“We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder,” said Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and chairman of the task force making the revisions, which are still subject to change. “It involves a use of treatment resources. It becomes a cost issue.”
But some autism advocates argue that acknowledging the neurological basis for socially odd behaviors has benefits beyond eligibility for services, promoting cultural tolerance and a degree of self-understanding that may be lost without it.
“Having a diagnosis helps people understand why we process thoughts and emotions differently and make positive changes,” said Michael John Carley, director of the Global and Regional Asperger Syndrome Partnership, which urged members to call the psychiatric association to complain. “Sadly, we may be heading back to the days when our differences are seen through the lens of character deficits rather than in the context of brain wiring.”
Even within the medical community, the number of people who would not be eligible for an autism diagnosis under the new criteria is a matter of dispute. Some may fall under a new category, “social and communication disorder,” though it is not clear what kind of aid, if any, they would be eligible for as a result.
Catherine Lord, the director of the Institute for Brain Development at NewYork-Presbyterian Hospital, and a member of the committee overseeing the revisions, said ... the committee’s own data shows that very few who currently have a diagnosis would be dropped. And another analysis of the effect of the proposed new definition, published this month in The Journal of the American Academy of Child and Adolescent Psychiatry, found that roughly 40 percent of individuals with Asperger syndrome would not be given a diagnosis under the new definition. That study suggested that altering the criteria slightly could recapture most of those who would otherwise be excluded.
Yet some parents of severely autistic children who are nonverbal, and may need constant care to avoid injuring themselves and others, say they would welcome a narrowing of the spectrum.
“Everyone on the spectrum benefits when money and services available are applied more specifically and appropriately to the individual needs of each person affected,” said Mark L. Olson, of Henderson, Nev., whose daughter, 16, does not speak. Mr. Olson has argued on his blog that those with more severe needs have been overshadowed by people with the Asperger diagnosis, who have typical intelligence and language development.