Choosing Your Questions: Don't Ask How I FEEL

Reprinted from Yes, That Too because I think it fits.

Ask what I think. Ask if I think it went well or badly or so-so. Ask if I have anything I want to say about it. But do not ask me to tell you how I feel about something, and never ask for one feeling word to sum anything up. Just don't do it. If I try, I'm going to wind up melting down (probably at you, that's what I call it when a person actually does become the target of the screaming from a meltdown, which doesn't happen much.) I'm also not going to come up with a word. Remember how I talked about having a different set of abilities when I was talking about why I use the word DISABLED, not differently abled? Yeah, that whole feelings thing is one of the abilities I don't really have so well. Alexthymia: It's a thing.
This came up because at Autism Campus Inclusion (training run by ASAN for autistic college students who also do/want to do activism stuff, they pay for all the things including transit to them and a food stipend) we had a presentation about how to run meetings. That's useful. It really is. And the idea of doing an evaluation of the meeting afterwords is useful. It's just the "how this evaluation is run" that needs some changes in order to be accessible to the pretty large number of autistic people who are also alexthymic. Also alexthymic people in general, of course.
The presenter talked about how it's hard, but people have to "get out of their heads and into their guts." No, we don't need to do that, because some of us can't do that. And if you demand it at an autistic meeting, you're making the evaluation inaccessible to some of the people in your target audience. Bad idea.
Or "My answer is always "frustrated," because if you're asking me to name my emotion, I will be," as one participant said after the meeting. Not in the actual evaluation, because EMOTIONS. HOW DO WE? A lot of us also have delays on figuring out what emotion we are having, assuming we ever do figure it out. So.
Access need for a whole lot of autistic people, including me:
Don't put us on the spot to tell you how we feel. (Probably don't put us on the spot at all, make sure we know ahead of time what questions will be coming.) Don't demand that we figure out what our emotions are on your time frame (or at all, really, since it won't always be a thing.) If you want feedback on how something went, ask questions that we can actually answer, and take delayed feedback if that's what we need in order to give it. Let us type it. Let us write it. It's an access need.

Ask what I think. Ask if I think it went well or badly or so-so. Ask if I have anything I want to say about it. But do not ask me to tell you how I feel about something, and never ask for one feeling word to sum anything up. Just don't do it. If I try, I'm going to wind up melting down (probably at you, that's what I call it when a person actually does become the target of the screaming from a meltdown, which doesn't happen much.) I'm also not going to come up with a word. Remember how I talked about having a different set of abilities when I was talking about why I use the word DISABLED, not differently abled? Yeah, that whole feelings thing is one of the abilities I don't really have so well. Alexthymia: It's a thing.
This came up because at Autism Campus Inclusion (training run by ASAN for autistic college students who also do/want to do activism stuff, they pay for all the things including transit to them and a food stipend) we had a presentation about how to run meetings. That's useful. It really is. And the idea of doing an evaluation of the meeting afterwords is useful. It's just the "how this evaluation is run" that needs some changes in order to be accessible to the pretty large number of autistic people who are also alexthymic. Also alexthymic people in general, of course.
The presenter talked about how it's hard, but people have to "get out of their heads and into their guts." No, we don't need to do that, because some of us can't do that. And if you demand it at an autistic meeting, you're making the evaluation inaccessible to some of the people in your target audience. Bad idea.
Or "My answer is always "frustrated," because if you're asking me to name my emotion, I will be," as one participant said after the meeting. Not in the actual evaluation, because EMOTIONS. HOW DO WE? A lot of us also have delays on figuring out what emotion we are having, assuming we ever do figure it out. So.
Access need for a whole lot of autistic people, including me:
Don't put us on the spot to tell you how we feel. (Probably don't put us on the spot at all, make sure we know ahead of time what questions will be coming.) Don't demand that we figure out what our emotions are on your time frame (or at all, really, since it won't always be a thing.) If you want feedback on how something went, ask questions that we can actually answer, and take delayed feedback if that's what we need in order to give it. Let us type it. Let us write it. It's an access need. - See more at: http://yesthattoo.blogspot.com/2013/06/choosing-your-questions-dont-ask-how-i.html#sthash.ZAZUGPVo.dpuf

