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aneeman
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17 May 2009, 1:29 am

http://www.newsweek.com/id/197813


Erasing Autism
Scientists are closing in on the genes linked to autism. So why is Ari Ne'eman so worried?

Claudia Kalb
NEWSWEEK
From the magazine issue dated May 25, 2009
It's spring in Washington, and Ari Ne'eman, with his navy suit and leather brief-case on wheels, is in between his usual flurry of meetings. Ne'eman is a master networker, a guy you'd think was born in a campaign office and bred in the halls of the Capitol. He's fluent in policy-speak and interacts seamlessly with high-level officials (he's just had lunch with the acting vice chair of the Equal Employment Opportunity Commission) and inquisitive reporters alike. He's formal but sociable and has a well-timed sense of humor. He also has a problem with velvet. I knew this about Ne'eman—he'd mentioned it when we first started talking more than a year ago—but now, in a D.C. coffee shop, he gets into the sensory details. His father used to drive a car that had fuzzy velvet-like cushioning, and it made Ne'eman crazy to sit in it. "I'd wince because I'd think about how it would feel to get that under your fingernails," he says. I think I see him shudder at the memory.

Ari Ne'eman is 21 years old and has Asperger syndrome, a high-functioning diag-nosis on the wide-ranging autism spectrum. Ne'eman's velvet aversion is triggered somewhere deep in his brain, a brain that he happens to relish. He doesn't want anybody to mess with or, God forbid, cure his Asperger's. It's who he is, who he's always been. It's why he's had ob-sessive interests since toddlerhood. At 2½, he saw a dinosaur skeleton at New York's American Museum of Natural History and announced, "That's a pterodactyl." From there he fixated on baseball, reciting players' names and stats ad nauseam, whether or not anyone was listening—a behavior experts call perseveration. Later it was constitutional law. His friend Ben DeMarzo remembers driving with Ne'eman and two other classmates one high-school weekend. DeMarzo and the others wanted to listen to music—the Beatles were a favorite—but Ne'eman had other plans. "Ari made us listen to Supreme Court oral arguments. It was brutal," DeMarzo tells me. He was outnumbered—how'd he win? I ask. DeMarzo laughs. "Ari always wins," he says.

He certainly puts up a fight. Ne'eman is officially studying political science at the University of Maryland, Baltimore County, but he also runs the Autistic Self-Advocacy Network, a nonprofit he founded in 2006, the year after he graduated from high school. The task he has taken on is daunting and controversial: he wants to change the way the world views autism. Autism is not a medical mystery that needs solving, he argues. It's a disability, yes, but it's also a different way of being, and "neurodiversity" should be accepted by society. Autistic people (he prefers this wording to "people with autism," a term many parents use, because he considers the condition intrinsic to a person's makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to. "We're having a nation-al conversation about autism without the voices of people who should be at the center of that conversation," he says.

Ne'eman's network has local chapters in 15 states, and he works closely with organizations like the EEOC and the American Association of People With Disabilities. Neurodiversity activists see their mission as a fight for civil rights, and Ne'eman and others are willing to stir un-rest. "Ari's very straightforward," says Lee Grossman, head of the Autism Society of America, who supports many of Ne'eman's efforts. "He tells it like it is from his perspective." Ne'eman has taken on powerful organizations, specifically Autism Speaks, the largest science and advocacy group in the country, be-cause he believes they rely on fearful stereotypes and focus their research too heavily on what causes autism as opposed to improving quality of life for autistic people today. Last year he helped stop an edgy "ransom notes" ad campaign created by New York University's Child Study Center to raise awareness about autism. One said, "We have your son" and are "driving him into a life of complete isolation." It was signed "Asperger Syndrome." Ne'eman was appalled. "There's a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place," he says. "That's not true."

The autism spectrum itself, however, is a universe with multiple galaxies, including nonverbal toddlers who bite themselves and college grads who can't tell the differ-ence between sarcasm and seriousness. This complexity leads to passionate and conflicting viewpoints. Not everybody stands behind Ne'eman, and some adamantly op-pose his views. One major area of contention: scientific research, which includes the hunt for autism genes.

I knew Ne'eman had a surprising outlook on this and figured he'd have something to say about the recent news that scientists have found common gene variants that may account for up to 15 percent of all autism cases. This is big in a disorder that varies so enormously from one individual to the next. Environmental factors also play a role, but if scientists can test for specific genes—most of which have yet to be discovered—they may be able to intervene much sooner to help kids. One day they might even find a cure. This is exciting for parents who want to understand the roots of the disorder. Therapies—some helpful, some shams—vie for their attention and their pocketbooks, and they'd welcome better, more targeted treatments. But the new genetic advances concern Ne'eman. He doesn't believe autism can be, or should be, cured. His ultimate fear is this: a prenatal test for autism, leading to "eugenic elimination." If a test is developed one day, it will be used, he says. And that means people like him might cease to exist.

