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home : news : watchdog April 17, 2015

3/30/2012 4:33:00 AM
Heading toward denial: As autism rages, funds could be cut
Official redefinition of disorder could "end" the epidemic

Richard Moore
Investigative Reporter

First in a series

Two years ago, The Lakeland Times ran a series on the growing autism epidemic - its costs, its causes, the concerns for the future - and now it is time to revisit the arena for an update.

There couldn't be a better time. April 2 is World Autism Awareness Day, and April is National Autism Awareness Month. Over the next month, the newspaper will review many of the topics we analyzed two years ago; other examinations will be launched. For now, though, this article offers a recap and an overview of the terrain and how it has changed since the spring of 2010, as well as what many are expecting in the future.

For those unfamiliar with the disorder, as the CDC states, autism spectrum disorders (ASDs) are a group of developmental disabilities characterized by atypical development in socialization, communication, and behavior.

According to the CDC, autism normally emerges before the age of three and can consist of multiple impairments. For the moment - this article will discuss coming changes - there are several categories of autism: so-called classic autism, or autistic disorder; Asperger Syndrome; and Pervasive Developmental Disorder (PDD).

Those with classic autism commonly experience significant language delays, face social and communication challenges, and often exhibit unusual behaviors and interests. Some have intellectual disabilities.

Those diagnosed with Asperger Syndrome are considered to have a milder form of the disorder, and, while they may encounter some social difficulties, can generally function at a high level, without language or intellectual disabilities Those with Pervasive Developmental Disorder, or atypical autism, also have milder symptoms.

The numbers

Any day now, the Centers for Disease Control is expected to release its latest survey sampling estimating the number of children with autism in the United States, and the number is not expected to be pretty.

The new numbers will likely reveal prevalence rates of autism found in 2008 in children born in 2000.

Right now, based on previous sampling, the CDC estimates that about 1 percent of all U.S. children have an autism spectrum disorder, and some indications show the numbers to be rising still. Even if they are about the same, the crisis clearly has not abated.

Until the new numbers are officially released, the CDC has continued to use numbers from 2006. In that year, the average prevalence rate was 9 per 1,000 for 8 year olds, up from 8 per 1,000 for 8-year-olds in 2004, as measured in selected areas. That factored out to about one in 110 children.

The CDC found autism to be more pervasive among boys than among girls, ranging from more than three to more than six boys for every girl with the disorder.

The CDC numbers themselves are not without controversy. Some critics say the numbers are even higher, and have asserted that the agency has, over time, changed its sampling states, swapping out states with high rates of autism for states with low prevalence rates to mitigate and mask the true numbers of the epidemic.

Whether or not that is the case - this series will explore the issue - certainly autism rates have been found to be higher elsewhere. A recent study in South Korea reported a prevalence rate of 2.6 percent, the CDC acknowledges.

On Wisconsin

Closer to home, Wisconsin is a CDC sampling state, and current numbers in the Badger state reflect the national numbers.

During the 2010-11 school year, for example, 8,255 (.9 percent) of Wisconsin's public and private school students were classified as having autism and received special education services. The 2006 CDC surveillance year data found that 7.6 per 1,000 children in Wisconsin had autism. Between 2002 and 2006, the prevalence rate increased by 46 percent in the state.

The increase occurred primarily in children of families with a high socioeconomic status, contributing to growing socioeconomic disparities in autism prevalence rates, the CDC asserts.

The survey covered the counties of Dane, Green, Jefferson, Kenosha, Milwaukee, Ozaukee, Racine, Rock, Walworth, and Waukesha. In addition to monitoring eight year olds, four-year-old children diagnosed with autism were also monitored in Rock and Dane counties.

Elsewhere, there's indication the numbers are still on the rise. For example, the Indiana Resource Center for Autism has reported a noticeable spike, with the disorder now affecting one in 83 children in Indiana's public schools.

In Utah, another sampling state, the 2008 numbers for children born in 2000 put the prevalence rate at 1 in 77, an increase of 73 percent over 2002. That year, Utah reported a rate of 1 in 133.

As always, the controversy about the numbers continues to swirl, over and above charges of manipulation by the CDC. Many contend the dramatic increase in autism reflects nothing more than increased awareness on the part of both parents and doctors, better diagnostic capabilities, and broader definitions.

Others believe the opposite - that while those factors likely account for some of the increase, only a true increase can explain the staggering climb: Only about 1 in 10,000 children were diagnosed with autism as late as the 1980s.

This series will explore the latest developments on that front.