Ask what I think. Ask if I think it went well or badly or so-so. Ask if I have anything I want to say about it. But do not ask me to tell you how I feel about something, and never ask for one feeling word to sum anything up. Just don't do it. If I try, I'm going to wind up melting down (probably at you, that's what I call it when a person actually does become the target of the screaming from a meltdown, which doesn't happen much.) I'm also not going to come up with a word. Remember how I talked about having a different set of abilities when I was talking about why I use the word DISABLED, not differently abled? Yeah, that whole feelings thing is one of the abilities I don't really have so well. Alexthymia: It's a thing.
This came up because at Autism Campus Inclusion (training run by ASAN for autistic college students who also do/want to do activism stuff, they pay for all the things including transit to them and a food stipend) we had a presentation about how to run meetings. That's useful. It really is. And the idea of doing an evaluation of the meeting afterwords is useful. It's just the "how this evaluation is run" that needs some changes in order to be accessible to the pretty large number of autistic people who are also alexthymic. Also alexthymic people in general, of course.
The presenter talked about how it's hard, but people have to "get out of their heads and into their guts." No, we don't need to do that, because some of us can't do that. And if you demand it at an autistic meeting, you're making the evaluation inaccessible to some of the people in your target audience. Bad idea.
Or "My answer is always "frustrated," because if you're asking me to name my emotion, I will be," as one participant said after the meeting. Not in the actual evaluation, because EMOTIONS. HOW DO WE? A lot of us also have delays on figuring out what emotion we are having, assuming we ever do figure it out. So.
Access need for a whole lot of autistic people, including me:
Don't put us on the spot to tell you how we feel. (Probably don't put us on the spot at all, make sure we know ahead of time what questions will be coming.) Don't demand that we figure out what our emotions are on your time frame (or at all, really, since it won't always be a thing.) If you want feedback on how something went, ask questions that we can actually answer, and take delayed feedback if that's what we need in order to give it. Let us type it. Let us write it. It's an access need. - See more at: http://yesthattoo.blogspot.com/2013/06/choosing-your-questions-dont-ask-how-i.html#sthash.ZAZUGPVo.dpuf

Ask what I think. Ask if I think it went well or badly or so-so. Ask if I have anything I want to say about it. But do not ask me to tell you how I feel about something, and never ask for one feeling word to sum anything up. Just don't do it. If I try, I'm going to wind up melting down (probably at you, that's what I call it when a person actually does become the target of the screaming from a meltdown, which doesn't happen much.) I'm also not going to come up with a word. Remember how I talked about having a different set of abilities when I was talking about why I use the word DISABLED, not differently abled? Yeah, that whole feelings thing is one of the abilities I don't really have so well. Alexthymia: It's a thing.
This came up because at Autism Campus Inclusion (training run by ASAN for autistic college students who also do/want to do activism stuff, they pay for all the things including transit to them and a food stipend) we had a presentation about how to run meetings. That's useful. It really is. And the idea of doing an evaluation of the meeting afterwords is useful. It's just the "how this evaluation is run" that needs some changes in order to be accessible to the pretty large number of autistic people who are also alexthymic. Also alexthymic people in general, of course.
The presenter talked about how it's hard, but people have to "get out of their heads and into their guts." No, we don't need to do that, because some of us can't do that. And if you demand it at an autistic meeting, you're making the evaluation inaccessible to some of the people in your target audience. Bad idea.
Or "My answer is always "frustrated," because if you're asking me to name my emotion, I will be," as one participant said after the meeting. Not in the actual evaluation, because EMOTIONS. HOW DO WE? A lot of us also have delays on figuring out what emotion we are having, assuming we ever do figure it out. So.
Access need for a whole lot of autistic people, including me:
Don't put us on the spot to tell you how we feel. (Probably don't put us on the spot at all, make sure we know ahead of time what questions will be coming.) Don't demand that we figure out what our emotions are on your time frame (or at all, really, since it won't always be a thing.) If you want feedback on how something went, ask questions that we can actually answer, and take delayed feedback if that's what we need in order to give it. Let us type it. Let us write it. It's an access need. - See more at: http://yesthattoo.blogspot.com/2013/06/choosing-your-questions-dont-ask-how-i.html#sthash.ZAZUGPVo.dpuf

