PLEASE READ!! DSM-V Committee Protest- updated 1-20-12 & 1-22-12


UPDATE 1/25/2012  GRASP PETITION – Please sign!

Original post:

Email just received from Grasp. The changes in the DSM-V could very well mean my son would not qualify. It makes no sense. Take away the diagnosis because they are not prepared to accommodate everyone? A rose is still a rose. My son will still need accommodations! Please read, act & distribute!

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.
666 Broadway, Suite 825
New York, NY 10012
p + f = 1.888.474.7277
Link on GRASP facebook page
UPDATE: Please sign the petition (My first!)

UPDATE 1/20/12
email just received (updated on iPhone so if graphics wrong I apologize will fix later!)
Dear all:

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.

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.

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.
666 Broadway, Suite 825
New York, NY 10012
p + f = 1.888.474.7277
http://www.grasp.org

Update 1-22-2012

Dear all:
Thank you for the calls and the emails. We are having a positive effect, and with 10 months before the final version of the new DSM is due, we have a chance of reversing the Committee’s intentions of significantly reducing the numbers of those who would qualify for a diagnosis. Please keep it up starting Monday morning.
Once again, the New York Times is speculating that the new criteria would qualify only 76% of those currently diagnosed with classic autism, 24% of those currently diagnosed with Asperger’s, and 16% of those currently diagnosed with PDD-NOS. This means that:
• Children who do not qualify for a diagnosis under the new revisions will almost certainly be denied special education funding by their cities and states (after all, what school board will spend money on a child with no officialy recognized learning challenge?)
• Many adults on SSI, SSDI, or Disability who barely meet the criteria for these services may not have those services (and health coverage) anymore.
• We risk a possible return to the days of 1993 and prior where negative interpretations of behavioral differences were rather status quo.
The motivations behind these mind-boggling changes, are very much unclear to us. While the autism world in our current void of information is speculating a multitude of possibilities—the most dramatic being improper influence of insurance companies—we would urge people to continue pressing the DSM-V committee with the idea that the current committee members have experience only with the more-challenged end of the spectrum. None have any real experience with the end of the spectrum whose challenges are less physically-visible.
In addition to your talking points, and if you believe that the motivations are in any way fiscal, we urge you to remind the committee of how, in the big picture, the DSM-IV (which expanded spectrum diagnoses) saved us money. When you think of (though cannot estimate) the reduction in anxiety, anger, and depression, that was caused by legions of people finally understanding who they were—that they were wired differently, not rude . . . argue the mind-boggling cost of returning to those levels of anxiety, anger, and depression.
Responses
While in our last update, we conveyed the APA’s statement that they were not taking comments at the present time, committee members and other organizations are now starting to respond through either internal or external media. In general you should feel you have every right to respond to these responses. The two most frequently seen tones (followed by our suggestions) are follows:
1. “Well, yes, your child may not qualify for specialized education under the new criteria, but please bear with us. Our hope is that this will improve services for all.” They do not go on to explain how this is possible.
1R. Our no-brainer suggestion is to point out how senseless this response is. If they’re admitting that fewer will qualify, how does this improve chances of “improving services for all.” If your anger is getting the better of you, politely state that their response makes things worse because you feel your intelligence is being insulted.
2. These events are reviving the dormant “competition of suffering.” Many people (who likely have some connection to a significantly-challenged fellow spectrumite) across the country in facebook posts, tweets…etc. are proclaiming “Good! Autism needs to be less confusing. These (AS or PDD-NOS) people never should have been brought in to the spectrum equation.”
2R. Do not meet their hate with hate. The self-incriminating and emotionally-unhealthy nature of these attacks is the product of their being unable to grasp the complexity of the spectrum, or they are simply overwhelmed and underserved when compared with their needs. Yes, they may simply be bad people, but we won’t know that (and we have bad people too). As they invalidate the experiences of others, do not match their ugliness. If you must respond, something appropriate would be akin to “I find it so sad that you would deny help to someone else simply because you still need help (embellish with detail that perhaps pertains to your experiences).” Show them, do not tell them, how ill they were in the moment of writing.
Once again our facebook page is the best place to dig up prior developments. And once again, keep the calls coming. Call the American Psychiatric Association at             703.907.7300      . They will ask you not to call, but please keep calling. In addition, please email them at dsm5@psych.org and apa@psych.org (apologies: we misspelled the latter in our last correspondence).
Look for a survey from us soon too.
With massive thanks, we are
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
Help GRASP make a difference. Donate now by clicking the link below:
http://www.nycharities.org/donate/charitydonate.asp?ID=2223

DON’T Forget to sign petition (My first!)

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Comments

  1. I’m putting this up on my site right now and I will be making phone calls and sending letters. This is absurd! What the heck is wrong with these people? This is so wrong.

  2. Done. I’ve sent to all my tweeps and posted on my fb timeline. I will do all possible, thanks for bringing this out and to our attention!

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  1. […] (and thank you everyone who is RT and signing petition, more info here if you are like WTH is she talking about) Advertisement GA_googleAddAttr("AdOpt", "1"); […]

  2. […] I hope that the diagnostic criteria are used appropriately. But I am concerned enough based on what GRASP has said and that post contains numbers and emails to contact APA. I have also started a petition to keep […]

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