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LipstickKiller
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25 Nov 2009, 7:34 am

I'm living independently with kids, but struggle emotionally and socially. I like my label. It's something I can hold on to when I doubt my objectivity and need reassurance that my suffering is not imagined, that I in fact do have problems mostple don't, and that no amount of "stop pitying yourself" is going to make me "normal."

I've always been odd, first to others, then to myself. With the label I can see myself more clearly.

I don't need assistance, at this point at least. But there are many roads that aren't open to me. As long as I stick to a path where my autistic side doesn't interfer too much I'll be alright. But I still consder the label necessary.



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25 Nov 2009, 12:22 pm

Danielismyname wrote:
You don't need a medical label that someone else made to understand and/or improve yourself if you yourself don't possess the qualities that make the disabling label itself (you'll learn nothing anyway).

It's all about help with a medical label, and that "help" is in ways of basic to moderate survival, not "help" in the ways of personal insight and philosophical pondering (sure, that can be a byproduct, but that's still a minute thing compared to the help you garner from having the label).

It's pure necessity.

If I'm suddenly able to work like the rest of humanity, make a simple sandwich, attend school, pass a simple written test, handle going to the shops without burning in the melting pot, and whatnot (let alone actually talking to someone), they can have my silly label back, as I wouldn't need or want it then.


I have three reasons for wanting a diagnosis:

-next time I'm starving or homeless there may be help available
-if anyone is around who cares about me I wouldn't want them to feel that they are solely responsible for me. With a diagnosis I can at least pretend to have somewhere else to turn to so they can get out if they want to without feeling guilty
-political activism: to dispel myths about autism since I don't fit them

There's no need to belittle other people's struggles even if they don't resemble your own!



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25 Nov 2009, 6:57 pm

LipstickKiller wrote:
I'm living independently with kids, but struggle emotionally and socially. I like my label. It's something I can hold on to when I doubt my objectivity and need reassurance that my suffering is not imagined, that I in fact do have problems mostple don't, and that no amount of "stop pitying yourself" is going to make me "normal."

I've always been odd, first to others, then to myself. With the label I can see myself more clearly.

I don't need assistance, at this point at least. But there are many roads that aren't open to me. As long as I stick to a path where my autistic side doesn't interfer too much I'll be alright. But I still consder the label necessary.
this was me a few years ago. now I do need assistance and it's a relief to have it, although I really want to get back a state of self-sufficiency. I'm just not sure if I'll find a place to fit in now that traditionally nerd jobs are requiring touchy-feely people skills. if I didn't have kids and could come home and crash, I could probably handle the extra work of filtering input and putting on the normal act, but I don't have any reserves for it now and I'm falling behind in competitive job skills.

I'm considered AS with high cognitive skills, but I can barely concentrate on anything for 5 minutes these days.



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25 Nov 2009, 7:27 pm

Irisrises wrote:
I have three reasons for wanting a diagnosis:

-next time I'm starving or homeless there may be help available
-if anyone is around who cares about me I wouldn't want them to feel that they are solely responsible for me. With a diagnosis I can at least pretend to have somewhere else to turn to so they can get out if they want to without feeling guilty
-political activism: to dispel myths about autism since I don't fit them

There's no need to belittle other people's struggles even if they don't resemble your own!


I ain't belittling anyone, and to be realistic, my struggles aren't all that great; just like anyone else with a milder ASD.

-If you're disabled enough to actually be homeless and/or starving at some point without help, you'd warrant a label whether you were homeless/starving or not at this time. So, yeah, a label works here
-If people can't accept you for who you are, they aren't worth being around or worrying about in my mind; having a label that offers them an easy "out" or not seems to be a self-esteem/self-worth problem, which doesn't warrant any ASD label by itself. There's no difference if you're a burden on those around you or the government; it's same thing
-If you fit the profile of an ASD, you have an ASD and you can receive a label; if activism is your interest, have fun with it (try not to fall into the trap of ending up like the people you're picketing against, as it's really annoying; we just speak for ourselves, no one else). Myths aren't in any medical profile of an ASD I see



Irisrises
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27 Nov 2009, 1:27 pm

I appreciate what you're saying. What made it sound belittling is that I can do all the things on your list (I can't get a job now, but I could when I was young) ( and as for simple written tests, I ace very difficult written tests) but that does not mean I'm on a roll.

For the sake of clarity I'll explain what I mean a bit more.

-I've never been starving AND homeless, just one at a time. When I was starving I had my apartment. Then I sublet it and then I sold it, so now I'm technically homeless, but as homeless people go I'm rather affluent. I'm good at surviving, just not at living.

