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Changes to Name, Definition of Mental Retardation Raise Concerns

Another proposed change to the Diagnostic and Statistical Manual of Mental Disorders is raising concerns, this time involving the new definition and relabeling of mental retardation.

There are already concerns about proposed changes to the definition of autism spectrum disorders in the new manual, which is undergoing its first major update in 17 years.

In the case of the definition of mental retardation, the American Association on Intellectual and Developmental Disabilities said that plans to change mental retardation to "intellectual development disorder" doesn't match shifts in the United States and abroad to use the term "intellectual disability." In addition, the proposed definition from the American Psychiatric Association, which publishes the manual, "does not align with its own thoroughly researched and professionally accepted definition of intellectual disability," the advocacy group said in a statement.

About two years ago, President Barack Obama signed "Rosa's Law," which replaced the term "mental retardation" with "intellectual disability" in federal education, health, and labor laws.

The proposal diverges from the existing diagnosis criteria now endorsed by the American Psychiatric Association, Margaret Nygren, executive director of the American Association on Intellectual and Developmental Disabilities told Disability Scoop.

Nygren said the proposed definition's lack of specificity with regard to testing for IQ and adaptive functioning is troubling. She also believes that there should be a finite age by which symptoms of the disorder appear. The current version of the DSM requires individuals meet the criteria for "mental retardation" by the time they are 18; the draft changes would ease that requirement, saying symptoms must originate "during the developmental period."

The Arc, which advocates for people with mental and intellectual disabilities, echoed AAIDD's concerns.

"This decision will have a great impact on our community," Peter Berns, chief executive officer of The Arc, told Disability Scoop. His group also plans to submit comments about their concerns. The American Psychiatric Association is accepting comments on the proposed changes through June 15.

Part of what's driving the change is alignment between the DSM and an upcoming revision of the International Classification of Diseases, published by the World Health Organization.

That manual is expected to use "intellectual developmental disorder" in its 11th version, said James Harris, a professor of psychiatry and pediatrics at the Johns Hopkins University School of Medicine and a member of the American Psychiatric Association group responsible for updating the "mental retardation" diagnosis.

Harris told Disability Scoop the ICD label more accurately describes the condition for clinical purposes than "intellectual disability," which emphasizes someone's functioning level.

IQ tests would still be required under the new definition, but medical groups want to move away from a reliance on scores alone.

"There is only one diagnosis that's based on a test," Harris said, mental retardation. "All the other diagnoses are based on people. We want to focus on the person, not the number."

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