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.


Michael John Carley
Executive Director
The Global and Regional Asperger Syndrome Partnership, Inc.
End of quoted message from GRASP

from a post by Ken G.