this post was submitted on 20 Aug 2024
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Am I crazy to assume that, if I tell one person but don't specify any particular privacy settings, they would leave it to me to decide when I disclose it to others?

I guess I should get specific here. I was officially diagnosed a couple of weeks ago, as having autism spectrum disorder level 1. I have so far only told my mom, who I live with, and my best friend, who I suspect is also autistic. Today, I overheard my mom talking loudly on a video call to my brother and his wife, catching up and sharing their latest news. Apparently her latest news included the fact that I have been diagnosed with ASD. I hadn't yet decided how to go about having that conversation with my brother, and now I'm pretty upset that I don't get to make that decision. While I'm venting, she also mentioned that I've been less conversational lately, which she attributes to my diagnosis and to me no longer wanting to make the effort necessary to talk to neurotypical people (in reality, my chronic fatigue has been playing up lately, which always leaves me with less energy for conversation - she knows my chronic fatigue has been playing up lately, but apparently thinks I'm just choosing not to bother).

Am I crazy to think she was way out of line to share my diagnosis with someone without running it by me?

I'm also not sure how to move forward with this information in any way without it seeming like I was eavesdropping - which I wasn't intentionally doing, she was in the living room / kitchen area, I was heading down there to make myself a cup of tea (which I do every night at that time, in the room that she was talking in) and froze halfway down the hallway when I heard her sharing my confidential information. I didn't know how to deal with the situation so I just stood there for a bit and then returned to my room without making the cup of tea. If she had directly told me that she had told my brother about my diagnosis, or that she was bothered by me being less conversational, it would give me an opportunity to provide input on these matters, but as it is I don't feel comfortable raising the subject, or noticeably increasing my level of masking (to accomodate her apparent discomfort with me not doing so), without the eavesdropping issue potentially becoming part of the conversation and complicating matters.

I'm also bothered because I have a tradition of once a year going to stay with my best friend for a while, and typically stop off with my brother for a few days when I pass through his city. Last year unexpected travel complications left me burnt out, so when I made the bookings a couple of months back for this year's trip, I made it as simple as possible, including skipping the stay with my brother. I haven't yet told him, and now I'm worried that he's going to take it as me no longer socializing with neurotypical family members (even though the arrangement was made before my diagnosis). The whole thing is complicated and no longer under my control because my mother decided to share my diagnosis and her thoughts about my behavior behind my back.

Anyway, I guess I'm venting, and looking for input on whether this is as infuriating as it seems, and maybe advice on how to approach the situation.

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[โ€“] [email protected] 8 points 2 months ago* (last edited 2 months ago) (1 children)

I'd like to echo everything Cagi said, and add that it's genuinely possible this conversation with your brother was more of a "they finally got the diagnosis," sort of conversation rather than a revelation for your brother, because everyone probably already suspected you have autism. It sounds like your mother is happy that you have clarity on this and wanted to share your good news.

If I tell my mother something, it's free game for her to tell anyone she knows about it, because she wants to tell other people what's happening with her children. If I don't want her sharing something about me, I could ask her explicitly not to share, and she won't.

Regarding your concern that your brother is going to think you're no longer socializing with neurotypical people, you're waaay overthinking that. You can call up your brother at any time to talk to him if you want to. Next time you want to go visit, almost guaranteed his door will be open for you and nothing will have changed.

[โ€“] [email protected] 5 points 2 months ago

That's fair, although the tone of the conversation definitely involved her being less happy with my behavior now than before the diagnosis (as I mentioned, she attributed my recent lack of conversational energy to the diagnosis). It felt like it was at worst "complaining" and at best "concerned", with "celebratory" not really being in the ballpark.

I guess from a combination of what I've read in the past about people struggling with autism disclosure, and the fact that my mom is a retired GP who should have a handle on how sensitive a diagnosis might be, led me to assume that it was understood to be a sensitive subject.

Anyway I guess I'll calmly broach the subject with her tomorrow, prefacing it with a mention of my usual tea-making habits, segueing into what I heard, then mentioning a) how I'd prefer to handle my own disclosure, b) that my conversational reticence is not a result of a newfound distaste for neurotypicals, and c) that maybe she should discuss that sort of thing with me instead of just guessing and then telling other people how I feel.