A brewing controversy

Meanwhile, the cost of ASDs continues to climb, and that reality hasn't changed very much since 2010.

Experts have said the cost to society of autism can be as much as $35 billion a year, and that's likely understated, according to Harvard professor Michael Ganz in 2006. Not even counting direct costs for such things as medical care and special education, Ganz estimated that annual indirect costs for autistic individuals and their parents range from more than $39,000 to nearly $130,000.

His study estimated that it can cost about $3.2 million to take care of an autistic person over his or her lifetime. In addition to therapy - behavioral, speech, occupational - gastrointestinal and other physical illnesses often accompany autism, requiring medical treatment, all driving costs higher and higher, along with the rising emotional toll on families.

Recent studies underscore the continued high costs of autism.

A study published in November 2010 show costs for autism rising faster than for any other mental disorder, while an even newer report in the Journal of Developmental & Behavioral Pediatrics concludes that children with autism result in six times the Medicaid costs than children who are developing typically.

Defining autism away

If the costs of caring for those with autism isn't abating, the number of those diagnosed with autism soon may be.

A new version of the official DSM, or Manual of Mental Disorders, is set for later this year, and it is the first major revision in 17 years. What's proposed is to narrow the definition of autism, thereby restricting diagnoses and driving prevalence rates lower.

The revision would be important because DSM is the professional authority for mental disorders, and it used for awide array of decision-making purposes, not only diagnostic but for insurance and other financial underwriting. A panel appointed by the American Psychiatric Association is reassessing the definition.

Under the proposed change, the manual would combine the three now separate autism categories - classic, Asperger and PDD - eliminating the latter two. Right now, a person can be diagnosed as "on the spectrum" by manifesting at least six of 12 defined behaviors; in the new DSM, a person would have to have three qualifying deficiencies in social interaction and communication, and manifest at least 2 repetitive behaviors.

Speaking to the New York Times in January, Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine, said the changes could effectively end the autism surge, and the Times quoted him as saying, "We would nip it in the bud."

Volkmar and his colleagues Brian Reichow and James McPartland have published a paper in the online edition of the Journal of the American Academy of Child & Adolescent Psychiatry studying the potential impact of the proposed criteria. They studied 933 participants who were evaluated during the DSM-IV (the previous version) field trial, of which 657 had been clinically diagnosed with an autism disorder, and 276 were diagnosed with a non-autistic disorder.

What they found was that only 60.6 percent of those with had a clinical diagnosis of autism met the proposed revised DSM-5 standards. About 24 percent of those originally diagnosed with classic autism would no longer be so categorized, while 75 percent of those with Asperger Syndrome would not, and only 46 percent of those with higher cognitive abilities would qualify.

"Proposed DSM-5 criteria could substantially alter the composition of the autism spectrum," the authors wrote. "Revised criteria improve specificity but exclude a substantial portion of cognitively able individuals and those with ASDs other than (classic) autistic disorder. A more stringent diagnostic rubric holds significant public health ramifications regarding service eligibility and compatibility of historical and future research."

Redefining autism might not reduce the real incidence of autism - saying your white car is red doesn't make it so - but it most assuredly would make funding for services shrink, and exclude large numbers of people who now qualify.

The impact could be significant. As the CDC points out, in Wisconsin alone, the number of children receiving special education services for autism more than doubled between 2002 through 2010.

Services include such things as applied-behavior analysis, or behavioral therapy that involves intensive one-on-one work with a therapist.

This series will explore the DSM revisions in an upcoming article.

Finally, controversy continues about the cause of autism beyond definitions and better diagnosis. While vaccines continue to lurk as a culprit for many - the series will engage that issues as well, including the purported dangers of aluminum in vaccines - recent research has expanded the potential role of environmental toxins in general.

A 2011 study of identical twins published in Archives of General Psychiatry, for example, found that autism affected both children in 77 percent of the male twins and in 50 percent of the female identical twins.

That wasn't surprising, but, using mathematical models, the researchers estimated that only 38 percent of the cases could be attributed to genetic factors, while environmental factors appeared in 58 percent of the cases.

That's just one of many interesting studies emerging in the field. This series will review the latest scientific literature.

Meanwhile, today, The Lakeland Times puts the controversies and competing theories aside simply to recognize National Autism Awareness Day and Month and to call attention to the individuals and families affected by these disorders.

Richard Moore may be reached at richardmoore.gov@gmail.com.

Related Stories:
• Scientific search intensifies for causes of autism epidemic
• New CDC numbers: Autism rates continue to skyrocket

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