Losing the Aspergers/Autism explination?

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Jezebel
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07 Jan 2015, 11:03 pm

Waterfalls wrote:
Removing aspergers from the DSM has some benefits, in addition to the drawbacks, but it did not humanize us to others, and although I was not comfortable with autism and Aspergers being separate, I dislike how the new criteria are so negative about our abilities to grow and be happy and connected. Not saying that's necessarily inaccurate, it is discouraging though.


Interesting. I've never heard of that - can you explain?
I personally wish they had've included some type of specifier for those who relied on the AS diagnosis... Something like "ASD Level 1 with Aspergers traits" or something. It could've been taken out when the DSM 5.1 or 5.2 was released (if they're still planning on updating it like that). Maybe it's better to just "rip off the bandage" though (so to speak).


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07 Jan 2015, 11:18 pm

Jezebel wrote:
Waterfalls wrote:
Removing aspergers from the DSM has some benefits, in addition to the drawbacks, but it did not humanize us to others, and although I was not comfortable with autism and Aspergers being separate, I dislike how the new criteria are so negative about our abilities to grow and be happy and connected. Not saying that's necessarily inaccurate, it is discouraging though.


Interesting. I've never heard of that - can you explain?

I meant how the level is supposed to reflect how much support one needs, and in the US one is supposed to grow up to be independent and one is in many ways then defined as failing because of needing support. But we all need support, in different ways at different times.



Jezebel
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07 Jan 2015, 11:41 pm

Waterfalls wrote:
I meant how the level is supposed to reflect how much support one needs, and in the US one is supposed to grow up to be independent and one is in many ways then defined as failing because of needing support. But we all need support, in different ways at different times.

Oh, okay, gotcha! Thank you. :)

Personally, I've just always thought they refer to the previous "functioning labels" of high, moderate, and low functioning though. It's sad if some people are looked down upon because of the severity they're diagnosed with :/


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07 Jan 2015, 11:51 pm

The purpose of diagnosis is to provide support and accommodations to people who need them, so level of support seems fine to me.


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08 Jan 2015, 2:37 am

Jezebel wrote:
I personally wish they had've included some type of specifier for those who relied on the AS diagnosis... Something like "ASD Level 1 with Aspergers traits" or something. It could've been taken out when the DSM 5.1 or 5.2 was released (if they're still planning on updating it like that). Maybe it's better to just "rip off the bandage" though (so to speak).


I disagreed with the DSM IV making Aspergers a separatediagnoses. I would have preferred Aspergers-Autism as I believe Aspergers is a subcategory of Autism there for I identify aspie and Autistic. While Autism explains who I am Aspergers explained it better. So yes the Aspergers criteria was flawed. It would have been better to improve the diagnostic criteria of Aspergers rather then killing the label.

You said you can't understand identity from a diagnosis. I understand why you would not. People identifying with a diagnosis is rare, in fact it probably never happened to this degree, if at all before. So it is understandable why it is confusing a lot of professionals. It happened due to a unique set of circumstances. A bunch of people now adults especially older adults had traits that were baffling to everybody. We were mislabled, or not labeled leading to all sorts of problems in our lives and we did not know why or just thought it was character flaws on our part. Then this word aspergers came up a lo and behold it explained us. It also meant that contrary to what we believed for decades there were other people like us out there. We had a community an identity am emotional attachment to the word. People have referred to it in this thread, there are hundreds if not thousands of writings by people saying very similar things. Another reason I believe people are so attached to the identity there is really no effective treatment yet so the only thing we can go by is the explanation. Maybe you understand that now, maybe this is something you can’t. Overall you have much more expertise then me. On this issue we are more expert then you.

What psychologists are supposed to do is try and help their clients. They do it by listening and observing their patients. They put a bunch of traits and symptoms that seem common and a diagnosis is created hopefully an effective treatments are created. This system broke down in this case. As of a few years ago 1 to 2% or of resources and research went towered adults. The profession failed in the basic task of listening and in many cases still don’t listen to their adult clients. Because they did not listen they had fundamental misunderstanding of presentation in adults compromising their observation. Case in point many in this population seemed to function well when in fact stressful, exhausting, anxiety coping mechanisms were being used. So the patient got no diagnosis or a social anxiety diagnosis


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08 Jan 2015, 2:43 am

btbnnyr wrote:
The purpose of diagnosis is to provide support and accommodations to people who need them, so level of support seems fine to me.


