How Open Should I Be About My Asperger’s?

[100skerls]

I have decided I’m going to “come out” as autistic in a Facebook post on autistic pride day and describe a bit of what autism is and isn’t. If it wasn’t for Greta Thunberg being open about being autistic I would still have no idea I’m autistic. It’s because of her I realized I didn’t know what autism was and thought I probably have whatever she has. It is a sacrifice to tell people though as others have said. For me anyone who would have a changed opinion about me for being autistic already has a negative opinion of me for other reasons. I have little to lose socially otherwise I probably wouldn’t tell. But I won’t be telling people in person for now because that sounds a lot harder.

 

[Alexej]

I have told my (adult) children and it does not seem to have made a difference. They have their opinion of me (which is poor - and I understand why) but there is no credence given to this bit of info.


It feels like they think they know what it means but have not talked to me to understand how it is for me, so I view their understanding as suspect.

 

[Running Girl]

As with many other stigmatized conditions, i see pros and cons to letting people know. Yes, many will only think of the Rainman stereotypes and either deny you are on the spectrum or judge you for it. But on the other hand, how will they ever know what this can really look like unless we tell them and show them?

 

[Rasputin]

I’ve always had a really hard time in socializing with people, except for one or two close friends. I’m bad at making eye contact, I can’t focus in groups or loud places, like restaurants, and I don’t know how to keep a conversation if it’s about a subject I don’t know anything about. All the typical signs of Asperger’s. I feel that people avoid me because they think I’m rude or judgemental, but that’s not my intention. I also have social anxiety from past experiences. I’ve had multiple people criticize me for being ‘too quiet’, or others saying that I talk to much. I don’t hold it against them, but they tend to avoid me at all costs.

Lately I’ve been trying to work up the courage to be open about it, but I’m worried that because I don’t have an official diagnosis, they won’t take it seriously. I took an online RAADS-R test, and scored a 195 on it. I wanted to look into getting diagnosed, but with the COVID-19 pandemic, that’s not something I’m gonna focus on right now. I also know that it can be difficult and expensive to get an official diagnosis.

I’m just wondering if I should let people know, without a diagnosis, so that they don’t think I’m just being rude or cold? Or should I keep it to myself and just try to improve my social skills on my own?

I was officially diagnosed in January, and have only told a few people. However, my company has employee leadership volunteer groups which I joined. As a member of one of these groups, I sat on an autism panel last year before I was diagnosed and fielded questions regarding my experiences. I am on the same panel again this year, but have been low key about it. I view it as an opportunity to educate people and open minds.

Despite my participation in these groups, I would be very careful who you disclose to and how you disclose.

 

[Aleksandra]

I’ve always had a really hard time in socializing with people, except for one or two close friends. I’m bad at making eye contact, I can’t focus in groups or loud places, like restaurants, and I don’t know how to keep a conversation if it’s about a subject I don’t know anything about. All the typical signs of Asperger’s. I feel that people avoid me because they think I’m rude or judgemental, but that’s not my intention. I also have social anxiety from past experiences. I’ve had multiple people criticize me for being ‘too quiet’, or others saying that I talk to much. I don’t hold it against them, but they tend to avoid me at all costs.

Lately I’ve been trying to work up the courage to be open about it, but I’m worried that because I don’t have an official diagnosis, they won’t take it seriously. I took an online RAADS-R test, and scored a 195 on it. I wanted to look into getting diagnosed, but with the COVID-19 pandemic, that’s not something I’m gonna focus on right now. I also know that it can be difficult and expensive to get an official diagnosis.

I’m just wondering if I should let people know, without a diagnosis, so that they don’t think I’m just being rude or cold? Or should I keep it to myself and just try to improve my social skills on my own?

