Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Tuesday, November 5, 2013

My Memories of the Autreat Mess

Trigger Warning: I'm gonna go with gaslighting and access fails?

I'm doing it. I'm writing up my memory of the Autreat debacle. There's an official report on the ANI Facebook, which I can't link properly because of fun with my proxy and the Chinese internet. I'm bystander 2 in that, which is totally inaccurate but hey.
Heads up that K is Neurodivergent K of Radical Neurodivergence Speaking, since I know her blog URL here's that, as of this writing her write-up is in seven parts and the most recent stuff pile on her blog.

So here's my memory. Some of this is before Autreat.

I had K's thing about what to do if she's having a seizure. It's very much written in K's style, which is fine by me, I understand it fine. One of the things that stood out was that if she's having a seizure, people need to back off. Unless there's a reason that she must be touched, like about to walk into traffic, or if she's still in the room with the trigger, hands off, and if must move, slowly, carefully, calmly. Which means keep security, etc, off K's case in emergencies. We established that I would be a person who helped run interference in emergencies, keeping people away from K. That's background.

Now flash forward to Autreat, in the room where the incident began. Stuff is a bit fuzzy, because that happens when I'm overloaded, and also this was a while ago. I remember a not-particularly-coherent K sounding scared when there was a bass sound, and I remember her trying to get at medicine of some sort, and I remember her hands going over her ears. I remember someone going over to the TV to turn it down, and I remember that person getting yelled at. I also remember a lot of yelling happening after that. The first yelling was definitely the person being upset about the TV being turned down because of her daughter. I can say that much. Order gets a bit fuzzy. Speaking isn't a thing that was happening much for me, again, happens under stress. Pretty sure K was out of the room by the time a sarcastic comment was made by Shaun of “because autism means we can only care about ourselves,” which got responded to with “Exactly.” Not with a thing about etymology. Just agreement. At which point there was a question of, “If you think that, why are you here?” Again, not a statement. A question. Considering the statement that was just made and what Autreat is supposed to be about, a pretty reasonable question.

When K did the whole leaving the room thing, the person who yelled about the TV being turned down at least started standing up. So I was pretty sure that this was a move to follow. So I put myself such that to get from sitting on the couch to the door, she'd have to go through me. Not attacking her, which is probably why I got called a bystander and not a support person, even though I was doing exactly the support job that I was supposed to be doing, but hey. It also might have something to do with my never having yelled directly at this person, which shouldn't be a defining factor of who is and isn't a support person for K. Really shouldn't. Those are guesses for why I might have gotten called bystander 2 in the official report, but I'm not actually sure. Not a mind reader, can't know. What I know is that it's not accurate.

Yelling yelling yelling, couch person yes acting like she might be triggered, bystander in the kitchen area acting possibly triggered and I think saying openly that she was, and me being a bit confused because why would someone who has their PTSD triggered by yelling be the one to start the yelling? I mean, people getting angry and forgetting stuff like their own limits happens, yes, but it's still a little confusing to watch a person do that.

Eventually leave kitchen and I forget what.

Eventually text from friend of K using K's phone (I know this because I just checked my phone text history.) Go find K, who I think is in common area of her floor crying at this point? Help acquire food for her and also acquire own food, per request of K's friend. Food important. People coming, people going. Time passing. Meeting. Lots of yelling about not assigning intentions. Sometimes this happened after person repeating intentions that person doing action had actually stated, which isn't actually assigning intentions. It's taking word on intentions. Lots of suggesting that thing is about use of common space. Which yes, is problem, but big problem is about how to handle access violations once they come up. [And seriously what is with refusal to accept that TV is a want and not a need? I do not understand, but as I'm not a mind-reader I'm not going to understand. But yes, that was one of the things that we weren't allowed to say, that TV is a want and not a need. Also question about adult daughter's agency, which, um, no one's talking about what she did because she didn't do the things that were problems?]

Lots of confused. Lot's of K crying. Lots of “NO DON'T REDUCE THIS TO USE OF COMMON AREAS.” Because yeah, that's a thing. But there's a lot more than use of common areas. Use of common areas could have prevented the thing, but this was about how to handle access issues once they happened, I think. And went badly.

