Re: Fw: NY Times: New definition of Autism may cost many diagnosis and services and insurance coverage

[Guest guest]

Will this new DSM model hit the moderate to severely autistic population also?

Mike Baker

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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