How does it benefit you to share your diagnosis with people?

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Balbituate
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25 Mar 2018, 9:24 am

For me it rarely does. It mostly just benefits the other person. I’ll disclose to airports and stuff, but nothing else. Every passion, strength, weakness or quirk will be pathologized if people knew my label. It already happened to me. Someone once told me that enjoy Danish music made me autistic. Nah, I just enjoyed Danish music.



IstominFan
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25 Mar 2018, 5:24 pm

I am inspired by a tennis player few people have heard of. I suppose that makes me atypical in a way.



SH90
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25 Mar 2018, 5:27 pm

Affirmative Action, it can be used to our advantage.



elbowgrease
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25 Mar 2018, 5:39 pm

It seems like people are a little bit more forgiving when I say the wrong thing now. A little less creeped out by me. Hard to say. I don't really know anyone. Don't really talk. I can think of one person that I've known for almost a decade now that I actually see on a regular basis, and I'm not sure how differently she might think of me now.
I think it's helped clear up an issue between my mom and I. Hopefully it will help when I have the chance to go back to school again (math).



Raleigh
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25 Mar 2018, 5:48 pm

It doesn't benefit me.
The times I've disclosed it's made my life much worse.
For example, I felt I had to disclose to the hospital, now they treat me like I'm ret*d and talk to my partner about me while I'm present in the room like I have zero understanding about what's going on.
I disclosed at work and almost lost my job because I somehow became "untrustworthy" overnight, despite evidence to the contrary.
I told my mother and she gives me absolute hell over it.
So...no joy on any quarter.


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ZombieBrideXD
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25 Mar 2018, 7:50 pm

i bring it up when its relevant. work or in a doctors office, i dont really go out and meet new people so i dont really have a reason to tell everyone.

i definately dont tell the customers i serve! haha


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plokijuh
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25 Mar 2018, 7:56 pm

I think it depends entirely on the situation. I think I fall into a strange category in that I should have been diagnosed as a child. I'm HF, but not as much it seems as most of the women who fall through the cracks (I was homeschooled, my parents have recently told me they worked out I was on the spectrum but 'didn't think it was relevant'/thought I'd be offended), so my whole life people have treated me weird anyway. I feel as though having a name for it has been really helpful for people around me because they have a reason for all the weird. I can definitely see why a lot of my behaviour had confused them previously, and I'd hurt a lot of people unwittingly because when my capacity to cope reduces I withdraw from any human contact for months at a time as much as possible.

My family are the only ones who have been unhelpful about it, and that mostly because I'm pretty upset at them for all knowing what was going on, talking about it without me and failing to share a) that they recognised there was anything going on b) let that follow through to any kind of empathy. They still like to see autism as a chronic overreaction to everything.

I tend not to just share it as a label though. I say the diagnosis, followed by what's relevant to the situation. i.e. '...which means that I find x situation difficult for y reason...". As much as possible, I try to plan ahead for these kinds of explanations, because in the moment it rarely comes out the right way up.

I do think people have patronised me more than before, but it's only been a few months so we'll see if that gets better or worse. The few people that really matter have really taken on board how they can get alongside me and help.

I find people don't understand aspergers/autism at all in the general public. They can identify some of my behaviour as such (the annoying things for them), but don't see the whole picture or understand at all why those things happen or see the iceberg under the surface of those behaviours). e.g. my Dad sees the label as just clarifying how I need to try harder to hide it, and he thinks it'll give me hints for hiding it better - zero empathy for the fact that those difficulties are the underlying chaos breaking out into the open. My husband has a friend and he and his wife have been so amazing. Especially giving my husband someone to talk to, and I feel like they've tried really hard to understand it. A click moment came for them when I said to them that all of the weird body movements if I'm really stressed and all that stuff are just like tiny bits of the intensity inside my head breaking out of my body, and that most of my energy goes into trying to make all of that less, but that means I have nothing left to do all the things other people are expecting me to do. They've been really patient in giving me time to get things out and say what I need to say without talking over me because of that explanation.