So what is the wrong of changing Level 1 to Asperger-Autism if that makes people feel better and thus helps with treatment?


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something_
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08 Jan 2015, 4:35 am

While that was also my preference in reflection it could be quite stigmatising for those in the classical autism part of the spectrum, that aspies want their own term because they don't want to be too associated with autism.

I'm still confused as to how you think AS describes you better than ASD level -1, so far you have just refered to things from different severity levels that do not apply to you.



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08 Jan 2015, 11:44 am

I don't think that a diagnosis should eggsist for the purposes of a small group of people using it as identity.


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Jezebel
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08 Jan 2015, 3:27 pm

ASPartOfMe wrote:
I disagreed with the DSM IV making Aspergers a separatediagnoses. I would have preferred Aspergers-Autism as I believe Aspergers is a subcategory of Autism there for I identify aspie and Autistic. While Autism explains who I am Aspergers explained it better. So yes the Aspergers criteria was flawed. It would have been better to improve the diagnostic criteria of Aspergers rather then killing the label.

You said you can't understand identity from a diagnosis. I understand why you would not. People identifying with a diagnosis is rare, in fact it probably never happened to this degree, if at all before. So it is understandable why it is confusing a lot of professionals. It happened due to a unique set of circumstances. A bunch of people now adults especially older adults had traits that were baffling to everybody. We were mislabled, or not labeled leading to all sorts of problems in our lives and we did not know why or just thought it was character flaws on our part. Then this word aspergers came up a lo and behold it explained us. It also meant that contrary to what we believed for decades there were other people like us out there. We had a community an identity am emotional attachment to the word. People have referred to it in this thread, there are hundreds if not thousands of writings by people saying very similar things. Another reason I believe people are so attached to the identity there is really no effective treatment yet so the only thing we can go by is the explanation. Maybe you understand that now, maybe this is something you can’t. Overall you have much more expertise then me. On this issue we are more expert then you.

What psychologists are supposed to do is try and help their clients. They do it by listening and observing their patients. They put a bunch of traits and symptoms that seem common and a diagnosis is created hopefully an effective treatments are created. This system broke down in this case. As of a few years ago 1 to 2% or of resources and research went towered adults. The profession failed in the basic task of listening and in many cases still don’t listen to their adult clients. Because they did not listen they had fundamental misunderstanding of presentation in adults compromising their observation. Case in point many in this population seemed to function well when in fact stressful, exhausting, anxiety coping mechanisms were being used. So the patient got no diagnosis or a social anxiety diagnosis


I completely understand wanting something to explain why you always knew you were different. In fact, I think most of us on here can understand that. But actually identifying with something to this extent is a lot different than just wanting answers about why you do the things you do.

Yes it's very true that most research is geared towards children but that's because the hope is to be able to intervene ASAP. Adults haven't been forgotten about; however with the rate of autism in children increasing, it's clear that most research needs to be focusing on children right now.

And you really have to find a psychologist/psychiatrist who listens to you, especially if you're a young adult or adult seeking a diagnosis. Most people will advise you to seek out a second opinion if you disagree with the diagnosis you've been given. You also need to find one who specializes in autism and knows how it presents across the lifespan. (These are the people I was referring to when I said experts.) You can't really blame a psychologist for diagnosing SAD though, when technically speaking, it is one of autism's known comorbid conditions. You have to realize how hard autism is to diagnose - especially in adults who've likely learned coping mechanisms, which may cover up their autistic traits. It's even harder if the person doesn't have the social skills to convey why they feel like they're autistic, and they instead just take the anxiety diagnosis.

something_ wrote:
While that was also my preference in reflection it could be quite stigmatising for those in the classical autism part of the spectrum, that aspies want their own term because they don't want to be too associated with autism.

I'm still confused as to how you think AS describes you better than ASD level -1, so far you have just refered to things from different severity levels that do not apply to you.

I totally agree. That's why I figured it would need to be a specifier, so it could be separate from the actual level of severity.

I'm confused about that too... I'd think ASD Level 1 would describe him/her if s/he has an AS diagnosis.

btbnnyr wrote:
I don't think that a diagnosis should eggsist for the purposes of a small group of people using it as identity.

And another thing is, you can still identity with Aspergers even if it isn't officially a diagnosis anymore. People still know what it means.


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08 Jan 2015, 9:04 pm

I find it strange the research and interest is in children so much. If this were a physical issue like an injury or illness there'd be a lot of interest in people who seemed to recover, and obviously autism is neither. I just think more interest in for instance adults and adolescents who when younger did not speak or had very limited social interest might be more rewarding than looking at small changes in young children.



