum disorder to decide what is important for severely autistic children than the parents and families who care for and love them. For President Obama to embrace this divisive ego as a disability council nominee is bizarre and unsettling.
My opinion carries zero weight in US political matters. Perhaps as a Canadian my opinion actually carries a negative factor. But as the father of a severely autistic son who was diagnosed with his Autistic Disorder before Mr. Ne'eman received his very mild Aspergers diagnosis, and who has been involved in autism advocacy for a dozen years, I know that this appointment will cause great harm to the future prospects of the severely autistic in the US and elsewhere in the world beginning right here in Canada where US influence is not an abstraction but a fact of daily life. For many years US autism research, including the research conducted by Dr. Ivar Lovaas, and the work done at places like CARD and the May Institute, have been huge positive influences in helping Canadian children with autism disorders including my son. It now looks as though US autism thinking is taking a turn for the worse and that will be felt here in Canada... to the detriment of children with severe Autistic Disorder ... children like my son Conor.
Thank you so much for writing this. I wished I had known about this article prior to signing the petition to send to President Obama regarding Ne'eman as I would have linked your article to my comments.
ReplyDeletePetition found here: http://www.ipetitions.com/petition/opposeari/
The more I think about it the more I believe President Obama chose Ne'eman to pretend to pacify the Autism community and really only wants to please big pharma's in this country:
http://www.youtube.com/watch?v=AmSvDb9jotk
The above video is what I sent to Obama during his campaign and he wrote back commenting on it. And is partly why I voted for him.
By choosing Ne'eman, (the type who thinks Autism rocks -which irks the **** out of me) is a slap in our twin son's Cameron's face.
All the best to you and Coner.
They're currently fighting btwn themselves. How long until ND and ASAN self-destruct??
ReplyDeleteSarah (Cat's in a Dog's world) is one of the leader's of one of the ASAN groups and never told. Michelle Dawson ratted - Socrates posted some very ignorant posts. Then there's the lot of them that simply blame their parents for their lot in life and how their parents don't understand them and tortured them during their youth... Yet, had their parents not worked with them, bought services for them.. they wouldn't be able to whine.
Can't stand the lot of them. They hate parents and they hate other autistics that wish they weren't.
Piss poor representation IMO.
They complain too that AS has all this money... geez, who do they think it comes from. Not the guy with Autism living on disability... but the parent. Whine at the parent... call us names... we aren't them a nickel.
I hope he never gets the Nomination. I hope Capitol Hill does what it does best... find scandals... b/c his own people are currently making him look like a fool. If he can't control them or his message how will he be able to do so playing with the "big boys"?
I don't hate my younger son. I am doing the best I can in an attempt to give him the best start in life. But to attack us because we don't think it's fair that he won't be able to go to College or drive or live on his own or get married... Excuse me?? It isn't "ok"... and neither I nor him should accept it as our lot in life.
"How long until ND and ASAN self-destruct??"
ReplyDeleteNot sure if "Neurodiversity" will ever self-destruct: I think they will always be here but I think that many will eventually have less extreme views (although I know there will always be those with very extreme views).
The core of "Neurodiversity" isn't bad: it just completely spiraled out of control to the nonsense that it is now. Everyone in the autism community wants the best for people with ASDs, wants them to be happy and successful, and this is what "Neurodiversity" branched from.
Unfortunately, it has become a kind of cult.
Everyone in the autism community needs to utilize critical thinking: this would help get rid of all of this ridiculous fighting.
And to stop taking everything personally.
I have Jonathan and Harold's blogs linked on my blog so to some "NDers" this is a reason not to speak to me because of who I "associate" myself with.
I don't like who many "NDers" associate themselves with (frauds and liars) but that doesn't stop me from talking to them personally.
Pretty much everyone in "Neurodiversity" is under the influence of group think, which is very strange since they all say they have an ASD.
I'm one of the few independent voices among the online autism community.
Dr. Granpeesheh being a DAN directory, and accepting a positon at Thoughtful House is extremely problematic. My daugther received her ABA from CARD, a few of her therapists were wonderful, many tried hard but lacked experience, and a few were dismal to be polite.
ReplyDeleteI strongly believe ABA was instrumental in pulling my daughter from the depths of autism and back into this world. So I am saddened that such a person as Dr, Granpeesheh ended up at an organization which practices dubious therapies.