Comments on: Senate Confirms Controversial Autism Self-Advocate To National Disability Council

By: jackiemarquette

jackiemarquette — Sat, 26 Jun 2010 13:22:46 +0000

I congratulate you Ari Ne’eman
I wish everyone could see the value and hope of having Ari in this position. Although I disagree with the critics, I empathize with parents’ sadness because I have been in your shoes. My son Trent who has autism and is now 33 years old was once viewed as a child severely afflicted with autism. His growth and capability increased throughout the years to living his own life as an adult: living independently with supports, having a job, and is an artist. All this occurred because of broad creative supports, specifically designed environments and accommodations, and people who accepted Trent. I would say to those parents, be grateful for Ari Ne’eman and support his efforts. Regardless, if there will ever be a cure or never a cure, Ari can be a powerful voice and a positive influence impacting your child’s life to a better future than before. Living in a world where any form of acceptance is increased for people with autism and their families is one of the highest forms of quality of life. I am grateful and fully support Ari Ne’eman and encourage you to be too. Jackie Marquette Ph.D.

By: mplapert

mplapert — Sat, 26 Jun 2010 06:59:02 +0000

First, the fact that he was confirmed unanimously begs the question why he is referred to as a “controversial” nominee. Second, as the brother/guardian of someone with a severe form of autism (though pro-institution parents insist he must be mildly disabled), I find Mr. Ne’eman’s views that focusing on currently accommodating autism as a disability, as opposed to searching for a “cure,” to be entirely consistent with my views. Why should the fact that Mr. Ne’eman’s autism is less severe than my brother’s render his views irrelevant to my situation or, worse, disqualify him from serving on the NCD? I have benefited tremendously from the views of self-advocates such as Mr. Ne’eman, who have helped me understand my brother’s so-called “mysterious” behaviors better. Perhaps “atfari,” who claims to disdain “junk science,” would like to go back to the days of Bruno Bettelheim, when we never listened to self-advocates and believed with unwavering certainty that cold and uncaring mothers caused autism while the child was in the womb.

By: vmgillen

vmgillen — Fri, 25 Jun 2010 20:59:49 +0000

Ne’eman is autistic – and Obama is black, ok? Having said that, at this point we need to get rid of the “autistic” or ASD label entirely. It is meaningless. To continue with analogies: a Dx of autism is like a Dx of sore throat: Ranges from SIB, Non-Verbal, MMR, to socially-awkward visual processer; ranges from cancer to strep to too much yeslling at a sporting event. puh-lease. It is a label of convenience, a construct of gate-keepers who wish to dole out benefits based on an entry in a handbook rather than direct need.

By: twinkie1cat

twinkie1cat — Fri, 25 Jun 2010 04:37:14 +0000

It is always interesting how mainstream society finds the only solution to a disability is to lose it. Our society pushes conformity over individuality. I had students who had cerebral palsy who said it was not a bad thing to have a disability. It is just something that “is”. The deaf community also sometimes takes the attitude that accommodation and acceptance are preferably to becoming hearing people. I can see where high functioning autistic people would have the same attitude because sometimes some aspects of autism, such as the ability to focus and attend to detail and the special skills of savants can be a gift.

By: atferli

atferli — Thu, 24 Jun 2010 13:32:15 +0000

Ne’eman’s anti-treatment views are rooted in his fundamental naïveté about autism, belief in pseudoscience,, and his remarkably narcissistic outlook that his experiences resemble those of even a minority of people with autism. I’ve met him and read his viiews. He seems largely ignorant of the effects of untreated autism on families and the fate of children who do not get treatment. He seems completely out of touch with severe autism–unless the person is highly compliant and sits there. In those cases, Ne’eman apparently believes that the person is simply unable to get their thoughts out, and might benefit from the discredited pseudoscientific intervention, “facilitated communication.” He believes in FC strongly enough that he attends FC meetings and had FC put into PSAs made for the Dan Marino Foundation. This means that you can be assured that his views with not be informed by scientific research. Maybe he will agree with Anne Donnelan and William Stillman that people with autism are also psychic. As for the narcissism, we see him introducing himself to people at conferences and meetings, chatting comfortably, speaking in front of groups large and small, going to college, starting an organization, and getting appointed to government boards, all in his early 20s. Yet, he seems to think that his experiences are enough like those of others with autism that he can be an effective advocate. Maybe he doesn’t need treatment. That doesn’t mean others would not benefit from it.

By: cfreg99

cfreg99 — Wed, 23 Jun 2010 21:42:11 +0000

This is great. I can only hope that this person will enlighten others with their capabilities and help them to see beyong the label. Cheers.
Another thing I wanted to add was that I agree with Ne’emans belief that autism should learned to be accepted and accommodated. People are always looking for the “quick fix,” cure me so I won’t be broken potion. I love my child for who is, and he has made me a better person today. Our children have a lot to share and contribute to this society.

By: rdurano

rdurano — Wed, 23 Jun 2010 19:51:44 +0000

I have a severely affected autistic daughter. Mr Ne’eman does not represent her needs or interests in any way, shape, or form. The only way my daughter’s interests on the National Diability Council will ever be represented is when the parent of a severely autistic child who cannot speak for his/or/herself is appointed to the council. Mr Ne’eman’s appointment does nothing to help my daughter’s interests. Bad move Barack! Tim Ziegeweid

By: MomOfPDD

MomOfPDD — Wed, 23 Jun 2010 16:24:10 +0000

Hurray for Ari! I’ve been following his email list for some time, and I’m so glad that someone like him is on the council.

As a mom to a child on the spectrum (PDD-NOS), I do not understand why people want a cure. So many of the amazing things about my child are “comorbid” with autism, such as his incredible intelligence. And just looking at my autistic friends and my child’s classmates… people would risk damaging the genes that make them amazing, just to keep them “normal”?!

I keep getting told that my child isn’t really autistic, because he is physically loving and was able to read before his fourth birthday. Try reading his progress report sometime… try taking him to a party, try watching him with other kids. I’m so glad he has the extra support in school to help him understand and live in the NT world… but that’s FAR from a cure, and I don’t want one.

By: Autisticandawesome

Autisticandawesome — Wed, 23 Jun 2010 15:40:57 +0000

He will do the community proud!