Similarities & Differences: Why the DSM-V Makes Sense

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fragileclover
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09 Mar 2012, 12:45 pm

I am currently in the process of getting diagnosed, so feel free to take everything I say here with a grain of salt.

When I first learned about the DSM-V changes, I was shocked and upset. I'd finally found something that really explained me, and I didn't know how to react to the idea that, a short time from now, that definition of me will no longer technically exist. Still, I went forward with seeking a diagnosis, because I wanted to know for myself, regardless of what some piece of paper said; I worried, though, if it was all for naught.

A week or so ago I was watching a video on Youtube of a young adult male with classic autism, who was laying on the floor, curled up in a small square of sunlight. I then watched a video of him hitting himself repeatedly, until he was led into the pool in his back yard, which calmed him immediately. I found myself connecting more with him than I do with most of the people around me, but I don't look or behave like him. My outward symptoms are quite mild, so I probably seem like an NT to most people, but on the inside, my symptoms are raging and suppressed. I almost felt a level of jealousy of that young man, who clearly has it much, much tougher than I do, but who is free to release what he's feeling on the inside, because no one expects more from him. They expect him to 'act autistic'...to seek out comfort by any means necessary. I want to curl in a ball in a square of sunlight on the floor, but I can't, because I seem too 'normal,' and it wouldn't be accepted.

This is relevant because, from time to time, I'll begin to doubt myself. I'll read about some other Aspies here who are unable to live on their own or drive or get a job, and I think, "did I make a huge mistake?" - but then I find myself connecting more on a base level to someone who is clearly autistic and 'low-functioning,' and I realize that I'm the same...I've just got it 'easier.'

It's still difficult, though, when you see 10 people with the same diagnosis - Aspergers - and no two are alike in their ability to function in outside world. Some, like me, can hold jobs, drive a car, live on their own, and pull off appearing like any NT, at least most of the time. Others are stuck in their homes, unable to function well outside of their safe haven. The only thing telling these people who function so very different that we are the same is a list of difficulties (with no regard to severity) and the fact that we learned to speak on time.

I saw a poll recently on here regarding the levels of severity proposed in the DSM-V, and for those diagnosed with Asperger's, the responses were all over the place, from needing daily support in their lives, to not needing any support. As it is now, the Asperger's diagnosis doesn't even consider how well you function, only if your traits cause you 'difficulties.' Yes, my traits cause me difficulties...I'm made fun of and misunderstood by my family, people think I'm a know-it-all or am manipulative when I only want to understand a situation to its fullest, by asking questions...my new boss thought I was defiant and a trouble maker because I kept forgetting to wear an 'approved' pair of shoes to work, because the shoes I'd been wearing there for 9 years were no longer permitted. My boyfriend thinks I'm clingy and controlling...when I just have a lot of trouble handling change. If I have to place a phone call instead of send an email to resolve an issue, that issue will go unresolved until I can't ignore it anymore. These are all real difficulties that I face...but they aren't nearly as bad as some others of you face.

Basically, what I'm saying is...despite feeling some doubts because I don't have as many difficulties of some others here, I've realized, without doubt, that I am autistic. Mildly, yes, but none the less, it describes me. It fits me. Autistic is what we all have in common. It's the level of difficulty we have that sets us apart. So, really, the DSM-V makes a lot of sense. It's maybe hard to lose a sense of 'identity' or a label that you've associated yourself with for such a long time...but we'll all still be the same, no matter what our title. It's just that, those who really need the help may be more likely to get it now, because instead of having Aspergers, which is considered 'mild' inherently, they'll just be considered Autistic, with 'x' amount of difficulty, and isn't that what is most important?


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Ganondox
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09 Mar 2012, 12:53 pm

Now even more people who only have a few arbitrary things in common are being lumped together.


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fragileclover
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09 Mar 2012, 1:16 pm

Ganondox wrote:
Now even more people who only have a few arbitrary things in common are being lumped together.


Would you care to elaborate? My understanding of the DSM-V changes may be too basic.

As I currently understand, the spectrum will be simplified to 'Autism', with varying levels of diagnosis depending on severity, as based on need for support.

We'll all still need to meet certain diagnostic criteria for autism, but instead of separating us by differences in early development, individual diagnosis will be based on our ability to function.