Refusing to Pay

Reprinted from Yes, That Too
I've been told this is relevant, so here y'all go:

I'm not sure if this needs a trigger warning or not...

What is the price of success?

For you, it is merely the work and the time involved, with the loss of whatever else you might have done with that time. If you can find the time and the starting resources (these will come back many times over, so while they are required, they are not truly part of the price, not one of the things that you will spend and not see return in order to get your success,) you can have have it.

For me?

When I succeed, there are many who will say I have no right to claim my own neurology.

When I succeed, I will either have to hide away the brain that got me there, accept the "no excuses!" inspiration that will be made of it if anyone knows, or be told that I am an exception no one with my sort of brain could hope to match. Maybe I will get all three at once.

And if I refuse to pay?

If I'm lucky, I can keep my success anyways, but the other costs will get steeper and steeper the more I refuse to pay the price of disavowing my own neurology.

Hate letters?

I'm expecting it.

Being told that I can't understand what it's really like to live in my brain because I can do things?

I've already gotten that one. I've already had people telling me how excited they are that Asperger's is not a thing anymore, forgetting many important details.

Like the fact that, well, it's still a thing until May, actually. Nice try, still here.

Like the fact that I've read several of the proposed versions, and guess what? I might not know which one they are actually going with, but I'm still autistic under all the ones I've seen. Changing labels from "Asperger's" to "Autistic Spectrum Disorder" isn't ceasing to exist, last I checked.

Like the fact that you who told me I would no longer exist doesn't know nearly as much about autism as you think you do, and I know far more than you realize. You think Asperger's isn't a thing, with your justification being the (likely mistaken) belief that you meet the criteria for it. You think that it is simply being smart and awkward, ignoring the echolalia and the obvious sensory issues that are sitting in front of you to make that claim.

Like the fact that you don't know what difficulties, what disabilities I might have, no matter how much you want to believe you know me better than I know myself.

No.

I know what it is to live in my brain.

I know what it is to be Autistic, and I won't be forgetting just because my label now includes the word "Autistic." That doesn't even make sense.

Being told that I am not like their child?

Already happens, sometimes with people whose children are, in fact, almost exactly how I was at their age. I am more like their child than they are.

Articles that attack neurodiversity questioning my diagnosis and my character both?

If they manage to do that to non-speaking Autistics, I'm sure they'll do it to me if I won't disavow my neurology or claim exceptionhood first.

And I won't.

The only way I am truly an exception is that my abilities were presumed and built upon instead of ignored to work on deficits and differences. The rest, while perhaps not the median (can we have a median on a nearly infinite-dimensional spectrum?) or mode (does anyone know what that one would mean either?) is not unusual, is not a shocking outlier no one can hope to match. It's the right person in the right place at the right time, that's all.

And part of "right person" is the right person's brain, you know, that Autistic brain?

Hiding my brain might be the price they will try to make me pay, that they will try to deduct from my account if I will not pay it on my own, but they will find me a difficult one to push into hiding.

My brain is mine, my brain is Autistic, and that means that I am Autistic.

You're just going to have to deal with it.

Allistic to Neurodivergent K Interpreters Are GOOD.

Every once in a while I have a situation where something happens and it requires a meeting or other encounter in a power imbalanced situation. It might be an emergency room, it might be a meeting because someone doesn't understand that the ADA does apply to them, whatever. I don't like to let shit slide, and I don't.

