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AngelL
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23 Jan 2022, 2:03 pm

I kind of feel like I should offer a trigger warning here although I haven’t got the faintest idea what to attribute it to.

For those who don’t know, I was first diagnosed three months ago at 56 years old. Since then, most of my journey has been focused on just a few aspects of the intersection between my life and autism. Specifically, I’ve been focusing on learning how I mask so I can stop doing so habitually. Too, I’ve been learning how to care for my needs now that I’ve realized that ‘learning how to behave like everyone else’ isn’t a healthy option because I’m not like everyone else. I had an experience yesterday that revealed some hidden concerns I have about doing so. That’s what I want to talk about and the reason I suggested this thread might need a trigger warning. These concerns were hidden for a reason – and you might not want to see them for the same reason I kept them hidden from me.

I was invited to a disability group attached to the place where I meet daily for morning meditation. I’ve been going for a couple of months now. This group has a variety of qualifying disabilities but in addition, we are all neuro-diverse. I began yesterday’s group by telling another member that I had a question for them and if it was a good time to ask them. Before I even got all that out, they left the zoom platform suddenly. I, and the other members, determined that they must have lost connection. That wasn’t the case. When they returned ten minutes later, they explained that I came off so aggressive that I scared them complete with a tutorial on pressurized speech. I found it noteworthy that during those ten minutes they were gone, no one else guessed that was the reason. We’ve gotten to the reason for this post…

I am fifty-six years old and have NEVER been told that my speech comes off aggressive before. In fact, the day before, in another meeting that I’ve attended nearly daily for at least six months, I was told almost the exact opposite. Someone mentioned that they could listen to me reading the phone book all day because they found the sound of my voice that calming. Immediately, three or four of the attendees voiced their agreement. Incidentally, that’s not a disability group. My fears are that in learning how to accept the autism, applying appropriate self-care, being gentler with myself, and stop pushing myself so hard – that I’ll start running from rooms, jobs, stores, etc., because I everything is just too much for me anymore. The fear that being sensitive to my own needs will make me too sensitive to navigate the world without requiring an accommodation from everyone in order for me to operate within it.

Is anyone willing to speak to that, please?

And, by the way, I don’t want anyone to be afraid of me. To that end, I feel backed into a corner where my only two options are to mask/control my presentation when I’m in the disability group – or to stop going. If I stop going, the pressure to rejoin will be significant and frankly, I’ll probably just stop associating with the parent organization as well. The other alternative though, to exert enough control so that on their worst day, the most sensitive member might feel threatened by a butterfly but they won’t feel threatened by me – is a lot of effort and the cost is too high for the benefit.

I’d invite anyone to speak to this as well.



mohsart
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24 Jan 2022, 3:01 am

I can relate a bit, I think.
I feel that my behaviour has changed a little since my diagnosis, or since a bit before it. I'm still trying to figure out if and when, and why, I'm masking.

Some people dislike me, but most don't.
Nobody has ever showed any signs of being afraid of me, except for one woman at work who suddenly started avoiding me a bit over a year ago.
My mentor, who is probably on the spectrum, has told me about this one person he worked with who was afraid of him, he just couldn't understand it "I'm the friendliest person on earth!" and I think the same way about myself. I can honesly say that I have never intentionally hurt another human being in any way.
One thing I used to do was flee situations that in some way were uncomfortable, usually when I messed up in some way, instead of dealing with the situation.

/Mats


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AngelL
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24 Jan 2022, 8:07 am

mohsart wrote:
I can relate a bit, I think.


Sorry you're going through this awkward stage too, but it is nice to know I'm not alone.

mohsart wrote:
One thing I used to do was flee situations that in some way were uncomfortable, usually when I messed up in some way, instead of dealing with the situation.

/Mats


And herein lies the problem. Honestly, the only issue holding me back from 'dealing with it' is that I've got no idea what that looks like. Well, that and the sense that trying to do this without having a clue how is about as good an idea as jumping in an FA-18 fighter jet to take it for a spin when you don't know how to fly. What could go wrong? Like I said above - the only solution I have for 'dealing with it' is to mask so heavily that attendance in the group not only stops having any benefit - but attending becomes a net loss. If I had another solution for dealing with it, I certainly would consider it seriously.