Again, I am able to relate on a base and innate level with someone who has classic autism, but my expression of traits and level of functioning are not as severe...so it makes sense to me to be considered 'mildly autistic' instead of being a separate diagnosis.


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Aspie Quiz: AS - 141/200, NT - 77/200 (Very likely an Aspie)
AQ: 34/50 (Aspie range)
EQ: 32 / SQ: 68 (Extreme Systemizing / AS or HFA)
Diagnosed with AS and Anxiety Disorder - NOS on 03/21/2012


Callista
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09 Mar 2012, 1:42 pm

That "lumped together" thing is happening already, and I think it's as bad as it's going to get. The DSM-V can only really make it better, at least as far as I understand the matter.

Like, the people diagnosed with AS, but who need a lot of help, are "lumped together" with the people who have AS and need very little help; so it's hard for them to get the help they need--or hard to get help that the psychologists think people with AS shouldn't need.

And the people diagnosed with "autistic disorder" are getting stereotyped as needing certain sorts of help, and they get that relatively easily; but then people think that because they are diagnosed with "autistic disorder", they will not be capable of things that they think that "autistic" people are not capable of; like they'll assume that someone diagnosed with autistic disorder can't work, or they'll assume that they can't go to college, that sort of thing.

I understand the fear about combining AS and autistic disorder--that it'll lead to people assuming we're all the same, that someone with autism spectrum disorder can't be this or can't be that. But we already have that problem. I think that having just one category may be a positive thing for that "lumped-together" problem, because having one category for people who are non-verbal or verbal, social or withdrawn, routine-oriented or detail-oriented or hypersensitive or hyposensitive, will force the medical profession to face up to the extreme diversity of the autism spectrum.

If things go the way I hope they will, that will lead to professionals saying, "Yes, I know he has autism; but I have to look at this particular case to see how it specifically affects him." Because the definition is now broad enough that it can't be used as easily to try to globally predict everything about a person based on his diagnosis, professionals may be forced to take autism on a person-by-person basis.


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09 Mar 2012, 1:55 pm

fragileclover wrote:
Ganondox wrote:
Now even more people who only have a few arbitrary things in common are being lumped together.


Would you care to elaborate? My understanding of the DSM-V changes may be too basic.

As I currently understand, the spectrum will be simplified to 'Autism', with varying levels of diagnosis depending on severity, as based on need for support.

We'll all still need to meet certain diagnostic criteria for autism, but instead of separating us by differences in early development, individual diagnosis will be based on our ability to function.

Again, I am able to relate on a base and innate level with someone who has classic autism, but my expression of traits and level of functioning are not as severe...so it makes sense to me to be considered 'mildly autistic' instead of being a separate diagnosis.


Autism an umbrella term, and it always has been, a lot of confusion stems comes from thinking that everyone with autism is neurologically similar. Maybe most are, but autism is defined by observing behaviors. This was even more true for autistic disorder than Aspergers, though there is a significant divide between the more HFA aspies and the more NVLD aspies, and what ever other types of aspies there are. Now the arbitrary lines between the different groups have been removed, but many people who are only arbitrarily similar are still in the same category. I think a bettter way of tackling this would have been to redefine autism and farther break it down with less arbitrary distinctions would have been better than just lumping everyone together, as severity is not a linear scale. Just because two autistic people fall on the same place on the severity scale does not mean that they need the same adjustments.


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Rascal77s
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09 Mar 2012, 2:19 pm

The more I think about it the worse the DSM 5 looks. There is a huge outcry in the medical community right now because they feel that, in the words of one professor, 'the dsm 5 will take us back to the dark ages of the DSM 2'. The whole thing is a train wreck. For us specifically the DSM 5 is going to hurt, especially for people with a PPD-NOS DX. When PDD-NOS is removed what will they fall under? It's not going to be autism. Many people with AS will not fall under autism as well. And sadly, some people who now have a DX of classic autism will no longer be autistic. All of this means that these people will lose access to programs that they desperately need. I'm 39 and I know what it was like to grow up without any help. I realize now I had 2 friends when I was young who had undiagnosed AS because AS didn't exist back then. Both of them ended up committing suicide. That's where we're headed if the DSM 5 comes out. The people putting the thing together are worried about the "epidemic of autism", well they need to start worrying about the epidemic of suicides that will occur if they don't fix the DSM 5 criteria for autism.

