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.

New test to spot autism at 9 months of age on the horizon

Washington, May 21 : An early diagnostic test for autism is on the horizon, thanks to researchers at McMaster University, who are developing a new test for detecting autism as early as nine months of age.

The Early Autism Study, led by Mel Rutherford, associate professor of psychology in the Faculty of Science, has been using eye tracker technology that measures eye direction while the babies look at faces, eyes, and bouncing balls on a computer screen.

"What's important about this study is that now we can distinguish between a group of siblings with autism from a group with no autism - at nine months and 12 months," said Rutherford.

"I can do this in 10 minutes, and it is objective, meaning that the only measure is eye direction; it's not influenced by a clinician's report or by intuition.

Nobody's been able to distinguish between these groups at so early an age," she added.

Currently, the earliest diagnostic test for autism is reliable around the age of two, and most children in Ontario are diagnosed around age three or four.

The earlier the diagnosis the better the overall prognosis, said Rutherford.

"There is an urgent need for a quick, reliable and objective screening tool to aid in diagnosing autism much earlier than is presently possible," she said.

"Developing a tool for the early detection of autism would have profound effects on people with autism, their parents, family members, and future generations of those at risk of developing autism," she added.

Rutherford presented her peer-reviewed research at the 7th Annual International Meeting for Autism Research in London.

Autism program helps parents, officials and children to deal with emergency situations

By AARON SANBORN
asanborn@fosters.com
Article Date: Friday, June 6, 2008

DOVER — It's a scenario that every parent of child with autism dreads.

Suddenly you're involved in some sort of accident, and your child is alone and confused and could be easily startled by the presence of emergency personnel.

It's a scenario that many in the community with autistic children are beginning to prepare for.

Six area families, including four from Dover, signed up for the Easter Seals Autism Awareness 911 program during an open house last Thursday night outside of the McConnell Center. The program allows for parents to fill out a profile of their child, which is then forwarded to the city or local dispatch centers so those homes with autistic children can be flagged for police, fire and emergency personnel.

Information also is forwarded to New Hampshire 911 to flag the phone number.

During Thursday's event, several autistic children had a chance to interact with firefighters and police officers, along with some of their equipment and apparatus.

Dover resident Marie Berman said the event was the perfect opportunity to familiarize her 6-year-old daughter with firefighters and their equipment.

"It's good for her to learn that if she is in danger, these are the people that can help," Berman said.

Berman's daughter has sensory issues and gets scared by loud noises and crowded places. Berman said it's good for her to be around the fire trucks and police cars, so she could hear the sirens.

"It helps her to not be afraid," Berman said.

Elizabeth Webster, who founded the program with her partner Dawn Brady, said the two have worked with police in Manchester and Concord. They hope to spread the program throughout the state.

The next autism event is scheduled for Saturday, Sept. 13 from 3:30 p.m. to 5:30 p.m. at the McConnell Center.