Stopping an Epidemic By Redefining It

American Autism Association LogoFinally a proposition to stop the epidemic of ASD (Autism Spectrum Disorder). But is it valid? An expert panel at the American Psychiatric Association is proposing to do just that. The D.S.M., Diagnostic and Statistical Manual of Mental Disorders is undergoing the most dramatic revision in 17 years. The D.S.M. is the standard used to diagnose mental disorders.

By new definitions, most of those now diagnosed with high functioning Aspergers will lose their diagnosis. Experts believe that this will stem the rising tide of numbers of those diagnosed with ASD, numbers which now are reaching “epidemic proportions.”

“We would nip [the rising Autism rate] in the bud,”  said Dr. Fred R. Volkmar, director of the Child Study Center at the Yale School of Medicine and an author of the new analysis of the proposal.

There has been an argument raging for years with one faction claiming that the numbers are merely the results of better diagnoses, while many experts still hold that that still doesn’t account for the fact that one child in a hundred is now diagnosed with ASD.

Who will win and who will lose if the new criteria is adopted? It can only be speculated who the winners will be, insurance companies and under-funded government programs designed to assist those with ASD. But will this help anyone in the long run? Contrary to public opinion, a diagnosis is by no means a fast track to “free services.” Estimated costs to families can range from $39,000 to nearly $130,000 a year.

The fact that these children need extra help will not change regardless of what label is put on them. However, insurance companies are facing down a growing tide of changing laws and litigations that may one day succeed in forcing them to cover more services for children with ASD. Is it possible that they chose instead to use their funds to stop the epidemic by pushing to redefine it?

Funding isn’t the only thing at stake for a family with ASD. The prospect of putting a child with ASD into public school has become one of increased trepidation. IEPs, Restraint and Seclusion, a lower standard of education, all these can be a maze of nightmares for parents to navigate. Take away the diagnosis and you have a child who needs extra help yet is now labeled only as a child with “behavior issues” and relegated to daily punishments to “correct” him.

Many parents with special needs children choose to homeschool them instead of leaving their fates to the public school system. Homeschooling laws in TN assert that if a child falls behind, the school system can choose to force the child back into public schools unless the child has a learning disability. Many children with ASD, regardless of high or low function, can have difficulty learning with several underlying learning disabilities. Without a diagnosis, if a homeschooled child falls too far behind their peers would they be forced back into public schools in spite of what’s best for them? If a child falls behind in public schools, teachers don’t lose their jobs and the school doesn’t “lose the child.” The child is just one  more to fall into the cracks until he’s old enough to drop out.

Making a problem go away by pretending it doesn’t exist may be a very old and well-used remedy, but it’s one that has never worked. Today the prognosis for a child diagnosed with ASD is better than ever, because early interventions have become so much better. To change the definition of the diagnosis to leave out who knows how many thousands of children is a great disservice to those children, their families, and in the long run to the communities who will still end up supporting them somehow if no early intervention is given. The cost for a child who does not get early intervention is far greater in the long run than the cost for a child who receives excellent services.

Of course it’s not all about the costs, though sadly for many it comes down to dollars. For the parents, the real issue is quality of life. Every parent wants their child to have the best life possible to them. Without the first step of an accurate diagnosis, for many parents this will become an even more difficult goal than it already is.

Gaynell Payne is the mother of an autistic child and an advocate for children with special needs. She is a freelance writer, photographer and a blogger at Wildflowers for Jade. This post was first published at Examiner.com.

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