I'd like for you guys to read this article. Everyone on this forum should read it. And read the comments to the article.

http://www.psychiatrictimes.com/blog/frances/content/article/10168/2024394



fragileclover
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09 Mar 2012, 2:23 pm

Callista wrote:
That "lumped together" thing is happening already, and I think it's as bad as it's going to get. The DSM-V can only really make it better, at least as far as I understand the matter.

Like, the people diagnosed with AS, but who need a lot of help, are "lumped together" with the people who have AS and need very little help; so it's hard for them to get the help they need--or hard to get help that the psychologists think people with AS shouldn't need.

And the people diagnosed with "autistic disorder" are getting stereotyped as needing certain sorts of help, and they get that relatively easily; but then people think that because they are diagnosed with "autistic disorder", they will not be capable of things that they think that "autistic" people are not capable of; like they'll assume that someone diagnosed with autistic disorder can't work, or they'll assume that they can't go to college, that sort of thing.

I understand the fear about combining AS and autistic disorder--that it'll lead to people assuming we're all the same, that someone with autism spectrum disorder can't be this or can't be that. But we already have that problem. I think that having just one category may be a positive thing for that "lumped-together" problem, because having one category for people who are non-verbal or verbal, social or withdrawn, routine-oriented or detail-oriented or hypersensitive or hyposensitive, will force the medical profession to face up to the extreme diversity of the autism spectrum.

If things go the way I hope they will, that will lead to professionals saying, "Yes, I know he has autism; but I have to look at this particular case to see how it specifically affects him." Because the definition is now broad enough that it can't be used as easily to try to globally predict everything about a person based on his diagnosis, professionals may be forced to take autism on a person-by-person basis.


This sums up quite well my thoughts on the subject. It was exactly my point that right now, all the individuals diagnosed with AS are lumped together and expected to be the same as one another, and all the individuals diagnosed with classic autism are expected to be the same as one another. Since diagnosis is most often sought in order to attain support for difficulties, it doesn't make sense for a classic autist who can hold a job to be considered more in need than someone with AS who can not.

Sure, the DSM-V lumps us ALL together, but with the understanding now that there isn't just one face of Autism, and that people are effected differently and need varying levels of support. I think the public view will eventually change as well, when it's understoof that there are severe, moderate and mild levels of Autism. These are much more distinct definitions when it comes to perception of others and ones own ability to function. It's not helpful for me, someone who functions well, to be lumped together with someone who does not function well, as people are less likely to accept that I have any problems at all, in comparison; and vice versa...what if I were the face of Aspergers? Those of you who aren't nearly as high functioning wouldn't receive any of the support you need. The current system is unfair and unbalanced.


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09 Mar 2012, 2:33 pm

Ganondox wrote:
fragileclover wrote:
Ganondox wrote:
Now even more people who only have a few arbitrary things in common are being lumped together.


Would you care to elaborate? My understanding of the DSM-V changes may be too basic.

As I currently understand, the spectrum will be simplified to 'Autism', with varying levels of diagnosis depending on severity, as based on need for support.

We'll all still need to meet certain diagnostic criteria for autism, but instead of separating us by differences in early development, individual diagnosis will be based on our ability to function.

Again, I am able to relate on a base and innate level with someone who has classic autism, but my expression of traits and level of functioning are not as severe...so it makes sense to me to be considered 'mildly autistic' instead of being a separate diagnosis.


Autism an umbrella term, and it always has been, a lot of confusion stems comes from thinking that everyone with autism is neurologically similar. Maybe most are, but autism is defined by observing behaviors. This was even more true for autistic disorder than Aspergers, though there is a significant divide between the more HFA aspies and the more NVLD aspies, and what ever other types of aspies there are. Now the arbitrary lines between the different groups have been removed, but many people who are only arbitrarily similar are still in the same category. I think a bettter way of tackling this would have been to redefine autism and farther break it down with less arbitrary distinctions would have been better than just lumping everyone together, as severity is not a linear scale. Just because two autistic people fall on the same place on the severity scale does not mean that they need the same adjustments.


