The elimination of Asperger syndrome as a diagnosis in the upcoming "bible of psychiatry" has stirred advocates for children, even as leaders of one of the nation's most influential autism organizations agree with the change.
An American Psychiatric Association task force approved dropping Asperger syndrome from the Diagnostic and Statistical Manual of Mental Disorders-5 -- the DSM-5 -- this past weekend. The changes are the first in nearly 20 years.
When the book comes out in May, the term autism spectrum disorder will be used for all related conditions.
"The purpose of the DSM-5 is to create more specific diagnostic criteria. By throwing Asperger's out, they're making it less specific."
VanBergeijk suggests that mental-health professionals ignore the DSM-5 and use, instead, the International Classification of Diseases, a publication of the World Health Organization, which still lists Asperger syndrome.
Alycia Halladay, senior director of Autism Speaks, a national advocacy group, sees dropping the diagnosis and using the new terminology as beneficial.
"These are changes that have a strong scientific basis," Halladay said. "There have been a number of studies that suggest these changes may exclude a number of individuals with autism, but there have been more current studies, which show that will not happen."
Named for Austrian physician Hans Asperger in 1944, the syndrome refers to individuals with awkward social skills. Most people with Asperger's do not make friends easily and have eccentric interests, such as memorizing vast columns of numbers.
The DSM-4, published in 1994, notes that people with an Asperger diagnosis usually have average or well-above-average intelligence.
"We have finally gotten people used to the idea of Asperger's and now they want to throw it out the window," VanBergeijk said. "I don't think families are going to put up with it."
He said losing the diagnosis would curtail state and health-insurance financing for educational, social and behavioral services for youngsters who benefit from the support.
Evelyn Ain, a founder of Autism United, a Long Island advocacy group, also is concerned.
"It's actually a bad idea and it's bad because people with Asperger's are very high-functioning individuals who will have an independent, normal life -- but they need services," Ain said.
"Individuals with [classic] autism will never have a quote, unquote, normal life and will always be dependent on someone. There is a difference," she said.
VanBergeijk's Central Islip program is aimed at people ages 16-22 with special needs and focuses on job training and independent living skills. Some of his students have Asperger syndrome.
"A child with [classic] autism is very difficult to talk to," he said. "When you talk to them, it's like pulling teeth, whereas a child with Asperger's is the exact opposite. They will plow you under with information on trains or train schedules or clocks or some other esoteric topic. You can't get them to stop talking."