Have u regretted telling a close family member about ur AS?

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VictorOfAveyron
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11 Feb 2024, 1:06 pm

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I was just diagnosed with AS, and haven't told anyone IRL yet.
I've read about the "need-to-know-basis" a couple of times on this forum, and I think in general I agree with it. Under that principle, I should probably tell my mother. We haggle constantly, often due to misunderstandings, and we both suffer from it.
On the other hand, I have no trust in her. Very often I felt betrayed by her, especially during childhood. I have the concrete fear that she will not keep it between us and tell others (not sure why that would be bad necessarily, but the anxiety exists). Whenever I begged her to talk to me differently, for example telling me things in another way (e.g. specify what she wants me to do, rather than yapping for minutes about irrelevant stuff, you know) she'd always blame me *for being different*. She called someone else "stupid" for a certain autistic trait - which I share, and I think she didn't even realise. Admittedly, she is pretty slow on the uptake and rather unlettered, as well as believing in fake medicine and certain conspiracy theories.

So on the one hand, I have a hope that she can reflect on it and be a bit more accomodating.
On the other hand, I am afraid to make it worse, in part because she just won't get it.
Could I create more problems than I am trying to fix with me trying to explain AS to her?



Malus
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11 Feb 2024, 1:14 pm

I would recommend writing your thoughts and concerns in a letter. Cite specific examples, but don't blame her.
Rather than "you called me xyz" lead with " when I'm called xyz, it makes me feel...."

I agree with need-to-know, but if someone is specifically causing you emotional trauma because of how you're being treated, you need to confront it.



Double Retired
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11 Feb 2024, 1:52 pm

I suspect people who know you will be less surprised than you suspect if you tell them about your diagnosis.

I'm unclear on your approximate age. If you are well into adulthood and have established your situation in life then I think knowledge of the diagnosis, in most contexts, might just be trivia. If you are less established, however, then perhaps discretion would be advisable.

Disclaimer: I do not know what I am talking about here. I am speculating.


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Double Retired
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11 Feb 2024, 2:06 pm

Oh...an answer more to the point...

I delayed telling my immediate family until I could tell them in person. It was a waste of time. They already thought I was "weird". Their immediate reaction was to review their own neurocharacteristics to see if there might be a diagnosis for them lurking out there.

After that I shared the news with my extended family and they just thought it was interesting trivia.

Note: I've done reasonably well in life.


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VictorOfAveyron
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11 Feb 2024, 2:54 pm

Thank you for your answers.

Malus wrote:
if someone is specifically causing you emotional trauma because of how you're being treated, you need to confront it.
What do you mean by that? Right now, in the past, or in general? What does 'confronting it' mean here?

Double Retired wrote:
I suspect people who know you will be less surprised than you suspect if you tell them about your diagnosis.
Most people from my professional and academic life definitely fall under that. Need-to-know will be perfectly ok if and whenever that moment may come.

Double Retired wrote:
I'm unclear on your approximate age. If you are well into adulthood and have established your situation in life then I think knowledge of the diagnosis, in most contexts, might just be trivia.
I'm in my late 20s. I was doing ok, before moving back with my parents after a, let's say, miscalculation. I need help and support to get "back on track", but it's not something I am expecting from my mother. In a way, the question is if her knowledge can "fix" our relationship.

Double Retired wrote:
If you are less established, however, then perhaps discretion would be advisable.
By that you mean not telling her? What is the causational relation between the two?

Double Retired wrote:
I do not know what I am talking about here. I am speculating.
I appreciate your caution. Please don't hold back.



Double Retired
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11 Feb 2024, 3:29 pm

Your close family probably already thinks you are weird and knowledge of a diagnosis would just be trivia.

But folk who do not know you so well might judge you solely on the basis of the diagnosis. After you have built up some strong track record it should be easier to shoot down any false opinions people jump to.


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cyberdad
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11 Feb 2024, 3:32 pm

Doesn't this really depend on how you (or your child) appear/function?

In both my wife and my extended family (including close family) they generally don't care and treat my daughter the same as any one else. But unfortunately nephews and nieces my daughter's age run a mile when my daughter is around. Teenagers are very particular and despite my daughter trying to reach out, her myriad of cousins keep their distance and are visibly embarrassed.



CockneyRebel
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12 Feb 2024, 3:05 pm

I told my Nana when I was 15 and her response was, "You're just a little bit slow." I regretted it for years.


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DanielW
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12 Feb 2024, 3:35 pm

I don't disclose to many people, but no one I have told has ever tried to refute it. I guess they can just tell something is different about me. The usual sort of response I get is more like "oh, that explains it".



cyberdad
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12 Feb 2024, 4:00 pm

DanielW wrote:
I don't disclose to many people, but no one I have told has ever tried to refute it. I guess they can just tell something is different about me. The usual sort of response I get is more like "oh, that explains it".


You don't tell close family?



King Kat 1
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04 Apr 2024, 12:48 am

I'm estranged from my father's side of the family, so they don't know and no need for them. My Dad was in denial up until recently, My Mom and my Aunt have known it for a long time, in fact my Aunt was the first to point out at the one point that I likely had ASD. It's not really talked about, but I have noticed a couple of family members have gotten off ass about a couple of things, which is a relief.

Now, in my workplace, I wouldn't dream of saying anything as I am super private about my life outside of work, but I think a co-worker is on to me.


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IsabellaLinton
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04 Apr 2024, 3:00 am

I didn't tell my mother about it until a few years after I got diagnosed. Actually, my daughter told her because I go mute around my mother and can't speak two words to her without shutting down. My daughter said that she and I had both been diagnosed. My mother was aghast because she thinks autism = the "R" word. She denied quite vehemently that my daughter could be autistic. Then she looked at me lying on the floor playing with my hair during Christmas dinner and didn't defend me. She didn't say anything about me but the omission was glaring. The subtext was that she defended my daughter but didn't defend me, because I clearly looked the R-word. She used to call me that word when I was a child so she clearly thinks it now.

It's cool that she didn't try to say I wasn't autistic, but it wasn't very nice having her imply I was R-word, or having her defend how "normal" my daughter is but not me.

Then we told her that she's likely autistic too. She wanted a list of the descriptors so my daughter told her some verbally and she denied them all in herself (and my daughter, but didn't say a word about me despite the way she glared at me.)

The good news is that she's old enough to have early-stage dementia and she doesn't member the conversation. My daughter has told her a few times. She always says "You never told me that before!", and then proceeds to forget yet again.

Do I regret it? Not really, but it's mostly because she doesn't remember it anyway.


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ToughDiamond
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04 Apr 2024, 11:15 am

Family member or not, to me she doesn't sound a suitable receiver.

By the time I was diagnosed, the only close family member left was my sister. I told her and it did no good for a long time. All she said was "well, we're all a bit mad really aren't we?" She meant it as a reassurance but naturally I was a tad disappointed. I didn't challenge her and the subject went dormant. But later on her grandson was diagnosed with it, and she mentioned that, and has shown more interest in ASD ever since. She understands now that it's not a madness and that it runs in the family quite a lot.



ElmersTrueLove
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04 Apr 2024, 11:20 am

They don't believe me and see it as a label...


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