First Autistic Presidential Appointee Speaks Out

[n2doc]

By Steve Silberman October 6, 2010

When Ari Ne’eman walked onstage at a college campus in Pennsylvania in June, he looked like a handsome young rabbi presiding over the bar mitzvah of a young Talmudic scholar.

In truth, Ne’eman was facilitating a different kind of coming-of-age ceremony. Beckoning a group of teenagers to walk through a gateway symbolizing their transition into adult life, he said, “I welcome you as members of the autistic community.” The setting was an annual gathering called Autreat, organized by an autistic self-help group called Autism Network International.

Ne’eman’s deliberate use of the phrase “the autistic community” was more subversive than it sounds. The notion that autistic people — often portrayed in the media as pitiable loners — would not only wear their diagnosis proudly, but want to make common cause with other autistic people, is still a radical one. Imagine a world in which most public discussion of homosexuality was devoted to finding a cure for it, rather than on the need to address the social injustices that prevent gay people from living happier lives. Though the metaphor is far from exact (for example, gay people obviously don’t face the impairments that many autistic people do), that’s the kind of world that autistic people live in.

Now, as the first openly autistic White House appointee in history — and one of the youngest at age 22 — Ne’eman is determined to change that.



Read More http://www.wired.com/wiredscience/2010/10/exclusive-ari-neeman-qa/

[ceile]

1. Interesting article...

"...the autism community has been distracted by narrow questions of causation and cure."

Valid point he's making.

[n2doc]

2. I was impressed by what he said

For a 22 year old he is pretty well spoken. His last comment speaks to me:


But the current bias in treatment — which measures progress by how non-autistic a person looks — would be taken away. Instead of trying to make autistic people normal, society should be asking us what we need to be happy.

[ceile]

3. Agreed.

I think we'll be hearing more from him in the future in regards to Autism.

[RainDog]

19. my older son is high-functioning autistic

and he was on the honor roll at his h.s., was all-state vocal jazz, studies and speaks French, participates in community theater and writes and speaks really well.

I'm glad to see this guy is working as a representative for the many with autism spectrum disorders who are as varied in their interests and abilities as any "neurotypical" person.

[Dreamer Tatum]

4. Also distracted by shiny object on ceiling.

Sorry, as an Aspie myself, I couldn't resist.

[ceile]

6. LOL!

I don't know why, but I found that very funny! :toast:

[reggie the dog]

11. is that part of autism

i scored within one to three points of having an autistic spectrum disorder when i took the test and my ex wife said she could not get over how we would be talking or i would be talking with a group when suddenly i would be distracted by something going on in the background, a car moving, or sunlight glittering off of something like a cd tied to a tree to the point that i paid more attention to the object than the conversation...i always thought i was a bit "strange"

[Dreamer Tatum]

14. it can be, yes.

That is why people with autism are often mistaken for ADHD.

[reggie the dog]

15. my high school principal wanted to put me on ritilin

as a suspecte adhd case but my parents refused to drug me, little did they know i already drank and smoked a lot of reefer, looking back it may be because when drunk or stoned i would go along with a conversation and people just thouht my wierdness was because of the alcohol or drugs
i also read this quote that hit home too " it’s necessary to have access to a culture in which we can socialize with others on terms that make sense to us, free of rules of conduct like having to make frequent eye contact or indulge in small talk"

i used to not even see the point of small talk, now i do small talk as i have found that it is cool to just politely tak to someone about "how are the kids doing" etc. but i had to learn the utility of it as a young adult, also i hate making eye contact, every woman i was ever with complained of this including my ex wife who said i "always looked at anything but the people i was talking to" i still dont make much if any eye contact, i try to talk with people but i dont like looking at peoples eyes because i hate it when people look at mine as i feel they are invading my personal space and privacy if they look in my eyes, hell i rarely if ever make eye contact during sex (as pretty much all of my past lovers have complained about)

i probably am just under the radar as i am functional but i still to this day smoke weed to be "on the same level" as my friends

[RainDog]

20. interesting

my son doesn't drink or smoke and has no desire to. I fully support him in this - I'm glad this isn't an issue for him. He has never taken any medication for his autism either.

he never had problems with distraction. sometimes loud noises would bother him b/c they're REALLY LOUD for him. he also didn't like light bulbs w/o a shade. I read later that, for some ppl, they isolate and see the flicker and it is distracting/bothersome.

