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

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AphexSam
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09 Jun 2010, 1:59 am

and for all those people saying yeah well Im self diagnosed and I dont care what you think. I dont care what you think or care about you either so there's no problem.



IamTheWalrus
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09 Jun 2010, 2:05 am

AphexSam wrote:
I understand some people are angry at me for my views but if you read what I said carefully I beleive alot of the self diagnosis is correct, I mainly only have a problem with people who pretend they're on the spectrum but for people to come in here and insult my
grammar
my knowledge of history
calling me elitist
saying I should be ashamed of myself
saying Im a bully etc
it really hurts, okay maybe my grammar isn't great and Although history is my obsession i know little of the recent history of aspergers but the rest I do not agree with at all. If i offended people so much they could have said so nicely. I value you guys so much, you probably don't know it. When I had my serious self harm issue it was people in this forum who convinced me to go to a doctor. You guys are awesome and I didn;t mean my commentsi n a hurtful way, i've already apologised if people got them miscontrused but still I;m getting insulted :(.


I know how it feels to be misunderstood. I am not angry at you for your opinion.

We share a history special interest.

Peace.



redwulf25_ci
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09 Jun 2010, 2:16 am

PunkyKat wrote:
I was diagnosed at seven and the EEGs were sheer Hell. I wasn't allowed to move and they had me hooked up for hours becuase they had to keep restarting the test. I coudn't contol by body and the electrodes were painful and I wasn't even allowed to hold my special stuffed animal (which could have made all the diffrence in the world if I was). I got physicaly sick from the lights not right away but I had a delayed reaction to them after they gave up and let me go home. I was also sick from stress. I had ghastly nightmares about EEGs for years after that so I suspect I developed an unconcious phobia of them. Yeah, I'm weird.


I have no idea what they were doing to you but that doesn't sound like a normal experience with an EEG. When I was getting them due to epilepsy they would glue some electrodes to my head (not painful at all, but then you may have a sensitivity to touch that I don't my sensory issues are mainly with scent) and knocked me out with a pill. There were no lights involved at all. I can't think of a reason they wouldn't allow you your stuffed animal, I never asked to bring one myself but I can't see how holding a toy would effect the test.



redwulf25_ci
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09 Jun 2010, 2:19 am

PunkyKat wrote:
anbuend wrote:
Self-diagnosers don't cause cyberbullying. Cyberbullies cause cyberbullying. The "but we are only being horrible to you because of the self-diagnosers that use it as an excuse" line the bullies always trot out is their own excuse for bullying you and conveniently diverts you into seeing self-identified people as the problem rather than the bullies themselves as the problem.


What I meant was cyber bullies use it as an excuse to cyberbully. I'm not good at wording things but what you just said sums up what I meant.


But you did lay the blame on us and it's hardly our fault.



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09 Jun 2010, 3:38 am

I agree that Aspergers can't be self diagnosed ( I was also diagnosed by professionals) but I dn't condemn who do because they usually say that they're self diagnosed because their either suspect that they have it or they're s frustrated about getting a diagnsis that they are damn sure that they have it. I think there is a minority that say they have it for sympathy or to "fit in the club", but the vast majrity have legitimate reasons to suspect that they have it. Even if they are wrong and they find out it's something else, I still think they are part of this community because I wuld imagine that they had made a few friends during the process of an official diagnosis.

One thing that does bug me about self diagnosis is that people are now extremely skeptical over your diagnosis when yu say that you have Aspergers and no matter how truthful and objective you are, they will find sme way to call you a fraud. I can't tell you how many times that I've seen people on youtube try to "call" people. Wrse yet, there's parents who blog about how the autism criteria is too wide (even though they are not doctors and don't understand the research behind it).

A diagnosis is there to help you get support and therapy for deficits that impair your life so I have no problems with self diagnosed peple who are self diagnosed because they do have these difficulties and are trying to get help.



