Controversial New Movement
Controversial New Movement: Autistic and Proud
Activists Say Stop Looking for a Cure and Accept Autistic People as
By DEBORAH ROBERTS, MICHELLE MAJOR and JONANN BRADY
June 10, 2008
Ari Ne’eman and Kristina Chew say they are the faces and voices of
They’re part of a controversial group hoping to radically change the
way others look at autism. Their message: Stop the search for a cure
and begin celebrating autistic people for their differences. It’s a
message that has some parents of autistic children bewildered and angry.
Ne’eman, 20, is the founder of the Autistic Self Advocacy Network, a
non-profit group aimed at advancing autism culture and advocating for
"We believe that the autism spectrum and those on it, are important
and necessary parts of the wide diversity present in human genetics,”
Ne-eman says on the ASAN Web site.
Ne’eman was diagnosed with Asperger’s syndrome, a less severe form of
autism, as a child.
"I think the others around me knew I was different from as early as I
can remember,” he told “Good Morning America.”
When Ne’eman says that looking for a cure for autism is the wrong
approach to take, he understands why some parents are upset —
especially those with very low-functioning, non-communicative
"I think that one of the key issues to remember is that anti-cure
doesn’t mean anti-progress,” he said.
'Ransom' Ad Sparks Action
Kristina Chew, a professor at St. Peter’s College in New Jersey, is
one of the growing number of parents involved the movement.
When her son, Charlie, was diagnosed with severe autism, Chew said,
"I was completely in a gulf. I didn’t believe it for months."
Chew now believes that autism treatments and so-called cures are a
waste of time. She said she’d rather see Charlie, now 11, benefit
from better support services and education.
"My son is who he is. He’s not going to change; he’s always going to
be Charlie. And at the same time, I loved him just for what he was,”
Parents like Chew and autistic adults like Ne’eman joined forces
several months ago, after seeing an edgy new campaign to fight autism
from the New York University Child Study Center that implied children
with autism are held hostage by the disorder.
The NYU Child Study Center says the ads were about creating
awareness, but Ne’eman says that instead, the ads reinforce
prejudices about people with autism.
"Where does disability come from? It comes, in many respects, from a
society that doesn’t provide for an education system that meets our
needs. From people who often discriminate or bully or even injure us,
and from a society that is largely intolerant,” Ne’eman said.
Ne’eman and his supporters protested so loudly, that the ads were
cancelled three weeks after they were released.
Wouldn’t Change Diagnosis
Many parents of autistic children say that Ne’eman and his group’s
views don’t reflect their reality and should essentially be ignored.
Lenny Shaffer, a writer with an autistic son, says of the movement,
"You’re a handful of noisy people who get a lot of media attention,
but you don’t represent a broad swath of the autism community.”
Ne’eman believes history is on his side.
"I can’t think of the civil rights movement throughout history that
hasn’t been faced with resistance and misunderstanding on the part of
its detractors,” he said.
And the young activist says if he could go back and change his
Asperger’s diagnosis, he wouldn’t.
"If there was a magic pill that would make me neurologically typical,
normal, I wouldn’t take it,” Ne’eman said.
But a number of experts say his path might not be the answer for many
others dealing with autism.
"You have to remember that this is a spectrum and you’ve got people
who are quite high functioning and then you’ve got people who can’t
even begin to function and for whom we would love to have a cure to
at least get them to a point where they would be able to function as
well as the people in this movement,” said Dr. Thomas Insel, from the
National Institute of Mental Health.
But Kristina Chew also said she wouldn’t change her severely autistic
son Charlie if she could.
"We really try and understand him on his own terms," she said.
That is her advice for parents dealing with a child’s autism
diagnosis and feeling hopeless.
"Acceptance, to me, is the beginning of hope," Chew said. "I look at
my son, even on the days, the most terrible, terrible days. I still
knew that I love my son. That he was with us, and that he would be
with us, and that the hope was really in him.”
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