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Sati
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14 Oct 2009, 1:26 am

Do you ever avoid telling someone you're on the spectrum due to shame or embarrassment? Have you ever been ashamed or embarrassed to be autistic? I know people have mentioned being proud of their autism, but does anyone feel the opposite?



X_Parasite
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14 Oct 2009, 1:29 am

What sort of majority response do you expect on this site?

No, no shame here. No pride, either.



wigglyspider
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14 Oct 2009, 2:04 am

Sort of, yeah. Actually I haven't told anyone. No one but my mom and one of her friends knows, I think. (Unless they figured it out themselves and are just being polite not bringing it up..) Besides like doctors and teachers and stuff, but they don't count. I'm not really ashamed of IT, exactly, because I know what I'm like and I'm not ashamed of myself. (Mostly.) I'm just.. I guess I'm ashamed of the label and its implications, and also of the way it's portrayed in a lot of the communities I'm a part of. (Like you're a whiny hypochondriac attention whore, mostly..) So I don't want to say it because just saying it, to some ears, can kind of sound like you're begging for attention or something. And to others it might sound like you're incompetent or ret*d.

It's all other people's perception of it. I don't want to have to worry about what they will think when I tell them, so I don't. That's actually why I keep my mouth shut about most things. D:


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dusanyu
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14 Oct 2009, 2:15 am

no shame but i only let people i feel who need to know party to the information



Nightsun
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14 Oct 2009, 2:33 am

No shame but there is no need to let people know it.


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JohnnyD017
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14 Oct 2009, 2:40 am

Yeah it sucks. I never tell anyone, in fact I don't even hint at it. I put myself in the shoes of an innocent bystander. I still cringe when I see it on the computer if i'm at the doctor's office.

Not sure what the term 'meltdown' means but apparently i had a history of psychotic (is that the right word?) behaviour mostly when i was in school but some more recently. Thats kinda embarrassing. In fact the embarrassment i feel by thinking about it makes me frustrated and more likely to act that way again, i suppose its a neverending cycle!



Last edited by JohnnyD017 on 14 Oct 2009, 3:25 am, edited 1 time in total.

eroberts
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14 Oct 2009, 2:59 am

Don't really have any shame, but I try not to tell anyone unless I really have to because it can make people change their opinion of me.



X_Parasite
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14 Oct 2009, 3:36 am

It occurs to me that I didn't answer the first question.

I don't avoid telling people, but it doesn't come up in conversation very often. "Say, do you have a diagnosable condition?"
...Not a usual conversational topic.



zakkman
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14 Oct 2009, 5:53 am

didnt believe i had it till i found out courtney love had it which changes everything because i act alot like her and since eddie VH and joey ramone are possible AS also it amkes me prud even



AmberEyes
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14 Oct 2009, 7:16 am

Yes.
I was made to feel ashamed of AS from an early age.
I was told that there was something 'wrong' with me.
The adults around me often felt ashamed and confused.
I am very embarrassed at the thought of being helped because people close to me want me to be self sufficient and not rely on others, particularly if the 'help' being offered isn't appropriate, useful or is non-existent.


I have been told by people close to me that they can't see anything 'wrong' with me, so I can't 'have' a syndrome. These people are happy with me just being me and don't want to change me.

I've actually been told not to tell anyone about my past for my own safety.

Even when I struggle or get left behind socially, I have to keep quiet and just get left out of activities. I just have to accept that as a fact of life and accept that there are some situations where I can't keep up.

Also, what's the point of trying to explain something that people are either afraid of or don't give you a good scientific explanation of?

Given all of the non-sense and misinformation that I had to endure, I don't see how telling anyone would help. Also why tell someone about something that I was informally behaviourally assessed for with no full diagnosis.

Also people just see the label when you mention it, or worse just associate you with all of the negative things to do with that label and ignore your other strengths.

There are also people I know who unconditionally accept me as I am anyway and will help me no matter what, so what would be the point of telling them about AS?