Mona Pereth
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28 Jan 2022, 6:32 am

AngelL wrote:
When they returned ten minutes later, they explained that I came off so aggressive that I scared them complete with a tutorial on pressurized speech. I found it noteworthy that during those ten minutes they were gone, no one else guessed that was the reason.

I would suggest trying to resolve the issue with the specific person who complained, perhaps with the help of a third-party mediator if anyone in the group (e.g. the leader/facilitator) is willing to play that role. Also I would suggest that you try to resolve this matter through private communication, outside the meeting.

See if you can nail down EXACTLY what that person's problem with you is. "Aggressive" is a very general, vague label. There might be just one specific behavior of yours that is rubbing them the wrong way for some specific idiosyncratic reason. (Like, who knows, maybe something you said or did reminded them of someone who abused them? Or perhaps the specific question you asked, or at least the beginning thereof, made that person feel put-on-the-spot?)

You shouldn't have to be generally inhibited with everyone in the group, but maybe there is some specific relatively minor thing you can do, or refrain from doing, to help this specific person feel more comfortable?

Misunderstandings happen. Hopefully the group leader/facilitator and most of the members accept this as a fact of life and are committed to conflict resolution?


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AngelL
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28 Jan 2022, 8:50 pm

Mona Pereth wrote:
I would suggest trying to resolve the issue with the specific person who complained, perhaps with the help of a third-party mediator if anyone in the group (e.g. the leader/facilitator) is willing to play that role. Also I would suggest that you try to resolve this matter through private communication, outside the meeting.
You shouldn't have to be generally inhibited with everyone in the group, but maybe there is some specific relatively minor thing you can do, or refrain from doing, to help this specific person feel more comfortable?

Misunderstandings happen. Hopefully the group leader/facilitator and most of the members accept this as a fact of life and are committed to conflict resolution?


There is no group leader. I assume the organization just assumed we wouldn't require one. My 'normal' consists of painful levels of hyper-alertness driven by complex PTSD that occurred before the combat PTSD. I'm working on it, and I'm actually making progress that I'm actually, genuinely proud of myself. That in itself. But this? This is next level. Can you imagine if I return, that the memory of the part I played in her running out of the room - Can you imagine that NOT adding to my hyper-alertness? I just can't see value in returning.

I just sat here, like I often do, and contemplated what I just wrote before I hit send. I thought of something new. I don't know what 'to resolve' this would look like. Actually, I'm not sure what 'to resolve anything' looks like. In the past, I've listened to whatever rational they use to explain why they did whatever they did. I say, "Terribly sorry, won't happen again." And it doesn't. But I've spent a lifetime on the road averaging 17.7 days in one spot before moving on. Even if the other person was egregiously wrong, or their demands completely ludicrous, I'm leaving in a few days. "Terribly sorry, won't happen again" was simply expedient. I'd probably be gone before 'it' happened again, anyway. That's how I 'resolved' things. Yes, I know I didn't resolve anything but it wasn't worth the investment to actually do the work of resolving it - cause I wouldn't be around to enjoy the fruits of my labor.



blitzkrieg
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28 Jan 2022, 11:04 pm

I think sensitivity is important.

I have always been super duper Autistic in terms of bluntness. Like, Autistic to the nth degree.

But, I deliver my bluntness in a very calm, soothing way, in person or online, usually & so this confuses people.

The truth is, I cannot be me if I am not being blunt, i.e, not being blunt is me pretending not to be Autistic and then I wouldn't be true to myself - something I cannot live with, personally.

Why would I want to pretend to be someone who I am not, around other Autistic folk? The whole point of disability groups is being accepted for who you are.

If disabled folk are too ignorant to accept you, then that is on them.



