January 26, 2014

People with Asperger’s syndrome want a place in society

“We may appear differently,” said David Barnes, of Haltom City. “Don’t look at the difference as a bad thing. Look at it as a positive.”

Each month about 25 of them come to this converted house on Glenview Drive. Some have wounded souls, having made their way in a world where people often misunderstand them.

They tend to avoid eye contact and some social situations because these things make them uncomfortable. They have been called aloof, rude, self-absorbed and know-it-alls even though most are warm, caring and thoughtful people.

The number of people with Asperger’s syndrome — a high-functioning form of autism — is growing in the United States to a point that they can no longer be ignored. Many are raising their voices that just because they lack some social graces, they should not be shoved aside from mainstream America.

Until they can persuade more of the public to have a broader viewpoint about what is normal, they must often explain what they’re about. They draw comfort from celebrities, such as actress Daryl Hannah, actor Dan Aykroyd and more recently British singer Susan Boyle, who have acknowledged that they have an autism spectrum disorder.

“We may appear differently,” said David Barnes, 28, of Haltom City. “Don’t look at the difference as a bad thing. Look at it as a positive.”

Daniel Durany, 30, of Fort Worth, who speaks about Asperger’s statewide, said employers may not reach their full potential if they discriminate against those with autism spectrum disorders.

“I think people need to really understand that people with Asperger are very, very skilled,” said Durany, whose Asperger’s was diagnosed when he was 25. “Companies need to have an open and broader view because autism is growing.”

They come to the Families for Effective Autism Treatment-North Texas center because they can get support and answers to their issues. FEAT-NT was founded in 1995 and opened its current headquarters on Glenview Drive in 2009.

Over the years, members of the private nonprofit agency have provided information and support to parents and have reached out to the public about autism and the most effective ways to teach children with autism. They also opened a library with more than 600 books on autism and related disorders. And they formed support groups for parents, adults and adolescents with Asperger’s and “classic autism,” a more severe and better-known form of autism.

The agency relies primarily on donations and grants to function. The group needs to raise about $125,000 a year to run smoothly, board member Laurie Snyder of Fort Worth said.

“We’re all volunteers,” Snyder said. “We’re all parents of children with autism.”

Autism disorders are a group of disabilities that can cause significant social, communication and behavioral challenges. People with these disabilities handle information in their brain differently from other people and can have language delays, according to the federal Centers for Disease Control and Prevention in Atlanta.

As of 2008, about 1 in 88 children had been identified with autism spectrum disorder across all racial, ethnic and income groups, according to the CDC. That’s an increase from 1 in 150 children in 2002. Boys are almost five times more likely to have the disorder than are girls.

Contributing factors

Several factors can cause autism, according to the CDC. Most scientists believe that genes are a factor. Children who have a parent or sibling with an autism disorder are more likely to have the disorder themselves. When taken during pregnancy, the prescription drugs valproic acid and thalidomide have been linked to a higher risk of autism or a related disorder.

Snyder attributes the increase in incidence to genes and environmental factors. “I agree that it’s not just better diagnosis,” Snyder said.

There is hope. Some parents have seen progress to the point that their children are nearly typical. Snyder’s son was born with moderate to severe autism and did not speak until age 3. At 13, he is fully conversational, though other social skills have been delayed.

“It took thousands of hours of therapy over the course of his childhood, and he had to work very hard to get himself to that place,” she said. “And that’s what it takes: very early detection and intense intervention.”

Asperger’s syndrome can be puzzling. Those with the condition often do well academically, but social relations are a challenge.

“We have a difficult time seeing things from other people’s perspective,” said Steven Barnes, 35, a software engineer from Haltom City. “Everything seems normal to us, then we get these strange reactions from people, and we don’t really know why. It’s not that we can’t pick up on the social cues; it’s that we have to work really hard at it.”

‘Full and equal citizens’

Some people with the syndrome and advocacy groups are challenging the discrimination that many of them face, likening their struggle to those who fought for civil rights. The Washington, D.C.-based Autistic Self Advocacy Network promotes legislation, jobs and leadership programs, and speaks out in the media to the benefit of people with autism or related disorders. The group was founded in 2006 and continues to be run by autistic people.

“We’re part of the civil-rights movement; we’re part of the disability-rights movement as well,” network President Ari Ne’eman said. “We think that those things go together.”

The network leadership includes a group of accomplished Americans who have excelled in technological, educational and artistic fields and have earned degrees from Carnegie Mellon University, Johns Hopkins University and Harvard Law School. The group believes that autistic people should be welcomed into all fields in addition to technological careers.

“We’re looking to be viewed as full and equal citizens of this society, as people who are not broken or in need of being fixed or cured,” Ne’eman said, adding that some may need support.

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