Self diagnoses = "fake AS?"

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I've discovered on WP there can be quite a lot of disdain for the self-diagnosed types. I personally did every single one of the diagnostic tests the docs did on my children on myself like I mentioned in my hello post. If I went to those doctors and handed in my forms, I would get diagnosed, but WHY? Why should I do this? I already know. I don't want a label stapled to my forehead. I think this comes from me being incorrectly diagnosed as schizophrenic (later removed by a competent doctor), then labeled as bipolar I (later removed by the next doctor and relabeled hypomanic), and then finally after two years of a fourth doctor, being completely "undiagnosed" with ALL of those things.

I think perhaps all the negative things that go along with labels piss me off. Since my oldest son was diagnosed at 6, I'd watch school officials complain about some aspect of him, then watch them read his paperwork and go "ooooh" in that tone of voice that just makes you want to kick people.

I think also I don't like using it as an excuse, as in "I'm socially totally not fitting in here because I've got Aspergers". Most likely all that mental war has beaten me into this pulp... honestly, someone please tell me why I would want to get officially diagnosed. When I was a kid no one considered that I could be on the spectrum because I was a girl... I wonder how much better my life would have been as a kid if they'd known... school was a nightmare.

I just don't see how this would be useful to me as an adult, other than an official excuse for why I don't fit in.

And it may not, in your case. See my above responses to MotownDangerPants. It all depends on how AS is affecting your life.

For some of us, it's much more than just a label, and there are very good reasons to want and NEED the DX.

I must point out I like your very thorough response to MotownDangerPants. I think I agree with just about everything you have said. Most likely, my reluctance to get properly diagnosed is that it would be used against me by mean stupid people. Then again, I guess that would just make them mean stupid people and Me still just me

That's pretty much how I worded it before I got a diagnosis, but I still counted that as self diagnosis. I didn't go round saying 'I have Aspergers' - I said 'I'm pretty sure I have Aspergers' or 'If Aspergers had been known about when I was a kid, I'm pretty sure I'd have been diagnosed with it'. So how exactly do people define self diagnosis? People going round pretending to be diagnosed when they're not?

Another thought occurs to me. Something I observe in life in general about people is that they like to say they are better than other people. People like to have 'types' of people to look down on, to be superior to. I assume it's some kind of evolutionary thing. I see it all the time, with regards to all kinds of things - people like to look down on people who can't spell, people who hold a certain political/religious belief, people who wear certain clothes, etc. I suppose in the Aspie world, professionally-diagnosed Aspies like to look down on the sel-diagnosed. I guess I find it bizarre as I've been both self-diagnosed and professionally diagnosed, and neither has harmed anyone, so I don't see what the big deal is.

Mean stupid people suck

I don't worry about them. In fact, in my own experience, I've never run into any mean stupid people while talking about it. People just plain not taking my AS seriously has been the bigger problem.

That's why I start discussions like this!

I do? Can you point to an example of me doing this?

I don't think it was an accusation of anyone in particular.

I do though say I have it, without a diagnosis, but that's after about three years of saying it just like redwulf would prefer we do, over ten years of researching it, two kids diagnosed with it, discovering it runs in my wife's family, discovering it's common to find Down's Syndrome in some families with AS (mine does), and two years ago finally realizing there are just too many similarities and things I used to think were coincidences, but now realize are too numerous to deny any longer.

To me, to think I might not have it after everything I've learned is to live in denial.

I have AS. I am as sure of it as I am sure my eyes are blue, my hair is brown (but graying), I am Caucasian and the sun will rise tomorrow as it has for the last four billion years. When you are that certain, it's a hell of a lot quicker and simpler to type, "I have AS" than to type such long and almost apologetic explanations. I know I have it, and that's all that matter to me. It only matters that there is no diagnosis when it comes to getting needed services, and I plan to remedy that very soon.

It was an accusation not of anyone in particular but of EVERYONE self diagnosed. The equivalent of saying all black people are lazy and on welfare or everyone with a Mexican accent is here illegally.

Oh yes. So it was. So it was. Funny. I saw it the first time I read it. Missed it this time. Maye my "diplomatic pendulum" swung to far the other way.

Oh well. I'm an Aspie, and that's just me. I can change. If I have to. I mean if I want to. But I don't want to. Because I have Asperger's, and can't make myself want something I don't want.

Unless I want to.

i think this is the most important point of all this discussion.

eventually it doesn't matter whether anyone is right or wrong about any of it; it's creating a toxic atmosphere.

I've participated in support forums for those with eating disorders and many there don't have an official diagnosis from a doctor but everyone is fighting the same difficulties and feelings and everyone feels welcome. It doesn't take a diagnosis to make them "real" sufferers from eating disorders.

I know that EDs are different from AS. I also belong to a Bipolar support forum and I've never seen a thread trying to differentiate between "real" and "fake" BPers. And god knows, Bipolar gets as much stigma and bad press as AS. Bipolar gets just as many people blaming things on it and giving it a bad name.

It would be a shame to chase likeminded people away and make this place unsafe just because they don't have the label on their forehead.