Mona Pereth
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29 Jan 2022, 1:08 am

AngelL wrote:
There is no group leader. I assume the organization just assumed we wouldn't require one.

That's odd. Who hosted the Zoom chat, then?

AngelL wrote:
I don't know what 'to resolve' this would look like. Actually, I'm not sure what 'to resolve anything' looks like.

Perhaps this list of articles on conflict resolution might help?


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AngelL
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29 Jan 2022, 11:10 am

Mona Pereth wrote:
AngelL wrote:
There is no group leader. I assume the organization just assumed we wouldn't require one.

That's odd. Who hosted the Zoom chat, then?


I'm not sure what seems odd here so it's difficult for me to get to the heart of your question. The answer to your question is 'no one' but I can't determine why you find that so odd. If I were to go to coffee with three peers, we wouldn't need to establish who the host or leader of the gathering would be. We meet in the Center's Zoom room - the same one we use for morning meditation. Each of us has the log in details (or else we couldn't attend morning meditation) and so we simply log into the room.

AngelL wrote:
I don't know what 'to resolve' this would look like. Actually, I'm not sure what 'to resolve anything' looks like.

Perhaps this list of articles on conflict resolution might help?[/quote]

Thanks for this although I'm really not sure how this could work. I'm quite sure they work for others but very little of what I read makes any kind of practical sense to me. Though each had variations, all of them had certain things in common. For instance, 'Look for solutions that benefit everyone'. I can't even imagine a solution that would benefit me which makes advocating for myself pretty tough. If the tone of my voice scares her then the options under my control are that I could:

a) Change the modulation of my voice.
b) Not talk. This could be accomplished by remaining mute or simply not attending.
c) Not take responsibility for her discomfort and let her work it out for herself.

When she came back into the room she lectured me on pressurized speech with help from each of the other participants in the room who shared everything they knew about the topic. I sat and listened until they were done. Incidentally, the other participants were helping her explain her point - not making the point themselves. Then, I expressed my concern for her discomfort along with my sincere desire that this doesn't occur again. I don't believe my tone needs adjusting; she does. She's entitled to her opinion - I just don't know what I'm supposed to do with it.



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29 Jan 2022, 8:44 pm

AngelL wrote:
Mona Pereth wrote:
AngelL wrote:
There is no group leader. I assume the organization just assumed we wouldn't require one.

That's odd. Who hosted the Zoom chat, then?


I'm not sure what seems odd here so it's difficult for me to get to the heart of your question. The answer to your question is 'no one' but I can't determine why you find that so odd. If I were to go to coffee with three peers, we wouldn't need to establish who the host or leader of the gathering would be. We meet in the Center's Zoom room - the same one we use for morning meditation. Each of us has the log in details (or else we couldn't attend morning meditation) and so we simply log into the room.

But the group in question here isn't just 3 or 4 friends who already know each other well. This is a group with random new people dropping in. Seems to me a leader/facilitator, or better yet a pair of leaders/facilitators, or perhaps even a welcoming committee, or something along these lines, is clearly needed, to help the newcomers become part of the group.

AngelL wrote:
Mona Pereth wrote:
AngelL wrote:
I don't know what 'to resolve' this would look like. Actually, I'm not sure what 'to resolve anything' looks like.

Perhaps this list of articles on conflict resolution might help?


Thanks for this although I'm really not sure how this could work. I'm quite sure they work for others but very little of what I read makes any kind of practical sense to me. Though each had variations, all of them had certain things in common. For instance, 'Look for solutions that benefit everyone'. I can't even imagine a solution that would benefit me which makes advocating for myself pretty tough. If the tone of my voice scares her then the options under my control are that I could:

a) Change the modulation of my voice.
b) Not talk. This could be accomplished by remaining mute or simply not attending.
c) Not take responsibility for her discomfort and let her work it out for herself.

Another possible solution: split the group. Have one group that is limited to people with "quiet, gentle voices" (or whatever term fits best here), and another group that welcomes people with all kinds of voices. Some people would be able to attend both groups, while others would be able to attend just one.