When I press Ne'eman on genetic research—doesn't it have some merit?—he says he doesn't oppose it outright, but he believes scientists must consider the ethical implications of their work far more carefully. Already couples are testing embryos for diseases like Huntington's, then choosing to implant only the healthy ones. And who can blame them? But autism isn't a fatal condition. Should people without the disorder be allowed to judge the quality of life of someone who has it? "That is a message that the world doesn't want us here," says Ne'eman, "and it devalues our lives."

The prospect of no more Ari Ne'emans—whether you agree with him or not—is haunting. Termination of fetuses with Down syndrome is routine today; given the fear that autism inspires in parents, why wouldn't it follow? And what would our world be like without autism? The vast differences among individuals on the spectrum make the notion even thornier: will parents start demanding to know whether their fetus will be low- or high-functioning? But it's also impossible to ignore the parents who say they'd do anything to free their children from isolation and pain. Some feel so hopeless so much of the time, they do wonder in private if their children would have been better off not born. And who can blame them?

Ne'eman battles a strange kind of image problem: his critics accuse him of not really being autistic. His mother, Rina, is particularly sensitive about this. "People who see Ari today have no idea where he's been," she says. As a young child, Ne'eman was verbally precocious but socially challenged. "I didn't understand the people around me, and they didn't understand me," he says. He was bullied and ostracized—back then he didn't look at people; he flapped his hands and paced incessantly (he still does both today); he brought newspapers to elementary school as leisure reading. "I think the word 'freak' may have come up," he says. He was, at one point, segregated from his peers in a special-ed school. That led to struggles with depression and anxiety so severe he would pick at his face until it bled. I asked Ne'eman how he manages all the professional mingling he does today. Small talk makes him uncomfortable, but he's learned to play along. Still, none of it is easy. "You come out of a meeting and you've put on a mask, which involves looking people in the eye, using certain mannerisms, certain phrases," he says. "Even if you learn to do it in a very seamless sort of way, you're still putting on an act. It's a very ex-hausting act."

He remembers being taught in social-skills training that when people are happy they smile with all their teeth, and when they're sad they wear exaggerated frowns. "I was always wondering, 'Why is everybody around me neither happy or sad? They don't have emotions'," he says. When you're autistic, social interaction can be like a foreign language: no matter how fluent you become, you're never a native speaker. Katie Miller, a fellow activist, jokes that "Ari is the only autistic we know whose special interest and talent lies in networking." But, she says, "it didn't come naturally. He's learned it the way every-body else learns algebra." Ne'eman has a way of taming the stress he feels: he wears a tie because it puts a soothing pressure on his neck. "It's a good way of calming my anxiety," he says.

One of Ne'eman's latest efforts is a new public-service announcement called "No Myths," which he helped create with the Dan Marino Foundation, a funder of autism research. In it, Ne'eman appears in a red sweater and tie along with others on the spectrum, including a man who speaks through a communication device. "Our futures have not been stolen," Ne'eman says. "Our lives are not tragedies." The message is clear: We stand before you. Don't make us go away.

URL: http://www.newsweek.com/id/197813



Tahitiii
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17 May 2009, 2:05 am

I've heard of him, but I didn't check the details.
I think I have a new hero.



outlier
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17 May 2009, 11:04 am

aneeman wrote:
The task he has taken on is daunting and controversial: he wants to change the way the world views autism.


This is something that truly needs to be done, on so many levels.

aneeman wrote:
"That is a message that the world doesn't want us here," says Ne'eman, "and it devalues our lives."


True. That message has always been implicit; now it's explicit.

aneeman wrote:
[...] his critics accuse him of not really being autistic.


I'm getting really tired of critics of an opposing viewpoint doing this. It's sick.



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17 May 2009, 11:49 am

outlier wrote:
aneeman wrote:
[...] his critics accuse him of not really being autistic.


I'm getting really tired of critics of an opposing viewpoint doing this. It's sick.


For these purposes, they'll say he isn't autistic. On the other hand, they will be more than happy to count him, and others like him, when they are trying to raise money: 1 in 150 certainly includes Ari Ne'eman and the many other high functioning, well-spoken autistics that their critics are so fond of dismissing when it suits their purposes. If, however, they had to discount them in the statistics, they would be back to numbers that were far less compelling than the 1 in 150 that is so useful in their fundraising efforts. The hypocrisy of counting them for one purpose and refusing to acknowledge them for another is overwhelming.



aneeman
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18 May 2009, 5:48 am

jat wrote:
outlier wrote:
aneeman wrote:
[...] his critics accuse him of not really being autistic.


I'm getting really tired of critics of an opposing viewpoint doing this. It's sick.


For these purposes, they'll say he isn't autistic. On the other hand, they will be more than happy to count him, and others like him, when they are trying to raise money: 1 in 150 certainly includes Ari Ne'eman and the many other high functioning, well-spoken autistics that their critics are so fond of dismissing when it suits their purposes. If, however, they had to discount them in the statistics, they would be back to numbers that were far less compelling than the 1 in 150 that is so useful in their fundraising efforts. The hypocrisy of counting them for one purpose and refusing to acknowledge them for another is overwhelming.


