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posted Sunday, 17 May 2009
Erasing Autism

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

By Claudia Kalb | NEWSWEEK

Illustration by Brian Cronin for Newsweek
It’s spring in Washington, and Ari Ne’e-man, 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 national 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



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