The New DSM
10 Nov 2009, 2:28 am
88BK wrote:
...aspies are not fighting for our rights, and compared to their struggles, we are hardly oppressed. but if we were to compare, aspies would be like bi-sexuals, sitting on both sides of the fence (autisctic/NT). very convenient for them, but unaccepted by most people (gay and straight people alike don't always agree with bisexuality - it is often taken offensively).
?? I don't think that's true. The autism web ring is filled with aspies fighting for autistic rights, not just AS rights.
Also, ASAN (Austistic Self Advocacy Network) is run by Ari Ne'eman, dx'ed AS, and on the front page they have articles against The Judge Rotenborg Center, Autism Speaks, and lots of other non-AS specific issues.
AUTCOM, ANI... I actually can't think of any Asperger's-only advocacy groups.
10 Nov 2009, 4:05 am
88BK wrote:
Skilpadde wrote:
That's problem with absolutes - by your definitions I'm HFA.
i offered you nothing absolute and certainly no definitions. my post was an observation on a few very specific groups of people on the spectrum with in a very specific setting, i thought i made that pretty clear. it should not be used to define yourself as anything, especially not where you are on the spectrum. you need not compare yourself to everything and everyone.
Oh, I didn't mean your absolutes, you made it perfectly clear that you based you thoughts on the observation you made with these groups. I'm sorry if you thought I had a go at you.
I was thinking in the line of the absolutes a psychiatrist or similar might use. Because Aspies present just as differently as any other group anyone can think of.
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10 Nov 2009, 7:03 am
Do you mean our own AS spectrum as part of the autistic spectrum, or our own spectrum as something else entirely?
I'm all for the former, but doubtful regarding the latter.
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10 Nov 2009, 7:10 am
i mean AS needs it's own spectrum, not part of the LFA, MFA, HFA spectrum. but more placed next to it. like LFAS, MFAS and HFAS.
basically i think it needs to be separated from 'autism' to get any real credibility because when people think 'autism' they think of generally lower functioning individuals which minimises the struggles of those with AS. if aspergers was recognized as a stand alone disorder with it's own spectrum that sits next to the ASD spectrum it would be taken more seriously because it would ne be seen as the 'joke of the ASDs' but rather a real condition that is loosely connected to ASDs (it still needs to be somehow connected so people understand it's roots, kinda like how psychosis is connected to schizophrenia).
10 Nov 2009, 8:29 am
Would be fine, if Asperger's weren't pretty much indistinguishable from regular autism in adulthood. Would be fine, if many people with speech delays and/or low IQs didn't qualify perfectly for Asperger's if it weren't for those things. Would be fine, if there weren't Aspies who cannot learn to live on their own (i.e., are severely disabled--most disabled people CAN live on their own and some Aspies can't).
If you want to get rid of the stigma of autism from Asperger's, don't remove Asperger's from the autism spectrum. Remove the stigma from autism in general.
Besides, you can't change a diagnosis based on social factors. If Asperger's is on the autism spectrum, it wouldn't make sense to take it off the spectrum no matter how much good it did for Aspies.
Not that it would do any good in the first place, even if it did make sense. If it got taken off the spectrum on its own, it would be seen as the disorder for dorks, a fad diagnosis that doctors give when parents don't want to accept that their kids are losers. It's been happening for attention-deficit disorder--people think that's a fad diagnosis that doctors give when parents won't accept their kids are brats.
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10 Nov 2009, 10:31 am
For me, "Asperger's Syndrome" is just a name given to identify the particular collection of psychological traits that I possess. In practice, Asperger's Syndrome & PDD-NOS are already understood to be Autistic Spectrum Disorders, so it seems to me that the new DSM designation is more a matter of validating that connection.
I found this article - Autism and other Pervasive Developmental Disorders Conference - on the American Psychiatric Association website. It includes the following:
Quote:
Susan Swedo, M.D. (Bethesda, MD), co-chair of the conference and chair of the DSM-V Autism Work Group, began by providing an overview of the plans for the DSM-V work group. The job of the work group is to identify criteria that will be more accurate and precise and to determine what data are needed to recommend a change in the criteria. Given that the work group does not have the resources to collect new data; recommendations will have to be based on a review of the literature and on secondary analyses of existing data. She emphasized that all changes must be warranted by data and by experience in the field and warned against just tinkering with the diagnostic criteria. Proposed new criteria for autism will need to be reliable, valid, and developmentally sensitive and will need to be tested out in field trials. She noted that the audience for the DSM is diverse: primary care clinicians are the main users, so criteria must be clinically useful and manageable, given that clinicians often have only five minutes to do their evaluations. The agenda of the conference is divided into a series of nine panels, each one focusing on a question that was raised during the first meeting of the DSM-V Autism Work Group.
