Changing Face of Autism: Numbers Rise as More Behaviors Included

The "triggers" that the CDC includes in its statistics are so broad that children like Arik with symptoms some call "autism lite" are now included. At 6, he is in an inclusive first-grade classroom with extra help for speech therapy and social skills training.

'Follow Your Instincts'

Today, Arik has made friends and is doing well academically, but his mother said the road to help was rocky.

"For two years, we jumped through crazy hoops and they didn't know where to send us," said Dahlen, whose son did not exhibit the classic symptoms of autism.

Before his diagnosis, doctors told Dahlen, "he would never go to college, was a menace to society and would end up on drugs," according to his mother. "Every step of the way, I listened to my instincts, rather than the doctors."

Yeargin-Allsopp of the CDC hopes that new screening will provide doctors with the tools to do a better job. But, she said, "there has to be a balance."

"We don't want to miss children who have the potential for serious problems," she said. "One the other hand, we don't want to unduly alarm parents when there is no cause for concern."

Autism advocates — while well-intentioned — cull more research dollars. "I won't say it takes away from other disorders, but [they] somehow influence Congress and have a better opportunity to see that their interests are funded," she said.

Michael Noetzel, neurologist-in-chief at St. Louis Children's Hospital in Missouri, said even though incidences of childhood seizures and epilepsy are higher, attention to autism is long overdue.

This new focus on autism could have a positive impact on public policy and research dollars in other neurological disorders and normal brain development.

Public awareness has taken away the stigma, said Noetzel. "In my practice, autism has gone from a diagnosis families wanted to avoid and didn't want to talk about to somewhat of a relief."

New screening and proper diagnosis — if it is useful in helping the child — is a good thing, he said. But overdiagnosis can "make things not better, but worse" for children, he said.

Can Statistics Lie?

"Society has a role to lessen impact of disability," said Noetzel. "The kid who didn't fit in and was a little odd — now we are saying he has a disability."

"The million-dollar question is, are we making their lives better?" he said. "I don't think we have that information."

Dr. Jerold F. Lucey, editor of Pediatrics magazine, and on the faculty at University of Vermont College of Medicine, said he believes the CDC numbers are high.

"It used to be with a lot of children you didn't know what was wrong with them," said Lucey. "Some were good at school and others were slow," he said. "Society doesn't want to accept such children, and they turn it into a disease."

Still, the Autism Society of America estimates that CDC statistics are low. They say the condition affects 1.5 million Americans at a cost of $35 billion annually.

"The public awareness awareness campaign is warranted and should be heightened," said Marguerite Colston, the society's communications director. "There are more kids with it, even when you account for better diagnostics."

Colston, of Bethesda, Md., has firsthand experience. Her 7-year-old son Camden was diagnosed at the age of 4, but she noticed symptoms at just 6 months.

Camden would not look at his mother or babble or play patty-cake. He didn't walk until he was 3 years old and is still nonverbal.

Colston believes early screening would have made the difference in her own child's outcome.

"There is no cure, but we have a better shot at managing the symptoms and dramatically improving lives," said Colston.

"The hardest thing is the fatigue factor," she said. "Getting them to communicate takes so much energy. Every day there is a new challenge. There's a lot of hope, but it's hard finding that light of hope."

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