VanBergeijk: New autism definitions will leave too many out of services

"Intensive early intervention is not cheap, but the "Intensive early intervention is not cheap, but the cost of failing to intervene is far greater," writes Ernst O. Vanbergeijk. Photo Credit: Donna Grethen

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When the Centers for Disease Control found that 1 out of every 88 children has an autism spectrum disorder, there was an outcry. The number is "too high," was the message; autism is "over-diagnosed." That response, in part, led to a fierce philosophical battle over the diagnosis of autism spectrum disorders.

The battle is over now, and the result is the elimination of Asperger syndrome as a diagnosis in the new edition of the Diagnostic Manual of Mental Disorders, otherwise known as the DSM-V, to be published in May. The manual is used by clinicians to assign diagnoses -- and therefore affects the decisions of insurance companies about reimbursements to providers. Educators, too, often use the DSM-V to justify additional services.

This misguided change in the DSM-V limits the number of people labeled as having an autism spectrum disorder, effectively giving insurers and others an excuse to cut the funding for social and educational services these individuals need to live healthy, independent lives. There are distinct differences between a child with Asperger syndrome and a child with autistic disorder -- just ask any parent who has experienced this with his or her child. So there are different approaches to these diagnoses.

The new definition, however, opens the door to exclusion. Various recent studies have concluded that between 5 percent and 45 percent of higher functioning individuals on the autism spectrum could be excluded as a result of this change. That translates to thousands of people each year.

When the CDC announced last year that two-thirds of Americans were labeled as "overweight" or "obese," no one called for a change in the definition of obesity so fewer Americans would be diagnosed. Instead, policymakers treated the problem as a public health concern. The government found funds to address the issue and launch public awareness campaigns. Schools and communities implemented healthy eating initiatives and exercise programs. News reports this week show that we may finally be stemming the childhood obesity tide in some urban areas.

The reaction to the autism numbers, on the other hand, was antagonistic.

Although 1 out of every 88 children appears to be a large number, it doesn't rival the magnitude of the obesity problem in the United States, nor its cost. But some opponents imply that parents are having their children diagnosed with autism as a means to access services.

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In reality, changing the definition of autism to a less precise diagnosis will prevent individuals on the spectrum from receiving badly needed services. The label itself won't alleviate their need for services, of course. Rather, changing it will allow some insurance companies and school districts to temporarily save money by not providing services to those individuals who will no longer receive a diagnosis under the proposed stricter guidelines.

The latest estimate of the economic impact of autism is around $137 billion in the United States alone. Changing the definition will simply obscure those costs. In fact, it may even increase the long-term costs for society: Individuals with Asperger's who once qualified for services will no longer receive them and will therefore have poorer outcomes. They will be more likely to need lifetime, taxpayer-supported care.

We know early detection and intervention with empirically based techniques lead to better longer term outcomes for children with autism. A generation ago, these children were banished to large, congregate care facilities with no hope of an independent life. Now, children who receive interventions early learn to talk, take care of themselves and, in some cases, even go on to postsecondary education.

Intensive early intervention is not cheap, but the cost of failing to intervene is far greater. Changing this definition shortchanges not only the individuals with autism and their families, but all of us. Many individuals on the autism spectrum can learn to work and be contributing members to our tax base rather than dependents on the social service system.

Only by embracing the scope of autism -- just as we have done with the obesity epidemic -- can our country truly reduce the costs of the problem and provide individuals on the autism spectrum with the quality of life we all want and deserve.

Ernst O. VanBergeijk is the associate dean of the Vocational Independence Program, and an affiliate of New York Institute of Technology School of Health Sciences in Central Islip.

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