I like that they are focusing on the needs of primary care clinicians & are stressing that the new criteria will need to be tested out in field trials. It appears that in the process of combining the diagnoses, they also want to improve the validity & reliability of the criteria.
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10 Nov 2009, 12:38 pm
88BK wrote:
[
the problem with both the groups seemed to be the level of emotion. with the aspies and the HFAs the HFAs would get frustrated about the aspies constantly bringing up issues of social rejection. the HFAs can not grasp the aspies disappointment over the rejection from their peers as they mostly do not care either way. they get frustrated at this topic being raised over and over, and they actually can get a bit nasty towards the aspies, especially if the aspie gets overly emotional.
aspies really care about social acceptance, it makes them feel things, usually bad things, that they can not intergrate. the HFAs seem to know they themselves are like this too, but unlike the aspies, there is no feeling attached to it.
.
the problem with both the groups seemed to be the level of emotion. with the aspies and the HFAs the HFAs would get frustrated about the aspies constantly bringing up issues of social rejection. the HFAs can not grasp the aspies disappointment over the rejection from their peers as they mostly do not care either way. they get frustrated at this topic being raised over and over, and they actually can get a bit nasty towards the aspies, especially if the aspie gets overly emotional.
aspies really care about social acceptance, it makes them feel things, usually bad things, that they can not intergrate. the HFAs seem to know they themselves are like this too, but unlike the aspies, there is no feeling attached to it.
.
That's your experience with the people in your groups who carry the labels that they do. But I hope you won't go recklessly generalizing about who cares about what based on their label. One of the ways the labels are applied by diagnosticians is by IQ score. Those who test in the mentally ret*d range get defined as LFA. Can you then make assumptions about what they care about socially based on that label? NO! My daughter got the LFA label because of her IQ test results. I seriosly hope there aren't people out there who read her records and then jump to the conclusion that she cares not at all about social problems. She is in absolute agony over her inability to integrate socially. She comes home from school weeping about it. In that respect she would right into your Aspie group (were she an adult). But she did badly on an IQ test and now it seems she's doomed to be regarded as somebody who doesn't care about social acceptance even though she cares a lot.
I know you were talking about HFA/Aspie, but I suspect if you saw that LFA label, you would think she cares even less about socail acceptance than a person with the HFA label even though she cares as much as anybody with the Aspie label and more than some. It is agony to her, regardless of the label.
10 Nov 2009, 12:50 pm
Callista wrote:
Would be fine, if Asperger's weren't pretty much indistinguishable from regular autism in adulthood. Would be fine, if many people with speech delays and/or low IQs didn't qualify perfectly for Asperger's if it weren't for those things. Would be fine, if there weren't Aspies who cannot learn to live on their own (i.e., are severely disabled--most disabled people CAN live on their own and some Aspies can't).
If you want to get rid of the stigma of autism from Asperger's, don't remove Asperger's from the autism spectrum. Remove the stigma from autism in general.
.
If you want to get rid of the stigma of autism from Asperger's, don't remove Asperger's from the autism spectrum. Remove the stigma from autism in general.
.
QFT
QFT
QFT!! !! !! !!
Because my daughter had a speech delay, she got into early intervention...early. She got speech therapy and occupational therapy and "how to play with the other kids" therapy. She was on the diagnostic radar and therefore got her diagnosis a lot younger than many with Aspergers Syndrome ever do (the diagnosis seems to come along in the early teens for the most part these days). She also got significant help for her significant academic difficulties. But she gets brain freeze under stress. She literally cannot think. If you put her on the spot and start asking her questions she is unable to answer them. Her IQ (as measured) plummets into the MR range. It climbs back out of the MR range (in my subjective opinion- obviously not measurable) when the questions stop and she is the one asking questions instead of having to answer them. But by then, the testers have already written the score in stone. And so she has a label of LFA even though one would think she is an Aspie if they overheard her going on about her special interests.
I hate that people think they can tell all kinds of things about how a person is going to function in various arenas and what they will be like based on a label. There is just too much variety.
10 Nov 2009, 1:10 pm
88BK wrote:
CloudWalker wrote:
Skilpadde wrote:
Shivers... That sounds absolutely ghastly.
