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"The field is still trying to organize valid diagnostic categories. It's honest to re-look at what the science says and doesn't say periodically," said Ken Duckworth, medical director for the National Alliance for the Mentally Ill, which was gearing up to evaluate the draft.
The draft manual, posted at http://www.DSM5.org/, is up for public debate through April, and it's expected to be lively. Among the autism community especially, terminology is considered key to describing a set of poorly understood conditions. People with Asperger's syndrome, for instance, tend to function poorly socially but be high-achieving academically and verbally, while verbal problems are often a feature of other forms of autism.
"It's really important to recognize that diagnostic labels very much can be a part of one's identity," said Geri Dawson of the advocacy group Autism Speaks, which plans to take no stand on the autism revisions. "People will have an emotional reaction to this."
Liane Holliday Willey, an author of books about Asperger's who also has the condition, said in an e-mail that school autism services often are geared to help lower-functioning children.
"I cannot fathom how anyone could even imagine they are one and the same," she wrote. "If I had put my daughter who has a high IQ and solid verbal skills in the autism program, her self-esteem, intelligence and academic progress would have shut down."
Terminology also reflects cultural sensitivities. Most patient-advocacy groups already have adopted the term "intellectual disability" in place of "mental retardation." Just this month, the White House chief of staff, Rahm Emanuel, drew criticism from former GOP vice presidential nominee Sarah Palin and others for using the word "retarded" to describe some activists whose tactics he questioned. He later apologized.
Copyright 2010 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
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