Update on the DSM-V

[LovedSparrow]

Hi all,
This is an update to the proposed changes to the new DSM-V. A panel wants to change the diagnostic criteria for autism. A lot of people are afraid that they will lose their diagnosis with the new criteria, and many kids and adults will lose funding because of it. The panel says that they feel too many people are getting diagnosed with autism, and that it is too much of a financial burden to get a diagnosis. (If you have questions, I have posted a few other threads that will help explain it. These are updates to my previous posts).

Are these updates I'm giving helpful at all?

LovedSparrow
If you disagree with the changes, you can sign a petition at GRASP's website: http://www.change.org/petitions/dsm...for-an-autism-spectrum-condition-in-the-dsm-5
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This is the changes they'll make to Aspberger's: Why fold Asperger syndrome into autism spectrum disorder in the DSM-5? — SFARI

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Here is a new rebuttal from the American Psychiatric Association (the panel who wants to change the diagnosis). They know that they will cause a lot of devastation with loss of funding:

Dear concerned respondent to the DSM-5 Autism proposal:
Thank you for contacting the American Psychiatric Association with your thoughts about the diagnosis of Autism Spectrum Disorder (ASD) proposed for DSM-5. We at APA have been and will continue to be advocates for a full range of services for people with autism and all other neurodevelopmental disorders. We understand the devastating impact that discontinuation of services can have on patients and families. We also recognize that services are determined not just by a diagnosis but also by the severity of symptoms and needs in areas such as education, social skills, activities of daily living, and maintaining personal safety. Even if an individual's diagnosis changes, this does not invalidate the treatments and other services that have worked for him/her, and these services should be continued based on need.



The new proposed criteria for ASD in the DSM are intended to improve the accuracy of diagnosing the disorders currently known as autistic disorder, Asperger's disorder, childhood disintegrative disorder, and pervasive developmental disorder not otherwise specified. The proposal is based on years of accumulated clinical, epidemiological, and neuroscience research which was thoroughly examined by the members of the DSM-5 work group on Neurodevelopmental Disorders. Most of the work group members are also clinicians who see patients with these disorders, and the proposal was developed with clinicians and their patients in mind.



There are clinical and scientific reasons for improving the accuracy of diagnoses. All patients should have an accurate diagnosis based on the most up-to-date clinical and scientific knowledge available. A more accurate diagnosis will help clinicians and other service providers target available treatments and rehabilitation methods for their patients. In addition, it is important to note that patients whose symptoms no longer meet diagnostic criteria for the DSM-5 ASD diagnosis will very likely meet the criteria for one or more other diagnoses-for example, a communication disorder, for which interventions are available. From a scientific standpoint, more accurate diagnoses will also help guide research into the causes of the neurodevelopmental disorders and the development of new treatments. An informative article written by a work group member, Dr. Francesca Happé, on the changes to Asperger's disorder can be found on the Simons Foundation Autism Research Initiative website:http://sfari.org/news-and-opinion/viewpoint/2011/why-fold-asperger-syndrome-into-autism-spectrum-disorder-in-the-dsm-5.
We are hopeful that continuing advances in research, diagnosis and treatment will help us devise better ways to treat autism and to reduce the devastating effect it has on individuals and families. We invite you to visit the DSM-5 Web site at www.dsm5.org where further information on ASD is available under the "Proposed Revisions" tab. This Web site will be revised and opened for public comment for a third a final time late this spring. Once again, thank you for your input.
David Kupfer, M.D.
Chair, DSM-5 Task Force
Darrel Regier, M.D., M.P.H.
Vice-Chair, DSM-5 Task Force

 

[Autocannibal]

It's good that you're posting these updates.

I realize their point of view from a scientific standpoint. It does aid in science to define autism more narrowly, and the distinction between Asperger's and autism is largely superficial.

That being said, erring on the side of excluding people from diagnosis has clinical downsides, and I tend to think that these new criteria were written more by scientists than by clinicians.

 

[LovedSparrow]

Please forward far and wide to whomever or wherever you deem appropriate . . .

Dear all:

Oh, brother . . .

Four updates to cover:
1. Dr. Catherine Lord's astounding statement, and her new campaign slogan
2. Dr. David Kupfer's attempts (alongside Dr. Darrel Regier) to pretend Kupfer's previous statement never happened.
3. Why a "5" and not a "V"?
4. Everyone's (Lord and Regier especially) trying their best to attack Fred Volkmar. But wherrrre's Johnny?

Rather than take a breath and attempt with honesty to rectify the disingenuous damage control following the Jan. 19 outbreak of this story, Committee members, three in particular, are creating more damage to any potential peace-building. Furthermore, don't think for a moment that the shift from the roman numerical system to the Arabic system isn't fascinating—and self-incriminating when put under a microscope. Lastly, we present an email exchange (leaked to GRASP) between Volkmar, Hartford Courant reporter William Weir, and Committee member Dr. Regier. The exchange indicates that a large part of any criticism of Volkmar's study may be personal, and not professional.

At least Committee member Dr. Bryan H. King, after that tragically disingenuous article in Medscape (that insulted us all), knew enough of what he'd done, or tried to do, as he has been thankfully silent ever since.

