The syndrome has been dropped from the "bible of psychiatry" as a distinct condition, which has many parents and caregivers worried.
One expert calls it “Autism Lite,” while another uses the phrase, “close-but-no-cigar-autism.”
They are referring to “social communications disorder,” the new classification in the DSM-5, the American Psychiatric Association’s (APA) diagnostic manual, often referred to as the "bible of psychiatry," that ropes in Asperger's syndrome under that one umbrella. The new DSM-5 will be in effect in May, 2013. The thick manual is used to diagnose mental illness and to thus, determine who receives support services, such as speech therapy, occupational therapy, physical therapy and social/emotional skills training.
It’s that last part that has some people worried. In DSM-IV, the previous manual, Asperger's Syndrome was treated as separate diagnosis from autism, as were a host of other childhood disintegrative disorders called "pervasive developmental disorders not otherwise specified" (PDD-NOS). The DSM-5 has changed all that, unifying many of these diagnoses to fit under one heading of autism spectrum disorder (ASD). Social communications disorder is not considered an autism spectrum disorder.
This, says Fred Volkmar, Director of the Yale University Child Study Center and Chief of Child Psychiatry at Yale-New Haven Hospital, may leave high-functioning children with autism symptoms out in the cold.
“The APA decided to get rid of the sub-threshold, ‘close, but not quite’ categories, which are five-times more common than classical autism,” he explained. “It’s ‘close-but-no-cigar-autism’ -- These people need services, even if they’re ‘not quite’.”
Previously, a PDD-NOS diagnosis entitled a person to receive public support services under the Individuals with Disabilities Education Act (IDEA.) But with the new blanket classification, social development disorder, not recognized by IDEA, it’s unclear if the same people will be eligible.
“This is going to raise some very fundamental problems,” he predicts. “This was supposed to be a diagnosis for children who have ‘language problems with social vulnerability’-- but we don’t have the faintest clue what this means.
“If you take what [the APA says] at face value, the more able people – and I’m not saying rocket scientists, I’m saying people who score 70 or above on an IQ test, people outside the mentally retarded rate -- these people get no services. The APA estimates that no more than 10% of the children will lose a diagnosis, but among the more able [autistic population], we think it may be more like 40%. That’s what we’re worried about.”
Volkman acknowledged that this is a worst-case scenario, but says he sees little reason for optimism. “If you’ll forgive my saying so, it’s a little like asking Mrs. Lincoln how the play went. The reality of it is, we have a bit of a mess on our hands. If people are motivated, they’ll do anything they can to pull services. This is not a world where people are eager to give services if they can help it.”
This prediction is echoed by other experts, including Ari Ne’eman, President of the Autistic Self Advocacy Network and a Presidential Appointee on the Council for Disability. “Applicants applying [for educational and health services] with a diagnosis of social communication disorder . . . would be at a significant disadvantage compared to those with an ASD diagnosis . . . [and] would have diminished access to both SSI and SSDI cash benefits and public health insurance through the Medicaid Buy-In program.”
Autistic author and activist Temple Grandin expressed a similar fear.
“It is my opinion that social communication disorder is part of the social impairment continuum of the autism spectrum. I fear that many Aspies will be switched into this diagnosis when school districts get short on funding," she wrote on her website.
The motivation to change the diagnosis, according to Catherine Lord, PhD., director of the Center for Autism and the Developing Brain, New York Presbyterian Hospital/Weill-Cornell Medical College/Columbia University Medical Center, came from the awareness that “many professionals found the DSM IV criteria confusing.”
“It’s a new category so it’s normal to have a lot of questions about it," acknowledged Lord, a member of the DSM-5 task force. "But I think the hysteria is unnecessary."
She added that "diagnoses of PDD-NOS were often used instead of autism because diagnosticians did not want to upset parents . . . and there was concern that, in some states and school systems, children and adults were being denied services because they didn't have autism diagnoses.”
For parents “in the heat of the battle,” the question is at the core of their struggle to get their children the help they need. New Jersey mom Catzell Bumpus said her son Timothy is thriving today because of the early intervention services he received after he was diagnosed with Asperger’s at age six. But that came only after years of misdiagnoses.
“We had been through a series of evaluations since Tim was three, and at first, they could not figure it out and did not rule out OCD," she recalled. “He was then diagnosed with Semantic Pragmatic Disorder, which overlaps a lot with Asperger's.”
Neither Obsessive Compulsive Disorder (OCD) nor Semantic Pragmatic Disorder are included on the autism spectrum. However, Tim’s Asperger’s diagnosis did qualify him for school services and accommodations, such as occupational therapy, social skills training and emotional support.
“The accommodations gave him help so he could use the nurse as a safe haven if he needed a place to go, or allowed him to take a walk if he needed to de-stress,” said Catzell. “It allowed extra time on tests, for him to be able to take a test verbally, for directions to be repeated if necessary, and other strategies such as assistive technology to ease anxiety and make his days easier.”
As Tim got older and began to excel academically, the services diminished, Bumpus said. Now 14, Tim is an honors student at his mainstream high school and preparing for college. Though he is friendly and confident with adults, he has some social issues with his peers and finds physical situations, like gym, challenging. Still, Catzell said the help he received early in his life was invaluable to his success. She questions whether similar high-functioning children would receive that same help today.
“My fear is that an individual kid will get lost in the DSM-5 reclassification. Some children who really need help may not “qualify” or be diagnosed at all, and won’t be able to receive essential educational or state services. If Tim was six years old today, he would never qualify to get services [because he is high-functioning].”
She added, “He has this diagnosis and I want him protected. Some people think, ‘Oh, you just want your kid to have extra time on the SATs.’ No, I want him protected.”