I'm not sure if my NT experience will help you, but here's what I think. I am quite certain that my bf is on the spectrum and it looks like it is the mild version of it. We've been seeing each other for 18 months now and since we don't live together (we don't even live in the same country) it's hard for us to get to know each other thoroughly. We meet a few times a year, for a few weeks at a time. We are not the same nationality and English is a second language for me. Since there is a cultural diffrence element between us I wasn't able to detect right away all the seemingly "strange" behaviors of my boyfriend. There were times when I thought he was being rude, inconsiderate, selfish or simply stupid (sorry). At the same time I KNEW he was smart, intelligent and I FELT he was crazy about me. I never doubted his strong feelings for me, which made things even more difficult to understand. He'd do or say something that would leave my hurt, shocked or totally baffled. At the same time I never felt he was trying to hurt me. It simply didn't add up. We spent three weeks together and went on a foreign trip. We had wonderful time and two major fallouts that didn't make any sense to me. We managed to talk it through and made up quickly, but his (over)reactions remained very mysterious to me. I started thinking. As everyone, I had heard of autism and Asperger's, but sadly only in the context of shallow stereoptypes. I never knew anyone on the spectrum before. My first thought was my bf was a sociopath... I did some reading and quickly came to conclusion I was being silly. Then I decided he was "normal" and maybe it was me and my notions of him that made him seem "weird". But then he would do or say things that were tottaly confusing again and at that point I was sure there was SOMETHING different about him. Being apart, communcating only via texts and phonecalls gave me time and space to think, analyze and research, without confronting and acting too hastily. I cannot be certain if he is on the spectrum and if he is I don't know whether he knows. I'm not going to talk to him about it unless he brings it up and unless he wants to talk about it. What I want to say is, getting to know the truth (I think?) and the realization of the facts provided me with both comfort and relief. Not only didn't it change my feelings for my bf, but in some way made me feel more attached to him. I don't know what's going to happen to us in the future (nobody knows) but I do believe we have a future together. From a perspective, I'm afraid if he had told me in the beginning of our realtionship that he had Asperger's syndrome I'm pretty sure I would have been put off somehow. Why? I heard of autism and Asperger's before, but not enough to consider it just another way of "being". I'm afraid I wouldn't have given us enough time to get to know each other better. And now, seeing what kind of beautiful human being he is (another topic) I am grateful for what life has offered me. I also know I'm ready today for him being open with me and discussing things. As I said it the beginning I cannot be 100% positive he is on the spectrum and if he is - whether he knows it or not and even if he does - if he will choose to tell me, but it's another topic.
I hope this helps a litlle bit...

 

[SliverOfSand]

I'm not sure if my NT experience will help you, but here's what I think. I am quite certain that my bf is on the spectrum and it looks like it is the mild version of it. We've been seeing each other for 18 months now and since we don't live together (we don't even live in the same country) it's hard for us to get to know each other thoroughly. We meet a few times a year, for a few weeks at a time. We are not the same nationality and English is a second language for me. Since there is a cultural diffrence element between us I wasn't able to detect right away all the seemingly "strange" behaviors of my boyfriend. There were times when I thought he was being rude, inconsiderate, selfish or simply stupid (sorry). At the same time I KNEW he was smart, intelligent and I FELT he was crazy about me. I never doubted his strong feelings for me, which made things even more difficult to understand. He'd do or say something that would leave my hurt, shocked or totally baffled. At the same time I never felt he was trying to hurt me. It simply didn't add up. We spent three weeks together and went on a foreign trip. We had wonderful time and two major fallouts that didn't make any sense to me. We managed to talk it through and made up quickly, but his (over)reactions remained very mysterious to me. I started thinking. As everyone, I had heard of autism and Asperger's, but sadly only in the context of shallow stereoptypes. I never knew anyone on the spectrum before. My first thought was my bf was a sociopath... I did some reading and quickly came to conclusion I was being silly. Then I decided he was "normal" and maybe it was me and my notions of him that made him seem "weird". But then he would do or say things that were tottaly confusing again and at that point I was sure there was SOMETHING different about him. Being apart, communcating only via texts and phonecalls gave me time and space to think, analyze and research, without confronting and acting too hastily. I cannot be certain if he is on the spectrum and if he is I don't know whether he knows. I'm not going to talk to him about it unless he brings it up and unless he wants to talk about it. What I want to say is, getting to know the truth (I think?) and the realization of the facts provided me with both comfort and relief. Not only didn't it change my feelings for my bf, but in some way made me feel more attached to him. I don't know what's going to happen to us in the future (nobody knows) but I do believe we have a future together. From a perspective, I'm afraid if he had told me in the beginning of our realtionship that he had Asperger's syndrome I'm pretty sure I would have been put off somehow. Why? I heard of autism and Asperger's before, but not enough to consider it just another way of "being". I'm afraid I wouldn't have given us enough time to get to know each other better. And now, seeing what kind of beautiful human being he is (another topic) I am grateful for what life has offered me. I also know I'm ready today for him being open with me and discussing things. As I said it the beginning I cannot be 100% positive he is on the spectrum and if he is - whether he knows it or not and even if he does - if he will choose to tell me, but it's another topic.
I hope this helps a litlle bit...

