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Kaleido
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23 Mar 2008, 6:04 am

Danielismyname wrote:
Saying you have the disorder, but you haven't been formally diagnosed is a lie;

I think that is why it irks me so much. I would much rather someone just say honestly that they suspect they have it or have taken a few online tests and think they are accurate rather than lying and saying they have before a professional has either discussed it or said completely officially that they have it.



Zonder
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23 Mar 2008, 6:39 am

Danielismyname wrote:
Saying you have the disorder, but you haven't been formally diagnosed is a lie; no matter how sure you think you are.


I would have liked to be more precise in my WP Profile, when deciding how I categorize myself, but I was given limited options. Those options are:

Have Aspergers-Diagnosed
Have Aspergers-Undiagnosed
Not sure if I have it or not
Family member with Aspergers
Other autism spectrum disorder
Neurotypical

"Not sure if I have it or not" does not begin to approach the STRONG identification I have with many of the characteristics of AS. "Have Aspergers-Undiagnosed" is a leap I didn't take until a couple of days ago. I changed my profile because "Not sure if I have it or not" was misleading, however "Have Aspergers-Undiagnosed" makes me a self-diagnoser.

How about "99% sure I have Aspergers"? Then I wouldn't be considered a liar.



tybald
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23 Mar 2008, 6:52 am

Tempy wrote:
Pithlet wrote:
Claiming one is highly sure they have it based on all of the research while admitting they have no formal Dx is not a lie or a guise. A lie is intended to decieve and make someone believe something they know to be false. If someone wants to know that all they need to do is look in their profile to see what option they chose. There is no deception in that, unless they claimed they were officially dxed when they weren't. I think it's kind of funny that your argument actually proves how unreliable an official Dx can be, or how easily it can be missed when it's mild. How do people know for sure they weren't misdiagnosed? I don't consider them liars, even if all of their doctors had conflicting opinions. Suppose several doctors were sure you weren't, but you found one that thought mabe you were. Does that one opinion now make you official enough, or do you take the majority vote? What if they were all wrong? Just because you listened to and believed the last guy who saw you doesn't make you so much more of an honest Abe or your condition more real than someone who carefully self diagnosed and admitted to it.

Where many of us live, yes medical care is both lazy and expensive. And not only that, dealing with all the buerocracies to try and get aide is a nightmare even for people who are obviously profoundly disabled. Just because some have been forced to adapt and grow up without help and have weighed the options and decided to stay that way does not mean they lack a disorder. Telling anyone that they think they may have it for whatever reason is not a lie. That accusation is going a bit far, don't you think?


I definitely agree with you.


Seconded



2ukenkerl
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23 Mar 2008, 8:02 am

Zonder wrote:
Danielismyname wrote:
Saying you have the disorder, but you haven't been formally diagnosed is a lie; no matter how sure you think you are.


I would have liked to be more precise in my WP Profile, when deciding how I categorize myself, but I was given limited options. Those options are:

Have Aspergers-Diagnosed
Have Aspergers-Undiagnosed
Not sure if I have it or not
Family member with Aspergers
Other autism spectrum disorder
Neurotypical

"Not sure if I have it or not" does not begin to approach the STRONG identification I have with many of the characteristics of AS. "Have Aspergers-Undiagnosed" is a leap I didn't take until a couple of days ago. I changed my profile because "Not sure if I have it or not" was misleading, however "Have Aspergers-Undiagnosed" makes me a self-diagnoser.

How about "99% sure I have Aspergers"? Then I wouldn't be considered a liar.


But HOW do you know it is 99%!?



Zonder
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23 Mar 2008, 8:13 am

2ukenkerl wrote:
But HOW do you know it is 99%!?


Just like a professional diagnosis, its subjective. I'm subjectively 99% sure because I see the pieces of the puzzle fitting together.

Z



2ukenkerl
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23 Mar 2008, 8:34 am

Danielismyname wrote:
Quote:
Claiming one is highly sure they have it based on all of the research while admitting they have no formal Dx is not a lie or a guise. A lie is intended to decieve and make someone believe something they know to be false. If someone wants to know that all they need to do is look in their profile to see what option they chose. There is no deception in that, unless they claimed they were officially dxed when they weren't. I think it's kind of funny that your argument actually proves how unreliable an official Dx can be, or how easily it can be missed when it's mild. How do people know for sure they weren't misdiagnosed? I don't consider them liars, even if all of their doctors had conflicting opinions. Suppose several doctors were sure you weren't, but you found one that thought mabe you were. Does that one opinion now make you official enough, or do you take the majority vote? What if they were all wrong? Just because you listened to and believed the last guy who saw you doesn't make you so much more of an honest Abe or your condition more real than someone who carefully self diagnosed and admitted to it.