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09 Jan 2015, 3:38 am

Waterfalls wrote:
I find it strange the research and interest is in children so much. If this were a physical issue like an injury or illness there'd be a lot of interest in people who seemed to recover, and obviously autism is neither. I just think more interest in for instance adults and adolescents who when younger did not speak or had very limited social interest might be more rewarding than looking at small changes in young children.


I usually fundamentally disagree with Autistic Speaks but they got this exactly right. "Autistic children will eventually become Autistic Adults"

Overall Autistic Adults have a lot less money the NT parents of Autistic children
People generally feel bad for "cute" people when something "bad" happens to them. The adults? a lot of people feel they are lazy looking for an excuse or disability etc etc


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09 Jan 2015, 4:11 am

something_ wrote:
that aspies want their own term because they don't want to be too associated with autism.


Speaking of stigmatizing :x

something_ wrote:
I'm still confused as to how you think AS describes you better than ASD level -1, so far you have just refered to things from different severity levels that do not apply to you.


I did not say did not say anything about not applying to me I said not as much. Any broader category is going to apply less to a person or situation then a narrow or subcategory. Aspergers was to broad ASD more so. Cancer is also a broad spectrum in a way. There is some cancers that are treated with "watchful waiting" there is cancers where you are dying shortly. We call it by the broad term cancer or more often it is described as by a subcategory such liver cancer. We diagnose by the subcategories. Nobody has a problem with this. We do this with most areas in life. There are dozens of categories of heavy metal music which in itself is a subcatogory of rock music which is a subcatagory of music. People do argue over definitions of genres and which if a band band belongs to a genre. It is rarely argued that there should be no suncatagories. But autism is held to a different standard and I do believe the successful stigmatization Aspergers is a important reason why.


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09 Jan 2015, 4:32 am

Yes but ASD1 isn't broad it is almost exactly equivelant to AS except it allows for a slight language delay and makes room for milder PDD-NOS.

ASD is as broad as it always was but now instead of an aspergers subcategory you have an almost identical level 1 category. I fail to see the difference except for your personal attachment to the word aspergers.



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09 Jan 2015, 5:08 am

Jezebel wrote:
I completely understand wanting something to explain why you always knew you were different. In fact, I think most of us on here can understand that. But actually identifying with something to this extent is a lot different than just wanting answers about why you do the things you do.


Yes it is very different. It is not like said I want this diagnosis for an identity it just happened that way. I had no clue that would happen. Because besides the explanation, it was recognition there were others like me. And it can be quite different finding out early in life then muddling through most of your life without knowing. Since instead of trying to understand what we are trying to tell you experts we get constantly reminded that since you know better we should just accept your diagnosis. Under these circumstantial why would we trust your diagnosis is correct for us?

Jezebel wrote:
And you really have to find a psychologist/psychiatrist who listens to you, especially if you're a young adult or adult seeking a diagnosis. Most people will advise you to seek out a second opinion if you disagree with the diagnosis you've been given. You also need to find one who specializes in autism and knows how it presents across the lifespan. (These are the people I was referring to when I said experts.) You can't really blame a psychologist for diagnosing SAD though, when technically speaking, it is one of autism's known comorbid conditions. You have to realize how hard autism is to diagnose - especially in adults who've likely learned coping mechanisms, which may cover up their autistic traits. It's even harder if the person doesn't have the social skills to convey why they feel like they're autistic, and they instead just take the anxiety diagnosis.

If SAD was diagnosed as a comorbid. Great. If the SAD was found but Autism was missed then the root cause of the SAD was likely missed


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09 Jan 2015, 5:41 am

btbnnyr wrote:
I don't think that a diagnosis should eggsist for the purposes of a small group of people using it as identity.

I don't think psychologists should drop something that was working because they did not like or were befuddled as to why it was working. Diagnosis exist for very small groups of people.

Jezebel wrote:
And another thing is, you can still identity with Aspergers even if it isn't officially a diagnosis anymore. People still know what it means.

People know a broad stereotype or a stigmatized version of what Aspergers was. Identity is becomes kind of a farce if there is no group to identify with.


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09 Jan 2015, 10:55 am

Hans Asperger was right.

Autistic people do have a place in the "fabric" of all societies.

Now....we must prove to "neurotypicals" that this is true. This should be easily done. The evidence is out there.