With orders now being taken by the American Psychiatric Association for its first updated volume on diagnostics in nearly 20 years -- and no hope for changes in the text -- Long Islanders are dismayed that an Asperger's syndrome entry no longer exists.
Editors of the Diagnostic and Statistical Manual of Mental Disorders -- the DSM-5, considered the bible of psychiatry -- have no intention of reinserting Asperger's syndrome as a separate condition.
Despite a hue and cry from psychologists, psychiatrists and those who've been diagnosed with the so-called high-functioning form of autism, Asperger's will fall under the autism spectrum disorder category. That change could mean a loss of funding for social and behavioral services for countless children.
"They're taking a diagnosis of a condition, which has finally been recognized, and arbitrarily throwing it out the window," said Brett Sherris of Northport, who wasn't diagnosed with Asperger's until he was in his 40s. "We know what it is and we know how it manifests but they are throwing it out the window."
The condition was named after Austrian physician Hans Asperger, who in 1944 described individuals with awkward social skills. Most people with Asperger's do not make friends easily and have eccentric or arcane interests.
Concern for children
Sherris said he worries about children who could benefit from proper diagnosis and help with social skills early in life.
Sherris, whose pastime is an all-encompassing interest in films and the history of the silver screen, said it took years for him to learn that his social awkwardness and single-minded interest stemmed from Asperger's.
"I was born in 1961 and back in that era people didn't know anything about Asperger syndrome," he said.
Sherris added that his mother took him to numerous professionals in an effort to understand his aloofness and interest from the age of 6 in learning everything possible about movies.
He credits a psychologist who recognized his condition as an adult with making the appropriate diagnosis. He said she also recognized the trait in his father and suggested the behavioral pattern was likely genetic.
"I saw her for about seven years," Sherris said of his sessions. "And it took about that long for many aspects of my day-to-day to life to be manageable for me so I could blend in.
His surprise that an entire clinical condition is disappearing from the leading diagnostic guidebook is shared by mental health professionals who are equally mystified.
"It has been deleted," said Gil Tippy, an Oyster Bay psychologist in private practice and clinical director of the Rebecca School. The Manhattan school educates children with neurodevelopmental disorders.
"I do think psychologists and other professionals -- the good ones at least -- will still be able to diagnose children appropriately," he said.
"What will happen is that these kids will get the autism spectrum diagnosis and have a level of challenge assigned to them," he said of the new method of diagnosing children on the autism spectrum. "But these children will look less challenged and will have difficulty getting into special services. I think the whole thing is a terrible idea. I don't support it at all."
He said the loss of Asperger's syndrome in the DSM-5 is a result of the types of panelists chosen to write that section of the book. All were drawn from the realm of research as opposed to clinicians who work with children daily, he said.
'Current science' cited
Dr. James Scully, medical director and chief executive of the American Psychiatric Association, said the new guidebook is based on the body of scientific evidence that has come to light since 1994, the year the DSM-4 was published.
"This new manual represents the current science and best practices of our field providing standard criteria by which mental disorders are diagnosed," Scully said in a statement. "Since the last revision, a wealth of new research and knowledge has become available. Our hope is that by more accurately defining disorders, diagnosis and clinical care will be improved and new research will be facilitated to improve our understanding."
Sherris, meanwhile, curator of the Summer Camp Cinema program, which screens films at the Cinema Arts Centre in Huntington, said he's saddened that some children may easily fall through the cracks in the coming years as mental health professionals grow used to the new diagnostic criteria.
Kids need to know that it is possible to blend in with the rest of society and not to be the wallflower or the kid who eats lunch alone, he said.
"That's what people with AS want to do, they want to blend in. They want to be like the next guy," Sherris said. "But I'll say this: If you've met one person with Asperger's, you've met only one person with Asperger's, because it manifests differently in everyone."