Do you tell people you have AS without a diagnosis?

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fee
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12 Jul 2012, 3:15 am

I am in the early stages of finding out I have Asperger's and finding countless things that I can identify with. It's a daily discovery of yet more traits... so much that, quite frankly... I am not too sure how I got to 35 years old without sussing this out. So I am considering the whole diagnosis thing.

My husband thinks I should accept I have AS and get on with my life - he just doesn't see the point in having it made official. But I have struggled with my relationship with my mother, father and sister because of my mouth (opinions, talking over them etc) and I really feel that I just want to get dx'ed so I can go to them and say "look! I am not a bad person afterall!". I can only do that with an official diagnosis because I just KNOW what the reaction will be otherwise...

"Oh, what do you have NOW?"

They labelled my hypochondriac many years ago. I have always had bouts of depression and am on medication for anxiety... but they think it is all in my head. SO, going to them and saying... hey look, I have AS but no it's not official... Well... you can imagine how that would go down!!

You may be thinking, why I am even bothered about these people, well... before you say it... they are my family, I love them, and I just want to fit in and feel accepted, and liked. I know they love me, but they avoid me like the plague. It's kinda lonely, and really gets me down.

Which leads me to my question... if you do not have an official diagnosis, how do you tell people without sounding like you're 'making it up' or whatever... or don't you tell people at all?



Last edited by fee on 12 Jul 2012, 1:12 pm, edited 2 times in total.

CuriousKitten
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12 Jul 2012, 3:30 am

In my case, my self-diagnosis was a direct result of my best friend's daughter being diagnosed HFA, and getting SSI on the first try. All along, she and I have had a great deal in common to the point that one of my best friend's nicknames for her had her named after me. The way I phrase it is to explain the background and then mention that when I was her age, I wasn't doing any better. Basically if A = B and B = C then we can be reasonably sure that A = C.

There isn't much of my close family left -- just my brother's family and an aunt. And of course my husband who has been ringside through my discovery process. I've told my brother and aunt and they are being very supportive.

Outside of Wrong Planet, it's otherwise on a need to know basis at this time.


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Atomsk
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12 Jul 2012, 3:40 am

I want to weigh in as someone who has been diagnosed for almost their entire life. I was diagnosed in 1995 or so, as having autism. I have high functioning autism.

Even though I've had the diagnosis, for so many years, and have had it confirmed, I do not often tell people I have it, even though ideally this would help me out a lot. However, the world is not ideal, and most people have no idea what autism really is - the same can be said for Asperger's or any form of autism. They might have a stereotyped version, they might not know at all, but either way, in those situations it is not so good to tell people.

I myself, in my entire life, have only had 3 people EVER have what I would call a "good reaction" to me telling them about my autism, and that's with a professional diagnosis. What I mean by "good reaction" is, that they knew what HFA was before I told them, they accepted that I had it, allowed me to talk to them about it occasionally, and did not treat me any differently afterward. I'm not counting any reactions from medical professionals/psychologists/psychiatrists, or teachers/professors (who have had negative and positive reactions), or anyone who was told about it by someone other than me, before I met them.

I've had many negative reactions, including very negative ones - often people would treat me as if I was mentally challenged after I told them, or they'd just treat me differently somehow. One one occasion, someone refused to believe I had it because they thought it didn't exist, and that I was just willfully acting like this. (why on Earth would someone willfully act like this, or -want- autism, I have no idea...)

My main point is this: be careful who you tell! The best advice I can give is to keep it on a need-to-know basis.



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12 Jul 2012, 3:43 am

I told a lot of people I was self-diagnosing with AS, and I got the reaction you mentioned. Disbelief, even some mocking, and this from people I trusted. And I'm in kind of a similar situation. I'm 33 and was just now diagnosed. I didn't get much acknowledgement until I had the official diagnosis.

If you can, I would suggest getting the diagnosis. It lends credence to your position.

To answer your question, I learned from my first couple of attempts that telling someone your self-diagnosis may not be wise.