Thanks for your story! It really helps to see things from another person’s perspective. It’s really nice to hear that finding out gave you relief, and that your view didn’t change in a negative way. I feel like telling people could provide an explanation about my behaviours. But I’m worried that most people won’t understand, and just shun me more. It is nice to know that there are people like you who can accept it, and use it as a positive.

 

[Yeshuasdaughter]

I'd say keep it to yourself until you know someone for a few years. People assume you're crazy and weird once you tell them. Sometimes even medical professionals.

 

[Chris34]

In my opinion, it is not something many people know about, ergo they might not know what to say or do or just be uncomfortable. This happened to me once, I got my diagnosis and was about 3 months with it in secret, a friend of mine saw me going to the psychiatrist office (because it was located inside a buiding with different doctors and physicians). She asked what I was doing there, since I trusted her I told her about my Asperger's, she didn't know what was it. After that she told me she read about it and found it interesting, and started asking me very intimate and hard questions. It was a bad moment.

I would say that if you want to share it, do it with someone who is very close to you. My girlfriend knows aboout it, but I only told her like after 6 months into dating and 2 years of knowing each other. She has been very supportive and tries to help me with my social skills.

 

[menander]

I regret ever telling. I feel like I gave people closure on why I am the why I am without any reciprocal action. I spilled it out only to have other people kind of nod like, "Knew it." Then, because of it they were not obliged to let me know anything about them at all. It also tips the power scale. People size one another up. Who is the one with even the slightest bit more measure of power? Not me once I tell. Not me anyway. I used to think people would understand if they knew, but it's been a while and I can say, from my experience, most people no longer think this is a the "Mysterious Genius" disorder. Now it's actually used as a form of contempt in some circles. Yes, if you are telling someone with a few Phds and is very advanced morally and intellectually so they FULLY understand what the spectrum is, but most people really, really don't. I could be wrong.

 

[Alexej]

..forums where you must use your real name (like Facebook). ...

Must I use my real name on Facebook - I think not. I have been thee for several years with a nom de plume (or nom de guerre - which seems to be the right phrase in French). However, I am not linking with my real family or friends via this social media platform.

 

[Crossbreed]

Must I use my real name on Facebook - I think not. I have been thee for several years with a nom de plume (or nom de guerre - which seems to be the right phrase in French).

I have three such accounts. (I think that one is frozen for non-compliance.)

Besides nom de plume & nom de guerre,* there is nom de paix [peace name].

Crossbreed is my nom de paix.

*"Nom de guerre" is not only used for war, it can be used for friendly competition, too, like sports.

 

[Mush]

Since my formal diagnosis, I have told only one of my sisters, and only two of my friends. Those friends in particular have a special ability to see people and had already figured out I wasn’t quite neuro-typical.

It was in fact a situation that happened with the wife of this couple that caused me to get tested. This was after a client I had (psychologist) suggested I get tested after talking with her for just 10 minutes.

There are certainly a lot of people I will not be telling. People will often treat you differently when they find out someone they know is different to what they had imagined them to be.

Kinda like when someone gets cancer and all of a sudden everyone treats them like they’re made of glass.

 

[ExplosiveTMT]

I think for me it's like, well screw it...if people are gonna stereotype me they'd probably also stereotype me for something else that isn't related to autism...like the fact I and my family is maori, or that I have had depression in the past, or that i'm a Gamer...or some other stuff. They'd also probably be likely doin that with other people too. That being said, I only really tell people who need to know about asperger's...I'm not keeping it secret or anything, it's just it makes for a lonng story I'd rather not delve into unless it's something i'm interested in doing. Being stereotyped used to be a worry of mine (which was in part related to my severe anxiety). But i've come to accept that I'm not the issue. I can't change what is written down on medical records. So it's not an issue of mine, it's an issue of other people being ignorant. If it's an individual doin it, I might go to my mum to ask her how to word it in a way that isn't overly harsh, but I'll call them out on it. If it's outright discrimination that's preventing me from doing a job (if i decide to get a job) or something else like a course, basically people bein pricks and not letting me do what i signed up to do, there are avenues of filing reports on these people or speaking up.