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Perspective: Narrowing Autism Definition Will Cost More, Later

Ilyse Levine-Kanji with her son. Sam
Ilyse Levine-Kanji with her son. Sam

By Ilyse Levine-Kanji
Guest Contributor

Ilyse Levine-Kanji is a school committee member in Westborough, Mass. and a former employment discrimination lawyer. Her son, Sam, has autism.

As a school committee member, I recognize how costly services for autism are, and I understand the current urge to more narrowly define autism. As a parent of a child with autism, I also know that the costly supports my son Sam has received – from his school, through our insurance company, and from our own pocket – have helped him immeasurably.

If you saw Sam, now 13, on the street, you would know immediately that he is unlike most children. Sam makes little eye contact; can “flap” his arms or make other disconcerting movements; speaks in an unnaturally loud, high-pitched sing-song voice; and has frequent loud bursts of laughter about things evident only to him. Throughout his school day, Sam requires the constant presence of a trained adult to painstakingly teach him information, from academics to reading social cues to following societal norms of behavior. Sam’s need for constant supervision continues once he gets home from school.

[module align="right" width="half" type="pull-quote"]

We will have “solved” the autism epidemic and helped school budgets, not by finding a cure, but by perpetrating a definitional slight of hand.

[/module]Sam’s oddities obscure his substantial intellectual capabilities, many of which have only become evident now that he is finally able to better express himself verbally. He does grade-level math at school and has recently become interested in learning French. He scored 98% and 100% on his two most recent French tests, exactly the same tests the typically developing students in his 7th grade class took. Sam can tell you the day of the week your birthday falls on, going forward or backward about 50 years, and also remembers most of what he did on any particular date for the past several years.

Sam was diagnosed with PDD-NOS [a broad definition of a developmental disorder] at 26 months. Due to his diagnosis, he was immediately eligible for intensive Early Intervention services. Our insurance company has paid for occupational therapy to help Sam overcome sensory issues and gross and fine motor deficits, speech therapy to improve his communication ability, and medication. The school district provides a full-time aide to help Sam get through his day, at a cost of upwards of $30,000 a year. Over the years, we have paid for neurofeedback therapy, therapeutic horseback riding, music therapy, and therapeutic listening therapy, among others; and I gave up my legal career to help with his care.

This cost-sharing arrangement will change radically if the American Psychiatric Association adopts a proposed new definition of autism that – a recent Yale estimate suggests – will exclude vast numbers of school children now diagnosed on the autism spectrum. Overnight, the number of individuals diagnosed with autism will fall by half, and the steady upsurge in numbers will turn into a dramatic decline. We will have “solved” the autism epidemic and helped school budgets, not by finding a cure, but by perpetrating a definitional slight of hand.

[module align="left" width="half" type="pull-quote"]With appropriate supports, autistic individuals like Sam are able to learn and to grow into productive, taxpaying members of our society. [/module]

If Dr. Fred Volkmar, the director of the Yale University Child Study Center, is correct, the new definition of autism will exclude more than 85% of individuals who are currently diagnosed with PDD-NOS. Will that mean that a 3-year-old with the same characteristics Sam had a decade ago will not receive his diagnosis and the resulting services that have been so beneficial to him? Will that leave families trying to shoulder an even bigger burden of emotional, physical and financial care – one that already stretches nearly every budget, regardless of earnings or wealth?

With appropriate supports, autistic individuals like Sam are able to learn and to grow into productive, taxpaying members of our society. If a far narrower definition of autism is adopted — allowing insurance companies and financially-strapped school systems to deny beneficial services – society will pay far more in the long-run, more families will be financially devastated by this condition, and people with a significant disability will be relegated to a lower quality of life.

For further reading here's another interesting perspective on the autism definition: Is it time to abandon the DSM? And The American Psychiatric Association is accepting public comment about the proposed new definition of autism at dsm5@psych.org.

This program aired on January 23, 2012. The audio for this program is not available.

Carey Goldberg Twitter Editor, CommonHealth
Carey Goldberg is the editor of WBUR's CommonHealth blog.

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