The lasting repercussions of the loss of Asperger's

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firemonkey
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19 May 2020, 6:52 am

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In 2013, the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) — the ‘bible’ for diagnosticians in the United States and Australia — removed Asperger syndrome as a diagnosis separate from autism. In 2019, the World Health Organization followed suit, making the same change in their own diagnostic guidelines, the International Classification of Diseases.

The authors based the change on clinical grounds — noting, for example, inconsistencies in diagnoses —but it has had an impact far beyond the health professionals who are guided by these manuals. What does it mean for people who were diagnosed with Asperger syndrome before the changes were made?


https://www.spectrumnews.org/opinion/vi ... rcussions/



Jakki
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19 May 2020, 7:01 am

this cant be a good thing ..........


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pyrrhicwren
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19 May 2020, 7:31 am

In US it has been transmogrified to ASD level 1; level 2 is with a more noticeable intellectual disability. To obtain benefits, one has to be a level 2 with certain criteria. The forementioned move within those agencies tells the NT world that Asperger's is something mild, just some quirks -and who doesn't have quirks...-, and downsizes the hardships. It is within the realm of possibility that this had lobbying/cease benefits driven motivation aka running autistic society like an insurance company. d e n i e d ! :rambo:


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blazingstar
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19 May 2020, 7:42 am

In Florida, Waiver benefits also go to ASD Level 1 who also have other qualifying conditions, such as seizures, behavior problems, communication deficits, lack of ability to live independently, etc.


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Fnord
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19 May 2020, 7:51 am

So ... is anyone offering a solution?



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19 May 2020, 8:13 am

I feel like for me personally, it’s a good thing. When people think of someone with Asperger’s, they think of someone much higher-functioning than me. I need more support and stuff, may never even be able to work or live on my own. I’m guessing (I was in fourth grade when I was diagnosed, didn’t get any specifics about my diagnosis beyond “Asperger’s syndrome,” any of that information probably went to my parents instead of me and they didn’t tell me any more than that) I was just labeled with “Asperger’s” instead of “autism” because I had no speech delay, and because of the label I was lumped in with “high-functioning” when really I’m “moderate-functioning.” So for me, it was doing me a disservice, putting me in a category of people who don’t need as much support and assistance as I do.

But as per usual, I seem to be in the minority with my opinion.


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Magna
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19 May 2020, 8:17 am

Fnord wrote:
So ... is anyone offering a solution?


Bring it back. That would be my solution. I doubt it will happen, but I would assume dissolving a diagnosis into another was very hard for those that were diagnosed with, accepted and identified with Asperger's to then be told that their diagnosis and in some respect a part of their identity no longer existed on its own.

My autism assessor/therapist told me that I would have been diagnosed solidly with Asperger's prior to the DSM change but I was only diagnosed recently. I don't like the term "Aspie" because it sounds too cutesy to me, but I do wish that it was still a separate diagnosis.



Fnord
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19 May 2020, 8:26 am

Magna wrote:
Fnord wrote:
So ... is anyone offering a solution?
Bring it back. That would be my solution. I doubt it will happen, but I would assume dissolving a diagnosis into another was very hard for those that were diagnosed with, accepted and identified with Asperger's to then be told that their diagnosis and in some respect a part of their identity no longer existed on its own...
Yes ... of course ... when people become used to being unique, being re-labeled as part of something more common is often perceived as an insult and a threat to their personal identity.

I know people in the "Otherkin" community who believe themselves to be uniquely paranormal/supernatural beings, while they also deeply resent being diagnosed by mental-health professionals as "common" schizophrenics.

For some people, it's comforting to think of themselves as special, and insulting to be thought of as ordinary -- this includes a lot of "Aspies".



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19 May 2020, 8:33 am

Fnord wrote:
Magna wrote:
Fnord wrote:
So ... is anyone offering a solution?
Bring it back. That would be my solution. I doubt it will happen, but I would assume dissolving a diagnosis into another was very hard for those that were diagnosed with, accepted and identified with Asperger's to then be told that their diagnosis and in some respect a part of their identity no longer existed on its own...
Yes ... of course ... when people become used to being unique, being re-labeled as part of something more common is often perceived as an insult and a loss of personal identity.

