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mljt
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06 Sep 2012, 7:54 am

Throughout my life, I think I've always come across as a bit odd. I don't think many people who don't know me so well would automatically think of me as having ASD, just as a bit awkward sometimes. This is largely because I'm pretty good at keeping parts of myself suppressed and hidden.

I think it would really help me to contact my bosses, friends, colleagues, young people I work with, either after or before my diagnosis and tell them about it. This would be on a "need to know" basis, and be more about what they can do to help me, rather than just "Hey everyone! I'm autistic!" such as "I really don't deal with things well when plans change, so please try to stick to them and give me as much information about what's going to happen." or "Now that you know about this, I can start doing things which relax me in front of you, so don't be alarmed if I start flapping my hands or I just get up and leave a conversation. These are things I usually want to do but stop myself."
A little bit like this: Self Advocacy Booklet

Has anyone else done something like this? Are there any templates I can use?



kirayng
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06 Sep 2012, 8:26 am

Why not use that booklet? I haven't found anything better in the US, if anything my country's culture is much less accepting of it than others. I have found through trial and error that self-advocacy STILL depends on ego-power, as in, "do you have the right to demand these things of me" the person you're asking would think! I know, it's not fair and it's ignorant but it's easier not to disclose, imo unless you're of a certain age group. Past your early 20s, society expects you to "just deal" with all of this and keep going like a normal person.

Maybe my viewpoint is narrow on this but so far no one in my life even my own family respects any of my wishes. (Okay my hubby does... sometimes, but he also has AS and understands).



mljt
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06 Sep 2012, 8:47 am

I think everyone I would tell would be very accepting of it (heck, I've come out as transgender to most of them in the past..this would be a drop in the ocean!) and I work in charities which deal with young people and in one job, with children with autism, so I don't see attitudes being a problem.

It's more about "You may have realised things are different about me, but here's what actually is different and here's how you can help."

I guess I could use the booklet as a template to write something of my own..I'm not very good at inventing things though so if anyone else has any ideas please suggest away.



Oldout
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06 Sep 2012, 9:16 am

I think it's a Catch-22 for us. Some people we tell will be understanding and helpful, yet others may not be able to comprehend or adjust to us. One point, we should never be ashamed or fearful of who and what we are. We all have alot to contribute to society. Good Luck !



PTSmorrow
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06 Sep 2012, 10:47 am

Oldout wrote:
I think it's a Catch-22 for us. Some people we tell will be understanding and helpful, yet others may not be able to comprehend or adjust to us. One point, we should never be ashamed or fearful of who and what we are. We all have alot to contribute to society. Good Luck !


At work it often caused negative responses when i tried to communicate certain issues since people thought i would be looking for advantages or a way to avoid unpleasant, stressful situations. Hence i agree with Oldout, it is a double edged sword.



Domisoldo
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06 Sep 2012, 11:04 am

While I'm just (for the moment) self-diagnosed and have not decided yet if I will tell people about it if and when I have a diagnosis, I think I can already go forward telling people... indirectly. In the light of the "AS hypothesis", I can see that some of my issues come from an oversensitivity to stimuli. When it's not too bad, I get a mild migraine (if there is such a thing). And when it gets really bad, it's like all the small sounds are extra loud, normal speaking sounds like shouting, all the lights and colors are too strong, exaggerated... It's hard to describe but it's really unbearable. In order to avoid that, I might need some time alone, wear earplugs, wear sunglasses indoor... And I think I should avoid some tasks and activities completely. I think I could tell people that I'm simply oversensitive to sounds and light, and that if I'm not careful I'll get a migraine and be totally useless anyway. Which is true. That's one situation, but surely there are many ways to "come out", and respect yourself, without actually "coming out".



Jtuk
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06 Sep 2012, 6:22 pm

mljt wrote:
I think it would really help me to contact my bosses, friends, colleagues, young people I work with, either after or before my diagnosis and tell them about it. .


Why would you announce it prior to a diagnosis?

Jason