Saying you have AS - making yourself an easy target?

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Liverbird
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20 Jan 2009, 5:34 pm

I've struggled with this question, but I think that it's important that we do tell. How do we change the perceptions of others about autism and what autistics are if we don't educate them? If people think that all autistics are retarded, then it is because we haven't given them anything different to work with. It's our job to change the face of autism. We're the ones who are higher functioning. Lower functioning people have all sorts of resources, but we don't. Why not? Because most of us try to hide behind the neurotypical curtain pretending to be washer settings (normal) rather than proclaiming our autism.

The perceptions of others around us aren't going to just magically change. We have to give them a reason to change them. Why not be an advocate for ourselves.

I know it's not as easy for others to "come out of the autism closet" and it probably is for me. I work with a service provider, so it's a little more acceptable to have a disability. I work actively every day to make sure that people understand that not all autistics are retarded or whatever else they think about us. I wear lots of AS t-shirts. I have a sense of humour. I prove it.


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20 Jan 2009, 5:46 pm

Liverbird wrote:
I've struggled with this question, but I think that it's important that we do tell. How do we change the perceptions of others about autism and what autistics are if we don't educate them? If people think that all autistics are retarded, then it is because we haven't given them anything different to work with. It's our job to change the face of autism. We're the ones who are higher functioning. Lower functioning people have all sorts of resources, but we don't. Why not? Because most of us try to hide behind the neurotypical curtain pretending to be washer settings (normal) rather than proclaiming our autism.

The perceptions of others around us aren't going to just magically change. We have to give them a reason to change them. Why not be an advocate for ourselves.

I know it's not as easy for others to "come out of the autism closet" and it probably is for me. I work with a service provider, so it's a little more acceptable to have a disability. I work actively every day to make sure that people understand that not all autistics are retarded or whatever else they think about us. I wear lots of AS t-shirts. I have a sense of humour. I prove it.


I completely agree, we need to do something about the misconceptions of autism, and the fact that some people don't know anything about, or even know the name of the condition.



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20 Jan 2009, 6:28 pm

I don't tell anyone about it for all the same reasons as everyone who already posted. And whenever I may deem it necessary, I will tell my parents to keep a lid on all knowledge of my AS, very explicitly.



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20 Jan 2009, 8:40 pm

Liverbird wrote:

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I've struggled with this question, but I think that it's important that we do tell. How do we change the perceptions of others about autism and what autistics are if we don't educate them? If people think that all autistics are retarded, then it is because we haven't given them anything different to work with. It's our job to change the face of autism. We're the ones who are higher functioning. Lower functioning people have all sorts of resources, but we don't. Why not? Because most of us try to hide behind the neurotypical curtain pretending to be washer settings (normal) rather than proclaiming our autism.


This is a good point, and I admire anyone who can live that way. But it takes some degree of courage and perhaps a willingness to risk exploitation by others. It's a tough decision.



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20 Jan 2009, 8:58 pm

I would never tell anyone that I 'had' AS since that would only tend to confirm their perception that I was unusual to say the least. Having a 'real' 'medical' 'condition' is a bad thing to have even if it's something simple like Cancer which also tends to to scare people as many still think it is contagious.


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20 Jan 2009, 9:23 pm

garyww wrote:
I would never tell anyone that I 'had' AS since that would only tend to confirm their perception that I was unusual to say the least. Having a 'real' 'medical' 'condition' is a bad thing to have even if it's something simple like Cancer which also tends to to scare people as many still think it is contagious.


Umm... Really? I would have never guessed that anyone would think it is contagious.



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20 Jan 2009, 9:31 pm

Which reminds me, why is it people like telling other people about these things?


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20 Jan 2009, 9:50 pm

I've told my family. I needed my mum to know because if I didn't she'll tell me to get off my lazy arse and get a job. By the way, it's not as simple as handing in a resume to someone who has a job opening and sitting an interview. My poor communication skills do not impress the interviewer, so I don't get the job.

I've told a few friends and they don't like to talk about it. No one has tried to take advantage of me though.



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20 Jan 2009, 9:53 pm

I believe I would stand to lose way too much from getting a diagnosis. I don't even use my real name on this forum because I don't want people finding out about it.



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21 Jan 2009, 12:17 am

I don't think telling people you have Aspergers syndrome will make you any more vulnerable. If you're vulnerable people will pick it up anyways. People who manipulate have a radar sense for naivety.