[email protected]

Something along those lines would make a PERFECT letter.



jat
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18 May 2009, 7:18 am

aneeman wrote:
Something along those lines would make a PERFECT letter.


Done.



GoddessofSnowandIce
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18 May 2009, 12:37 pm

It all comes back to benign traits being treated as malignancies purely because they differ from the norm, not necessarily because they are harmful. It is akin to the person who dares to wear white shoes after Labor Day, or the person who lives in TN who doesn't care for country music. While I acknowledge that it's easier to notice the things that are different about a person, humanity is often unable to see the things that are similar because of their preoccupation with "oddity". In this, they forget that we too are human beings, and that is from where I think that the strength behind their anti-autistic crusade has come.

I would hope, as we've moved forward in such things as the closing of the racism gap, that NTs would be able to apply the same consideration towards understanding what is different about us for mutual benefit. Like the amount of melanin in one's skin, one cannot control the direction and number of connections between the different sectors of the brain. Just because one trait is (perceptibly) more desireable does not mean that one is more "right" than the other. As we are finding out, through the proliferation of the various genes that carry the tendancy towards autistic symptoms in our gene pool, evolution will decide what traits should continue to exist. We have a place-- it's just that the people crying for cures haven't learned to hear us on just what that place might be for each of us.


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19 May 2009, 3:36 am

Mr. Ne'eman, thank you for bringing a sensible viewpoint to the discussion. Too often, when people oppose eugenic pro-cure policies they end up going off the deep end into some wacky form of Aspie supremacism. I'm glad that there is a national voice that acknowledges the difficulties autistics face while still pushing for our right to live in and be a part of society. It's a much more balanced way of looking at the issue.


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lz1982
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21 May 2009, 8:40 pm

[quote]For these purposes, they'll say he isn't autistic. On the other hand, they will be more than happy to count him, and others like him, when they are trying to raise money: 1 in 150 certainly includes Ari Ne'eman and the many other high functioning, well-spoken autistics that their critics are so fond of dismissing when it suits their purposes. If, however, they had to discount them in the statistics, they would be back to numbers that were far less compelling than the 1 in 150 that is so useful in their fundraising efforts. The hypocrisy of counting them for one purpose and refusing to acknowledge them for another is overwhelming.[/quote]

Yes, exactly. And when the alarmists tell us that cases of autism have increased steeply in recent years, they don't mention that Asperger's wasn't even added to the DSM until 1994. Of course there will be more autistic people when the definition of autism is expanded.



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21 May 2009, 9:20 pm

Back in 1985 the rate of autism was .4 or .5 per 1000 people. In 1985 the criteria for autism was only the most severe cases known as infantile autism. Infantile autism was not a spectrum disorder, rather it was considered to be only the most severe cases of autism, low functioning.

Modern understanding has expanded the spectrum to be inclusive of HFA, PDD-NOS (a diagnosis frequently used for Semantic-Pragmatic disorder, Severe NLD, and other such atypical manifestations), and Asperger syndrome.

It is not that autism has increased, it is the criteria went from being very narrow, to expand as there is a better understanding. Also the prevaliance of kids with autistic features from 2 on has nothing to do with vaccines, it is that AS and other forms of atypical autism do not manifest till after two. The report where these numbers come from state that the numbers are high as they are because of Asperger Syndrome and Atypical Autism (PDD-NOS). The numbers for severe autism have not changed...it is the fact that now AS and Atypical Autism is in the DSM more people are being diagnosed who do not demonstrate severe features. Basically , MOST of the people in the report either fall under PDD-NOS or AS. PDD-NOS is most commonly used for variations with AS or HFA traits, think Semantic-Pragmatic Disorder and Nonverbal Learning Disorder. Basically the diagnostic pickle is the 1 in 150, is mostly coming from people with AS, SPD, HFA, or NLD. NOT severe cases of autism, but rather medium to high functioning cases, often atypical or AS.

The conundrum for the pro-cure people is the fact the very people who they claim are "not autistic" are the people who make up a vast majority of the people who are autistic under the DSM-IV. Basically, the pro-cure people are dismiss the reality and fail to accept it. Because underneath the cure is a dirty little secret. If you cure people you are depriving the world of some of its brightest minds.



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27 May 2009, 3:26 am

I love that article. Maybe my favorite autism article ever.

I also think the pro-cure people want it both ways. The hfa, aspie folks aren't REALLY autistic, and there is a huge increase in the nos. of autistic people. Well without high functioning folks there probably isn't an increase at all (well maybe some, after all a lot of lower functioning kids were dxed as having mental retardation, childhood schizophrenia, etc.) but that was still maybe 20 years ago. (Yes, I am that old! Yikes!!)

Anyway I am tired of them and the anti-vaccine group who might succeed in bringing back polio (already brought back whooping cough). (Maybe some of the same folks.)

--des



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30 May 2009, 6:20 pm

He seems to be coping very well with his autism. His mother could have declared that she cured him and then she could have created another Religion of the Cure and had a bunch of maniacal gullible parents following her around at cure revival meetings.

What a great mom and a great guy.


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