Looks to me like we may have a case of conflicting access needs. If I understand correctly, you're now at a point in your life where you specifically need to NOT be doing things like trying to adjust your voice for other people's comfort.

Hopefully there is someone at the center to whom you can suggest the idea of having two disability support groups, to accommodate conflicting access needs.

AngelL wrote:
When she came back into the room she lectured me on pressurized speech with help from each of the other participants in the room who shared everything they knew about the topic.

What is her problem, exactly? Is it a sensory issue (e.g. sensitivity to loud noises, perhaps even hyperacusis, which is common among autistic people)? Perhaps the sound of what she calls a "pressurized voice" is literally painful to her?

Or perhaps her problem might be an attention/memory issue? Perhaps she is unable to follow too-rapid speech? This too is a problem for some autistic people.

Or is the problem something else, like does your voice evoke traumatic memories for her?

If it's a sensory issue, this isn't a new problem in autistic/neurodivergent support groups. Some of us are very sensitive to loud noises, while others have naturally loud voices. The two can't easily co-exist in the same in-person group (or the same audio/video conference).

Ditto for conflicting attention issues and/or trauma issues.

Back to the group you're concerned about. How many people were in the group? I'm wondering if the group is big enough to make a second group feasible.

AngelL wrote:
I sat and listened until they were done. Incidentally, the other participants were helping her explain her point - not making the point themselves. Then, I expressed my concern for her discomfort along with my sincere desire that this doesn't occur again. I don't believe my tone needs adjusting; she does. She's entitled to her opinion - I just don't know what I'm supposed to do with it.

I suspect that what she has is more than just an "opinion." Most likely it's a genuine personal need, albeit a need specific to her. It just happens to conflict with your needs.


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AngelL
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30 Jan 2022, 10:05 am

The group is only four people at this point and all of us where present for the inaugural meeting a couple/three months ago. There's certainly not enough of us to start two groups though I can see why you suggested it.

AngelL wrote:
I began yesterday’s group by telling another member that I had a question for them and if it was a good time to ask them. Before I even got all that out, they left the zoom platform suddenly.


I quoted this because it may have been helpful if I had expounded on this a bit. Normally, I wouldn't have asked her if it was a good time to ask her a question - I would have just asked. The reason that I asked this time is because, in the minute or so we had been there, she seemed incredibly scattered and anxious. We hadn't been in the room long enough for me to determine if this was an excited anxious or a fear-based anxious but it was clear to me that somethingwas going on with her. The other two people in the room know her much better than I as they game together regularly - and as I said, they didn't have a clue what sent her out of the room until she came back and said something. I am confident that she was in a place where a kitten's meow could have had her running out of the room. But! That doesn't mean I'm not going to be even more hyper-vigilant if I were to return.

Mona Pereth wrote:
Looks to me like we may have a case of conflicting access needs. If I understand correctly, you're now at a point in your life where you specifically need to NOT be doing things like trying to adjust your voice for other people's comfort.


You understand correctly, yes.



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30 Jan 2022, 9:35 pm

AngelL wrote:
The group is only four people at this point and all of us where present for the inaugural meeting a couple/three months ago.

Did the person in question seem to have any problems with you at the inaugural meeting?

AngelL wrote:
Normally, I wouldn't have asked her if it was a good time to ask her a question - I would have just asked. The reason that I asked this time is because, in the minute or so we had been there, she seemed incredibly scattered and anxious. We hadn't been in the room long enough for me to determine if this was an excited anxious or a fear-based anxious but it was clear to me that somethingwas going on with her. The other two people in the room know her much better than I as they game together regularly - and as I said, they didn't have a clue what sent her out of the room until she came back and said something. I am confident that she was in a place where a kitten's meow could have had her running out of the room.

Thanks for the additional context, which changes my impression of what's going on.

Are you in touch with her two friends in any context outside of this meeting? If so, perhaps you could ask them how she's doing, and their impressions as to whether her reaction to your manner of speech will be an ongoing issue or was just a temporary manifestation of an immediate crisis?


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