"fake aspies" and self diagnosis. DISLIKE, sorry.

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AphexSam
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08 Jun 2010, 11:06 am

Okay I hope I don't get flak for this as I know alot of people on here are self diagnosed but for some strange reason it really annoys me and I know it shouldn't. I myself was diagnosed by professionals and I had to go through months of tests (EEG's...or is it ECG not sure but they attach wires to your'e scalp) and counselling and for someone to just turn around and say yeah I have aspergers because I read about it in an article just annoys me. Maybe its my own bitter experiences but I've met people who say they have Aspergers when actually they don't (and theyv'e later admitted to that), they just don;t want to try in social situations and use it as an excuse and for attention. It really tears me up I mean I have alot of troubles with aspergers, sensory issues and things like that and here are some purposefully normal people who are just using it as an excuse. Now most of the self diagnosed community isn;t like that but it does beg the question, if they do have Aspergers why hasn;t it been diagnosed. I mean doctors check up when your'e little to see if there's any problems and that is how the majority of people who I've met have been diagnosed and if you think you have it go see your'e doctor and ask them for what they think, if they think you have it they'll give you a referral to a physchiatrist. I myself was only diagnosed last year after counselling for depression, was then reffered to doctors who tested it and stuff yet I've had lots of people tell me beforehand but I just shrugged there comments off as they weren't the ones to diagnose me, only the proffesionals could in my opinion. it just annoys me, sorry.
Discuss :) and no rude or insulting comments. I know this may be seen as an issue of controversey but let us only have reasonable mature valid discussion.

Moderator note: this poster has evolved in his thinking following discussion and points in this thread and has posted an apology in the following thread: http://www.wrongplanet.net/postt128814.html

One of the great things about our community is that we pretty much are all willing to learn.



Plywood
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08 Jun 2010, 11:18 am

I am not self diagnosed and I joined here today but I have A LOT in common with you guys so I am going to stick around. You guys have the same problems that I do EXACTLY and everything just seems like me so I am going to stay. However although I might have some things related to "Aspergers" I am not going to to proclaim it or "diagnose" me as it because I am not sure. I do it out of respect for the "aspies" also.



kip
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08 Jun 2010, 11:19 am

Your grammar and insistence that everyone 'must' have been 'noticed' at some point make it impossible to carry on a reasonable discussion on this topic. I'd recommend editing heavily at the very least.

This topic is a zombie, I see it about every two months. Many do not agree with the self diagnosed, but they are no drain on you. Without a formal DX there is very little available. If it makes you feel better to say you have AS or another spectrum disorder, go for it. You're not hurting me. Also you have to take into account that many of us seem to fall on the poorer end of things. The diagnostic process takes quite a bit of time and more than a bit of money.


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08 Jun 2010, 11:27 am

Everyone cant afford to get a diagnosis, and for those who can, not everyone seems to be able to get a shrink that know his/her stuff.

Some are just happy to "just know" whats with them and does not necesserely need a full diagnosis. But true, there are some people here on the forums that probably dont have AS and have something else - professional diagnosis or not.


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buriguri
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08 Jun 2010, 11:28 am

There are several reasons why I do not want to get a diagnosis.
1. It costs money. Money that I don't have. I don't have health insurance.
2. It could affect my health insurance costs when I do eventually get health insurance. I'm self-employed, and it's already impossible to find affordable health care. I don't want to put another obstacle in front of me.
3. It does me no good. I cope with my AS just fine. It might not be a "normal" life, but I am happy with it. I don't need therapy at this time. It would have been a blessing when I was a child, but the AS diagnosis didn't exist back then (I'm 30 now).
4. I know I have it. I don't need a therapist to verify it for me. I've lived with this my whole life. Reading comprehension is my greatest strength. I've read books on the subject, not just the wikipedia entry. I understand the criteria. And I know it applies to my own life. It's more than just social awkwardness. I have sensory issues as well (which isn't even one of the DSM IV criteria). If I did want a diagnosis, I would be afraid that I would have a hard time finding a therapist who is familiar with Asperger's in adult females.

I certainly don't do this to be different, or use this as an excuse. I haven't told anyone about my Asperger's apart from my husband (and this message board). My life hasn't changed, except parts of my life make a lot more sense now. I've always been an Aspie. Diagnosis (self or professional) won't change that.