IamTheWalrus
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09 Jun 2010, 3:42 am

and its almost like it is cool to have a disorder, I don't think most people are like that

if people feel they might have an autistic spectrum disorder they are likely to suffer to some degree



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09 Jun 2010, 3:55 am

I agree that there are many excellent reasons not to seek a formal diagnosis, and many people for whom a formal diagnosis makes no practical difference. (There are also, of course, the non-AS partners, relatives and medical professionals who make a valuable contribution to this forum). I do not agree with the claim of not being able to pay - a claim that I guess applies only to US residents in any case.

If we accept that a diagnosis costs $800, it could be repaid many times over:- The cost of a modern drug like Cymbalta, that might be used to treat a misdiagnosed mood disorder, will be about $300-$400 per month, every month - $4,000 per year, every year. Even the cheapest drug treatments for depression / anxiety will cost $1,000 per year. Disability welfare is currently $930 per month where I live. There are services available to people with AS where I live that are worth far in excess of $800. The employment opportunity value of a diagnosis is proportional to the severity of the AS.

The non-financial benefits include:- Being able to explain potentially hysterical reactions to being touched without explanation, being in crowded places or noise. Being able to analyse stressful situations and work through them. Having correct medical support - especially for non-AS issues. Being able to either explain or work around AS issues in employment.

If a diagnosis mattered, then $800 is a trivial amount of money for anyone to find, and only becomes a significant sum if diagnosis is not important. Not being diagnosed is a choice.

An explanation for life, the universe and everything is priceless - and most people find that external validation is very positive.



huntedman
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09 Jun 2010, 6:41 am

AphexSam wrote:
I mainly only have a problem with people who pretend they're on the spectrum but for people to come in here and insult my (...)


This is actually a problem I have about here. I have seen people throw insults at one another for things that are a part of being on the spectrum from spelling, grammar, typos, pedantic language, being insensitive to others, obsessive fact correction.

I once saw one person say to the other "I'm have to leave WP for a week, so I will keep you guessing as to what that means". Why would you say that to someone else on the spectrum, you must realize that this is cruel. I had a hard time letting go and not understanding what she meant, and I was not even part of the thread.

I have seen both professional and self diagnosed people insult others for problems that are either directly part of ASD or possible comorbid conditions, I think that is a ridiculous thing to be doing here.

AphexSam - You seem to have inadvertently walked into a topic that is a minefield here. You will probably have to ignore or endure people insulting you until this thread dies



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09 Jun 2010, 8:54 am

AphexSam wrote:
and for all those people saying yeah well Im self diagnosed and I dont care what you think. I dont care what you think or care about you either so there's no problem.


But you said, right at the beginning of the first post in this thread, that you do care what the self-diagnosed think.

Quote:
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


You get annoyed because they are self diagnosed. Sounds like caring what they thing to me. Caring, and not liking (annoyed) that they think they have Asperger's or autism but don't have a diagnosis.

Don't fault people for believing you meant what you wrote.


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Mysty
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09 Jun 2010, 9:05 am

StuartN wrote:
There are services available to people with AS where I live that are worth far in excess of $800. The employment opportunity value of a diagnosis is proportional to the severity of the AS.


Curious that you claim this, but don't say what those benefits are. Or even where you live (not even what country). I can't recall any examples of service available to adults (not in school) with an autism or Asperger's diagnosis in the U.S. that I've read, here on this board, or elsewhere. (The U.S. because, as a U.S. resident, that's what I pay most attention to.)

And I can't see how an A.S. diagnosis increased employment opportunity.


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09 Jun 2010, 9:18 am

Only $800? Mine ended up costing a lot more than that.


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Wuffles
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09 Jun 2010, 9:24 am

A formal diagnosis is extremely difficult in Ireland. Even if you are rich, there are only a handful (I believe two in the country at the moment) of 'experts' who will do a private diagnosis. Our local aspie association sucks and charges 70Euros p.a., just to read their message boards. Further, the odds of you getting diagnosed at all if you are female is slim, if, like me, you have other problems (I was severely sexually abused so I've dealt with both ptsd and depression), it's next to nil. And even if you ARE diagnosed, there are no support services for adults at all, and few for kids.

I had the good fortune to attend grad school in the USA and got a formal diagnosis there.