The only medical professional who has been notified about it (my GP) has been excellent about it. I don't know whether I would tell others. I find medical professionals dismiss and patronise me anyway unless they know me, so I can't see how it could really be much worse.

I guess the tl;dr verson would be: I think it's helpful when it is linked to a specific, concrete context or outcome and makes it clear to the other person why your behaviour is different and how they can help. If they aren't trying to help before the explanation, I doubt they'll try help afterwards.


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AQ: 42 (Scores in the 33-50 range indicate significant Austistic traits)
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goldfish21
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26 Mar 2018, 3:40 am

I'm with you; it rarely does. Once in a blue moon it's been beneficial to disclose it to friends who've known me for a long time in order for them to better understand me. But overall I don't disclose it. Most people just know me as a bit of a "different," or quirky person, especially those I've met in the last few years. I only disclose it when it's necessary, pretty much.


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Balbituate
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26 Mar 2018, 7:39 am

goldfish21 wrote:
I'm with you; it rarely does. Once in a blue moon it's been beneficial to disclose it to friends who've known me for a long time in order for them to better understand me. But overall I don't disclose it. Most people just know me as a bit of a "different," or quirky person, especially those I've met in the last few years. I only disclose it when it's necessary, pretty much.

Better understanding is a weird concept. I find it makes people feel like they understand me more, but in reality they don’t. Like as a kid both me and my sister would spin on chairs to play. They got mad at me for stimming, but since my sister has no label they just saw it and playing and left her alone. Or when I was in school and wrote a short story for an assignment the teacher mentioned some throwaway line I wrote about a special interest that no one would normally notice or care about. I guess knowing I’ve been labeled with autism helps people understand from a psychological perspective why I react to certain behavior the way I do. Some examples would be why I feel uncomfortable when people at restaurants recognize me, why I always apologize when I talk about my interests and why I get mad at people who look or smile at me when I’m in public. All of these things make me feel weird or autistic.



AceofPens
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26 Mar 2018, 9:56 am

I'm not diagnosed yet, but I have given some thought to how open I would be in the future if I do receive autism as a diagnosis. I think, personally, that I would only benefit from sharing because it would lead to fewer misunderstandings. I mean, I'm weird. That much is obvious to most people, and they've come up with plenty of labels without my input. My ARFID was often misinterpreted by nonprofessional adults as anorexia as far back as when I was nine. So I wouldn't hesitate to make it known that I have autism because there are worse things that people can and will label me with if I leave it up to their imagination.


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Benjamin the Donkey
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26 Mar 2018, 10:06 am

Everyone has always thought I'm "weird" "quirky" or "eccentric." But I've actually disclosed my condition to a tiny number of people--my wife, her parents, my kids, and two friends. I'm thinking about telling a couple of other friends who live in other countries by way of apologizing for being so uncommunicative.


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Spiderpig
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26 Mar 2018, 10:15 am

It only benefits those looking for a way to invalidate you permanently.


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garysoneji
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26 Mar 2018, 10:23 am

It's not something I like to bring up, but for the few people I've shared with, it's explained my awkward social behavior. They have become a little more patient with me and sensitive to my diversity.


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kraftiekortie
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26 Mar 2018, 11:36 am

I have not benefited one whit from "revealing" my diagnosis---except here on WrongPlanet.



ElleGaunt
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26 Mar 2018, 4:01 pm

Balbituate wrote:
Someone once told me that enjoy Danish music made me autistic. Nah, I just enjoyed Danish music.


Well then how else do you explain that all Danish people have autism?

Just kidding.

That's a ridiculous thing for them to say to you. I hope you laughed in their face.



ElleGaunt
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26 Mar 2018, 4:09 pm

AceofPens wrote:
I think, personally, that I would only benefit from sharing because it would lead to fewer misunderstandings ... I wouldn't hesitate to make it known that I have autism because there are worse things that people can and will label me with if I leave it up to their imagination.


People won't necessarily believe you, though. I mean, this is I think the point of the thread here. Most of us thought it could be like this. But sadly people often are ignorant.