Where many of us live, yes medical care is both lazy and expensive. And not only that, dealing with all the buerocracies to try and get aide is a nightmare even for people who are obviously profoundly disabled. Just because some have been forced to adapt and grow up without help and have weighed the options and decided to stay that way does not mean they lack a disorder. Telling anyone that they think they may have it for whatever reason is not a lie. That accusation is going a bit far, don't you think?


Saying you have the disorder, but you haven't been formally diagnosed is a lie; no matter how sure you think you are (this is exactly what I said--perhaps you're projecting yourself?). I'm sure I'm a duck because I can quack like one, I have webbed feet, I can even paddle! If you look at me funny it might appear that I have feathers; I can also waddle like a duck. I'm not a duck, no matter how much I think I am one.

Well, I wasn't being assessed for any specific disorder at the time other than knowing that I had a psychotic episode which led to a psychiatric hospital; they were kinda treating acute anxiety, but the point still stands: I saw a psychiatrist for the disorders I was diagnosed with, and he noticed I had AS, and then I went to an autism clinic, and they found out I had AS too. I'm not being biased towards anyone here for I know what misdiagnosis feels like, and that's my point.

When I thought I had schizophrenia, and I was assessed for such, I was happy that I didn't have it (I never said I had it before seeing someone, no matter how high I scored on the tests, how many symptoms I experience, no matter if I meet the diagnostic criteria, and it fits my history).

I didn't say "may", I said "have". Well, considering that the majority of individuals with an ASD would be homeless in the least if it wasn't for family or social services, a diagnosis is quite important if one wishes to move away from home (this allows help with finding work and housing).

2ukenkerl,

If doctors cannot be trusted to diagnose people correctly in the majority of cases, can't that logic follow that the disorder itself doesn't exist? After all, professionals are the ones who define these disorders, and they teach other professionals how to diagnose and treat them. And if one cannot trust a doctor in diagnosis, how can one trust Dr. Asperger or Dr. Kanner?


You have quite a stretch there! It is like saying "Doesn't it follow that if the average 'programmer' doesn't REALLY understand computers and can't just be trusted to write a given program, that computers don't exist?". Ask the average programmer what a lock is, or atomic means, in computer terms, and they won't be able to answer! MOST won't even know what an accumulator or register are! That is almost like finding a scientist that can't add 2 and 2! I have to wonder what the average college teaches.

BTW Asperger defined his, and Kanner defined his, syndrome. What they speak of NOW was derived by debate and consensus. Outside of the idea of social isolation, not much has really stayed the same. SURE, they have kept some symptoms, but the degree or requirement has changed. After all, asperger HAD to be unique to some degree to be of note in any way.

ALSO, quacks exist just about EVERYWHERE, and all sorts of things are misdiagnosed! Just yesterday I saw a movie where a woman was misdiagnosed with CANCER! It was via an MRI. MRIs DO help, and cancer isn't that hard to diagnose, and DOES exist!

BTW I never said I was diagnosed, and even corrected most of the assumptions that I have been. I certainly have no reason to lie. I only told my mother and stepmother. My mother tried to shoot it down, but just came up with more proof. ALSO, a lot of past statements/problems end up being AS symptoms. Even the things I DON'T have that seemed to argue against AS(like the lack of an eidetic memory, and great scholarly record(Though I WAS good at first, and lost interest)) are not all that common in AS anyway!

BTW I came up with theories that some jerk "tried" and "proved" that they didn't work. When I found out, I usually just tried it for REAL(They left out some part, or totally misunderstood, or WANTED it to fail), and proved it DID work. Likewise, doctors may not always be faithful to another's description, etc...

In any event, I don't respond to every topic here. I don't seem to have the weight or milk problem, for example. I respond when I think I have something to add, and some of the polls. BTW I am FAR more likely to agree with the average person here than timtex is! I also learn a bit more about myself. I even have deficits I have hidden a LONG time from even myself.



poopylungstuffing
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23 Mar 2008, 9:16 am

I don't pretend to be the way that I am....and the way that I am seems to sorta fit someplace on the autistic spectrum....otherwise I wouldn't be here and edging towards 3000 posts...I am not diagnosed, and I don't know if it will ever happen..

I do have impairments to a certain degree....that alot of people on the autistic spectrum seem to have...(mild face blindness, auditory processing difficulties, a tendancy towards occasional meltdowns...um...wonky motor skills...I cannot drive a car because of sensory overload when I am behind the wheel....emotional immaturity....horrrrible organizational skills....or things often associated with executive dysfunction...When I do manage to get a job, it is understood by my employers that I am "different"...and special allowances are often made....and inevitably the jobs that I do get are quite menial for my age...my superiors are often younger than me....

