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.

To You, the Children

You're not wrong. You're not bad. You're different, and you're disabled, but you are not broken or wrong or less and you don't have to be indistinguishable from your peers. You can flap. You can rock. You can write or type instead of speaking, even if you can (usually, sometimes, with more effort than you ever dared admit) speak. You can even admit to how much effort it takes, to how slow speaking really is. And that's OK. Impairments are much less disabling when you accommodate for them, and you can't accommodate for something you can't admit you have. You can admit it. You can bring a pen and paper out with your friends, just in case. You can bring an iPad out with your friends, just in case. If they are really your friends, they will be fine with it. Curious, perhaps, maybe confused, but they won't make a fuss. Because you're just doing what you need to do in order to enjoy your time with them. 

There may be people who bully you, who make fun of you, who beat you up. They might call you horrible things (or things they think are horrible but really aren't if you think about it.) They might tell you it's because of the ways you are different. They are either confused or lying. The bullies who tell you that's why are probably lying. The adults who tell you that it's your fault and that it would stop if you just stopped acting so autistic are probably confused. That doesn't mean you need to be confused. It also doesn't mean that you have to act less autistic. Or that you can't act less autistic, if you think it is worth trying. It might even work, if you can stick out less. (I was never able to- I could get rid of a lot of the more obvious things, but I always stuck out as somehow different.) It might even be worth it, as long as you recognize it for what it is. (It's not you being weak, by the way. It's staying safe in whatever way you can. It's also doing something that you shouldn't have to do, because the way you are is not wrong.) 

The bullying isn't about the specific ways that you are different. It's about people going after anyone who doesn't fit and trying to make them fit, and it's about power, and it's about people who want to hurt others choosing victims they think they can blame for their own victimization. It's about patterns in society that need to be changed, but that doesn't mean you have to change them in elementary school or middle school or high school. (No arguments if you think you can, but you should know that the bullying will get worse before it gets better if you do it that way, and your teachers might well join the bullies rather than simply ignoring them if you try. I had teachers among my bullies.)

No. The important thing is that you know what it is really about. Biding your time until you have a chance to make the changes you want by being the wonderful person you are reasonably safely (never perfectly safe, but worth the risk) might not look much different than hiding because you think they're right and because you agree that you are broken, but it is different. It's very different.

This post has been added to the Down Wit Dat October 2014 Blog Hop.

Politics of Parent-Run Autism Groups

Even when all the parents running an autism group are good parents of autistic children, are good allies, there is still a very different feel to the group and a very different political structure when it is run by parents than when it is run by Autistic people. Autistic-run groups with parents in them run as Autistic groups, usually (sometimes the parents drag it more towards parent groups,) and parent-run groups with Autistic people in them run as parent groups (the Autistic people tend to get bullied, derailed, and silenced on the few threads they try to run Autistically.)

In an Autistic group, questions are more likely directed as "What worked for you?" as opposed to "What works?" or "What works for your child?" People seem more likely to be talking about stim toys. The focus is more on issues that Autistic adults face, since Autistic-run groups have mostly adults and some teens. Autistic-run groups also tend to have much lower opinions of, well, almost every autism therapy ever invented. Sometimes, the lowered opinion is the awareness that it can be done badly, depending on the goals of the therapy and who is choosing the goals. Sometimes, it is based in knowledge that the whole idea is fundamentally flawed, like for therapies that aim to teach communication or life skills but measure success by compliance.

In a parent-run group, no matter how many people in the group actually are Autistic, questions are usually directed at parents. When Autistic people speak up about their experience, while there are exceptions  there are four main categories of reaction:

1. We are Universal Translators - they assume that what we think might be going on is now exactly what is going on, even if it really isn't. This falls under "walking zoo exhibit", which is the one where people think our sole purpose is explaining our strangeness to the world, often to help translate their children's strangeness. We do have lives, and we are not the same people as your children. We have similar problems (often more similar than you realize, which leads into the next reaction.)
2. Not Like My Child. Basically, the fact that all they are seeing is our typing and the effects of having a much longer life in which to grow up and come up with coping mechanisms (and also the fact that some of us did not get put through the therapies that teach learned helplessness, meaning we are much more able to actually communicate what is going on and what is OK and what is not) comes through and hides the ways in which we are very much like their autistic children, or at least that we were. Autistic people grow up, and we're different as adults than we were as kids. The same holds true for all people, but it often needs to be restated with disabled people.
3. Don't Really Understand Autism because Autism Impairs Judgement. Autism experts do that one on a fairly regular basis. The autism expert from Ibby's Loud Hands Project essay (you should get the anthology if you can, by the way) did that. I thankfully haven't gotten much of this one, but it's a hard one to deal with. It's a catch-22, in many ways, in that people who do this one put every Autistic into either 2 or 3.
4. As If We Didn't Speak. Basically, they keep talking or chatting as if we never said anything. The reason can be 2 or 3, usually, but it's a method of ignoring what we say, of silencing us, and it is one of the hardest to get through to because they often won't even read what we write, simply skipping over it. 

All of these are forms of silencing, though the Universal Translator has usually struck me as the one where you have the most hope of getting education through and helping the kid. It might not do the parents much good, but I am often willing to settle for helping the kids, which I can sometimes do when seen as a Universal Translator. It still silences many of the things that need to be said, though.

