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Contact the DSM-V Committee to Protest the Newest Changes - Ken G. - 01-20-2012 02:33 PM
Start of quoted massage from GRASP:
===
Please forward to whomever you deem appropriate…
Dear all:
There is breaking news regarding the forthcoming fifth edition of the Diagnostic and Statistical Manual (DSM-V), which is due out in early 2013.
Spectrum individuals who are better able to mirror greater society will most likely not qualify for a diagnosis under the most recent revisions. Please contact the DSM-V committee through the American Psychiatric Association (see below) and protest their newest proposed changes.
Though our membership was split on the subject, GRASP supported the changes in terminology that were first reported almost two years ago. Eliminating the diagnosis of Asperger’s Syndrome (AS) (as well as Pervasive Developmental Disorder-Not Otherwise Specified), and putting everything under the umbrella of “autism” was jarring, as many of us have gotten used to the term “AS” to explain certain aspects of our identity. But seeing as no discernible line in the sand could be drawn that truly separated AS from autism (though the clinical world tried), the merger made theoretical sense. Furthermore, any spectrum diagnosis, in essence, served us well enough as it placed our behavioral differences within the context of wiring, and not through the judgmental lens of interpreted character deficits—as had existed before AS was legitimized in the DSM-IV in 1994.
But sadly, we may be heading back to the days of character deficits. Now it appears that the terminology is not all that will change with the DSM-V. Now, it appears that only the more severe cases will qualify for diagnosis or services.
In a report being published in tomorrow’s New York Times, the DSM-V committee appears to be acting in consort with clinicians who believe there is a presence of “over-diagnosis” of spectrum conditions in the U.S. While the clinical world was merely adhering to the requirements proposed in 1994’s DSM-IV, the DSM-V committee inexplicably seems to want to reverse the clock back to 1993, simply because the social services, educational, and advocacy worlds are not yet able to accommodate the numbers of people who are on the spectrum. Oddly enough, we believe that the majority of the clinical world does not believe in problems of “over-diagnosis,” and that the DSM committee surprisingly represents a minority opinion (most, if not all members of the committee have worked exclusively with only the more challenged end of the spectrum). Lastly, the ideas of “over-diagnosis” are almost always heard through bitter, emotionally-unhealthy tones; revealed as theories that are usually the product of people too afraid to admit how dumb we all were prior to 1994.
Suspiciously, the DSM-V committee has released these changes one month after taking away the opportunity for us to make comments (through their website) to proposed revisions. In lieu of the means to write them, please instead call the DSM authors, the American Psychiatric Association, at 703.907.7300 and tell them that you object to these changes. Not only will tens of thousands of spectrumites—if not more—be at risk for going back to the days when we were thought of as rude, nervous, or incompetent; but equal numbers of spectrumites will happily be denied the services they need by financially-strapped agencies. Fiscal concerns cannot be invalidated, but this is not the answer.
It is very hard for many to understand how diverse, and how complicated the autism spectrum really is. But to have what should be the leaders of our clinical world (a) subtley waging a competition of suffering between opposite ends of the spectrum, by invalidating the negative experiences of one side, and (b) succumbing to such a dumbing-down of the autism spectrum, if not knowledge itself, is unconscionable. Please make that call.
Sincerely,
Michael John Carley
Executive Director
GRASP
The Global and Regional Asperger Syndrome Partnership, Inc.
http://www.grasp.org
===
End of quoted message from GRASP
RE: Contact the DSM-V Committee to Protest the Newest Changes - Yuji - 01-20-2012 04:53 PM
Right on! Dr. Fred Volkmar and others seem to be more interested in "ending the epidemic" (through artificial means) than providing essential services to individuals and families in need. Frankly, we should expect more from the medical establishment.
RE: Contact the DSM-V Committee to Protest the Newest Changes - Amplexus - 01-20-2012 11:56 PM
Does this mean that people may lose their dx?
RE: Contact the DSM-V Committee to Protest the Newest Changes - League Girl - 01-21-2012 01:02 AM
I think here is what needs to happen: Places need to start offering the same support to everyone with a disability or some sort of impairment and services also need to offer the same help to everyone who has a disability or some sort of impairment. That way people wouldn't be pancaking over this and doctors wouldn't have to mislabel kids and adults with autism just so they can get the proper help they need because they had traits and didn't have enough to actually meet the criteria. I don't know if they actually had autistic traits and doctors just handed them that autism label anyway so the parents can get their kids the help and support they need because there is no support to help them with their issues if they were given the right label.
RE: Contact the DSM-V Committee to Protest the Newest Changes - skyblue1 - 01-21-2012 01:45 AM
thanks for psoting this Ken G.
RE: Contact the DSM-V Committee to Protest the Newest Changes - Ken G. - 01-21-2012 02:06 PM
Amplexus Wrote:
Does this mean that people may lose their dx?
Yes. It means 75% of those who are currently diagnosed with Asperger Syndrome would no longer qualify for an Autism Spectrum diagnosis.
RE: Contact the DSM-V Committee to Protest the Newest Changes - Ken G. - 01-21-2012 02:08 PM
Start of quoted message from GRASP:
===
Many thanks to those of you who have contacted the DSM-V Committee at the American Psychiatric Association (APA) to protest the newest proposed changes. We understand that the APA has been asking callers to instead direct their complaints by email. We would urge folks to continue calling 703.907.7300...AND email the APA at both dsm5@psych.org and apa@pstch.org.
