More On Asperger Syndrome

The Global and Regional Asperger Syndrome Partnership, Inc.
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

Living The Lie

Humans are an imaginative bunch. We can think all sorts of things beyond what actually exists. For that, we have been able to make certain improvements in our lives. We had to imagine automobiles and air planes before we had them. Our creativity has paid off in many respects. But, sometimes we lose our sense of realty when we think creatively. There are certain characteristics of humans that despite our desire to change them for the better, they cannot. I have had dreams in which I could fly just by willing myself to do so. But I never actually will be able to do so. The reality of physics prevents it. The reality of being human also prevents us from achieving Utopian ideals for society as well. There are some realities associated with being human (our frailty, and our obvious imperfections, to begin with) such as that prevent politicians, and really, any group of people from achieving true civility, compassion, and community, will always be with us. In the bible, such lack of perfection is referred to as "sin" - something we are born with, and something we will never be able to rid ourselves of.

The one big problem with striving to become a more civilized people is that at some point we reach our full potential of civility and yet still fall short of what we imagine we could be, we are less than completely civil. To compensate between what we are and what we hoped to be we begin telling ourselves little lies about how civil we are. We become two faced, saying one thing, and doing, being something else. Eventually we start believing those lies about our selves and how civil we "think" we are. And that leads us to such things as voting for someone like George W Bush, who declared himself "pro life" so to win votes necessary to achieve the most power position in the land, and yet he has more spilled blood on his hands than most any other human in recent memory. Even before becoming president he was Government over a state the the most executions in the country. The truth about him not actually being "pro life" was there for everyone to see, but the lies they've been telling themselves blinded them from the ugly truth.

The Christian Politician

There's a lot to talk about here regarding supposed Christian politicians. We could start with the separation of church and state. The founding fathers had seen the problems that come with a government heavily influenced by religion in England, and so they devised a government that purposely kept the two entities "church" and "state" separate. I also recall Jesus commanding his followers to make no oath to anything or anyone but Him. Seems to me that a true Christian would see a conflict of interest in following Jesus and being a politician.

And it wasn't just in England where this was a problem. The American colonies had some serious growing pains as well. The first colonies in America were governed by church folks, mostly divided between Catholics and Protestants. If you happened to be a Catholic in a Protestant colony, or vice versa, you'd either be forced to convert, or if you refused that, they'd burn you at the stake for being a heretic. Things just get ugly when religion begins influencing politics. And if you think such things could not happen today, just consider the Taliban, and what they are up to these days, beheadings and all.

NDAA National Defense Authorization Act

Any government that refuses to be held accountable to its people is a government that cannot be trusted. The whole point of having rules for detaining people for crimes outlined in the Constitution was to prevent this very thing from happening - holding people in jail indefinitely and without charge. This, my friends, is the end of The United States.