American Psychiatric Association...perhaps you can help?

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I was currently looking for information about the progress in the revision of the DSM-IV manual..(pretty disappointing to find that the new one is not coming out until 2012...these guys work slooooow .) But that does give us a larger window to try and make sure that adults with AS are being represented accurately..."maybe"....(I am a bit cynical as concerns that psychiatric community, not a great record based on past performance) . However, it is one of the major bases of funding, so we can't ignore them .

While on the APA site, I tried to do a search for Adult Aspergers..0 hits...adult autism...0 hits...etc. See what you can find. Perhaps there is a magic word to find the info...like..."Annoying people that we just don't like" ? Or..."Barada Niktu"

Anyway...it really pissed me off and I wrote them the following response...


As an adult female with Aspergers, I am pretty use to being invisible but find it very disheartening to come to this site and find 0 search results for.... Adult Aspergers .

I would suggest that the members of your community take the time to read the following information.


http://www.unstrange.com/essay.html


It is quit difficult to not become "paranoid, delusional and depressed" , when you find that an organization that is supposed to be responsible for the mental health issues of the community, appears blind to the reality of many in the community .

My current "paranoid delusion", is that because so many autistics have been previously ignored, misdiagnosed, inappropriately institutionalized and incorrectly medicated, the psychiatric community is embarrassed to admit their very existence . I am here to say..."The emperor has no clothes and as his ward-robe advisers, would you kindly advise him of such ?"

This is not just a matter of bad science and bad medicine, it runs to the very ethics of claiming to be a professional and more importantly, a human being sharing a responsibility to a large population of under-served(for the dyslexics among you...please not that is Under "served" and NOT undeserved), adults .

If you folks wish to continue to ignore the reality of current population of struggling adults with autism, would you kindly remove it from your diagnostic Manuel and turn the responsibility over to the neurologist who might better serve our needs ?




I would encourage others to consider responding...perhaps they are not intentionally ignoring us and we are just standing in their blind spot ?

If you search for "adult" and "Aspergers," I don't think you'll get any hits. Did you try it spelled "Asperger's" or just "Asperger"?

I tired several alternatives, I don't recall them all, but why should there be some magic phrase ? I wish every thing was as friendly as google .

I agree.

I appreciate what you're doing, but I'm so allergic to the psychologists/psychiatrists at this point that it's hard for me to pay them any mind.

While I agree with the sentiment and would love to ignore them as they have managed to do to us, I force myself because they get the money and decide where funding goes . I am managing to keep a float...(finally, at 45), but there are kids behind me that will be adults and many other adults who are currently homeless, institutionilized and killing themselves from lack of support . As much as I would like to write of the psychiatric community as the snake-oil sales men that to many of them are...they are holding the purse strings .

Thanks for reading anyway... Doesn't seem to be much interest in this issues in the community . Gotta say, I find that a bit disheartening as well . Looks like I will be heartless soon sad, that .

I actually came up with a bunch of hits for "adult Asperger's" on the APA website. One hit on the very first page was actually an article on adults with AS misdiagnosed as being schizophrenic, which was something addressed in the essay you linked to. Have you actually sent that message yet?- because you might want to change it. Another article on the first page contains this in the description: "Slightly under 1% of the population have autism and Asperger's syndrome. It is one of the most common missed diagnosis in adult psychiatry."

Could you provide me a link to the page you were on . Perhaps it is a browser issue...I am using IE, would that make a difference ? I did get two hits when I added the ' after Adult but still only finding two.

matching Adult Asperger's
Autism and Other Pervasive Developmental Disorders Conference (February 3-5, 2008)
posted: 8/15/2008 2:32:09 PM [html]
ABSTRACT: Summary of the Autism and Other Pervasive Developmental Disorders Conference
Obsessive Compulsive Spectrum Disorders Conference (June 20-22, 2006)
posted: 2/1/2008 3:52:55 PM [html]



As to my original letter to them...I don't care what they "think" about me and have no intention of rescinding it . I still think that their is a problem with their search engine as well as their lack of concern with adults with AS . Statistically speaking, there are more adults with autism then their are children and this is not reflected in the amount of information or research in this area . Sorry if you think my letter makes "autistics look crazy" but if I am so....they helped get me here .

They are psych.org, the psychologists are apa, something
I went formal, American Psychiatric Association, both come up.
The Psychiatric seem to be coming around to the idea there should be adult services, like help with jobs.
They do say lifetime and nothing to do about it after childhood, but something should be done to support adults.
Not much chance of that in this economy.

http://www.apa.org/results.html?cx=0047 ... search#958

There are 87 results in all.

Wait, are you on the American Psychiatric Association page instead of the American Psychological Association page? Because they don't seem to archive articles on their website- the American Psychological Association is the one with the journal. Even "autism" by itself only comes up with 23 hits on the American Psychiatric Association website, and those are mainly conferences and other random stuff, not journal articles.


Who are you quoting? No one said anything remotely like that, unless they deleted their comment.

Ok, Thanks for the link...they are two different web sites which would explain why we were getting different search results . I found the original site because I was looking at who is in "charge" of making a decision as to what goes into the new diagnostic manual . I will have to check out the link to the other site and see if they are contributing to the DSM-V , as the one that I was on seemed to find it just to confusiong to mess with 'adult" issue . I did read the conference info and it was pretty interesting . It appears that they are AWARE that there are adults on the spectrum but can't quite figure how we "fit" or what if anything to do about it .

I'm just following the money and that means who writes the rules for the new DSM-V . I don't know when you were Dxed but this certainly effects you now, as unlike people with most developmental disabilities, they seem to think that we "out grow" autism ...and thus any need for support or services . Rather contradictory if you consider how much they push early intervention and "treatment"...surely we would not require that if we can just "out grow" it all by ourselves ?

Anyway....*hops off soap box for the night" I will check out the other site, sounds like they are not in denial and I am hoping they have some influence in future input in the DSM-V (because some of us are not HFA enough to live independently and not every one has the option of living in their parents basement for the rest of our lives . )

You might enjoy this individuals perspective on the issue...

http://www.unstrange.com/essay.html

I think I have a bit of a "crush" on this guy right now .