Two updates:
1. The New York Times has released the following chart regarding the percentages of folks who will not qualify for a diagnosis under these revisions. For the full article please click here:
http://www.nytimes.com/interactive/2012/01/20/us/redefining-autism.html
2. The APA contacted GRASP with a statement in response to our posts, and to the media outlets that have been quoting us. We felt the statement was disappointing, and our response follows:
APA: "American Psychiatric Association The 2nd commenting period was not the final opportunity for you to submit feedback. In spring 2012, we will open the site for a third and final round of comments from visitors, which will again be systematically reviewed by each of the work groups for consideration of additional changes. More at http://www.dsm5.org "
GRASP: "Dear APA, when you release information of this kind, you need to provide an opportunity for people to respond to the information. By installing a window of 2-5 months between the release of these changes, and when you are willing to listen to comments regarding the changes...is disingenuous at best. Sadly, this only increases everyone's present distrust in you. Now, in addition to making horrific changes, it seems that you are making horrific decisions about how to implement these changes."
For further and quicker updates please consult our facebook page by clicking here:
http://www.facebook.com/GRASP2003
Thanks for being there, y'all. There's still time to change this.
Yours,
Michael John Carley
Executive Director
GRASP
The Global and Regional Asperger Syndrome Partnership, Inc.
http://www.grasp.org
===
End of quoted message from GRASP
RE: Contact the DSM-V Committee to Protest the Newest Changes - windy - 01-21-2012 06:22 PM
Ken, what do you know (in the US) about the DDD , department of developmental disabilites and how the dsm V will affect status?
Department of Human Services
http://www.state.nj.us/humanservices/ddd/services/apply/application.html
I just learned about the existance of this department as I was told specifically to look into it for our son (Before he is 18 apparently).
RE: Contact the DSM-V Committee to Protest the Newest Changes - Ken G. - 01-22-2012 02:28 PM
windy Wrote:
Ken, what do you know (in the US) about the DDD
Absolutely nothing.
RE: Contact the DSM-V Committee to Protest the Newest Changes - Earth Mum - 01-22-2012 11:03 PM
Oh well...we'll always have AD(H)D left. I actually found the whole diagnosis process a circus. Not that I would know of anything better. I shouldn't complain really as diagnosis has got us the help we needed. But I see some of my son's friends who could have done with some help too, and who maybe needed it even more than he did, and who got nothing because they didn't fit any (or enough) diagnostic criteria.
Maybe help should be given according to need and not according to diagnosis.
RE: Contact the DSM-V Committee to Protest the Newest Changes - Gedrene - 01-22-2012 11:11 PM
Earth Mum Wrote:
Oh well...we'll always have AD(H)D left. I actually found the whole diagnosis process a circus. Not that I would know of anything better. I shouldn't complain really as diagnosis has got us the help we needed. But I see some of my son's friends who could have done with some help too, and who maybe needed it even more than he did, and who got nothing because they didn't fit any (or enough) diagnostic criteria.
Maybe help should be given according to need and not according to diagnosis.
Maybe help should be given according to need and not according to diagnosis.
At some point people will actually deal with the diagnostic system with a full biological basis and not on symptoms that can occur in a smogasbord of psychological and biological states.
RE: Contact the DSM-V Committee to Protest the Newest Changes - AspieDaddy - 01-31-2012 05:02 AM
I don't know if anyone did this yet, but I compiled the address information for the work group covering Asperger's (or elimination of it) in the DSM-5. Maybe this can help some people out in contacting those who may have our fates in their hands.
DSM-5 Development
Neurodevelopmental Disorder Work Group
Address Information
Susan Elizabeth Anderson Swedo, MD
Chief, Pediatrics & Developmental Neuroscience Branch, NIMH
10 Center Drive
Bethesda MD 20892-0001
Baird, Gillian, MA, MB, B Chir, FRCPCH, DCH
Unable to locate address
Edwin Haynes Cook, MD
Professor of Psychiatry
1747 W Roosevelt Rd Ste 155
Chicago IL 60608-1264
Francesca Happe, PhD
Professor of Cognitive Neuroscience
University of London
Denmark Hill
London
SE5 8RX
United Kingdom
James C Harris M.D.
Director Developmental Neuropsychiatry Clinic
3704 N Charles St Unit 105
Baltimore MD 21218-2310
Walter Kaufmann, MD
716 N Broadway
Baltimore MD 21205-1806
Bryan H King, MD
Professor and Vice Chair of Psychiatry and Behavioral Sciences
University Of Washington Medical Center
1959 Northeast Pacific Street
Seattle WA 98195-0001
Catherine Lord, PhD
Professor of Psychology, Psychiatry and Pediatrics and Director, UMACC
1111 E. Catherine St.
Ann Arbor MI 48109-2054
Joseph Piven M.D.
Sarah Graham Kenan Professor of Psychiatry, Pediatrics and Psychology
Campus Box 7255
Chapel Hill NC 27599-7255
Sally Rogers
Professor of Psychiatry & Behavioral Sciences
2825 50th Street
Sacramento CA 95817
Sarah Jane Spence, MD, PhD
Assistant Professor
Harvard Medical School
300 Longwood Ave
Boston, MA 02115
Amy Wetherby
Professor
Department of Clinical Sciences
Florida State University
222 S Copeland St.
Tallahassee FL 32306-7814
Harry H Wright, MD
Professor of Neuropsychiatry
3555 Harden Street Ext Ste 301
Columbia SC 29203-6894
Almost all of this info was gleaned from this website.
RE: Contact the DSM-V Committee to Protest the Newest Changes - tintinophile691 - 01-31-2012 03:21 PM
It's very difficult to locate the petition one could sign - I had to scroll down on Facebook to see it.
For everyone else's convenience, the link to the petition is here: http://www.change.org/petitions/dsm-5-committee-dont-reduce-the-criteria-for-an-autism-spectrum-condition-in-the-dsm-5