I have never been ashamed of being myself.

I have, however been ashamed of some of the things that people have said about me regarding AS. I was often made to feel as if these things were my fault.

I do feel ashamed when words like 'disorder' are thrown around because these give other people the wrong idea about me. Most people associate the word 'disorder' with 'disease' or something 'bad', and will discriminate based on this word. I've yet to discover what that 'bad' thing is.

If people hadn't been as hostile to the idea or were better informed. I'd be more open with discussing these issues with them.



Katie_WPG
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14 Oct 2009, 8:15 am

For me, it's far easier to find a "happy medium" in which I can use a "social filter" while still acting more or less like myself than it would be to "let it all hang out" and expect people to be understanding.

Even if I were to use the social filter, and tell them about it, it would make interaction much harder. I've already tried that with some parents of adults with AS, and the most that I got was a bit of disbelief and condescending remarks/actions directed towards me. They kept on projecting their attitudes towards their children onto me, and then doubting me when I wasn't as obviously impaired as their children.

You can modify your behaviour, but it's much harder to modify the behaviours and thoughts of others. It's not shame, it's merely self-preservation.



Locustman
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14 Oct 2009, 8:40 am

Nowadays I have a policy of not telling anyone I have an ASD unless they also have one. I've opened up about my AS to a few NT friends in the past, but I've always ended up regretting it. The fact is, prejudice against any kind of neurologocal condition that makes a person different from the norm does still exist, and people can and will perceive you differently and in some cases use it against you - or break off contact with you altogether because they have no understanding of the condition and think that you're a psycho.

I wish this wasn't the case, but sadly it is. I'm fortunate in that my symptoms aren't so severe as to be immediately obvious to someone who doesn't know me, although they usually end up manifesting themselves in some form if a person has known me for a while.


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fiddlerpianist
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14 Oct 2009, 8:57 am

Being that I am only a "self-suspect," I have told no one in my immediate life save my wife and a few close friends. That's so I don't misrepresent AS or autism to people. Of course, were I professionally diagnosed, I don't think I would tell any more people (except perhaps my family, but maybe not even then).

Since learning about AS, though, I am certainly more forthright about my tendencies, capabilities, and limitations with people. When I go off on bizarre tangents, for instance, I tell people that my memory is primarily associative and that's why. I've found that describing myself in this manner has been very helpful.


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Speeder
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14 Oct 2009, 9:29 am

Locustman wrote:
think that you're a psycho.


I had some friends that gave me the nickname as psycho (maybe because not only I have a bizarre behavior, I wear black clothes, I had a nunchaku in my backpack, and for some reason the way that I look to people when I am upset is really scary...

Too bad that women think that I am psycho too, and get scared of me when I am looking at their beauty...



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14 Oct 2009, 9:48 am

I think the "Aspie pride" thing is to some extent a reaction to feelings of shame, an attempt to negate them and to drive home the point that Aspies are basically OK. In a sense it's very laudible, but it tends to get bogged down in spin and overstating the case, which is perhaps necessary for political purposes.

I don't know that shame is quite the right word for the way I feel about being an Aspie. It's certainly challenged some aspects of my sense of pride in myself, but I wouldn't go so far as to say I feel ashamed. I don't like telling people that I have the condition because I can't easily explain it to them in a nutshell, and I find it hard to believe they'll have the patience or inclination to really take it on board.

I can keep the details to myself and only explain them one by one as they become a problem. Suppose you were playing a card game and the other person kept invalidating the points you thought you'd scored, by divulging additional rules you'd never heard of before. You'd probably become suspicious that the whole game was being rigged against you. That's how I feel about revealing my impairments as they become problematic for me. I expect it to try their patience and credulity, I feel embarrassed at being the bringer of so much bad news, and at being the sole source of the information (I know they can always research it for themselves, but most of them probably won't.)



EC
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14 Oct 2009, 9:53 am

I don't tell anyone for obvious reasons.