It could be that they are to some degree self-imposed limitations and I just have not had enough positive reenforcement...or the personal skills to generate it from within....
I did recieve some trauma as a child....and it did have a negative impact on me, I did wind up with PTSD to a certain extent...and that seemed to change me a bit....for the worst...but I doubt that it is the cause of all my Autistic-spectrum commonalities.....

AS traits seem to run in my family on both sides...My ring fingers are longer than my index fingers...I don't lie in my postings..i don't knowingly pretend to be anything I am not.



silentchaos
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23 Mar 2008, 9:37 am

Just because someone is a doctor or has any sort of degree or certification does not mean they are better at something than someone without it. In most cases I'm sure they are, but if you do the research yourself then guess what? You have the exact same information that they do, a piece of paper does not add +1 to diagnosing or anything like that. Personally i am extremely skeptical of well...anything but more so when it comes to any medical diagnoses, I don't even believe i have half of the things i have been diagnosed with. Some individuals may not have insurance or even more unfortunately a doctor that knows more of what they are doing than the patient, why can't they draw their own well informed conclusions? And it is not a lie to share your opinion about what you have or do not have.

I have never had a particularly incompetent doctor but i have had to deal with more than enough clueless vets,teachers,IT specialists,etc. I don't know how many times i have had to lead a vet to a problem before he would stop diagnosing and prescribing random things that obviously were not problems. I know doctors are held to higher standards but as with all matters of man there will be incompetence and even worse a lack of care for the outcome. It is not irresponsible to look into matters of personal fitness without a doctor and if need be come to conclusions contradictory to theirs, in fact i would consider it a necessity.



Danielismyname
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23 Mar 2008, 10:17 am

silentchaos wrote:
...a piece of paper does not add +1 to diagnosing or anything like that.


It's +6, one can take down Kangaxx The Demi-Lich with the thing. Seriously, professionals add the knowledge of what the disorders actually look like, how they manifest physically--that is why it's important to see those who diagnose ASDs to be sure (psychologists and psychiatrists). If you don't like one opinion, find another; though it'll probably be hard to do such if you have an ASD, have a family member call various doctors and ask if they are able to recognize ASDs in adults.

Self-diagnosis is an important tool for those who were missed when they were younger, or the disorder didn't exist then (I'm sure everyone knows of an old uncle from someone that never left home, never married, can spout facts all day, and appears "odd").



Zonder
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23 Mar 2008, 10:23 am

Danielismyname wrote:
or the disorder didn't exist then


The disorder has probably always existed - grouping and labeling the cluster of "AS" traits is what's new.

Z



Danielismyname
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23 Mar 2008, 10:36 am

Zonder wrote:
Danielismyname wrote:
or the disorder didn't exist then


The disorder has probably always existed - grouping and labeling the cluster of "AS" traits is what's new.

Z


Yeah, I know; I meant it didn't exist as a label then; autism has been around for fifty or so years as a label, but autism with relatively spared speech is a new label, and there's a lot of adults out there who don't know they have it (most probably don't know anything is "wrong" with them I'm guessing).

I picked up a pamphlet at an autism clinic, well, my mother did, and they found that adults are usually picked up now due to being unable to handle a society they don't understand as anxiety and depression show themselves. This is how I was picked up.



Zonder
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23 Mar 2008, 10:39 am

Danielismyname wrote:
being unable to handle a society they don't understand as anxiety and depression show themselves.


Absolutely. That's why I'm here. 8)

Z



autism0
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23 Mar 2008, 11:22 am

I noticed my thread kind of has turned into a "Do you really have autism/aspergers thread"? rather than what I was trying to focus on. Faking autism and Faking aspergers, and the people who do this, their reasons, how they do it, Factitious Disorder and malingering, their strategies, their history that led they to do this.

Related would be the exaggeration or embellishment of a person's autistic/aspergers traits, done for, again, increased medical attention, sympathy, relaxing of social and work responsibilities, and a kind of "giving up" regarding the typical social and work world.

I've recently heard of a case of a person, now in their 20's, who is apparently, and likely, and has been for a long time, malingering not only autism, but profound or autism, including refusal to communicate via speech, refusal to look at anyone, communication with a keyboard device. And this person, in the past, starting about 12 years ago, started, first, malingering DID (multiple personalty disorder) for quite a while, then switched to schizophrenia and apologized publically to many friends for "deceiving" both his/herself and the friends about this. Then after a few more years or so, this person began setting schizophrenia aside and claiming autism. Now profound autism.

The person appears to have vividly "played" each part, very well, from DID, to Schizophrenia, to Autism.

I've been confused at how this has been allowed to proceed with little of the right critical assessment of this. I've heard this person has gone from doctor to doctor, and presents his/herself as he/she wished to each doctor, for the purpose of getting the diagnosis he/she wants at that time. Whereas it is more typical, and much better, to stay with the same doctor over time, this person appears to have seen dozens, and gone to different hospitals for treatment.

