Controversial New Movement: Autistic and Proud
Activists Say Stop Looking for a Cure and Accept Autistic People as They Are
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 autism's future.
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 "neurodiverse" individuals.
"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 autistic children.
"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," Chew said.
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."