How important is formal diagnosis?

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This is one of the factors which makes me question whether I am AS or not as I can socialise and play the game whilst at work. It is exhausting but the alternative is losing yet another job!

I wish there was help available here but after speaking to numerous health professionals and specialists in the jobcentre it appears there is not unless I become unemployed again directly as a result of the problems I have previously described. Doesn't matter if I have lost jobs in the past because i am managing to work now and that is as far as it goes.

I am convinced now that the system itself in this country is put in place either as a maddening deterrent or as a crude attempt to thin out the population. Luckily I still have some fight left in me, otherwise it would have worked by now.

You see, I don´t have this problem. My work is my special interest; I am with like minded people, and I can socialize with them fine. I don´t have to "play the game"- (thank God, because I wouldn´t know how to do this)! There, I am "in my element"; I feel like work is the only place I CAN socialize.

But, outside of work, I flounder. I don´t know how to make a conversation with the general population. I never go out, I don´t date because I´m too intimidated, I am alone. As I´ve found a niche for myself at work, my problems are mostly private...but, nobody is going to care about this, I know. I am a "productive member of society"; who cares if I am inhibited in other ways?

I guess the main thing I could gripe about work-wise is that, due to the fact that I can´t "network", I haven´t gone as far as I could have in certain creative aspects of my work. However, I still don´t think anyone is going to care about that, and I can´t really prove that I have more potential and could go further....besides, it´s competitive, so it´s hard for everyone...Although it was a big struggle at first, I´ve become, after all this time, quite successful in my field. So I am not really impaired in this way, but in other ways...

That's where it becomes such a gray area. Sometimes we *think* we are socializing well just because we laugh at the same time as others in the group of co-workers. Or oh hey we said a sentence during a group conversation. But that doesn't mean that we are in synch with the flow of conversation and body language. That doesn't mean we aren't really just ranting about our latest hobby obsession when the original group topic of conversation was something entirely different. Do you get what I mean? It took me awhile to realize that even though I adored many co-workers and did speak I still was coming across as quite akward & that they prefered me not taking part in their discussions after some others pointed out what should have been obvious to me. Sometimes we just get too comfortable with ourselves to be objective. Reminds me of a mother of a young adult Aspie I met recently. She insists he has excellent social skills, etc yet I can tell by looking at him he has severe Aspergers. I've still yet to even hear his voice so that does kinda point out his social skills aren't what he or his family would like to think.

I see exactly what you mean and it is indeed very difficult to tell the difference. I mainly just speak only when spoken to. It has taken many many painful years of trying to realise that I should probably end my statements a couple of sentences earlier!

Don't feel bad about it. It's all a learning experience. There's many a times I later realized I should have said nothing at all or that one sentence would have sufficed. I just wish I'd been given the rulebook at the beginning of life instead of having to learn the hard way. (and I'm still learning)

Yes, I´ve had the same experience of someone pointing that out to me. But I´m not sure how much I can really believe her either; she was the sort who played games, and I don´t really know how much I can take of what she said as fact, and how much as fiction. (I try to avoid those "game players" as much as possible...) At least, in my new job, people seem to like me fine. Since I´ve moved here, I keep a lower profile too...it seems to work.

I´ve been thinking: how "impaired" does one have to be to have AS? I notice it explains so much about me, makes everything about my life suddenly clear, and it´s been a huge relief for me to know about this. Mostly, I like just the idea that I can just be myself and not try to be someone I´m not. But, I don´t feel that bad somehow; I don´t feel "sick", so why get a diagnosis? Even when I told my Dad I thought I had AS, and maybe should get a diagnosis,, he said, "Well, maybe you do have Asperger´s Syndrome; but, you´re successful. Why worry about this now?" Of course, it IS important to me, but mostly on an internal level, if you know what I mean. I don´t have the money to get a diagnosis now anyway, but even if I did, I don´t think I look enough like I have huge problems. Ok, I don´t socialize after work, but I like the time alone, and don´t really feel like I want to socialize. And I´ve been really SICK with medical things in the past, and had doctors tell me I was fine (I wasn´t). So how is somebody going to "diagnose me" when I don´t even look like something is wrong???

But when I do these tests like the AQ, I always get a reading in the AS section. When I did the Aspie Quiz, I got a "you are most likely an Aspie". Can someone have AS and not feel super impaired? What´s going on here? I think I´m getting more and more confused...

I can totally feel you on a lot of this. Regarding, being successful, personally, I am very similar. Although, for me, When I am at work, I try not to socialize at all, but only talk about things that involve work. When I am in that "work mode" I feel that I am less impaired than if I was talking to people, socially, outside of work. That is when I feel completely impaired. I have been extremely successful in my professional career when I just stick to work talk and avoid "water cooler" situations.

What's odd, but also makes sense, is that my company has embraced two facets about my AS, and they don't realize it. Documentation (one of the few times, being wordy and verbose helps) and training people. I used to travel around the US training clients and when I was in a "teacher" situation, I had no problems and felt totally comfortable, but when one of the students wanted to socialize to a degree (during breaks or before/after the session), that's when I become awkward.