Consider it this way, though. How about individuals who suffer from clinical depression, but whom all respond differently to different medications; well to some, not at all to others. Should a distinction be created for each 'type' of depression that responds to different treatment? Of course not. What all of these people share is debilitating depression...but to varying levels. For some, that means not being able to work, for others, it means not being able to get out of bed at all. Doctors will treat the person according to the severity of their depression or ability to function.

To do what you're saying would require dozens of classifications along the spectrum...'person A has 'x' type of Autism because he/she functions very well, but has severe issues with bright lights, so requires dim light or dark sunglasses to go outside' - 'person B is not able to function without support, but prefers daily visits over someone living with them, as person C requires'. I mean, the different varities of severity and expression of traits and need for support are literally endless, and would only serve to fracture and split up the community more.


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AQ: 34/50 (Aspie range)
EQ: 32 / SQ: 68 (Extreme Systemizing / AS or HFA)
Diagnosed with AS and Anxiety Disorder - NOS on 03/21/2012


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09 Mar 2012, 2:45 pm

Rascal77s wrote:
The more I think about it the worse the DSM 5 looks. There is a huge outcry in the medical community right now because they feel that, in the words of one professor, 'the dsm 5 will take us back to the dark ages of the DSM 2'. The whole thing is a train wreck. For us specifically the DSM 5 is going to hurt, especially for people with a PPD-NOS DX. When PDD-NOS is removed what will they fall under? It's not going to be autism. Many people with AS will not fall under autism as well. And sadly, some people who now have a DX of classic autism will no longer be autistic. All of this means that these people will lose access to programs that they desperately need. I'm 39 and I know what it was like to grow up without any help. I realize now I had 2 friends when I was young who had undiagnosed AS because AS didn't exist back then. Both of them ended up committing suicide. That's where we're headed if the DSM 5 comes out. The people putting the thing together are worried about the "epidemic of autism", well they need to start worrying about the epidemic of suicides that will occur if they don't fix the DSM 5 criteria for autism.

I'd like for you guys to read this article. Everyone on this forum should read it. And read the comments to the article.

http://www.psychiatrictimes.com/blog/frances/content/article/10168/2024394


Rascal,

I tried to read the article you linked to, but I'm not a member of the Psychiatric Times, so was unable to. Would it be possible to past the article here? I'm very interested in an opposing view point and support for negative reactions to the DSM-V.

Could you elaborate as to why individuals with classic autism would lose their diagnosis? As they are *typically* on the more severe end of the spectrum, it would seem, even if they need less support than previously assumed, that they would still fit on the spectrum.

As for PDD-NOS, I was under the impression that it meant that you had a form of autism that could not be specified, as one or a couple criteria excluded you from each group. Like, maybe you didn't have the communication issues associated with autism, but you had a delay in language development, etc. Couldn't the DSM-V criteria technically make it easier to get an autism diagnosis with those arbitrary distinctions gone? Please correct me if I'm totally wrong.

Also, I'm not familiar with how those who are presently diagnosed will be effected. Will you have to be re-evaluated for an ASD? Or, will you just not be able to use the terms AS or PDD-NOS anymore? For instance, if I receive an Asperger's diagnosis, but the diagnosis disappears next year, will I just be considered 'mildly autistic' or will I be considered NT?


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Aspie Quiz: AS - 141/200, NT - 77/200 (Very likely an Aspie)
AQ: 34/50 (Aspie range)
EQ: 32 / SQ: 68 (Extreme Systemizing / AS or HFA)
Diagnosed with AS and Anxiety Disorder - NOS on 03/21/2012


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09 Mar 2012, 2:47 pm

fragileclover wrote:
Ganondox wrote:
Now even more people who only have a few arbitrary things in common are being lumped together.


Would you care to elaborate? My understanding of the DSM-V changes may be too basic.

As I currently understand, the spectrum will be simplified to 'Autism', with varying levels of diagnosis depending on severity, as based on need for support.

We'll all still need to meet certain diagnostic criteria for autism, but instead of separating us by differences in early development, individual diagnosis will be based on our ability to function.