There might be other reasons not to tell people though. It doesn't really make sense to me to tell anyone unless there's a clear advantage to them having that knowledge. In most cases though people don't really understand what the condition is so it's quite pointless to tell them.



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21 Jan 2009, 3:44 am

marshall wrote:
There might be other reasons not to tell people though. It doesn't really make sense to me to tell anyone unless there's a clear advantage to them having that knowledge. In most cases though people don't really understand what the condition is so it's quite pointless to tell them.


Yes.

There's never been any clear advantage for me, so I usually keep my mouth shut.
Telling people would actually be social and occupational "suicide".
I might as well walk around with a giant arrow above my head.

And they usually don't believe you anyway and think that you should "just get on with things".

Where I come from, some people still think that it's contagious and only little boys who repeatedly stick their hands into the deep-fat fryer can have the condition.
At the word "syndrome" or "autism" most people want to run or avoid the subject altogether or discuss far worse cases in depth and not listen to me.

If I do tell people, my close friends and relatives say that "I'm better than that", I "can't possibly have it" because the doctors were "deliberately lying to me"; that it will invalidate all my achievements and everything I've worked so hard for; that there's nothing "wrong" with me at all and I'm just deliberately attracting attention to myself; and that I "shouldn't label" myself; and that I shouldn't let "them" (doctors professionals etc.) win and that I should just "forget about it" because they are all "wrong".

When I do tell people in confidence such as counsellors, there's really nothing they can do anyway. They just tell me to "express my feelings" or that I'm "on a journey". When I tell them about my past their jaws drop with dumbfounded bewilderment and they openly admit that they aren't experienced enough to deal with me.

They give me no practical advice or clear coping strategies or helpful step by step courses of action.
Nothing.



Last edited by AmberEyes on 21 Jan 2009, 3:55 am, edited 2 times in total.

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21 Jan 2009, 3:51 am

I have been blessed with a large physical stature, so I don't really have to worry about being an "easy target". I am from a small town, and I could probably prance up and down the streets wearing a pink tutu, and nobody would say much. :lol:


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21 Jan 2009, 6:15 am

Only those I think need to know do so, e.g., doctors, employers. Since I'd be misunderstood by anyone I worked with anyway, I decided to "come out". It had some advantages, but someone did take advantage of it to cover up for their own negligence. They used my disability as a reason for a bad situation occurring and to get accomodations for me, which also covered their back. The real cause (their negligence) was not officially recognised.



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21 Jan 2009, 12:27 pm

I may be in a unique situation. My employer has to know about my AS, because my sense of smell is so wildly extreme that I have to be in a fragrance-free area. I have a MySpace page. There are really only two groups of people who are going to be interested in it: you Wrong Planet members, who obviously already know about my AS, and my many, many friends (whose names generally escape me :lol: ) who I see at Max Creek shows. I feel so stupid that I can't remember who they are, and can't make small talk, that I want them to know it is because I have a handicap in that area, and don't mean to seem rude or unfriendly. I do so much for them (nowadays posting old Max Creek shows to the Internet Archive or posting my photos from a show to my website) that they are always glad to see me, even if I am a jerk. :D

This is what I posted on my MySpace page:

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I'm a 64 year old male with Asperger's Syndrome, a high-functioning form of autism. Among other things, this causes massive distortions in the five senses. My sense of smell is grossly exaggerated for fragrances (perfume, cologne, after-shave, smelly soaps, flowers, etc) and cleaning products, so severe that it is diagnosed as an allergy. I also have problems with the smell of alcohol, which is why I don't drink.
It also means that I am socially "clumsy" (to say the least!) I don't know how to make "small talk," but if you get me talking about any of my passions, I can bore you to death! :) I can't remember names and faces, at least until I get to know the person very well (This is particularly embarassing at Max Creek shows, where everybody knows me :) And I can't look other people directly in the eyes, probably the most consistent symptom of Asperger's Syndrome. If it appears that I am, I'm really looking you in the mouth, which seems to be good enough for most people :)


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21 Jan 2009, 1:32 pm

I dont tell people. Keep it on the low, and im fine.


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21 Jan 2009, 3:04 pm

I would like to tell people but I possibly only have PDD NOS which means nothing to anyone really. Plus people do tend to have a pretty weird attitude to AS.