As far as diagnosis goes... I have a tendency to think most medical professionals are quacks. I have had multiple instances where I told the doctor what my condition is and they say it isn't, but eventually it turns out that I was right all along. I had a Staph infection once, told the doctor I did, but I can imagine they don't like self-diagnosis, they automatically want to go around a different road. My infection got worse, it wasn't until a week later that he agreed it was Staph (another week and I probably would have been dead). My mother has Fibro Myalgia, but her doctor, time and time again didn't think it was, despite my mother and I telling her that is what it was. She put her through so many tests and medical treatments and multiple mis-diagnosises before she finally concluded that she had Fibro Myalgia. Then when I was younger, I had major fatigue issues. I thought it was a problem with my thyroid, but my doctor refused that notion and months of doctor visits and mis-diagnosises, she finally decided to check my thyroid and found a cyst. So, I have issues with doctors...

Last edited by Verse on 04 Jan 2009, 11:45 am, edited 1 time in total.

Do you think people with official dx of AS act extra goofy or nerdy because they think they can get away with it. Like if they are rejected for being a nerd it won't hurt thier self esteem anyway because of thier dx.

Meh, maybe, until years and years of social ineptitude eventually wears them out, emotionally. After lurking here, it seems adolescent teens are more prone to act that way, but adults take it more seriously.

I tested 38 on the Baron-Cohen AQ test. I am going to take the results to my psychiatrist the next time I see her. For me, not getting a formal diagnosis leaves a question mark as to where I belong. I always thought of myself as belonging, or sort of belonging anyway, to a certain group and being a certain way----now maybe I have to change the way I think about myself. And I wonder if I really ever saw myself as other people see me....? I thought I did. Maybe I didn't.

Also, like everyone says, knowing for sure would certainly explain a lot about me, my childhood and other things.

Oh, thanks for your feedback! Yes, at work I also mostly just talk about work related stuff...in my profession, the other people around me also really like their work, so this is easy. Even small talk is more bearable with these people, because I know them from work, and I know the small talk isn´t going to last long, but will go into a more interesting conversation...(whereas with other people outside of work, small talk feels like hell). I know exactly what you mean about students and socializing. I always feel totally fine teaching, and I interact with the students well, I feel, in class. It gets easier to interact with them outside of class if I´ve taught them for longer, sometimes...although, some people I just never feel that comfortable with. But I can fake it for that short time. It´s just relationships outside of work that are hard, or non-existent for me.

Through time, I was able to develop the ability to interact and socialize with some people through my special interests. But maybe I was just lucky to have special interests (in adulthood, at least) that other people had too?

I agree with you about doctors! My experience too....

Actually, many people on the spectrum did not get a dx on the spectrum and that was that. Instead they often got various psychiatric dx and treatments thrown at them, including long term harmful drugs and being institutionalized as psychotic.

What it actually did was extend the recognized scope of the spectrum. Previously, many who receive diagnosis under the AS dx did not get diagnosed as autistic even though their core deficit and issue was the core triad of impairments that is (in the modern view) understood to constitute autism.
The problem is 'whose better than who and whose smarter than who' type behaviors and motivations seem rather pervasive in human relations and certainly predate the 1990s when AS entered the DSM. Personally, I think it has more to do with human (or perhaps primate, or maybe even social-mammalian) nature.

Except few parents waiting for assessment results would have known much about any of the dxs being considered, and those who do know enough to worry, are in danger of knowing better (than to worry). Several people I know are parents and they've gone through the child-hood diagnostic mill with their children. Be assured the medical profession is often far from helpful in providing either information or avenues for pursuing information to parents going through the process.

I suspect the large bulk of parents know very little about various dxs, even after their child has received one. Certainly in my observation, most of what they do know, they've had to fight and struggle to find out for themselves, and few bothered with this effort before their children were diagnosed with something.

Even Wing admits that the Aspergers Dx was a long awaited addition to the DSM by many only because it held less social stigma than autism and many parents deliberately held off of getting official diagnosis due to this media prepublicity that started way back in 88.
Prior to around 1980 if you were diagnoses as being autistic it basically meant you were ret*d no matter how well you could actually perform and you are indeed correct in that many were institutionalized unecessarily.

Now it looks like the spectrum may be reduced in length if Aspergers is removed from the DSM or modified in some way which we'll be finding out this year, at least getting an idea of the drift the debate is taking.

I haven't heard about that. Are you saying Aspergers may no longer be a diagnosis?

The DSM and the stuff online seems more for diagnosing child Aspies. The older we get the better we get at socializing if we CHOOSE to try to learn. It's just like anybody else we do grow up albeit sometimes slower than NT's. But we do mature and we do also learn from our failures. Since many of us are underlying perfectionists we try super hard to mimic proper socializing techniques. Course we usually end up with a stress disorder later in life from trying too hard to be normal. But there's no reason to feel more and more confused.

Yes you can work and be successful and still be as my doctor puts it "a bad Aspie". Something else she says is "everyone thinks you're a mild Aspergers, but I see through you...you're actually very severe you're just a damn good parrot and have everyone fooled because you have a rehearsed answer for everything". That aggravated me because she's the first person ever figured it out. Keep up the charades, but don't worry you're still one of us.

It's all up in the air, but one plausible outcome is the next DSM will merge the ASDs into 'Autistic Disorder' with the possibility of applying 'sub-types' (for instance Autistic Disorder, Asperger type).