How should I tell people about AS Diagnosis?

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Live330
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17 Oct 2015, 9:33 pm

I'm a 21 year old male just recently diagnosed with AS. I can discern who I want to tell among my family, friends, and colleagues. The struggle is figuring out how... even thinking about myself, a year ago when heard the words "Asperger's" or "Autism," If I'm being brutally honest with myself, I know that prejudices and stereotypes crept into my mind. There's a stigma attached to these words that portrays people on the Autism spectrum as broken, disabled, and even inferior. It's messed up but I acknowledge that it's a reality. I'm weary of setting people up to view me in this way rather than as someone who's just eccentric but I still feel that some people really need to know so that they don't think I hate them when I refrain from expressing emotion outwardly (I get this complaint often). I also would like some help from people I can trust in social situations.

How can I explain this to them without using the label "Autistic" or "Aspergers"? Would describing myself instead as "neurodivergent" or as a "neruominority" be wise? What are your experiences of what worked best and worst when telling people?

Peace.



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17 Oct 2015, 9:36 pm

In a word: Don't.

Otherwise, they will never treat you quite the same way ever again.


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17 Oct 2015, 9:39 pm

Live330
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17 Oct 2015, 9:44 pm

@Fnord, @DailyPoutine1, Some people actually think I hate them because I never smile. Even when I insist that we're friends they are convinced that I hate them because my outward emotions are incongruent with my words. Giving them some sort of explanation would help them believe me when I tell them that I actually like them and would help them from being offended when I break unwritten social rules. How could one ever expect to move forward in such relationships without telling them in some way and to some extent?



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17 Oct 2015, 9:52 pm

Live330 wrote:
@Fnord, @DailyPoutine1, Some people actually think I hate them because I never smile. Even when I insist that we're friends they are convinced that I hate them because my outward emotions are incongruent with my words. Giving them some sort of explanation would help them believe me when I tell them that I actually like them and would help them from being offended when I break unwritten social rules. How could one ever expect to move forward in such relationships without telling them in some way and to some extent?
Dream on. Giving them any kind of explanation will only give them another reason to dislike you. Relationships don't "move forward", people do.


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17 Oct 2015, 10:00 pm

It might be better to talk about the symptoms and not the diagnosis, unless you really trust this person a lot. For instance, you could say, "I have a resting grumpy face but really I'm a happy guy. I'm not bad, I'm just made that way."
(sorry, couldn't resist the Jessica Rabbit quote)

Or, talk about how you don't express your emotions much, and they should just ask you how you are. Or, how sometimes you get the social rules wrong, and please tell you if you mess one up, and that it's not intentional.


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Live330
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17 Oct 2015, 10:08 pm

@Fnord, I have more hope in humanity than that. Reconciliation is a legitimate possibility for some relationships I'm not willing to abandon.



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17 Oct 2015, 10:18 pm

You should avoid telling people unless you want to be treated differently. I actually do way better when I don't tell people my diagnosis. If it's necessary I bring up anxiety. I just notice mention autism distorts people's perception of me.


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17 Oct 2015, 11:15 pm

Live330 wrote:
@Fnord, I have more hope in humanity than that. Reconciliation is a legitimate possibility for some relationships I'm not willing to abandon.


Fnord up there is a bit jaded with regards to everyday diplomacy, although I usually follow his policy I feel the same way. Valuing someone's company often means collateral gestures like explaining yourself, explanations themselves aren't always satisfactory for any parties involved but they provide common ground for a later date.


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aspergerasperger123
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18 Oct 2015, 12:03 am

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18 Oct 2015, 1:01 am

I'm disappointed by how unhelpful some people here are being.

Live330. The way I would do it is wait until they bring up another one of your traits, e.g "you must hate me because you never smile", or "it drives me crazy that you never tell me what you're feeling". Once they do, you can explain, "I behave this way because I have Asperger syndrome. It's on the autism spectrum, and I was diagnosed by [doctor] on [date]. Asperger's is also the reason I... [add other relevant autistic traits]." It's been my experience that people who already know you don't start treating you differently because of your label. My friends and family didn't. In fact, I've gained several friends on the spectrum as a result of being open about my diagnosis. People are not as inherently awful as Fnord would have you believe.


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macandpea
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18 Oct 2015, 1:11 am

God. I'm sorry some of you have been made to feel second rate because of your diagnosis - I have too - but the whole world isn't like that, and by telling people close to you you can help them support you better.

The only way people are going to be more understanding of people with ASDs is if more of us are willing to be open about it.

To the OP - start off by telling those closest to you. They might not even be surprised - autism awareness is growing, and I know I've told a few people who have turned around and said "I know, I can tell."