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outofplace
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12 Jul 2012, 3:53 am

I have posited it to many people who know me to see what they think. Some of them I have had read the Wikipedia entry on Asperger's to see if they thought it described me and I have gotten about a 50/50 ratio of those who think it sounds right to those who think it doesn't sound completely wrong but doesn't sound completely right either. My best friend, whom I have known for 16 years, said I definitely have it and that when he first met me it was like I was from a different planet. This is important as his son has had an autism diagnosis from one doctor (and borderline from another), so he is well versed enough in the subject to have a valid opinion. Another friend of mine, whom I have known for about 8 years, thinks it isn't me, but that I definitely have a lot of the traits. My mom also did not agree with me based upon my lack of sensory issues and rituals as a child. (However, when I pointed out what they were, she admitted I might have a point.) Then again, she also said that it was always like there was some sort of piece missing with me that didn't let me integrate everything together well. I also recall a friend I used to have in my mid to late teens telling me he thought I was autistic because I was "socially crippled". Then there is a co-worker of mine, who is a gamer and has several aspie friends who told me he thinks I might have Asperger's as well.

For me, part of my discovery process has involved talking to those who know me well or have known me for a long time to see if they think I might be on to something. It is one thing for me to see it in myself, it is quite another for others to see it as well. I am not really worried about it having any negative effects on my life as I am in a fairly safe place with the people I know (or maybe I am too socially blind to note the dangers).

As for what I think, I see myself as straddling the fence between AS and ADHD. ADHD was my official diagnosis in the mid 1980's, and I definitely fit that pattern. However, I also fit the majority of the AS pattern as well. A good friend of mine, who I recently helped deal with some of his demons, wants me to go to the mental health clinic he goes to in order to deal with my issues (depression, anxiety, depersonalization). If I were to go, I would try to bring up the possibility of Asperger's with them and see if I can't answer the question once and for all. I debate whether or not to go though as I fear ending up committed to an institution or with a big bill I can't pay. He thinks I can get help for free because of my low income but I fear that will not be the case.

Sorry if I strayed off course a bit there, but I hope I answered the question!


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12 Jul 2012, 4:04 am

I wanted to tell people sooo bad when I first self-diagnosed, but my wife adviced me to keep it secret until I atleast talked to a psychiatrist who knew something about Aspergers. After he observed me in a groupsetting 3-4 times, and I talked to him for 1.5 hours(a total of 7-9 hours), he said it was most likely Asperger's and that he would send a recommendation for me to be diagnosed by a specialist team to find out how impaired I am in relation to work.

I wouldn't call it an official diagnosis(some might), but it was enough for me to go ahead and tell my closest family it were(because saying it is a semi-official diagnosis just wouldn't have made the same impression, and it would have been dismissed by them). I did this because if I didn't, I would have to wait ~6 months before I could tell them, and I just couldn't handle that.

I fit in most of the symptoms and traits(does anyone really fit in absolutely all?), and I have done self-differential-diagnosis while being obsessed with it for many months. Printed out everything from depression, to all personality disorders, to schizoprenia, to ADHD, to anxiety, from DSM and ICD, and gone through them all to find what symptoms I fit, and what I can rule out. I've taken all the tests I could find that could possibly in some way indicate Aspergers. I've written a 10 page long bulletpoint biography relevant to Aspergers.

I don't know what to tell you, it kind of depends on how sure you are, how much work you put into the self-diagnosis, and how important it is for you to tell them before it is official.


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Jasmine90
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12 Jul 2012, 4:14 am

I very rarely tell people that I'm diagnosed with aspergers, I definitely would not tell them at all that I was self-diagnosed. Why? Because of human nature. People like to ridicule others regardless of how it makes them feel. If I was a self-diagnosed aspie, I would just be comfortable with that and not feel the need to tell other people, because If it's not verbal judgement, then they're thinking it and then you notice them treating you differently.
I've experienced this sort of judgement despite being diagnosed at a young age.
Internet is worse, on here everyone can say they have this or that since they know they'll never come face to face with many of the people they meet online, and so yeah, it has become trendy to be on the spectrum. Why anyone would want this is beyond me. Sure some function better than others, but when you get down to it, many of us suffer every day because we lack something that others find so easy to understand.

I have to wonder, how many self-diagnosed aspie's actually do have this. How many have exhausted every other possibility, or do they just want to be looked at differently from a nuerotypical's perspective? Maybe being "normal" is mundane, so they need something wrong with them to tell others about in exchange for sympathy or to be thought of as different, and unique.

Of course not every self-diagnosed aspie is this, there are many that fit perfectly into the puzzle, and those are the ones that shouldn't feel the need to tell everyone about it, but feel comfortable knowing they at least know themselves a little better and can finally understand their quirks.