Again, I am able to relate on a base and innate level with someone who has classic autism, but my expression of traits and level of functioning are not as severe...so it makes sense to me to be considered 'mildly autistic' instead of being a separate diagnosis.


I wonder what will happen if you don't get diagnosed with autism.
I never even heard of aspergers before someone suggested to me that I might have it.



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09 Mar 2012, 3:00 pm

pokerface wrote:
I wonder what will happen if you don't get diagnosed with autism.


What do you mean 'what will happen'?

Do you mean, like, how I'll feel? If I'm not diagnosed with AS, I'll feel very lost and confused, as I exhibit all of the diagnostic criteria for AS, and relate very highly to those with Austim and AS, alike. I suppose I'll continue my struggle to understand myself. :(

Why do you ask?

Oh, I just saw the second part of your post. I'd never heard of it, either, until a co-worker asked me if I had it. She noted that I never looked her in the eyes when we were talking, but instead kind of gazed up toward her hairline. I looked it up that night (several years ago), but read a generic article that described those with AS as lacking emotion. I did not connect with that, as I tend to be hyperemotional, often without recognizing the accompanying thought or stimulus that caused the emotion. I later found a post (here, on WP) that described that same level of hypersensitivity, and found that many others here related. That prompted me to read more about AS, and I finally concluded that it explained me perfectly. I never sought diagnosis until this year, when a lull in post-college life, changes at work and troubles in my relationship made my traits more noticeable to other people, which led to a lot of misunderstanding and assumptions about me that weren't true.


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AQ: 34/50 (Aspie range)
EQ: 32 / SQ: 68 (Extreme Systemizing / AS or HFA)
Diagnosed with AS and Anxiety Disorder - NOS on 03/21/2012


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09 Mar 2012, 4:20 pm

fragileclover wrote:
Rascal77s wrote:
The more I think about it the worse the DSM 5 looks. There is a huge outcry in the medical community right now because they feel that, in the words of one professor, 'the dsm 5 will take us back to the dark ages of the DSM 2'. The whole thing is a train wreck. For us specifically the DSM 5 is going to hurt, especially for people with a PPD-NOS DX. When PDD-NOS is removed what will they fall under? It's not going to be autism. Many people with AS will not fall under autism as well. And sadly, some people who now have a DX of classic autism will no longer be autistic. All of this means that these people will lose access to programs that they desperately need. I'm 39 and I know what it was like to grow up without any help. I realize now I had 2 friends when I was young who had undiagnosed AS because AS didn't exist back then. Both of them ended up committing suicide. That's where we're headed if the DSM 5 comes out. The people putting the thing together are worried about the "epidemic of autism", well they need to start worrying about the epidemic of suicides that will occur if they don't fix the DSM 5 criteria for autism.

I'd like for you guys to read this article. Everyone on this forum should read it. And read the comments to the article.

http://www.psychiatrictimes.com/blog/frances/content/article/10168/2024394


Rascal,

I tried to read the article you linked to, but I'm not a member of the Psychiatric Times, so was unable to. Would it be possible to past the article here? I'm very interested in an opposing view point and support for negative reactions to the DSM-V.

Could you elaborate as to why individuals with classic autism would lose their diagnosis? As they are *typically* on the more severe end of the spectrum, it would seem, even if they need less support than previously assumed, that they would still fit on the spectrum.

As for PDD-NOS, I was under the impression that it meant that you had a form of autism that could not be specified, as one or a couple criteria excluded you from each group. Like, maybe you didn't have the communication issues associated with autism, but you had a delay in language development, etc. Couldn't the DSM-V criteria technically make it easier to get an autism diagnosis with those arbitrary distinctions gone? Please correct me if I'm totally wrong.

Also, I'm not familiar with how those who are presently diagnosed will be effected. Will you have to be re-evaluated for an ASD? Or, will you just not be able to use the terms AS or PDD-NOS anymore? For instance, if I receive an Asperger's diagnosis, but the diagnosis disappears next year, will I just be considered 'mildly autistic' or will I be considered NT?


I can't right now because it would take a considerable amount of time but I promise I will try to copy it for you later tonight. I might need to PM you because the essay is 3 pages long. I will try to get you the link for an article about why so many people will be excluded from an autism DX based on the current DSM 5 criteria.



