Monday, March 3, 2003

Autism caseload growing quickly

Definition could be the reason

By Lindsey Tanner
The Associated Press

CHICAGO - Mention autism to parents, doctors and scientists these days, and among an earful of different theories will emerge a common nod of agreement: The perplexing condition is not nearly as rare as once was thought.

Stevie Fuller, 10, of Anderson Township claps his hands - a characteristic of many with autism.
(Michael E. Keating photo)
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As recently as a decade ago it was estimated that only about 4 per 10,000 children were affected. Research now suggests the rate may be at least 10 times higher.

The numbers have fueled debates over whether there's been a true surge of cases and whether environment or genetics could be the cause. Some parents and research advocates blame vaccines despite recent evidence to the contrary.

But many mainstream scientists point to two much less worrisome explanations: The definition for autism has changed and schools now offer more educational services to autistic children.

In 1991, the U.S. Department of Education made autism a new, separate category for special education services offered at public schools.

Those services tend to be broader and more intensive than for other disorders, including mental retardation. There's evidence that the 1991 change prompted what some call "diagnostic substitution," said Dr. Fred Volkmar, a Yale University autism researcher.

"Autism is kind of a fashionable diagnosis," Volkmar said. "Everybody's interested in getting better services."

  For more information about autism research:
• NIH:
• NIH research:
• National Alliance for Autism Research:

Statistics seem to back up the theory. Department of Education figures show that the number of children getting services for mental retardation fell from 553,262 in 1991-92 to 532,362 in 1992-93. During those same years the number of children getting services for autism swelled from 5,415 to 15,580.

The change in school services and the definition, along with research showing that early intervention could help, raised awareness of the condition.

Drew Filak, 14 (right) volunteers as a play therapy companion to Stevie.
(Michael E. Keating photo)
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Autism used to be thought of as "the kid who sits in a corner watching the record player go around and around. Everybody said that's what autistic is and anything else is not," said Chicago pediatrician Dr. Joel Schwab.

Schwab said that like many doctors, he may have inadvertently diagnosed autistic youngsters a decade ago as being mentally retarded, or with nondescript behavior problems.

Now, autism is increasingly recognized as "being more than just the classic picture," said Schwab.

Dr. Patty Manning-Courtney attributes the increase in autism to "all of the above, probably."

"There aren't really good data to say one way or another what's causing the increase," said Manning-Courtney, a developmental pediatrician specializing in autism with the Kelly O'Leary Center for Autism Spectrum Disorders at Cincinnati Children's Hospital Medical Center.

"There's no question that we've broadened the definition of autism. There's no question that we're including more high-functioning children than we did 10 years ago. There's no question that doctors are catching it more often.

"By the same token, there's also no question that we're seeing more kids, and the evidence from that comes more loosely from agencies serving kids, schools, county MR/DDs and clinics like mine,'' Manning-Courtney said.

"There's an increase in volume and the volume includes kids with classic autism symptoms, and schools and other agencies who serve kids with disabilities are feeling the increase."

Manning-Courtney's center diagnoses more than 100 new cases of autism a year, and about half of the center's 1,600 client families are affected by autism.

The increase worries Nancy Fuller, whose 10-year-old son, Stevie, is autistic. Fuller and her husband, David, are advocates for children with autism and their families. Stevie was diagnosed with autism in 1995.

"It's a little bit scary to see the increase," the Anderson Township woman said. "It seems as though we're seeing more kids with higher levels of autism now who need more services."

In Anderson Township alone, the Fullers know of five other families whose children are active in the same autistic program as Stevie, Nancy Fuller said.

Like Manning-Courtney, Fuller doesn't believe broadening the definition of autism to include higher-functioning children accounts for the entire increase.

"I just don't think they've expanded the definition of autism enough to add up to that increase," Fuller said. "There are parents who want the diagnosis so they can get services, but I meet just as many parents who don't want the label because they're afraid it will stigmatize the child."

Questions remain

Autism has raised deep questions ever since psychiatrist Leo Kanner first described it as a distinct developmental disorder in the early 1940s, after observing several curiously afflicted children in Baltimore.

Much has been learned about autism in the past half century. The once prevailing "refrigerator mother" theory suggesting cold, aloof mothers caused autism was long ago thrown out as scientific advances favored a biological cause.

But many key questions remain. Researchers don't know if a single gene or many are involved, or possibly different ones in different cases.

It remains "a particularly challenging mystery," said Steve Foote, director of neuroscience and basic behavioral science at the National Institute of Mental Health.

Kanner described what is now known as classic autism - children with severe impairments in language and communication, who may appear deaf, sometimes don't speak, show little eye contact and appear more interested in interacting with objects than with humans. Repetitive behaviors such as rhythmic finger tapping or ball-rolling are common.

Sometimes symptoms show up in children who previously appeared to be developing normally; some call this regressive autism.

It was initially linked to schizophrenia until 1980 when it first appeared as a separate disorder called "infantile autism" in the American Psychiatric Association's manual defining mental disorders. It has been redefined twice in updates of the manual.

No longer rare

Molecular biologist Andy Shih, director of research and programs for the National Alliance for Autism Research, said that whether or not there's been a surge in cases, "what is clear is that autism is a serious public health issue.

"With potentially 1 million Americans afflicted with this disorder," Shih said, "it is no longer something that is rare or seldom seen."

The impact has reached far outside the medical realm.

Many schools are struggling to provide enough services to affected children, funding for research into causes has grown, and lawsuits blaming vaccines are proliferating.

Kathy Gould, project director for an Illinois program that trains teachers and parents how to work with autistic children, said demand has increased significantly in the past five years.

"Every day, more and more people in more and more district schools are saying these kids are coming in and we don't know what to do with them," Gould said.

"Parent workshops have gone from three a year to 15 a year. Parents are crying out for additional help," she said.

Liz Birt of Wilmette, Ill., is among them.

Her son, Matthew, developed normally until he was 15 months old, when he could count to 10 and say about 30 words. He developed autism symptoms gradually after receiving two childhood vaccinations on the same day, Birt said. He stopped talking, acted as if he was deaf, spun in circles, stared at lights and shunned his family.

At 9, Matthew Birt is still profoundly affected and his mother worries that as he grows into adulthood, no services will be available.

"Somebody's got to pay attention to this," Birt said. "We're talking about hundreds of thousands of children who are going to be a big drain on the economy."

Enquirer reporter Peggy O'Farrell contributed to this report.

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