In Search of the Autism Answer

Autism in America: How proper diagnosis eludes many families.

ByABC News
October 30, 2008, 5:27 PM

Nov. 3, 2008 -- Growing up in Yonkers N.Y., Jason Ross was always diagnosed with something.

The diagnoses began with speech delay, followed by attention deficit disorder. Next was "psychosis not otherwise specified." Obsessive compulsive disorder also joined the ranks.

Finally, at age 25, Ross was diagnosed with high-functioning Asperger syndrome.

In the years before his diagnosis, Lois Ross, Jason's mother, says his condition confounded every medical expert they saw.

"We were told for a brief time he was schizophrenic," she says. "You'd say, 'Do you hear voices?' and he'd say, 'Yes' ... It took three or four years until he got that the question was, 'Is it in your mind, or is it other people on the street?'"

Without the proper diagnosis, doctors originally predicted that he would never be able to finish a real high school curriculum. Despite this, however, he eventually graduated and attained a bachelor's degree. Ross, now 29, works as a cardiovascular technician.

Living in a time when attention deficit disorder was in the popular media and autism was rarely heard of, Lois became a dogged activist in helping her son, whatever he had. She even became a social worker to help developmentally disabled people.

It was a few years ago, when Lois started working with people on the autism spectrum, that it hit her.

"I started working with a 13-year-old boy who was diagnosed with Asperger's and I kept coming home and telling my husband, 'I'm working with Jason!'"

The similarities between her son's behavior and the teenager's -- the social naïveté and a lack of interpersonal skills, laughing at the wrong time -- made her seek an expert in New York City.

Suddenly, after the diagnosis, Jason's echolalia, his obsession with a single subject, his aversion to other people's touch -- everything that didn't fit before fit with the autism diagnosis and made sense.

Hear Jason Ross tell his story.

As devastating as an autism diagnosis can be, for many families it is an important first step in dealing with a child's condition. And often it comes as a complete surprise.

In Barbara Ahrens' case, she wasn't expecting to come across a life-changing revelation when she took a trip with her toddler to the local children's entertainment franchise Discovery Zone.

"There weren't any other children around for me to compare him to," says Ahrens, a new mom whose only other relations to children were nieces and nephews who were much older than her own child.

But when she watched 1-year-old Matthew play side-by-side with other toddlers that day in 1998, Ahrens noticed a difference.

"His mannerisms ... it just wasn't the way the other children acted," says Ahrens.

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Matthew didn't talk, smile, or laugh as much as other children. Nor did he seem to care whether anyone played with him.