Contact the DSM-V Committee to Protest the Newest Changes

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Start of quoted massage from GRASP:
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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.
www.grasp.org
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End of quoted message from GRASP

Hi Ken. Glad our paths cross again.
This is a very worrying development.
However, I'm v grateful for you in
bringing it
to my attention.

Chris.

I find it curious how all these anti-DSM changes articles or websites never actually go into what changes they have an issue with. Yes they are taking the term Aspergers Syndrome out, people with Aspergers Syndrome will simply just be on the autism spectrum since AS is well a form of autism. From what I've heard about what these actual changes are it actually makes a lot of sense.

Aspergers does not say anything anyways its just the name of the guy who discovered it, but its still autism so in the new DSM it will just be a spectrum with different levels of severity and such. Its not going to make the definition so narrow that people with AS don't fit on the spectrum anymore.

http://www.cbsnews.com/8301-504763_162- ... aspergers/

TheSunAlsoRises


My focus isn't upon the name Aspergers or PDD-NOS.

My focus is upon the subtle yet stark changes in the DSM V criteria for Autism THAT will exclude a significant number of people with Aspergers ,High Functioning Autism, and PDD-NOS and as a result prevent them from receiving needed services, period. I do NOT for one moment believe THAT this is simply a merging of Autism disorders due to conceptual refinement and clarity. In my opinion, it is a symbolic and literal removal of two disorders, Aspergers and PDD-NOS, THAT the scientific community knows FAR LESS about THAN they do AUTISM. The removal of the outlier Aspergers and the more commonly diagnosed PDD-NOS from official consideration will aid researchers in establishing a more succinct , shorter, and narrower interpretation of the autism spectrum. And, I believe in doing this, many of the erroneous theories and misconceptions of Autism will become validated and re-inforced.




TheSunAlsoRises

Last edited by TheSunAlsoRises on 20 Jan 2012, 12:37 pm, edited 1 time in total.

all that did was prove my point, even that has no specific issues with the change.........other then that the word Aspergers won't be in the DSM anymore and people with Aspergers will simply be considered on the autism spectrum like they SHOULD be. Also, I am not going to go by what the new york times say over what I actually learned in abnormal psychology and the discussion we had about these changes in that class.

I don't need the New York Times article to form an opinion. I cited it for reference purposes, only. I can see IT.

TheSunAlsoRises

-Autism Speaks
In 20 minutes Dr. Andy Shih will be live on msnbc "News Nation with Tamron Hall” discussing the DSM-5! Check your local listings! 2:30pm EST


-Then, please join us for a live web chat at 3 pm with Autism Speaks Chief Science Officer Dr. Geraldine Dawson and Vice President of Family Services Lisa Goring at 3 pm EST – click on the tab to the left! Facebook


-Tonight – don’t miss Dr. Dawson on NBC Nightly News with Brian Williams (6:30pm ET — check local listings)


Might be worth checking out.

TheSunAlsoRises

I agree with Sweetleaf. The OP claims that there have been further, radical changes to the proposed revisions made since the close of the consultation period, and it is these most recent changes that they would like people to protest about.

What are these most recent revisions, and how do they differ from the proposed revisions which have been endlessly discussed here and elsewhere?

"Autistics Protest Against Change"

I understand 'why' they made the changes THEY made; i simply believe that the end result will be a narrower representation, decline in research and reduction in services for those
on the so-called high end of the spectrum.

BUT, we shall see. I suspect once certain amenities are cutoff for those who have become accustomed to them; the cry of outrage will become loud and clear.

Instead of piece wising a solution together, there needs to be a concerted effort to extend some of these baby sibs studies along the life span in order to document the psychological, biological, and sociological development of those with ASDs. In doing so, i guaran-damn-tee you THAT you will see differences yet similarities in developmental trajectories among those with an ASD.

TheSunAlsoRises

I think people don't like the new severity scale.

But, as I said elsewhere, I doubt you'll find a person with AS now who can function like their peers without professional support in place. If you can, well, there's no point in getting a medical diagnosis.

Start of quoted message from GRASP:
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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 [email protected] and [email protected].

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 ... utism.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

They don't provide any reasons, other than a neat little chart.

Said institution might diagnose people differently than what the DSM-IV-TR intends (said researchers might only use a single study, for example), for example, or they might be absolutely right.

The rational for the DSM-5 was to get everyone under the single label, who currently have a diagnosis from the DSM-IV-TR. The one bit that's more difficult to meet, requiring 3 of 3 in the social domain instead of 2 of 4, might be more accurate (is there anyone with AS who doesn't have problems with social reciprocity, nonverbal cues and trouble making friends? I highly doubt it).

Specific changes that are harmful:

1. You now need all of the social deficit criteria, though now it has been reworded so it has some severity scale elements.

2. You now need two instead of one criteria for repetion.

3. You now need daily impairment, instead of just clinically significant impairment.

If I read this correctly a lot of people who need support will not get it.

The repetitive behaviors criteria aren't that bad though. The special interest + sensory problems seems to be universal for AS (read Hans' paper, for example); there's 2 of the 4. I'm sure an adherence/preference for routine is universal too.

Clinically significant impairment can mean the same thing as daily impairment; if you have a lifelong disorder that's clinically significant, it's always going to be, unless you improve enough to not need the label anymore (rarely happens, but it does).

The social domain is spot on in regards to Hans' and Wing's papers.

My son was diagnosed with Asperger's under the WHO ICD-10 criteria. He is a bright, articulate boy who is doing well at his mainstream school. He could, I suppose, be considered part of the "high functioning" group which, it is being claimed, would not be diagnosed under the new DSM V.

However, that is not the case. I have compared the information provided in his assessment report with the revised DSM criteria, and he not only meets the minimum required, but actually meets all the criteria.