I know people in the "Otherkin" community who believe themselves to be uniquely paranormal/supernatural beings, while they also deeply resent being diagnosed by mental-health professionals as "common" schizophrenics.

For some people, it's comforting to think of themselves as special, and insulting to be thought of as ordinary -- this includes a lot of "Aspies".


Maybe some long diagnosed "Aspies" thought of themselves as special and now think of themselves as being diagnosed as "ordinary" but autism certainly isn't ordinary. I think of autism and Asperger's as being in the same family (spectrum), one not any more "special" than the other. I think of people who were diagnosed with classic autism as my family members. My "peeps". :)



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19 May 2020, 8:50 am

I understand and accept why the change happened but would I like to see ASD split in the future.

It is crazy that we lump aspie computer programmers that are married and live on their own with severely disabled people that need 24h care.

It just causes bad feelings in the community between hf advocates and those disabled either in psychological pain themselves or their carers.

That won’t happen however until future medical discoveries manage to identify where the boundaries are.


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19 May 2020, 9:07 am

carlos55 wrote:
I understand and accept why the change happened but would I like to see ASD split in the future.  It is crazy that we lump aspie computer programmers that are married and live on their own with severely disabled people that need 24h care.  It just causes bad feelings in the community between hf advocates and those disabled either in psychological pain themselves or their carers.  That won’t happen however until future medical discoveries manage to identify where the boundaries are.
That's just it; there are no fixed boundaries.  That's why it's called "Autism Spectrum Disorder" -- there is continuity from the most afflicted to the least afflicted. 

It is not "crazy", and the only "bad feelings" are subjectively generated.



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19 May 2020, 10:23 am

I'm far less bothered by Asperger's being removed in ICD11(has that occurred yet ?) than something similar to DSM 5 levels 1-3 being used .
I certainly don't regard myself as high functioning , but low functioning would not be an accurate description either . My ability to function depends very much on the task at hand .



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19 May 2020, 10:47 am

I don't actually get it. Maybe it's a western thing in the context of identity and advocacy.
Yet I won't be so sure, in most modern areas, people here tries rather hard to emulate said contexts due to the colonial mentality.
And idea that western contexts are 'advanced' :roll: but it's better than most superstitions. I just sure hope it just doesn't go too far to start emulating downsides of either contexts.

I also most especially don't get it involving insurances and medical systems. :| I live in an unreliable system, there's nothing to hold onto here and therefore nothing to complain for.
But I cannot speak for anyone -- as the system is unreliable, so are any help required in case to case basis. I just hope people here don't glamorize the support system from elsewhere. But just as hopefully the years of flaws, worth of data and study still benefit others to come nonetheless.



According to a professional I've known for a long time, one connected with various authorities upstairs -- she disagrees with the removal of the label of Aspergers.
I can't tell the details or assume why. I could only guess, the emulation of western context.
If I have all my mental faculties up, maybe I can discuss this with her.


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The_Walrus
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19 May 2020, 11:54 am

I don’t think we should pretend that two things which are identical are actually different just because some people get upset about it. There’s less confusion from merging the diagnoses and it has also prompted cross-spectrum solidarity. And again, there’s no scientific basis on which to separate them.

Hopefully in the future we will see ADHD merged with autism as well, but I don’t think the body of evidence is quite there yet like it was for merging the three ASD diagnoses into one.



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19 May 2020, 12:02 pm

The_Walrus wrote:
... Hopefully in the future we will see ADHD merged with autism as well...
That may require a 2-dimensional matrix instead of a 1-dimension spectrum to more accurately describe how the two converge and diverge (I don't know, cuz I ain't a "shrink").



ed
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19 May 2020, 12:41 pm

I HATE that change. Autism is a very broad term that doesn’t describe us at all. Asperger’s Syndrome is very specific, and describes us exactly. I’m a 75-year-old Aspie, and I’ll be an Aspie ‘til the day I die!


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