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12 Jul 2012, 4:31 am

I should add something, I also exhausted the possibilities of my physical symptoms. Investigated my stomac with a camera both from the bottom, and the top(I know some say the bottom is worse, but man, I gagged so hard the whole time during the "from top" procedure, that I had nightmares a week), and some other biopsies and machines they had to investigate my inner organs, and more I won't get into. And yes, I also excluded Hypochondria :wink: )

I don't say this to convince you I have Aspergers, I only say this to give you a little gauge of what some people do to end up with a self-diagnose. I get the feeling some(anyone, not you, I talk about self-diagnosing in general) take one online test before they decide thats where they belong. It seems you have talked to many and gotten their opinion, which is good, but the truth is that their opinion is just as good as any non-medical professionals opinion. What they know about Aspergers are usually what you tell them, or what they have picked up from myths in media.


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mike_br
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12 Jul 2012, 5:33 am

my opinion is very brief, and simple: go for it.

You're obvsiously unsatisfied with the informal diagnosis (I was too), so get an official one. I don't regret getting mine, even if I let it rest on the bottom of a drawer.



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12 Jul 2012, 6:03 am

If I were to tell people that I have Asperger's, then, in the future, when we are arguing about things ( I argue quite often ) they could just turn around and say "Listen, Chris. You have told us all that you have Asperger's, so the points that you are making in this argument are moot, as it's just your Asperger's talking. You're not thinking straight".

In other words, my arguments would no-longer be seen as valid by my friends/collegues once I had told them that I have Asperger's.

I don't want to give them the opportunity to use it against me, in order for them to win the arguments.



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12 Jul 2012, 6:39 am

mike_br wrote:
my opinion is very brief, and simple: go for it.

You're obvsiously unsatisfied with the informal diagnosis (I was too), so get an official one. I don't regret getting mine, even if I let it rest on the bottom of a drawer.


^^This.
if you were contet with your self-diagnosis you wouldn't have started this thread. It will put your mind at rest to get diagnosed so just go ahead if you can.


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12 Jul 2012, 7:31 am

I wasnt self diagnosed as perse, I befriended a really nice guy who i found out had aspergers. Shortly after i found out my BFF also was diagnosed with AS when her older sister was diagnosed with Autism.
This guy i met after about 6 months, cause i would talk to him about everything, usuallya bout myself, suggested to me that I may have AS, considering when we 1st met i spent 2 hours in a conversation with him on random subjects to do with bio-genetics and other strange things. anyways i spent 2 hours looking at the wall, made no eye contact. all this into consideration, he told me i should go get diagnosed.
I told all this to my BFF and she agreed, with him that i most likely have AS. this was a year ago, i can't get a diagnosis, because of my age and the area i live in but they all accept me as aspie, and i accept myself as aspie.



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12 Jul 2012, 7:56 am

Well I did, but now I don't really care that much....and I don't even know if that is what was wrong with me, I mean I suffered oxygen loss at birth so maybe I just have brain damage. Maybe there is some other disorder that accounts for having something wrong with you ever since you were a child that caused unusual behavior or whatever.


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12 Jul 2012, 11:30 am

Get a diagnosis.

Especially if you've thought you had things before and didn't, your family assumes that this is another passing phase or "I googled and got another disease/disorder." Why do people not think highly of anyone "diagnosing" themselves with anything? "Even physicians are discouraged from engaging in self-diagnosis, because doctors also make mistakes in diagnosing themselves." Sometimes you need a medically trained person to properly diagnosis something from a third-party perspective. Asperger's has a higher rate of successful self- "diagnosis", and a real doctor diagnosis lends credibility. You can then tell whoever.... I would tell only on an as-needed basis.



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12 Jul 2012, 1:05 pm

^^^
:roll:

When I self-diagnosed, I told a lot of people. Most people said "That makes sense" and fewer people said "I thought you might be", one person said "I only ever see your writing style in people who turn out to be on the spectrum" and my mother said "a family friend told me you were probably autistic."

Then I went to get an official diagnosis, and was told I was fairly obvious.



fee
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12 Jul 2012, 1:11 pm

Thank you all for your input, I am definitely swaying towards getting it confirmed.

I haven't ever decided I have something and it turned out I didn't. I tend to be one of those people who think on the other end of the scale... it's just my family :-\ I have never fit in or felt like I belonged and this explains why. Yes, I think I definitely need a diagnosis :)


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