This is a problem, though, because power imbalanced situations make me profoundly anxious. And things that happen when I am anxious? I get even worse at moderating my 'tone' (seriously screw 'tone'), I get worse at understanding content-free speech-if you have ever been in an office setting ever you know what content free speech is, and I eventually lose all ability to speak coherently. What happens instead is an exciting mix of ASL, K sign, noises, and the occasional word. People don't understand that, and they see it as a reason to not treat me as a person. I can't play by their rules, so I am not a real person, you know? And text based communication is right out with these people.

So what do I do in these situations? I bring an allistic, of course! This person's job is to be my Cognitive Interpreter-that is, they (in my case, usually he) translates whatever it is I am saying or flapgrunting or what have you into somewhat palatable language for these people. And he translates "we need to come to the table and dialogue for synergy" into "they want you to go away after they tell you that you're wrong but don't tell you why". And when I ask, "did they just tell me to fuck off?" he says "why yes they did!" as the nurse is protesting that she is sincere.

A cognitive interpreter is not someone who speaks over me. One of the reasons I get flustered in such situations is because I don't have time to translate thought to English to socially acceptable English before people start talking over me. A key thing my cogint does is tell those people to shush and let me finish (or start). I am spending less energy fighting for my communicative space if someone else is doing it for me. He is also backup when it comes to the repetitive "but why are you right?" circle that happens in any adversarial conversation ever. Those meetings tend to get very gaslighty very quickly, and the backup of someone seen as a real person is grounding-it dumps a bit of water on the lamp, knowing that I am right, look, someone I actually respect agrees.

That's a lot of what it comes down to in most situations: a 'real person' is lending his support to the things I say. Sometimes he is voicing what I mean but can't make my mouth say. Sometimes he repeats absolutely verbatim exactly what I said and, like magic, they listen (which is annoying, but it happens). If I say I hurt, medical people don't believe me, but if a real person does? Suddenly they listen. He's a reminder sometimes, I think, that real people care what happens to me. One time I was in the ER with an adrenal crisis after a fairly minor accident in which I got jostled. I was very, very still and sedate-which is not like me. The doctors did not believe me that I was really not doing well at all. They listened to cogint, though, when he told them I don't sit still like that. My pulse was 40 and my blood pressure was something like 66/38. That's not conducive to staying alive-but they apparently needed a real person to tell them.

This cannot be said enough: a good cognitive interpreter does not speak over me. They do not try to make themselves the center of attention, they don't volunteer extraneous information in any situation. They do not put words in my mouth. They are almost but not quite a form of AAC and they are a drawbridge to communication with allistic society. I say drawbridge because the bridge goes up when it's not needed as a tool.

A good cognitive interpreter knows and respects the person they are helping. They know which flaps are happy and which are not so happy-I may not have standard facial expressions, but everything you could possibly need to know can be read from my hands. They know distress signals and happy and they know how to shut up when told to let me stand on my own until shit goes south again. They provide moral support in addition to communication support. Sometimes they're just called an advocate, but they're different, because they do not speak for in the traditional sense. They just make sure everyone is actually understood.

Autismbucks-Guest Post from Grimalkin

Grimalkin is a mentally ill genderqueer person who lives somewhere in Texas. Alternately Dallas. He eats bipolar II or depression or something with nails for breakfast. He makes art out of metal and sometimes paint and also crafty things out of yarn and tries to do both of those things charitably. When he feels up to it, he eats mens rights activists. And other bigots. Alive. With nails. He also is probably autistic but is 18 and therefor probably too old to be diagnosed, oh well.

“Well if you have social issues why do you work at a Starbucks?”
 
This damn question. I get it all the time. Because, you know, jobs are only for able people, especially jobs that require you interact with people. Because disabled people all work... nowhere? I don't know, I'm not entirely sure we exist in this mindset.
 