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18 Oct 2015, 1:52 am

Your story sounds similar to mine! I want to tell people (what a load off, right?) but I likely won't because I generally don't tell people anything ever. I have, however, told immediate family and a couple friends. It went well I think, here's how I did it in steps. :)

1. Practice run on someone who knows about AS. Bonus: Avoid embarrassment by choosing someone I will probably not see or talk to face to face in a long time, if ever. I have an old friend on FB who has autistic kids. I mustered up the courage and wrote her a message. She was not at all surprised, in fact she thought I was diagnosed as a kid but was too polite to say anything, just in case she was wrong.

2. With that out of the way I told my sister, who isn't a total jerk in general. She was cool with it, surprised because she knows nothing about AS beyond negative stereotypes. This convo helped me figure out the kinds of questions I need to be prepared to answer in the future.

3. I told a close friend who knows I'm a bit funny when the mask comes off. Didn't make it a big deal, laughed about it and made light to take the edge off. He still talks to me, so nothing has changed. I don't think he was surprised.

4. I told my parents and siblings. It was really uncomfortable and scary so I came prepared with a lot of information and lists and such. They're not really educated on AS and aren't generally cool with discussing mental illness because...not sure why. My mom is crazy so we just avoid triggers, haha. Not sure if they believe me but they haven't said anything suggesting they don't. They were supportive and listened and happy that I'm happy to know wth is wrong with myself (they didn't know I struggle so much as an adult, I haven't mentioned my issues since I was a teen). Nobody has treated me differently and we haven't talked about it since. I'm 100% ok with that.

5. Told another close friend. She said it's not surprising but I got a really weird vibe. She's probably my closest friend but I've never had an easy time reading her. We don't have a ton in common and I'm not always at ease in her presence, though we're bound forever by a shared experience. I don't think we're all that emotionally connected. I probably won't discuss it again with her ever.

6. Told close friends of my husband (and mine by default) randomly when we went out because I just felt like it. They were REALLY cool with it and weren't all that surprised. Turns out one of them has a brother very much like me.

7. Ran out of people I felt were owed some sort of intimate knowledge about me and started looking for people I can talk to anonymously to satisfy this weird compulsion to get it out of my system.

So mostly good experiences. I definitely made a point to explain the whole spectrum thing and that stereotypes are really inaccurate for high functioning people like myself. They don't really need to know just how much I truly struggle, they might not believe me anyway. I want to get it out there, to tell everyone so I don't feel like I have to hide anymore. But for now I'll stick to need to know basis. Nobody NEEDS to know anything and I doubt it will come up in conversation so...I suppose I'll be keeping it to myself until I figure out what I want to do long term.

As for how to do it, here's a tip: use the word Aspergers and not autism. I'm guessing you're on the high functioning end? I'm not ready to deal with all of that busting stereotype business right now and people seem to view autism in a way more negative light than Aspergers, despite the fact that they're the same spectrum.


Good luck!



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18 Oct 2015, 6:53 am

Depends on who and why you want to disclose the diagnosis.

Like, I got my diagnosis after many hours of psychiatrist evaluations spread across multiple appointments. I initiated the appointments largely because of the problems my husband and I have with communication and me seeming "cold/distant" to him and always having a grumpy face by default (which he insists has something to do with him in some way, which I consider incredibly narcissistic of him, but I digress). When the final appointment drew to a close the doctor diagnosed me with assorted things including Asperger's.

I left there feeling happy to have an explanation for my issues which does not boil down to being a b!tch or having a personality disorder. I was eager to text my husband and explain that I'm just like this because of being born different, with Asperger's. I felt like it was a blessing to understand this about myself, and a starting point for growth.

He replied "well, now I have no hope".






I should not have told him. In the future, I will tell people when it will actually serve my needs and be in my best interest.

For example, going to doctors I often feel they think I'm making stuff up and/or not listening to them because of hte lack of eye contact and flat affect/expression. I will tell those people about my diagnosis because it will benefit me.

Most other people, I will not be telling from here on out. Or if I do, it will be in my way when I feel ready to deal with their reactions.

I did tell my best online-friend, who replied along the lines of "so you're exactly the same person as you were yesterday except today someone put some labels on some stuff? neat. want to play a game?" and we moved on as if nothing happened. Everyone needs someone like that in their life. Thank god for internet, or I wouldn't have anyone.

So.. don't jump in until you're POSITIVE it's time. You can never - EVER - un-tell people. But you can always tell them later.


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18 Oct 2015, 7:28 am

Live330 wrote:
@Fnord, I have more hope in humanity than that. Reconciliation is a legitimate possibility for some relationships I'm not willing to abandon.
You're young. You'll learn. Then you'll see humanity as it really is. Good luck with that.


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18 Oct 2015, 8:03 am

I am going to reveal it in the eulogy today at my dad's funeral. I am not going to go into any detail about autism but describe the acceptance I received from him (I highly suspect he was on the spectrum but won't say that) in the pre understanding of autism era and how it benifited me. As those of you who read the adult life section know in the last year I have had a stroke and tounge cancer that has left me at least temporally non verbal. In these unique circumstances I don't expect derision. If I do get it I will learn a valuble lesson about that person


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