Lots of discussion of how triggered person who yelled about the TV being turned down was. Not so much about how K could easily have wound up in the ER, and how “you're not going to die” is a thing that was said to a person who's been clinically dead from seizures before. Suggestions that statement of daughter having seizures was meant as understanding the problem. Given demonstration of not understanding (see also: you're not going to die,) would be a false demonstration if so. Again, not mind reader, but is pretty clear that telling a person with epilepsy who has been clinically dead of seizure before that they're not going to die indicates a lack of understanding.

Um. More discussion. Goes to very late. Not good- lack of sleep can make epilepsy stuff worse, I remember this from another time I was with K.

Morning. I see text from K, and respond assuming that I missed a text from last night. Nope. Is text from this morning. K crying, not sure she feels safe to leave room to come meet with me and another person related to a meetingful thing I don't even remember properly. I know there was supposed to be a meeting because text records, and also that K says she is feeling gaslit. I think I help acquire the soggy breakfast for K before spending much of morning in K's room, but am not sure 100%. I know I got to attempt eating said soggy not that great breakfast, and yeah, it was soggy before the rain got on it too. That day was not a good breakfast.

Spend morning with K. Lots of crying happening, decent bit of K hitting head against wall and saying she wanted to go home and being triggered and being in meltdown. I admit that I am impressed with her ability to maintain crying that long, as I become exhausted much faster than that. I also try to be comforting. I don't think it worked very well. Apparently my saying that I'd understand if she left and couldn't be my first witness made her feel really bad about maybe not being able to do it. My understanding was a sign of my being a decent enough person for her to care, or something similar. My memory is a bit foggy, but it was something along those lines, and this is her having said something of the sort, not me mind-reading it. Also, there was wailing of “I don't know.” There was a lot of that. And being afraid to leave room unless it was to go to the airport and get on a plane home.

Go acquire food for people- I am in the Subway contingent that acquires food for many room people. I think we got a total of 4 sandwiches, including mine an Ks and also one for the person who was driving. One other, and yes, I know who, but don't know if she's cool with name reveal so I won't.

Eventually there is a Jim. Who isn't going to apologize for the gaslightyness, or for much of anything if I understand correctly. Which, hey, at least honest, since fake apology is bad and K's pretty clear about not wanting those. But also suggests not understanding what went wrong. I wasn't processing in real time for this, and the only person who was, Jim said either that person or Jim had to leave. After wailing “I don't know” from K multiple times, another person suggests maybe that person leaves. I will take K's word for it that the kicked out person's name is Shaun, and that this person is cool with name being open. Shaun looks at K, asks “Is this what you want.” K wails “I don't know” yet again. There has been a lot of wailing of “I don't know” this morning and into afternoon. Starting to wonder if there are any other phrases K can currently access, at this point. Which is bad sign. Focus is very much on “there are number of people waiting for presentation” and not so much on “how to we make K feel safe.” That's not a good sign. K moves from wailing to moving really fast, but since I'm not processing in real time I don't quite get what's going on.

Go to presentation room with K. K gives presentation. It is very good. Apparently this is because K's autopilot is very well-tuned. That good of an auto-pilot does not happen for good reasons. Text record suggests that swimming happened in between presentation- for sure that I did that, possibly K too, but I don't remember if she did or not. I shower, brush hair, go to K's room and K fancy-braids my hair.

Nothing bad particularly happens at 5A, though I was only semi-coherent for it. Usually I can make words off the cuff pretty well, but not then. So I was left with not the words I was was expecting to have.

I spent sufficiently much time in K's room instead of mine helping her try to feel even a little bit safer during Autreat that all my chargers were in her room instead of mine. I think that should say something.

1 comment:

  1. In 2020 hindsight, I should never have gone to Autreat that year, and been Sara Willig's "taxi" to/from AUTREAT.
    I apologize for anything I have done.
    Tom Wood,
    Board of Directors, ABLE-NH


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