An Editor's note: This news article from the Ventura County Network was a bit too hasty to have drawn the conclusions they have made in this headline. Sources at the MIND Institute point out that the article itself reports that they only found "some" misdiagnosis and that "multiple factors" are at work. The conclusion made here belongs to the reporter, and not the researcher.

http://www.staronline.com/vcs/county_news/article/0,1375,VCS_226_1020477,00.html

Misdiagnosis may account for rise in autism cases

By Kathleen Wilson, Staff writer

Three years after state officials reported an unprecedented increase in the number of California children with autism, researchers have found indications that some of them were wrongly diagnosed with the incurable and serious brain disorder.

Dr. Robert Byrd, principal investigator of a $1 million study on the reasons behind the increase, said that a pilot study based on youngsters in the Stockton and Sacramento areas found some have mental retardation instead. Other children diagnosed as autistic by state assessment teams did not meet the standard set by the American Psychiatric Association, the pilot study found.

Byrd cautioned, however, that the number of children represented in the two Northern California areas was too small to forecast the picture statewide. He said multiple factors will probably account for the increase when the final results come in for the entire state in a few months. Researchers are looking at a variety of possible explanations, including the children's medical conditions.

"I don't believe it will be one thing," Byrd said in a recent interview. "I'm not sure when I'm done I will have explained the entire increase away."

Testing the process

Byrd declined to release any specific numbers at this point, saying the pilot study was done to test the process rather than for scientific validity.

In any case, he said, it's doubtful that the rise was driven by vast numbers of families with autistic children moving to the state. Autism cases grew 15 times faster than the state population from 1987 to 1998, increasing by 273 percent. Over the same period, the California population ticked up 18 percent. The rise has burdened schools with special-education costs and many families are struggling to raise children seriously disabled in thinking, communicating and social interaction.

Misdiagnosis is an issue not just for explaining whether the autism increase is real, but also because it might lead to ineffective treatment and schooling. Educators now know better methods for teaching autistic children than they did in the past, so experts say it's important to identify them correctly and early.

Numbers doubled

Growth in autism cases has continued unabated in recent years as well. The number of autistic people receiving state-paid services from the Department of Developmental Services has more than doubled from 8,000 in mid-1998 to almost 17,000 early this year. The figure more than doubled in Ventura County as well, going from 200 to almost 500 over the same time period.

Public schools, charged with providing most services to autistic children once they reach age 3, are also flooded with new cases. School officials in Ventura County and the neighboring Las Virgenes area saw the enrollments of children with autism grow from a handful in the 1980s to 610 at the end of last year.

Most of them are children under 10, a development that has led to the opening of new classes tailored to their needs and the hiring of aides who work with them on a one-to-one basis in regular classrooms. Many of these children are living in affluent communities -- the Las Virgenes Unified School District had enrolled 83 at the end of last year, Conejo Valley had 79 and Simi Valley 106. In contrast, Ventura Unified, which is almost as large as the Conejo Valley district and bigger than Las Virgenes, had 48.

Wealth could be factor

Autism advocates say there is no evidence the disorder occurs more often among the affluent, but that wealthy areas may get more students because families are moving there to take advantage of their school programs. With the advantages of money and education, they may also be more likely to get their children diagnosed with the disorder, opening the way for services public schools must provide.

Deputy Superintendent Donald Zimring called the financial impact on Las Virgenes "huge." He said the district spent $642,522 last year, most of it for the 24 students who were most severely affected by autism -- a cost of $26,772 per child.

Administrators like Zimring say schools are ill-prepared to shoulder the financial burden, calling on federal and state governments to increase funding. Money, in fact, has been a stumbling block to boosting services in the schools, even as they have opened new classes and added more teacher training.

"Funding hasn't really improved and that's really the crux of it all," said Laura Valdez, mother of two boys with autism and former president of the Ventura County Autism Society. "The intentions were all there."

Most still in elementary school

Valdez said the challenge ahead is developing programs in the junior high and high schools. The first big wave of autistic children is still in elementary school. She predicted that parents will sue unless districts provide adequate programs in the upper grades.

The programs that worked in early grades such as assigning a one-on-one aide often don't wash for adolescents, said Ric Nargie, who oversees special education for the Ventura Unified School District. Students would become social outcasts if they had aides with them constantly, he said, so he hopes to develop some type of buddy system.

As educators grapple with the increase, state officials hope that Byrd's study will explain it. The Legislature commissioned the study after learning of the rise in cases. It far outstripped increases for other disabilities for which the state provides lifetime services, such as cerebral palsy, epilepsy and mental retardation.

The eight investigators doing the research are studying 1,000 children around the state, including several youngsters in Ventura County. Half of the group has been diagnosed with mental retardation and the other half with autism -- conditions at the heart of a debate over whether changing standards of diagnosis have driven the increase.

May have been mislabeled

Some specialists say large numbers of autistic children were mislabeled as mentally retarded in the past, and that the increase simply shows what the true numbers should have been. But others say health professionals may be overcalling autism now because they're concluding that mentally retarded children with autistic-like features -- such as rocking and hand-flapping -- have the full disorder.

Aging shows the truth

Valdez, who teaches a class of autistic children, said the aging process sometimes shows the real truth. Some youngsters have autistic-like behaviors in the early grades but not later, she said.

"I've watched a lot of these kids. As they get older and become more skilled, those things are dropping out. Some have real learning disabilities and other children have emotional problems."

Cathy Cartwright, director of special services in the Pleasant Valley School District, though, doubts that misclassification is driving the increase.

"That theory has not held true in our district," she said. "The youngsters we're seeing today look very different from the kids we were seeing 10 or 15 years ago. There are just more children exhibiting the characteristics of autism. ... I wish somebody could give us an answer."

-- Kathleen Wilson's e-mail address is wilson@insidevc.com.

On the Net: www.dds.ca.gov/Autism/main/ autismmain.cfm 

March 8, 2002

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