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09 Mar 2012, 4:34 pm

fragileclover wrote:
As it is now, the Asperger's diagnosis doesn't even consider how well you function, only if your traits cause you 'difficulties.'


Yeah, it does; straight from the DSM-IV-TR:

Quote:
"In Asperger's Disorder, the social deficits are quite severe and the preoccupations and are all-encompassing and interfere with the acquisition of basic skills."


Quote:
"(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning."


That's pretty clear.



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09 Mar 2012, 4:36 pm

Rascal77s wrote:
I can't right now because it would take a considerable amount of time but I promise I will try to copy it for you later tonight. I might need to PM you because the essay is 3 pages long. I will try to get you the link for an article about why so many people will be excluded from an autism DX based on the current DSM 5 criteria.


Cool. Thank you. Don't feel the need to rush yourself or anything; I appreciate your willingness to take the time.


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Aspie Quiz: AS - 141/200, NT - 77/200 (Very likely an Aspie)
AQ: 34/50 (Aspie range)
EQ: 32 / SQ: 68 (Extreme Systemizing / AS or HFA)
Diagnosed with AS and Anxiety Disorder - NOS on 03/21/2012


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09 Mar 2012, 4:53 pm

Rascal77s wrote:
The more I think about it the worse the DSM 5 looks. There is a huge outcry in the medical community right now because they feel that, in the words of one professor, 'the dsm 5 will take us back to the dark ages of the DSM 2'. The whole thing is a train wreck. For us specifically the DSM 5 is going to hurt, especially for people with a PPD-NOS DX. When PDD-NOS is removed what will they fall under? It's not going to be autism. Many people with AS will not fall under autism as well. And sadly, some people who now have a DX of classic autism will no longer be autistic. All of this means that these people will lose access to programs that they desperately need. I'm 39 and I know what it was like to grow up without any help. I realize now I had 2 friends when I was young who had undiagnosed AS because AS didn't exist back then. Both of them ended up committing suicide. That's where we're headed if the DSM 5 comes out. The people putting the thing together are worried about the "epidemic of autism", well they need to start worrying about the epidemic of suicides that will occur if they don't fix the DSM 5 criteria for autism.

I'd like for you guys to read this article. Everyone on this forum should read it. And read the comments to the article.

http://www.psychiatrictimes.com/blog/frances/content/article/10168/2024394


Your link works perfectly, now.


TheSunAlsoRises



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09 Mar 2012, 4:55 pm

Dillogic wrote:
fragileclover wrote:
As it is now, the Asperger's diagnosis doesn't even consider how well you function, only if your traits cause you 'difficulties.'


Yeah, it does; straight from the DSM-IV-TR:

Quote:
"In Asperger's Disorder, the social deficits are quite severe and the preoccupations and are all-encompassing and interfere with the acquisition of basic skills."


Quote:
"(III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning."


That's pretty clear.


All it says is that the deficits are severe (compared to what?), and they interfere with, not prevent, the acquisition of basic skills. The level of interference is not stated or apparently important to the diagnosis, and it doesn't state if there is a requirement of how many 'basic skills' need to be interfered with. This doesn't say anything about the severity of one's difficulties or ability to function.

Clinically significant, as far as I know, is any detectible/noticeable difference from the 'norm.' I have impairments in all of the quoted areas, and if asked, those around me could point them out...however, I'm able to manage these impairments and get by. There are other Aspies on here who can say the same thing, but there are others who have very noticeable and more severe impairments...but they are considered just as 'clinically significant' as mine.

Neither of the quotes from the DSM-IV mention ability to function. It mentions impairments and interferences in forming some basic skills, but it does not say "to the point one is unable to function." It does not take functionality into account, only that ones symptoms make some normal tasks and interactions more difficult than it would be for someone 'normal.' If the DSM-IV took ability to function into consideration, there wouldn't be high-functioning and low-functioning people with the same diagnosis. I think that is clear.


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Aspie Quiz: AS - 141/200, NT - 77/200 (Very likely an Aspie)
AQ: 34/50 (Aspie range)
EQ: 32 / SQ: 68 (Extreme Systemizing / AS or HFA)
Diagnosed with AS and Anxiety Disorder - NOS on 03/21/2012