THURSDAY, April 18 (HealthDay News) -- People with Asperger's
syndrome -- mild autism with normal or sometimes superior verbal
ability and intelligence -- are at a crossroads: Their diagnosis is
about to disappear.
In 1994, Asperger's was recognized as its own disorder in the
fourth edition of the
Diagnostic and Statistical Manual of Mental Disorders(
DSM-4). For some people, realizing that they fit into the
Asperger's diagnosis was a "eureka" moment of sorts.
In mid-May, however, the American Psychiatric Association (APA)
will unveil the latest edition of the diagnostic manual. In the
DSM-5, the Asperger's term will not exist -- and many people
with Asperger's are upset.
Hallmark symptoms -- significant impairment in work and social
functioning, inability to understand nonverbal communication,
repetitive behaviors and restricted routines -- will be folded into
the term "autism spectrum disorders," ranging from the mildest to
most severe autism.
The APA says that with the change, diagnosis will become more
accurate and consistent.
"The intent was that it would make diagnosis more straightforward," said Catherine Lord, a member of the APA group that updated the diagnoses. "They're not necessarily different disorders because, at least biologically, nobody can differentiate Asperger's from autism."
"One of the good things that the idea of Asperger's syndrome did was make people aware that somebody can have quite significant social deficits but be a very intelligent person," said Lord, director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital. "The goal of our committee is not to lose those people but to say they can be recognized within this broader concept of autism spectrum disorders."
But many with Asperger's believe they will fall off the spectrum
and lose access to needed services. And they fear that their very
identity is at stake.
Some people with Asperger's syndrome "formed their first
identity of normality within the group," said Liane Holliday
Willey, senior editor of the
Autism Spectrum Quarterlyand an autism consultant in Grand
Rapids, Mich. She has Asperger's.
So does Brian King, an Illinois-based relationship coach and
licensed clinical social worker. With the change, he said, "people
who have embraced the Asperger's label are now thinking, 'I have an
Asperger's support group. I call myself an Aspie. If you take that
from me, who am I?'"
It's not clear how many people have Asperger's. Estimates vary
anywhere from three in every 1,000 to one in every 200 people. But
experts say the impact of the change will be widespread.
In the United States,
DSMdiagnoses are closely aligned with health insurance
billing. Internationally, governments and social agencies use the
manual to approve funding for services and research.
"[The DSM] has repercussions throughout the world, especially the English-speaking world," said Tony Attwood, an adjunct professor at the Minds & Hearts clinic in Brisbane, Australia.
"I think the banning of the term Asperger's syndrome is too premature," Attwood said. "They're very upset [in Australia]. So they have to explain to, for example, employers, that they are now to be called autistic and have mild autism."
In October, APA member Lord published a study that found only
about 10 percent of children would lose their autism diagnosis
under the new criteria. Attwood, however, said estimates of people
who will lose funding eligibility range anywhere from 10 percent to
King said people who are not obviously struggling may lose
"If there is some kid in college who's an intellectual juggernaut -- they can pass socially, who can think his or her way through social situations -- but is so in need of services on campus, in need of accommodations, that's the person I'm worried about," King said. "The one who, underneath it all, is suffering, but is so good at passing that they're off the radar of a lot of diagnosticians."
For children with Asperger's, early intervention, which includes
parent training, is considered ideal. One question is whether early
intervention will be easier or harder to obtain under the new
"In California, for example, if you have an Asperger's diagnosis, you are not eligible for the autism services as a young child," Lord said. But Attwood said he's concerned that with the change, "parents may not be eligible for early intervention services before the child goes to school."
Lord said a family "must be ready if they meet someone who
doesn't understand the new criteria to be able to say, 'Look, one
principle is a lack of social reciprocity. And even though my son
is 12 years old and very bright and does go to school and does love
his teacher and does take turns well, he still really struggles
with ... understanding what a friend is even though he has play
dates and does do things.'"
Eric Lipshaw, 21, a student at Oakland University in Rochester,
Mich., is "110 percent" against the diagnosis change.
"I get disability support services, assistance on campus," Lipshaw said. "They give me a scribe for my handwriting -- that's illegible. They have note-takers and anything else we need."
Some job seekers with Asperger's turn to agencies that
specialize in people with disabilities. Other adults need social
security benefits or residential services. Some will lose these
services along with the Asperger's diagnosis, Attwood said.
Karen Rodman, president and founder of Families of Adults
Affected with Asperger's Syndrome, said although the Asperger's
DSM-4was inadequate it was better than not using the term at
Rodman, whose husband has Asperger's and Tourette syndrome, said
people with the diagnosis and their family caregivers already have
unmet needs for assistance that will only get worse with the
One undercurrent in the debate has been the suspicion that the
change was made to cut costs. Attwood and King both said that
although that might or might not have been an intention, it will be
"The medical insurance companies and other agencies will save money," Attwood said. "I can't say that this has been the driving force of the change; all I know is that this is the highly probable outcome. With fewer people being diagnosed, it's going to be less expensive for the agencies that support such individuals -- either government or private."
Some people with Asperger's may fit under "social communication
disorder" in the new
The manual also is adding "sensory sensitivity" to the autism
spectrum criterion. This involves extreme sensitivity to a person's
environment, including the touch of other people, the sensation of
the clothing they wear, and sights, smells and sounds around them.
Attwood praised this addition.
"The ultimate impact of the DSMis going to be wait-and-see," King said. "It's a guideline, not an absolute end-all and be-all of how to treat this. A clinician can use their own judgment based on their own experience."
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