1. Dr. Catherine Lord's astounding statement, and her new campaign slogan

We made the decision not to advertise a ridiculous statement made by Dr. Catherine Lord in a late January appearance on the CBS This Morning News Show, where 1 minute into the broadcast she states that “It is possible that kids grow out of (autism). And not everyone who gets a diagnosis of autism continues to have it forever.” Later on in the segment, she goes even further to state that the number of those who "outgrow" their autism is 10-20 percent. Needless to say, we were astounded (such a backwards thought sounds like something Andrew Wakefield would say). Yet we didn't want to demonize any of the personalities on the Committee. But now Dr. Lord is assuming the role of DSM-5 Committee spokesperson, and not doing a very reassuring job. She talks of science. But in addition to no proof of this "overdiagnosis" problem they keep throwing at us, where's the proof that we "grow out" of autism? Why would they invalidate the great support work done by teachers or families or colleagues or friends . . .the quality of supports that allows us to navigate better as time goes on?

But Dr. Lord has now found her voice. Now, in almost every interview she attempts to downplay the severity of people's experiences with the statement (in differing phrases) of "We can't diagnose everyone in the world with autism." Most recently this came in a WBUR interview, as well as several prior press appearances. So if we're going to be hearing this as Dr. Lord's mantra, please always counter that this statement implies the overdiagnosis theory, which has not been proven, and which most clinicians we know have not seen except in rare cases.

2. Dr. David Kupfer's attempts (alongside Dr. Darrel Regier) to pretend his previous statement never happened.

Those of you who've written lately to the DSM-5 Committee are receiving a new response from Dr. David Kupfer and Dr. Darrel Regier in which they state, among other things, "

"We at APA have been and will continue to be advocates for a full range of services for people with autism and all other neurodevelopmental disorders. We understand the devastating impact that discontinuation of services can have on patients and families. We also recognize that services are determined not just by a diagnosis but also by the severity of symptoms and needs in areas such as education, social skills, activities of daily living, and maintaining personal safety. Even if an individual's diagnosis changes, this does not invalidate the treatments and other services that have worked for him/her, and these services should be continued based on need."

This, however, is a far cry from an earlier New York Times article where Kupfer was quoted as saying, “We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder . . . It involves a use of treatment resources. It becomes a cost issue.”

Again, whether true or not true (and in the long run, we feel not true), Kupfer's earlier statement bitterly insinuates that the Committee is taking costs into consideration. They are in charge of our emotional and mental well being for as long as this book is in print. They are not in charge of anyone's budget.

And this response is a poor attempt to backtrack from what was perhaps the more honest statement.


3. Why a "5" and not a "V"?

A great editorial from Bloomberg News recently reminds us that the reasons for changing the coding system for DSM editions is that with the fifth edition they plan on doing revisions of the same edition, so that we would eventually see version 5.1, 5.2...etc., which you can't do with a "V." The editorial makes a great point in that if you KNOW you're not going to get it right the first time with this new edition, don't put in print.


4. Everyone's (Lord and Regier especially) trying their best to attack Fred Volkmar, but wherrrre's Johnny?

Catherine Lord takes any chance she gets to go after Fred Volkmar's study which initially touched off this whole story in the New York Times. And the consistency of her diatribes suggests personal anger perhaps stemming from when Volkmar resigned from the DSM-5 Committee. To be fair, Volkmar's study IS the reason why the DSM-5 Committee is so under fire right now. But if Lord were acting as a professional, and not as if she were caught in a lie (that Volkmar exposed), we'd have to guess that she would be solely defending her work, and proving to people that her earlier statements that we should trust the Committee because everything was fine . . . was true. Committee members have had professional disagreements before, and this time the responsive behavior is vastly different.

The email exchange that GRASP obtained is not revelatory in a news sense, but it is another example of Committee members acting on their own, without communication with each other, and with a disappointing pettiness that renders us incapable of trusting them. Again, how can they be in charge of our emotional status when they can't even regulate their own?

And as to who's right and who's wrong? Well, the Louisiana State University Dr. John Matson/Dr. Julie Worley study that GRASP obtained and quoted, rather corroborates Volkmar's numbers (32.3% in Matson/Worley vs. a rough 40% in Volkmar, citing how many would qualify under the DSM-IV for a spectrum diagnosis, but not the DSM-5). But notice that Committee members aren't attacking the Matson/Worley study.

---There is a series of e-mails between two people in this spot, I omitted them for length sake, pm me if you want to read them. They're between the one who resigned was highly against changing the DSM-V. (LovedSparrow)
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Once again...

If reducing the DSM-5 criteria threatens your child's special education funding, your services as an adult, or your self-esteem as an adult, then please maintain the following outline without letup:

1. Sign the GRASP petition found here, and forward the link with your appeal for people to sign everywhere and anywhere. Again: forwarding (especially through any and all appropriate social media sites) is arguably more important than signing. So when you ask people to sign, ask them to forward as well.

2. Call the American Psychiatric Association (APA)—during normal business hours; once every day, if possible, at 703.907.7300. Yes, they are telling you to email instead. But we ask that you please instead be the articulate, impassioned, and peaceful nuisance that is needed in this debate, and not adhere to their instructions.

3. Email the your letters to apa@psych.org and to dsm5@psych.org

4. Check GRASP's Facebook page for updates, as well as to view the history and prior articles surrounding this issue since it broke on January 19th. This is especially helpful for those of you who feel you need talking points for your emails to the APA.

Yours, y'all,

Michael John Carley
Executive Director
GRASP
The Global and Regional Asperger Syndrome Partnership, Inc.
666 Broadway, Suite 825
New York, NY 10012
p + f = 1.888.474.7277
GRASP

 

[LovedSparrow]

Autocannibal-
Thank you for letting me know they were helpful! I was wondering if they were helpful to people.

I agree with you. It is more of a science-based diagnosis. I think the panel here really don't know anyone with autism, or don't seem to care how many people it will affect. They've said from the beginning that it is a cost issue (too expensive to diagnose), and 'too many people are getting diagnosed.' I think the man who said the cost issue statement recanted it too.