Afraid of being eradicated by DSM-V

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Hello Folks:

I know this topic has most likely been talked to death, but I met with my therapist today and voiced my concern about the elimination of Asperger's (my diagnosis) from the upcoming DSM-V. I told her I was frightened that this was going to occur and tried to explain the importance of having a name for what "it" is. For so long in my life I knew something was wrong. Depression was a part of the puzzle, but not the complete picture. OCD was another piece, one that got me on SSDI disability when I needed it. But it did not present the finished answer to why I was having so many problems. Finally someone suggested I might have AS. The more i read about it the more I felt this was the missing piece of my puzzle, the holy grail for me. It explains my behavior and unusual nature. Unfortunately, due to my obsessiveness, I am very hung up on nomenclature or names. I like something to have a name. Now "they" are telling us that Asperger's will be no more. Will I still fit into the spectrum as I do now? I like the culture of Asperger's and proudly identify myself an aspie.

My therapist (whom I like a great deal and she has a son with Asperger's) said that with or without a name I would still be the same person. True....but I still hate the idea of an entire wealth of ideas and marvelous things known as Aspergers to be gone. It just rankles me a lot. I know my therapist is right, but for most of my life people thought they had the right names for me and now Aspergers answers so mnay questions. I dont wish to lose aspie culture and think this should have been taken into consideration when revamping the DSM. I am just frustrated and somewhat angry about the whole subject. Any ideas? Thanks for listening friends.

Darren

If you have Asperger's you have an autism spectrum disorder. There will still be a name for what "it' is, its an ASD.

Also, you can still use the name Asperger's, even if the DSM-5 doesn't have that name for a diagnosis in it. Aspies will likely still use the word aspies.

They are merging AS and PDD-NOS into autism and making it one condition. It will still be a spectrum. But those who won't meet the new criteria will probably have Social Communication Disorder. So have you discussed with your therapist about meeting the new criteria or the possibility of having SCD starting 2013?

I highly doubt the term "Asperger Syndrome" will just disappear. Just because it's no longer what the DX will be called, doesn't mean people will just stop using the term.

But, that said, it's just a word, and it's already considered Autism. So you have Autism now. You will have Autism afterward.

"A rose by any other name..."

You can still say it. Nothing will change because it's not called Asperger's anymore in one book. People will still say it.

You will be a high-functioning autistic with good language skill or something similar. It remains to be seen if those changes will catch on, or not.
The disorder will stii be there, just under another name.
Does some of the old stigma about the word "autistic" still remain? I'm guessing it does, Asperger's does sound better than Autistic (whatever functioning level is) does. But then again, I was born in the Dark Ages for ASDs anyway, the 1960s.

Sincerely,
Matthew

Who gives a s**t what they call it??

You're going to have to deal with the same BS discrimination and idiocy no matter what nouns get applied.

Besides, don'tcha know, EVERYBODY has a f*****g diagnosis.

The only thing I would be worried about is not receiving treatment for the disorder if I no longer met criteria for autistic disorder. But I don't think the definition will be changed in Australia at first and I don't think I would need to be diagnosed again. What will get in the way for those already diagnosed is having special schools and government services sending them in for a re-evaluation. They can take advantage of the situation.

The media has already jumped all over the issue either saying many with AS will no longer meet the new criteria or that AS wasn't real to begin with. The media can be the most dangerous thing of all.

I think social communication disorder doesn't meet enough criteria for someone with AS. Even though it states that they do not have delays in self help skills they are still diagnosed with it when they have those problems. And they may seem too mild for the new autistic criteria. The criteria is written by man and judged by man and diagnosed by man who is fallible. I think it will become under diagnosed again.
As well meaning as the new criteria was supposed to be I think many medical 'professionals' will use it to their own advantage.

Fingers crossed I still meet it. Or I could just be diagnosed with sensory processing disorder.

Funny thing is every other disorder is being expanded, like ADHD. And more new disorders are being added that are just ridiculous.

Not everybody. Only about 25-50%, depending on what you call a "diagnosis". Mental illness and cognitive disorders are extremely common. Used to be, you couldn't be diagnosed with anything unless you were completely unable to do anything, so out of touch you couldn't cope no matter what. But that's stupid. If we thought of physical problems that way, it would be like only seeing a doctor if you're having a heart attack or terminal cancer, and assuming a broken arm or an ulcer isn't "really" a problem because you aren't lying in bed near death, so you don't need a doctor. It'd be a really bad thing to go back to that.

I'm not at all, but I'm diagnosed NVLD, and because I was late diagnosed, under earlier criteria, I'd probably have been more likely to get a PDD-NOS, but now under the new criteria I'll probably be ASD. I do wish NVLD itself was recognized officially, but it's not, so meh.

I've looked over the new criteria, and it's almost completely identical to the current criteria for AS, the only difference being the wording, and that it allows a language delay.

What are you frightened about? If you were diagnosed with AS then you neccesarily meet the dx for ASD.

I think the foremost risk is that aspergers will be mixed with autism in such that all aspies will be considered ret*ds.

If there's a medication for it, there will be a acronym for it such that pharmacies, shrinks etc. Can make $$.

If they band together, are intelligent etc.. oops.. better remove it yesterday

Don't forget that in 1974 homosexuality were removed as an "mental illness". The 1980 version had neurosis put in by peer pressure from psychoanalytics. Robert Spitzer criticized by saying DSM-1980 led to the medicalization of 20-30% of the population. In 1987 "pre-menstrual dysphoric disorder" and masochism were removed. The 1994 version required many symptoms to cause “clinically significant distress or impairment in social, occupational, or other important areas of functioning”

I found the interesting Rosenhan experiment, btw.

Well, excuse me, but what's wrong with being a "ret*d"? Nothing, in my book.

I get it: We're often scared that people will treat us as badly as they treat developmentally disabled people. Okay. Nobody deserves to be treated that way. But that's the point: Nobody deserves that. Not us, and not the developmentally disabled people either. Let's not leave anybody behind--equal rights for everybody. Nobody gets underestimated, and nobody gets written off. Whether you suck at socializing or you suck at schoolwork shouldn't make a difference for that. Either all disabled people stand up for each other, or the world will break us into little groups and we'll waste energy while the bigots sit there smugly watching us tear each other apart.

I don't think the book will be that dangerous.

Callista, I agree!

As far as the new definition is concerned, I have the same problems as with the old one. I can't seem to wrap my head around the cold, general descriptions well enough to know if they apply. I need enough examples of each point to know if they apply to me. This happened with regard to stimming. I didn't know I was doing it until I saw a long enough list that I could find mine in it. I don't hand flap, rock, or even rub my hands together in the way I'd pictured when I read the words, so I didn't know I did it when those were the only examples I found. But when I saw a longer list, I finally understood what it meant and why people do it. I realized I have a lot of stims and was able to think of some I do that I didn't see on the list.

Maybe it's just my processing issues, but I can't seem to transfer the info. I can see how I fit the new definition in some ways, but I either need someone competent and honest to ask the right questions to see if I really do fit, or I need enough of an explanation and enough examples to figure it out for myself.

Could this be why so many people are worried? Could it be a processing issue popping up as the effort is made to understand the new definition? Also, what about the on/off emotional switch and heightened fight or flight response that can be present kicking in, making things seem dire?

I think that's one of the biggest reasons that people are worried. Someone else mentioned that on here and then it clicked that that was probably going on in a lot of people.