Changing Face of Autism: Numbers Rise as More Behaviors Included

Nov. 1, 2007 — -- At the age of 2, Arik Dahlen would first greet a new playmate with an intense stare. Then he would push the child over.

His mother, Kari Dahlen of Lafayette, Calif., noticed other odd behaviors, including language delay, so she spoke to her pediatrician.

"The doctor initially dismissed it," said Dahlen, but a year later Arik unexplainably got on all fours on the examining room floor and began meowing loudly like a cat.

"Suddenly the doctor was overexcited and said, 'Why didn't you talk to me about this earlier?'" said Dahlen. "Clearly this was not normal for a child."

Arik was later diagnosed with PDD-NOS (pervasive development delay, not otherwise specified), a milder form of autism that is grouped among a wide swath of autistic behaviors.

For decades, the incidence of autism in the United States was considered to be about 1 in 2,000 children, according to the Centers for Disease Control and Prevention. Now, using improved methodology, the incidence is believed to be about 1 in 150, a statistic that is even higher for boys — 1 in 94.

Early Diagnosis Key

"This is a major public health problem, but we are not using the term epidemic," said Marshalyn Yeargin-Allsopp, a CDC pediatrician.

Now a debate is raging over whether the apparent spike in autism is a result of more cases or the inclusion of less severe behaviors like Arik's.

Some doctors say autism advocates have over-reacted, creating new medical pathologies for milder cases of social awkwardness that were once considered a variation of normal.

Nevertheless, medical experts agree that more and early diagnoses are leading to better care for those affected.

This week, the American Academy of Pediatrics released two new reports to help pediatricians recognize autism. Intervention before the age of 3 can dramatically change outcomes, they say.

"Autism definitely makes the list of many parents' top anxieties," said Rebecca Odes, author of "From the Hips" and parent advice columnist for babble.com.

"Parents are left watching and waiting to find out if their child develops any of the symptoms," said Odes. "Many of the warning signs of autism are also common in babies who don't have autism."

Autism is defined by significant impairments in social interaction and communication. Many children have unusual ways of learning, paying attention or reacting to different sensations. Children can range from gifted to severely challenged, according to the Florida State University Center for Autism and Related Disabilities.

The statistics on autism can be misleading when comparing earlier studies in the late 1980s and 1990s, a time when different diagnostic criteria was used, Yeargin-Allsoppa noted.

Now, the CDC uses "active surveillance," rather than just receiving reports, and consistent rubrics to count children.

To put autism in perspective, about half the number of children diagnosed with autism — three in 1,000 — have cerebral palsy. One in 800 has Down syndrome; only 1 in 1,000 has hearing or vision loss. But 9.7 in 1,000 are diagnosed with mental retardation.

Overall, a staggering 17 percent of all children are affected by a large group of learning disabilities, including autistic behaviors. "The impact of this is huge," said Yeargin-Allsoppa.

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."