Last edited by MotownDangerPants on 14 Jun 2010, 8:48 pm, edited 1 time in total.

While I agree that it shouldn't be something I have to prove to some extent, the reality is, YES I DO HAVE TO PROVE IT! I have to because it is due to close minded opinions like this, extended into the professional community that is the very reason it took over seven years to obtain a diagnosis for one of my sons. During that first seven years of bringing him to doctors to be evaluated, we were met with everything from rolling eyes, to blank stares the moment we mentioned we had been reading about Asperger's. WE KNEW he had it, yet no professional for seven straight years would perform a proper evaluation on him. Every one of them dismissed it, based on the very same attitude I see on forums like this. We diagnosed him, therefore, he must not have it.

We GAVE UP, because NO ONE would listen! Then, when he was in third grade, the school psycologist, whom we had never met, and knew NOTHING about our AS concerns, called us in for a meeting and announced that not only did HE have AS, but so did his younger brother, whom we never even suspected!

THAT is why it matters! And that is why, sometimes, yes we do have to prove it, because without proof, there are no services, there is no support, and no one who really matters in terms of support and services will listen!



From a purely "Aspie perspective," someone who has learned to adjust and find themselves a neat groove within which they can function well, relatively undisturbed, and content, this is true.

But when your AS interferes drastically with normal functioning, to the point where life is constant chaos and crises management, it is far MORE than "just a label." It's a key that opens doors, clears away skepticism, and gets us the help we need to cope. Without it, there is none of that.



I agree, just being diagnosed doesn't make anyone an expert. Personal, well structured research does. And that's true whether your an Aspie or an NT, or a Schizophrenic from Kapax.



This, I don't necessarily agree with. It's been my experience that many NT's who have actually researched AS in depth, know very well what the text books have to say, and very well what they know about the Aspies they've worked with. Unfortunately, we have also found that most we have met still tend to formulate a preconceived idea of what AS "looks like" based on the Aspies they have worked with. Too many of them think that just because they've worked with ten or twelve DX'd Aspies, they now "know what Asperger's looks like."

Thank god we have been able to convince at least a few that even though you may have worked with Asperger's before, it doesn't mean you know our kids, and exactly how to deal with them. It takes quite a bit to convince some of them that AS is a very broad spectrum. Our experience has been that all but one professional we've worked with had a much narrower view of what AS is than they believed.[/quote]

lol. I didn't write those first two quotes, I quoted those from someone else because I wanted to reply to them.

In some of my other responses where someone said that I was chalking up your worries to personal neurosis I said that I totally understand where you're coming from but that I don't think think you should take the opinions of some of the people on this site that seriously. They may not really be thinking about what they're saying, and are more fed up with this new internet culture of "fake Aspies" who actually ARE making it trendy than you personally.

You went your whole life trying to figure yourself and you did, I don't think the opinions of people much younger than you who get diagnosed at an early age should matter if they're just doubting you. This is exactly where I'm at, and while I do have a very mild case it's affected my life enormously and still does in many ways. I've just learned how to be "normal", which is VERY draining and not something I want to do for the rest of my life. I also spent many years of my life learning to do this and have failed at being "normal" many times. I'm probably going to fail again. I don't wake up everyday and just fit in with people, it's all an act. AS is something you should prove to the people who are important to you and a doctor if you want to get a diagnosis but not necessarily to these people. I'm sure the ones that are worth being friendly with probably aren't doubting you anyway.

where is this "culture" of fake aspies, anyway? where is it that Asperger's is trendy?

and - assuming there are some people deliberately misleading - why are these people not simply written off as occasional trolls, rather than blown to epidemic proportion and used as ammunition to discredit self-diagnosers?

in all this discussion, no one has offered any evidence of this "trend"

Thank you.

I am probably as confused about the spectrum and how it applies to me as anyone on this message board. I'm not "self-diagnosed" or officially diagnosed; I have no way to explain where I stand. I was told by my shrink (who I'd been seeing for 2 years) that after knowing me for that long he was "almost positive" that I have AS, but also that I've adapted well enough that if I went in for an "official" Dx the odds of actually being diagnosed AS by someone who didn't know me as well would be something like 50/50.

I never claimed to anyone in my life that I actually have AS, and I've even hidden the mere possibility from 95% of the people I know. I joined this board after those talks with my shrink because I was scared s**tless and confused, and came to find that I had a lot in common with people here--not everything, but things that no one else I ever met could ever understand--and as a result I stuck around.

So what is "the real deal"? The word of a clinical psychologist who's known you for years and been in the game for 25+, but doesn't specifically "specialize" in ASD? The word of a "specialist" who has spent less than 10 hours of their life in your presence? Both? Neither? I've been blending into the NT world my whole life, and it's actually easier for me out there after 27 years than it is on here--is that due to experience (27 years vs. 1 1/2), or because people on here don't believe I have AS and people outside of here for the most part have no clue that I might?

And as far as I'm concerned, does it really matter? I don't want to use it as a crutch, and I've been 100% honest from day one about where I stand in the process; it is what it is, and at this point it is of no real help to me either way.