-Not wanting someone else to feel stuck with me is not so much to do with self-esteem but with the kind of relationship I want to have. I don't want someone to dump all his problems on me and expect me to deal with it, therefore I don't do that to him. I know less about relationships than most but I notice a lot. When dealing with my emotionally abusive mother I would always note what she was doing and not do the same thing, same thing with sexual harassment which I've also dealt with a lot, same thing with the emotional abuse I deal with today. I WILL NOT BE LIKE THEM. That's one way forward, for someone as quiet as me it might be the only way.

I do think there is a difference between getting gov't help and getting family help (I speak as someone who's done both). With family money I've been able to pay it back, but if I hadn't that would have been an issue for me, but the whole point of gov't money is that people pay taxes so that there will be provisions available. I like to pay taxes when I'm able to because I'm happy to know that someone might be helped by it. It's not a resource to take wrongfully advantage of, but when they don't want to help me when I'm starving, I don't feel that I'm the one who's doing something wrong.

-I agree that activist is not a term that accurately describes me, I'll be very surprised if I ever picket anyone. Better perhaps to say passivist, that is pacifist - a non-participant in the abuse.

My struggles are pretty great. :( But that's life. I'm glad you're here. I'm going to go up on the mountain now.



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27 Nov 2009, 2:26 pm

Simon Baron Cohen has a vested interest in keeping the status quo.

It is his ideas of "Asperger’s" that are taken as fact, never mind that they are complete theory, poorly defined and based on many assumptions chained together. He can’t see the grass from the trees and so focused on “male brain” it is I becoming an exercise in “proving” himself right rather than the reality.

Arbitrary and psychiatry go hand in hand. It is an arbitrary distinction, so you would expect him not to want to change his tune. It is not he scientific method being applied here.



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28 Nov 2009, 12:24 am

Nothing in Psychology can be said to be scientific, it is a collection of folk stories told by people who are attracted to the strange and bizarre.

I thought Baron-Cohn recanted about male brained?

While none of it counts for much, it does have a function, the main one being for Social Services.

Disability is a Legal Word. Where is the narrow line that says, this person gets help with education, support, medical care, and the next person does not?

When America had a State Mental Hospital System, you could be locked up for life on your family say so, without appeal.

When the Supreme Court said no, all of the people who had fed the State System were released, got welfare for a year, then were told they no longer qualified. When they had the status of being locked up, they all qualified.

So a change of the DSM is a change of Social Services, and they are short on money.

There is the research side, study will not be funded for an ex disability.

The main employer of Psych services is welfare, and their paycheck comes before services rendered. Cutting the rolls to keep up employment, they will vote their income.

Research is making a study of savant talents, special interests, and other talents, which do run with Autism. Our world is build on past one person obsessions, and one study of DNA is being funded by The Department of Defense.

It has been observed that the educated did produce in the past, and most were self educated. Trying the higher education path broadly has shown that Masters and Doctorates from Universities do not produce results equal to a small self educated group in the past.

Half of all Patents are gotten by independants, kitchen table inventors with litte formal training, the other half by University and Corporate, and the most important steps forward, come from the independants.

So I see a differance between those who would study a productive part of the human genome, and State Welfare Workers. The DSM has nothing to do with high performance.

As for who is disabled, unable to function in society, we do not give welfare to those released from jail. All of the social services, job training, are private. Billions for arrest and conviction, nothing for prevention or rehabilitation.

So at least in America, the motives are political and self serving. If a Dx of Aspergers entitles a person to enhanced treatment, and they can get it private, it can only be avoided by being abolished, and moving disability to LFA only. Psych Corp will vote their paychecks, so this is not an independant review of standards.

The likely outcome is one set of standards in America, and others in Great Britain, Europe, Australia.

One reason might be the rising view, which Baron-Cohn, Tony Attwood support, of females having the same condition, but a different presentation, which opens the benefit rolls by 100%.

Another view is Genetic Study, it is not a Psychologial disorder, but a Neurological differance. This moves the money out of Psychology, and into Science.

America is political, the lobbists run wild, and drug companies claim a right to drug everyone getting a disability.

State Governments are $150 Billion in the hole this year, and next looks worse. They can trim the welfare rolls, or trim State Workers. Self Interest is not Science.

Most of the work done in the Asperger field has been outside of America. Asperger, Kanner, Wing, Baron-Cohen, Attwood, and we have Autism Speaks, who hates Aspergers, and has money to throw around. Aspies are crimping their fund raising message.

Autism Speaks, Drug Companies and State Governments, are going to lobby the DSM revisions.