I found the title of this thread rude (why say 'sorry' when you're obviously not sorry, even my limited social skills can pick up on that), and the initial post very off putting. To be honest, if the replies hadn't been so good, I'd have just dismissed the entire forum as having an...'I'm a better aspie than you are! Sorry!'..attitude.

To the initial poster: you ask for a grown up discussion. I contend that a grown up discussion is not habitually initiated with hostile title and arrogant post. That one ensued from what you wrote is to the credit of this forum and I am sincerely proud of it.

Aspergers is a spectrum. It blends with the NT spectrum. That's part of what makes it so fascinating. Even someone who is technically NT but very close to aspie on the spectrum could benefit significantly from reading and participating in a forum like this.

Aside from presenting the issue poorly, which you do, I think that the basic problem is that you present it as far too black and white. Unless you are playing devil's advocate in which case 'bravo', good discussion, but be careful you don't drive away people who really do need help. It almost drove me away.



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09 Jun 2010, 9:39 am

I don't think that the OP is a grown up. He's a teenager, and if I remember correctly, Stuart is, too. They really are naive to some of the issues that adults face in regards to funding, and obtaining a diagnosis. I guess what I'm trying to say, is that I feel they're coming from a place of innocence due to lack of lived experience, and that we ought to take that into consideration when replying.



Wuffles
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09 Jun 2010, 9:46 am

Possibly, I'm not good at guessing things like age so I just respond to what was written.



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09 Jun 2010, 10:40 am

Why self diagnose??

Same reason you self diagnose with a cold when you have a snotty nose and a cough.

Same reason you self diagnose with a head injury when you fall down a flight of stairs and smash your head on the floor.

Because if you have the symptoms, you take the time to find out the facts and they fit you...then yes, you might as well say you have it. You want me to get a diagnosis? Sweet. You pay for my ASD diagnosis, you drive me halfway across the damn country to undergo the diagnostic procedures because I can't drive myself around at 20 because I get overloads, sure, I'll go get a diagnosis. Until then don't you dare needle me.

Honestly I know I shouldn't take an angry aggressive tone but your post certainly warranted it. You're old enough to take a rational person's perspective on such an issue rather than give out to people for not being a proper member of the special Asperger race.


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09 Jun 2010, 10:48 am

StuartN wrote:
I agree that there are many excellent reasons not to seek a formal diagnosis, and many people for whom a formal diagnosis makes no practical difference. (There are also, of course, the non-AS partners, relatives and medical professionals who make a valuable contribution to this forum). I do not agree with the claim of not being able to pay - a claim that I guess applies only to US residents in any case.

If we accept that a diagnosis costs $800, it could be repaid many times over:- The cost of a modern drug like Cymbalta, that might be used to treat a misdiagnosed mood disorder, will be about $300-$400 per month, every month - $4,000 per year, every year. Even the cheapest drug treatments for depression / anxiety will cost $1,000 per year. Disability welfare is currently $930 per month where I live. There are services available to people with AS where I live that are worth far in excess of $800. The employment opportunity value of a diagnosis is proportional to the severity of the AS.

The non-financial benefits include:- Being able to explain potentially hysterical reactions to being touched without explanation, being in crowded places or noise. Being able to analyse stressful situations and work through them. Having correct medical support - especially for non-AS issues. Being able to either explain or work around AS issues in employment.

If a diagnosis mattered, then $800 is a trivial amount of money for anyone to find, and only becomes a significant sum if diagnosis is not important. Not being diagnosed is a choice.

An explanation for life, the universe and everything is priceless - and most people find that external validation is very positive.

Stuart, buddy, I don't have an official diagnosis of anything, because I can't afford anything. You say it's possible to get a proper diagnosis for $800? That's great - can you send me $800 for that? Because that's more than I make in a month, at the closest thing to a job I can get (providing care for my autistic daughter, and yes, her diagnosis is official, because it was possible to get that done for free when she was four - nobody provides that service free any more when you're 46).

The only reason I want an official diagnosis is because then maybe the state would be willing to acknowledge my disability, so I could get medical coverage. Without it, all they see is an apparently able-bodied male; it's not like I've got a scarlet AS on my breast or anything.


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