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Subject: New Definition of Autism Will Exclude Many, Study Suggests

New Definition of Autism Will Exclude Many, Study Suggests
http://www.nytimes.com/2012/01/20/health/research/new-autism-definition-woul
d-exclude-many-study-suggests.html?_r=1&pagewanted=all
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By BENEDICT CAREY
Published: January 19, 2012

 Proposed changes in the definition of autism would sharply reduce the
skyrocketing rate at which the disorder is diagnosed and might make it
harder for many people who would no longer meet the criteria to get health,
educational and social services, a new analysis suggests.

The definition is now being reassessed by an expert panel appointed by the
American Psychiatric Association, which is completing work on the fifth
edition of its Diagnostic and Statistical Manual of Mental Disorders, the
first major revision in 17 years. The D.S.M., as the manual is known, is
the standard reference for mental disorders, driving research, treatment
and insurance decisions. Most experts expect that the new manual will
narrow the criteria for autism; the question is how sharply.

 The results of the new analysis are preliminary, but they offer the most
drastic estimate of how tightening the criteria for autism could affect the
rate of diagnosis. For years, many experts have privately contended that
the vagueness of the current criteria for autism and related disorders like
Asperger syndrome was contributing to the increase in the rate of diagnoses
- which has ballooned to one child in 100, according to some estimates.

 The psychiatrists' association is wrestling with one of the most
agonizing questions in mental health - where to draw the line between
unusual and abnormal - and its decisions are sure to be wrenching for some
families. At a time when school budgets for special education are
stretched, the new diagnosis could herald more pitched battles. Tens of
thousands of people receive state-backed services to help offset the
disorders' disabling effects, which include sometimes severe learning and
social problems, and the diagnosis is in many ways central to their lives.
Close networks of parents have bonded over common experiences with
children; and the children, too, may grow to find a sense of their own
identity in their struggle with the disorder.

 The proposed changes would probably exclude people with a diagnosis who
were higher functioning. "I'm very concerned about the change in diagnosis,
because I wonder if my daughter would even qualify," said Mary Meyer of
Ramsey, N.J. A diagnosis of Asperger syndrome was crucial to helping her
daughter, who is 37, gain access to services that have helped tremendously.
"She's on disability, which is partly based on the Asperger's; and I'm
hoping to get her into supportive housing, which also depends on her
diagnosis."

 The new analysis, presented Thursday at a meeting of the Icelandic
Medical Association, opens a debate about just how many people the proposed
diagnosis would affect.

 The changes would narrow the diagnosis so much that it could effectively
end the autism surge, said Dr. Fred R. Volkmar, director of the Child Study
Center at the Yale School of Medicine and an author of the new analysis of
the proposal. "We would nip it in the bud."

 Experts working for the Psychiatric Association on the manual's new
definition - a group from which Dr. Volkmar resigned early on - strongly
disagree about the proposed changes' impact. "I don't know how they're
getting those numbers," Catherine Lord, a member of the task force working
on the diagnosis, said about Dr. Volkmar's report.

 Previous projections have concluded that far fewer people would be
excluded under the change, said Dr. Lord, director of the Institute for
Brain Development, a joint project of NewYork-Presbyterian Hospital, Weill
Medical College of Cornell University, Columbia University Medical Center
and the New York Center for Autism.

 Disagreement about the effect of the new definition will almost certainly
increase scrutiny of the finer points of the psychiatric association's
changes to the manual. The revisions are about 90 percent complete and will
be final by December, according to Dr. David J. Kupfer, a professor of
psychiatry at the University of Pittsburgh and chairman of the task force
making the revisions.

 At least a million children and adults have a diagnosis of autism or a
related disorder, like Asperger syndrome or "pervasive developmental
disorder, not otherwise specified," also known as P.D.D.-N.O.S. People with
Asperger's or P.D.D.-N.O.S. endure some of the same social struggles as
those with autism but do not meet the definition for the full-blown
version. The proposed change would consolidate all three diagnoses under
one category, autism spectrum disorder, eliminating Asperger syndrome and
P.D.D.-N.O.S. from the manual. Under the current criteria, a person can
qualify for the diagnosis by exhibiting 6 or more of 12 behaviors; under
the proposed definition, the person would have to exhibit 3 deficits in
social interaction and communication and at least 2 repetitive behaviors, a
much narrower menu.

 Dr. Kupfer said the changes were an attempt to clarify these variations
and put them under one name. Some advocates have been concerned about the
proposed changes.

 "Our fear is that we are going to take a big step backward," said Lori
Shery, president of the Asperger Syndrome Education Network. "If clinicians
say, 'These kids don't fit the criteria for an autism spectrum diagnosis,'
they are not going to get the supports and services they need, and they're
going to experience failure."

 Mark Roithmayr, president of the advocacy organization Autism Speaks,
said that the proposed diagnosis should bring needed clarity but that the
effect it would have on services was not yet clear. "We need to carefully
monitor the impact of these diagnostic changes on access to services and
ensure that no one is being denied the services they need," Mr. Roithmayr
said by e-mail. "Some treatments and services are driven solely by a
person's diagnosis, while other services may depend on other criteria such
as age, I.Q. level or medical history."

 In the new analysis, Dr. Volkmar, along with Brian Reichow and James
McPartland, both at Yale, used data from a large 1993 study that served as
the basis for the current criteria. They focused on 372 children and adults
who were among the highest functioning and found that overall, only 45
percent of them would qualify for the proposed autism spectrum diagnosis
now under review.

 The focus on a high-functioning group may have slightly exaggerated that
percentage, the authors acknowledge. The likelihood of being left out under
the new definition depended on the original diagnosis: about a quarter of
those identified with classic autism in 1993 would not be so identified
under the proposed criteria; about three-quarters of those with Asperger
syndrome would not qualify; and 85 percent of those with P.D.D.-N.O.S.
would not.

 Dr. Volkmar presented the preliminary findings on Thursday. The
researchers will publish a broader analysis, based on a larger and more
representative sample of 1,000 cases, later this year. Dr. Volkmar said
that although the proposed diagnosis would be for disorders on a spectrum
and implies a broader net, it focuses tightly on "classically autistic"
children on the more severe end of the scale. "The major impact here is on
the more cognitively able," he said.

 Dr. Lord said that the study numbers are probably exaggerated because the
research team relied on old data, collected by doctors who were not aware
of what kinds of behaviors the proposed definition requires. "It's not that
the behaviors didn't exist, but that they weren't even asking about them -
they wouldn't show up at all in the data," Dr. Lord said.

 Dr. Volkmar acknowledged as much but said that problems transferring the
data could not account for the large differences in rates.