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28 Nov 2009, 12:59 am

Zonder wrote:
Maybe they feel that the Aspie movement is too "popular" and one-sided. After all, Aspies can be more verbal, and perhaps are better able to advocate for themselves. Because the word is out about Asperger's symptoms etc. more than HFA, lumping everyone under the Autism Spectrum label levels things out, particularly because behaviorally, it can be hard to distinguish between AS, HFA, PPD-NOS . . .

Z


Oh dear. I hope with this, the "Lower-Functioning Autistics" aren't thrown under the bus by the HFAs and Aspies...


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28 Nov 2009, 1:05 am

Willard wrote:
and are generally indistinguishable from yuppies except for an endearing absent-mindedness and adherence to routine.


SInve when were we compared to yuppies. At least we aren't hipsters...

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because I guaran-Goddamn-tee you the system isn't gonna protect you - not even the laws supposedly enacted to protect and defend the disabled.


Sic the ACLU on their collective asses? Given they have a rep for taking anything.

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Autism is autism and it's a disability.


I don't feel like an Ion Cannon just shot me :wink:

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. You may find down the road that just how high-functioning you are kinda depends on how tolerant the NTs around you are feeling that week.


True that


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31 Dec 2011, 8:07 am

Here's the research of Baron-Cohen: http://www.google.com/url?sa=t&rct=j&q= ... xmknaXP9Ag


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31 Dec 2011, 8:54 am

Science has proven to us that AS parents are likely to give birth to AS or autistic children, so yeah, it is ASD. But we aren't supposed to clump together. That creates more of a goddxxx stereotype. If that's their purpose they might very well create a million name tags for each of us. What ought to be done is actually depict asd using a spectrum, not a name tag. And that includes everything from LFA to BAP, so that everyone is happy. Just drag the cursor.



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31 Dec 2011, 12:31 pm

Apple_in_my_Eye wrote:
Zonder wrote:
To quote Dr. Baron-Cohen, Apple_in_my_Eye:

Dr. Simon Baron-Cohen wrote:
We also need to be aware of the consequences of removing it [Asperger's Syndrome]. First, what happens to those people and their families who waited so long for a diagnostic label that does a good job of describing their profile? Will they have to go back to the clinics to get their diagnoses changed? The likelihood of causing them confusion and upset seems high.


If he's talking about kids, does he really expect schools to say "ok your IEP is invalid now until you get re-assessed" or something? I'd expect the schools would simply re-write some words in some file to have an equivalent effect ("mild autism, w/o speech impairment, IQ>80, +whatever" instead of "AS"), and end up doing what they were already doing. The cost to the school system/state would lead them not to re-assess people anyway.

I think he's really worried about something else, though I'm not sure what.


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Second, science hasn’t had a proper chance to test if there is a biological difference between Asperger syndrome and classic autism. My colleagues and I recently published the first candidate gene study of Asperger syndrome, which identified 14 genes associated with the condition.

We don’t yet know if Asperger syndrome is genetically identical or distinct from classic autism, but surely it makes scientific sense to wait until these two subgroups have been thoroughly tested before lumping them together in the diagnostic manual. I am the first to agree with the concept of an autistic spectrum, but there may be important differences between subgroups that the psychiatric association should not blur too hastily.


I guess I see it the other way around.

For now it's behaviorally determined, and, as you say, no one knows how to differentiate the groups biologically. So maybe it's better to have one big category and work to subdivide it down biologically, rather that stick with historical/behavioral possibly artifactual categories, until they're shown to correspond to biology or not. The current divisons could be misleading -- maybe ASD's biologically break down into 3 or 7 categories instead of 2. And even if there are 2, it seems an unnecessary assumption that they naturally break down along the lines of AS & HFA.

Maybe what I'm proposing would be hugely disruptive to research, but in the long run pursuing a flawed paradigm might be worse.


I think it's quite possible that Dr. Baron-Cohen and other prominent researchers highly suspect that HFA and Aspergers are different. My guess is, behind the scenes, this issue has been passionately debated. It's being done for the sake of convenience because viable distinctions were never made between Autism and Aspergers, period. Also, Autism, itself, can be redefined without changing the core criteria listed in the DSM.


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31 Dec 2011, 1:52 pm

The very existence of WrongPlanet challenges the conventional notions of autism from BOTH a scientific and non-scientific perspective . IF the core criteria for Autism is impairment in social interactions then one would have to make some provisions for those who do quite well in different mediums; i would think. Theoretically, a web cam and a decent PC takes care of practically all of (A-1).

http://www.cdc.gov/ncbddd/autism/hcp-dsm.html


This is getting interesting. Yes, indeed. LoL.


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