His biggest problem is that he is too much into his own world/his own interests. This is a problem when you want to flirt with girls. He's had a girlfriend but now he doesn't. I hope he meets someone who loves him as he is - he is a sweetheart.

[reggie the dog]

21. i hope he finds someone like that

i have always been a bit wierd and my wife is leaving me because she wants someone who will have "normal" reactions..... its not like i yell or am violent, i just avoid eye contact, have empathy problems, and dont look at people when i talk to them... but like i said i have never been diagnosed so i dont know what the hell my issue is

[mmonk]

12. Exactly.

It's what all our families know.

[Book Lover]

5. As a parent to a child on the spectrum, my instinct is to simply make it better for him

If he and his peers can tell me how, I am *more than* ready to listen.

[hedgehog]

7. I maintain that there are a lot of people on the autistic spectrum

who've learned to pass by under the radar.

[reggie the dog]

10. i think i am one of them

i was horribly awkward in social situations, easily distracted by things going on in the background, i often found it hard to participate in conversations as people would mention something and i would talk about what i thought was related to what they were talking about and others just sort of look at me like it was not related or bad timing, i am fine in my role as a teacher when i can monologue for a few minutes at the beginning of each class and then have a conversation with the students but i had to learn how to have proper conversations and it seems that most people just do it naturally. i took several online autistic spectrum surveys and they said aspergers started at 32 and autism a bit higher i scored between 29 and 31 each time. my friends think i am a bit goofy and i smoke a lot of weed and when i am stoned i just sort of flow with the conversation, my ex wife just could not get used to me sort of going of on what she saw as tangents but what i saw as related. last month my friends brother who has autism was around and i was talking about what it was like to work in the usa and he started to talk about family guy and the simpsons, others at the table knew we were talking about working conditions but i saw his like was usa=american cartoons (he is 21 and in trade school in wales) so i started talking about the simpsons with him, the next day my friend said his brother was really happy to have met me because i talked TO him, i thought he had autism but i also felt to be on a similar wavelenght so i asked if he did and his brother told me yes he has mild autism. thankfully i grew up in a town where i met kids with mental or physical handicaps through mainstreaming programs where we were encouraged to talk to the kids even though they were not 100ù "normal"

[reggie the dog]

13. this quote is so close to my issues

"Growing up in New Jersey as a kid with Asperger’s syndrome, Ne’eman struggled with an inability to parse the social cues that most “neurotypical” people take for granted — such as the little smiles, ironic eye-rolling and other forms of nonverbal expression — which made him the butt of endless bullying"

i am horrible at reading non verbal cues to the point where i did not even realize when a girl was checking me out, what came natural for everyone else around me was something i had to learn at a far later age than most, after years of making an effort i do ok, i can read coy smiles on womens faces and understand what eye rolling generally means but as soon as someone takes a "non normal" tone i still misread stuff sometimes

[DirkGently]

8. Heard some about this take on autism. Who's to tell people how to think about their own condition?

[reggie the dog]

16. no one

offering a sense of community and asking them for their input as to how to best help them is a great idea, creating a sense of community was huge for deaf people when sign language was developed. some deaf people want to search for a cure to deafness while others want to simply say we are different we are deaf and we have our own culture and language, the same thing can develop for people with autism too and i see it only as a positive thing

[DirkGently]

18. Makes sense to me. And those aren't mutually exclusive views.

[KamaAina]

9. Ari's nomination was held up for months by one of those anonymous Senate holds

apparently at the behest of Autism Speaks, an organization run entirely by neurotypicals (people not on the autism spectrum), and without even any people with autism on its board (as Temple Grandin has been on the Autism Society of America's board for years).

Ari's appointment finally went through just about the time Sen. McCaskill started making noise about ending the practice of anonymous holds. Coincidence? I think not.

And yes, I think I figured out who the culprit was: several Autism Speaks board members donated to him, although they do not live in his state. It wasn't enough, though, because he lost his first Dem primary. :evilgrin:

[reggie the dog]

17. i have never been diagnosed

but i have many of the symptoms of this syndrome, clumsiness, couldnt read social cues, lack eye contact, little empathy even for my brother or sister, i had to work on all of them, mdma actually helped me with empathy because i felt empathy under the influence of the drug and then remembered that feeling and applied to to family members etc,

[mzmolly]

22. He has a great

perspective. K and R.