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NY Times: New definition of Autism may cost many diagnosis and services and

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Ellen Garber Bronfeld

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NY Times: New definition of Autism may cost many diagnosis and services

and insurance coverage

NYT: Many may lose services and diagnosis More Info

With new Autism definition in DSM V

As we have been writing about for a year, the mainstream media has

picked up on the problems with the proposed new diagnostic criteria for the

Diagnostic and Statistical Manual V (DSM V), the definitive text psychiatrists

use to diagnose mental disorders. Including autism. The New York Times reports

on a new study using the DSM V criteria that resulted in 55% of the people

looked at no longer meeting the standards for an autism diagnosis. ( Article

below).

Any reasonable parent of a person with autism needs to wonder if

this proposed new criteria will be used to exclude our children from programs,

services and insurance coverage that we have fought so hard to get. And seems

that the answer is that it will, That is if it is adopted by the American

Psychiatric Association the publisher of the DSM. And that isn't a sure thing.

Criticism of the DSM V is extensive among psychiatrists and the wider community

who will be affected by the DSM.

Pay attention to this issue. It will be getting bigger, and you have

a direct stake in the outcome.

Gilmore, Autism Action Network executive director, was

interviewed along with Benedict Carey of the New York Timnes and Temple Grandin,

about the possible consequences of the DSM V on Friday by Hockenberry, on

the National Public Radio program " The Take Away. "

You can listen to the interview at this link:

http://www.thetakeaway.org/people/john-gilmore/

Here is the New York Times article:

January 19, 2012

New Definition of Autism Will Exclude Many, Study Suggests

By Benedict Carey

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 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, " 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. 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 Reichow and

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.

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