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08 Jun 2010, 11:28 am

Exactly cost is of issue. One psychiatrist said when I mention AS "You couldn't have that that's something diagnosed in children and there's no pill for that and this is a place that gives pills." My current psychiatrist said maybe and asked the other day so you are being treated for a mood disorder and Asperger's I said yes. So NO I didn't get tests etc. but I explained I feel I have AS he agreed and he put it down as a diagnosis that's confirmation to me. :-)



AphexSam
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08 Jun 2010, 11:32 am

I live in england so our healthcare is free due to the NHS, I suppose if you can't afford it there's nothing you can do. sorry for the grammar when I get passionate about something my words become slurred and I never know what order to put things in, hell even normally I don't know what order to put words in. I do not like to say I have Aspergers, I have only told my closest friends but I do appreciate having a formal diagnosis as I like things to be precis, I don;t like the inbetween bits, if your'e that secure in yourself then thats good I only wish I was :).



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08 Jun 2010, 11:38 am

I can't imagine why anyone would fake being an aspie, but then I don't really get the seeking-out-attention thing. I have never been diagnosed with Asperger's because I only discovered it fairly recently, and since I'm middle aged, there's really no point. Years ago both my mother and my uncle suggested that perhaps I had a form of high functioning autism, and I was offended! I didn't know anything about autism, so I pooh-poohed it, and carried on with my difficult life. Then the movie Temple Grandin came out, and when I watched it my jaw dropped. So I delved into autism research with a vengeance, and found that Asperger's Syndrome explains every single detail of my life and personality, with the exception of my sense of humor. There is absolutely no question that I have it.

I also have type 1 diabetes, which is a unique disease in that it must be managed entirely, or almost entirely, by the one who has it, with the result being that we type 1-ers who manage our disease successfully know an awful lot more about it than any doctor, since there aren't enough hours in the day for a doctor to really learn to grasp insulin management. And from this position I have been able to observe a seemingly infinite number of doctors confidently offering advice that is not only wrong, but downright dangerous. It's stunning, actually. So I've gotten to the point where I don't proffer either respect or credibility to anyone with an M.D. attached to their name unless they go out of their way to earn it, and so far they haven't even come close.

So, from my point of view, as someone who manages my disease better than any doctor could while watching the appalling errors made by overly confident doctors, I'm of the belief that we are more than capable of diagnosing ourselves, and that what is surely a minority of attention-seeking fakers should simply be overlooked as most yahoos-who-waste-your-time are in any other sphere of life. I understand what you're saying, yes, it is annoying that fake aspies tend to minimize the significance of autism in all its forms, but I just wanted to toss in my perspective on this.



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08 Jun 2010, 11:40 am

Getting properly diagnosed sometimes depends on how severe one is and how lucky one is to be able to afford it and find someone who knows what they are doing. Lots of people can slip through the cracks so to speak simply because they aren't obviously enough on the spectrum even though it still hampers their life, or never grew up around anyone who would recognize it. Especially 20 or more years ago, hardly anyone knew what Aspergers was and most people only knew about LFA or savants like in the Rain Man movie, so unless you were those, you were often overlooked as just weird and introverted. Once as adults it's generally much harder to get diagnosed because by then, coping mechanisms have been learned which hide most the behavior and there is no set criteria for diagnosing adults with a milder spectrum disorder.

I understand how it might seem annoying, but you have to consider yourself lucky that someone did notice you and you got diagnosed. Now you can get the help if you need it and have a better chance of coming out prepared an capable once you leave college...

And Psychology isn't an exact science. Psychologists can get it wrong from time to time. Before Aspergers became more well known, lots of aspies would get mis-diagnoised with other disorders, some still do.


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08 Jun 2010, 11:46 am

I was diagnosed although some characteristics I have are not so aspergerish wile others are.