It ignores the diversity among Autistic people, and it ignores the fact that we grow up to be more than just translators for the next generation. It ignores our outside lives. It is a form of silencing, and it is one of the more insidious, partially because of the fact that it it harder to see that it is silencing and partially because it is a half loaf that many of us will take in order to help the autistic kids who we are theoretically the translators for.

Those things don't happen so much when Autistic people are in charge. Parents may not be quite as comfortable, but this really isn't about the comfort of allies. Spaces where Autistic people are in charge are important, and spaces where parents are in charge can't be as safe for us. They can't teach parents as much either, but that's not entirely the point. (It's still important, though, because helping the parents understand better often means they can help their kids better.)

I updated this post a bit on January 24, 2014 (may vary by your time zone) and added it to the Down Wit Dat January T-21 Blog Hop. I'm not familiar with the way politics go in groups for other disabilities, but will entirely fail to be surprised if this applies to other disabilities as well.

I Love Being My Own Autistic Self

Trigger Warning: Discussions of presuming incompetence, preventing autistics

That's Landon Bryce of thAutcast's new book. I got it for Hanukkah, and it was even better than I expected it to be. That's saying a lot, since I like thAutcast, I liked what Autoons I'd seen before I got the book, and I read a lot of very good reviews before I got it. And no, he's not paying me to write this review or anything. It's just that good.
First things first: If you have ever, will ever, or may ever interact with someone autistic ever, go get the book:
E-book/Kindle
Paperback
Done that? Good.
So, this is why I thought it was really, really good- there were three autistic main characters, all different. One was non-speaking. None considered themselves tragedies. There was a friend, a sibling, and a doctor as well- the sibling "love[s] her brother, but hate[s] his autism," and the brother "love[s] his sister, but she hates a part of him." The autistic brother knew the kind of things his sister and the doctor talked about, and he was aware (and disapproving) of the fact that they didn't like it when he disagreed with them.
I had to try (and fail) not to cry as I read. I saw people assuming Marko (Marko is the sound that means me-me being the one who does not speak) could not understand because he could not speak, Marko thinking that he is still worth getting to know, and most people not understanding. The other autistic- I think it was Vector, though facial recognition=not so good, was still friends with him, and understood that friendship is important. Pang was sorry that about Vector being autistic, but Vector was not sorry. It's a common theme- people are sorry that we are autistic rather than taking the time to understand us. People assume we can not understand rather than taking the time to understand our communication. People assume they know better than we do what we want to be called. And the comeback when that came up! I swear, "You seem like a person with rudeness when you tell me what to call myself" is my new comeback to people who want me to use person-first. It was great. Things happened in this short book that reminded me of what really happens. It's a book that a child can read and that an adult can still learn from.
The characters were well-developed too, I thought. All the Autoons had feelings. All were capable of friendship. All felt like three-dimensional characters, meaning that in thirty-eight pages of mostly pictures, Landon Bryce managed to paint three better autistic characters than many books do in over a hundred.

Finding Home at the Gala

The other of two things I wrote for the ASAN November Newsletter. 

On November 14, I also went to the ASAN second annual gala. I was almost an hour late, having gotten stuck in traffic on the way from the Disability and Inclusion in the Humanities panel to the gala with the organizer of the panel and a few of the panelists who were also attending the gala, but what I arrived to was more than worth the wait. When I arrived, it was to…Autistic space!
Autistic space is not like neurotypical space. In Autistic space, stim toys are readily available, such as the blue ASAN Tangles at every seat, and carrying them with us to fidget with when talking to other attendees was completely normal. Instead of the loud clapping applause normally used, we use jazz hands or flapping at the end of speeches or anywhere that clapping would normally be appropriate. That the inability to use spoken language and having nothing to say are two completely different things is accepted as a fact, and is not an issue that leads to continuously needing to prove and re-prove competence. If and when a topic is difficult or triggering, it’s considered acceptable to step outside. There is no need to apologize for acting visibly autistic or for the “forgetting” of faces that can come from face-blindness or from simply not looking at people. Sure, this was a gala at the National Press Conference, but that didn’t mean that we suddenly needed to act like neurotypical adults at their most formal–the social rules common to the outside world need significant modification for use in Autistic space, including a requirement of being as direct and clear in communication as possible given current language abilities and a complete suspension of asking for eye contact. That’s what I found at the gala. I found people talking about important things in language I could understand and being OK with the people fidgeting and flapping and looking off in a completely different direction than the speaker, knowing that this was simply our natural way of being, not some attempt at disrespect.
I heard about self-advocacy and including people in communities, about the importance of Alternative and Augmentative Communication, and about needing to stand together. I heard about not letting the world isolate and mistreat any group that they were somehow convinced was really the group to isolate, no matter how much “but this time we’re sure!” we might hear. They’re never as sure as they think they are, not with Autistic people and not with anyone else. I heard more about the Loud Hands Project, which I submitted a semi-poem to, and finally got to see the video used for fundraising for it. All things affirming the acceptance of autism as a difference that is a disability not in need of elimination or cure, but simply support for a different way of being, were to be found at the gala–it was one of few spaces where I felt completely safe.
Kassiane wrote after Autreat that she had found her family, that it was the Autistic community, and after traveling to Washington, DC for the annual gala, I have to say the same. The Autistic community is another family for me, one that makes sense and that understands both the advantages I have and the difficulties I face. The Autistic community understands that this is who we are, for better or for worse. The gala itself may have only been two hours out of a busy day, but in a world that is not yet designed for people with brains like ours, it meant family and it meant home.