Me too. That was the main reason I stopped going to church. I just can't stand having to give a report on what I have done every week and have everyone saying "hallelujah" or "praise lord" to me after every sentence.
If your observation is valid, it will put me in the hfa group. Not that I'm complaining, I guess I've just got used to the term asperger and found that a little bit new to me.
May I suggest that your sample is slightly biased because people in your groups are those that are willing/hoping to share in the first place? They may have different expectations of the form of sharing but they all have the desire to discuss their experiences.
May be those hfa kids who are there just to play are the exceptions. But I think I'm closer to their mindset than the other groups too. This may actually mean I'm closer to hfa, but I'm inclined to think your observation have more to do with personalities. I think Callista's idea of group dynamic is part of the reason too.
you do not need to suggest it, that is what i was trying to say in my post above yours (perhaps you did not see it). my observations aren't so much 'biased' (i don't have any sort of preference) as it is situation-specific. it is not an observation on people on the spectrum, it is an observation of the dynamic of the people in the groups. i do not think it is even close to a good way to see where you sit on the spectrum, especially because, with the exception of the hfa group, the members of the aspie groups have very different parts of their personalities bought out within the group setting from when when you talk to them one on one. within the group, the shyest aspie can become a raging bull if certain triggers are set off, and vice versa ,some of the more outgoing individuals freeze up and become almost mute in the group setting.
it totally depends on the individual personalities to some degree. having said that, it does seem that there is some consistency to what will happen within a group, that how we came to realise that we needed to separate certain groups. but we always know that within the aspie group there will always be a mix of help/hinderence, and we know with the self-diagnosed group that they have consistently suffered hardship, which is why it was decided their group would be led by trauma councilors. but that is the extent of that consistency.
sorry to ramble.
Sorry, I guess I misunderstood what you meant.
Just in case there's more misunderstanding, I didn't say you are biased, what I said was the sample you saw may be biased because of its settings.
10 Nov 2009, 1:32 pm
Jono wrote:
If Asperger's gets eliminated, will we still be diagnosed as autistic. Otherwise, what will happen with support for those of us who have already been diagnosed with Asperger Syndrome?
From my understanding, Asperger's will be termed as ASD along with the other autistic types. So everyone on the spectrum from LFA to HFA/Asperger's will be Autism Spectrum Disorder. Then there will be degrees of severity I would suspect.
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10 Nov 2009, 2:37 pm
Janissy wrote:
Callista wrote:
Would be fine, if Asperger's weren't pretty much indistinguishable from regular autism in adulthood. Would be fine, if many people with speech delays and/or low IQs didn't qualify perfectly for Asperger's if it weren't for those things. Would be fine, if there weren't Aspies who cannot learn to live on their own (i.e., are severely disabled--most disabled people CAN live on their own and some Aspies can't).
If you want to get rid of the stigma of autism from Asperger's, don't remove Asperger's from the autism spectrum. Remove the stigma from autism in general.
.
If you want to get rid of the stigma of autism from Asperger's, don't remove Asperger's from the autism spectrum. Remove the stigma from autism in general.
.
QFT
QFT
QFT!! !! !! !!
Because my daughter had a speech delay, she got into early intervention...early. She got speech therapy and occupational therapy and "how to play with the other kids" therapy. She was on the diagnostic radar and therefore got her diagnosis a lot younger than many with Aspergers Syndrome ever do (the diagnosis seems to come along in the early teens for the most part these days). She also got significant help for her significant academic difficulties. But she gets brain freeze under stress. She literally cannot think. If you put her on the spot and start asking her questions she is unable to answer them. Her IQ (as measured) plummets into the MR range. It climbs back out of the MR range (in my subjective opinion- obviously not measurable) when the questions stop and she is the one asking questions instead of having to answer them. But by then, the testers have already written the score in stone. And so she has a label of LFA even though one would think she is an Aspie if they overheard her going on about her special interests.
I hate that people think they can tell all kinds of things about how a person is going to function in various arenas and what they will be like based on a label. There is just too much variety.
Thats why the diagnostic needs to be based on traits. To say "you are an aspie, or you are a HFA, or NT.. isnt right. We are all partially a little of everything. You cannot have atomic spectrums. People dont work like that.
Either we are clinically autistic or not. Then people should be dealt with on a basis of co-morbids.
The concept of aspie makes as little sense as mulatto or quadroon. Then there are the people that would say we are something completely different. Thats like saying cajun is a new race.
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