This person also has a huge list of physical ailment-claims and appears to seek medical attention for physical ailments that can rarely if ever be "found" by the doctors through invasive procedures, hospitalizations, etc.



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23 Mar 2008, 11:37 am

I haven't heard of it, personally (concerning autism that is).

But it's possible of course; malingering and factitious disorders happen, though I read something of note when a person I know was accused of this by two professionals (she was later correctly diagnosed with an extremely rare neurological disorder that relies on a specific physical test to diagnose it); 50 percent of those who are seen with a factitious disorder usually have a real underlying physical disorder, it's just not diagnosed correctly.



Last edited by Danielismyname on 23 Mar 2008, 11:39 am, edited 1 time in total.

wisteria
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23 Mar 2008, 11:38 am

autism0 wrote:
I noticed my thread kind of has turned into a "Do you really have autism/aspergers thread"? rather than what I was trying to focus on.


People are probably explaining their opinions drawing from their personal experiences.

Quote:
The person appears to have vividly "played" each part, very well, from DID, to Schizophrenia, to Autism.


One thing to consider is that many "autistic" people are capable of acting somewhat normal in order to try to fit in. I doubt more than a few can do it perfectly, but I know that I can force myself to make eye contact, and if I concentrate with everything I have, make spoken conversation. But it's exhausting, and "letting go" of these efforts is actually a return to what a person truly is, not an effort to be something he's not.

Quote:
I've been confused at how this has been allowed to proceed with little of the right critical assessment of this. I've heard this person has gone from doctor to doctor, and presents his/herself as he/she wished to each doctor, for the purpose of getting the diagnosis he/she wants at that time. Whereas it is more typical, and much better, to stay with the same doctor over time, this person appears to have seen dozens, and gone to different hospitals for treatment.


This person sounds fairly unique. I did once encounter a person who claimed to have DID and his personalities had varying levels of autism, and some were "NT." Which seemed to defy logic-- if autism is something hardwired in the brain, how could it be one of many personalities?

Probably this person you describe does indeed have DID, and perhaps one of his personalitites is, or at least acts, autistic. I mean there are people with DID who have convincing personas of the opposite gender. Does that mean the person is that gender, or is not that gender? It's not a yes or no question. Either way, he sounds disturbed enough to merit government assistance, if he receives it, legitimate autism or not.



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23 Mar 2008, 11:44 am

nomad21 wrote:
Rainstorm5 wrote:
JakeWilson wrote:
How easy would it be for someone with an unspecified ASD to pose as an Aspie?

The easiest way to tell might be to accuse someone of being an NT. If they protest too much, the accusation might have merit. If they could care less what you think, they're probably aspie.


I disagree. One of my biggest pet peeves is when someone accuses me of lying when I'm not, I can't stand it. I'm sure many people on here wouldn't like being called a liar either, especially over something so serious.


That was actually a joke, but okay then. I'm very bad at jokes. Idon't like being accused of lying, either, but at the same time I couldn't care less WHAT people think of me. My life isn't going to be affected by somebody on a forum. In real lfe, I haven't had a problem with this because the evidence is plain to see in my body language/movements and behavior. That's hard to to show here, unless you post a candid video of yourself.

Anyway, the whole premise of this argument strikes me as strange and reminds me of Nicole Kidman in the movie 'The Invasion,' particularly the string of scenes where she acts emotionless while moving moving amongst the Pod People. While I watched that movie, I realized there was an interesting dichotomy going on there. In the storyline, the POD people got along very well without outward display of display of emotion and suddenly the nations were signing previously undreamt-of peace accords and so on. So was being a POD person really a bad thing? Evidently so, because Nicole Kidman's character thought it was so horrible to be trapped in a world where everyone 'got along' she fought it tooth and nail. When the movie ended, I began thinking of Asperger Syndrome, which the POD people reminded me of. In the end, the 'normal' people conquered the "evil" Pod People and the world was crap again and all was well in NT-land. It occurred to me at the time that it was the other way around for me - that I was a POD person trying to act like a normal person in a world full of NTs. I don't feel that my life and my situation is 'good' for me. I'm routinely treated like crap by coworkers and strangers. The very idea confounds me. Who would CHOOSE this?

Being an aspie isn't an "alternative lifestyle," it's a condition. You either have it or you don't. It's like you're either pregnant or you're not. There are women out there who pretend to be pregnant for the attention/sympathy, but ultimately they're always found out and they end up looking stupid and/or insane.

Sure there may be mentally ill people out there wanting to fit in here but what does it really matter what they do? What does it accomplish? Do people in here honestly believe this place is being 'infiltrated' by evil NTs hell-bent on its destruction? If there are people willing to fake being an aspie then there's something wrong wth them mentally (whatever that may be) and they're not really 'normal' either, are they?


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