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08 Jun 2010, 11:49 am

I am diagnosed but you say that people get "noticed" when they are little. It may have been noticed that I had problems but when I was little they didnt have a name for it, I was just labeled as learning disabled. Many people, not all, who are self diagnosed are older and there was no diagnosis until the 90s for Asperger's Syndrome. I even have a friend who is son is classic AS but when she took him to a Psychologist in the mid 90s she was told he had emotional problems and that it was her fault. Its just recently that people are getting properly diagnosed. Also many people dont have insurance that covers adults to be evaluated for such disorders in the US. If you are over 6 years old you have to pay out of pocket and it cost several thousand dollars. I was fortunate that my Psychiatrist was willing to evaluate and diagnose me, most wont. I also had my kids diagnosed through the Regional Center instead of having to use my insurance. My son was diagnosed at age 6 with AS and my daughter at age 3 with Autism. I also have a 17 year old daughter who was recently diagnosed through my Psychiatrist.
They have turned the whole diagnostic procedure into a money making racket here in the US. If you live in a larger city its easier for find help but in smaller areas they want the big money. I do know people who still spent thousands of dollars on evaluations and brain scans...most of the things they do are not needed for a diagnosis of a pervasive developmental disorder. They have no evidence that people with Aspergers or Autism all have any abnormal brain scans...this was a small study. As I said, its a money racket.
Besides, why do you care if people self diagnose?.....how does this affect you?



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08 Jun 2010, 11:51 am

My differences were certainly noticed when I was a child. But in 1969, there wasn't even a "high-functioning" category for autism, and the AS diagnosis was still 24 years away, so I was just "that weird kid who reads all the time."

Try again. Or better yet, try to get some sense of historical perspective before ripping on those of us without formal diagnoses, 'kay? Thanks!


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08 Jun 2010, 11:51 am

I just identify with some of the problems aspies have. My psychiatrist and therapist admit that I have some traits, but they don't think it's enough for a dx, though ironically they both say I'm not picking up on social cues and I went through social skills training as a kid.

I basically identify with obsessions because I am just crazy about birds and Sonic the Hedgehog and I'm seen as very odd about that. I have difficult times in social situations to the point I have hardly any friends, and also I have a couple of sensory problems, but it's not really that bad, and I do repetitive movements. Also I had severe meltdowns as a kid almost everyday over just things happening I didn't like, until I was 16.

On the other hand, I'm good at eye contact and finally learned how to have a good conversation with one other person (two or more people and I'm stumped). Plus instead of having problems with describing feelings, I don't and I have too many feelings and dxed with some sort of bipolar. Plus I think I have empathy, though I don't totally understand how it's different from sympathy.

And indeed, I don't have the money to have an evaluation.


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08 Jun 2010, 11:59 am

How did I get double posted? sorry!



Last edited by liloleme on 08 Jun 2010, 1:05 pm, edited 1 time in total.

Kiley
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08 Jun 2010, 12:09 pm

Your own diagnosis sounds a bit iffy to me, and I don't say that just to be combative. The tests you describe are radically different to what I've experienced. I don't believe electrodes are normally used to diagnose AS, they certainly weren't in anybody I know. I've been through an extensive diagnostic process with each of my three children and what we experienced couldn't be more different.

Not everybody has the finances or insurance to get a diagnosis. Not everybody who gets a professional diagnosis gets the correct one. There are many instances where the professionals get it completely wrong diagnosing it where it doesn't exist or missing it where it does. Having a professional diagnosis does not make you bullet proof in regards to certainty. Maybe that will help you feel less judgemental about people who have different circumstances than you do.

There are underlying points that you make that I do agree with. Reading one article and self diagnosing is quite silly. I don't see that going on here. I see people who have read a little and want to know more because it sounds so much like them, some of whom are able to pursue a more formal diagnosis and some who are not.



tenzinsmom
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08 Jun 2010, 12:21 pm

I can empathize with you, AphexSam.

I compare your dislike with my dislike of western Tibetan Buddhists who don't know or care anything about the plight of the Tibetan people. They go to teachings and see the Dalai Lama whenever they want, taking what's good for themselves without a thought about how they came to be so fortunate in the first place.

But since I am powerless to change that, I try to look at the positive aspect of westerners interest in Tibetan Buddhism. Maybe, if it helps them enough it will lead to interest in where it comes from. Maybe they will eventually learn about the genocide in Tibet. And then, they will want to help preserve the culture before it's completely absorbed by the Chinese communists.

There are positives to the increasing interest in and awareness of AS. Even fakers, are bringing awareness to other people. If someone relates so much to AS that they decide they have it, I can't believe that they don't share at least, some of the characteristics. I doubt that there are so many people misdiagnosing themselves, that it will have a negative impact on the general public's perception of AS.

Still, I can understand your frustration with people who definitely do not have aspergers, but who wish they did to have an easy way to explain their dysfunctions.


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