But really. Ignoring the fact that this question is awful and flawed to begin with (Why do I have a job at  Starbucks? I don't know, because they offered me a job and I don't have the privilege of being picky with first jobs? Because a disability doesn't destroy your ability to do anything and everything forever?) it does raise an interesting topic. Notably, how I navigate a job that does include a lot of social interaction... and how it's actually not that hard to make my job accessible, and how parts of my job go hand in hand with my disabilities. Also how it's not that hard for my coworkers to make my job shit by being unaccommodating dicks.
 
First off, I talk in scripts. I remember the right things to say and parrot them out because I can't easily think of things to say- or the proper things to say, anyways. You know who loves the shit out of scripts? Starbucks. Starbucks is all good with telling you to say the same thing to every customer every time and every customer almost always says the same thing as every other customer in response. There's even a set way to call out drinks to people- no need to improvise, just read out the script. The environment is practically a petri dish for script-using.
 
Because I've become comfortable with using certain scripts in my job, I'm also in the perfect situation to learn social skills as well. I see a huge number of people, and say the same thing to them each time... so I can make little variations each time I have a different customer. I can play with inflection, I can try out different words or phrasing, I can practice more improvised communication in a way that is very forgiving- Worst case scenario, I baffle a customer for five minutes and then forget about them and move on to the next, where I can try a new approach and see what works best. I can learn. It's like a fabulous sandbox for social skills.
 
There are, of course, issues you run into. Issues in this sentence being synonymous with “coworkers.” Coworkers who expect you to act and be neurotypical, and don't have space in their tiny minds to comprehend that you do things a certain, different way and that that is okay. There are ways that they could be accommodating- giving orders in ways that work with your brain (I am happy to say that I have a supervisor who started off by asking how I take orders best), being clear with instructions for you- seriously, fuck “be thorough. But be fast. You're being too slow, now be more thorough! Now, let's move you on to some other supervisor who has an entirely different idea of how to do things.”- and being actually straightforward and serious with the way they communicate with you. Y'know, professional.
 
Seriously, that last one is huge for those of us who straight up do not easily comprehend hidden meaning and intent. An example- as I was wiping down tables on the patio, my supervisor came up to me and said, in a concerned tone, “What's wrong? Is something wrong?” To which I answered no... but I became really worried because I do have emotional issues and I can't always tell how I'm acting or how I'm portraying my emotions. “Because... it seems like you don't want to be wiping down tables!” At which point I'm freaking out a little inside because what, no, I don't mind, I mean I don't love it but, just, what, what am I doing, am I in trouble HOLY SHIT, and then all of the sudden “No I mean, it's okay, you can be honest with me about it.” And at this point I've kind of been brain-bludgeoned into stupefaction and am maybe wondering if they are joking but honestly, I'm overwhelmed and just what the fuck. Luckily they left after I hamfistedly made some response that I don't remember but even thinking back now I am utterly baffled at what was going on. The part of me that has kind of learned how people work... to an extent, is thinking it might have been some kind of humor, but jesus. Don't do that.
 
Along with this issue I have with coworkers, there's the issue of... how I am. How I do things. I move weird and I hold stuff “wrong” and I work best if I can work out my own routine of doing things. Unfortunately, this leads to being told that... you're moving wrong and need to hold something this way because it's better and you need to sequence tasks this way because it's the “best” way and your own way that makes you comfortable is WRONG.
 
The gist of this? Disabled people can hold jobs. Autistic people and people with social issues can turn their jobs into little paradises of social skills learning. The thing that makes it impossible to keep jobs sometimes is... other people. Welcome to the social model of disability.

Time Agnosia

I don't think this is an uncommon problem, but I do think it's uncommon to have a name for it.

I'm significantly time agnosiac. I say agnosiac instead of agnostic because I believe time is a thing, at least for some sense of the word thing. My brain just doesn't register its passing, or lack of passing. Five minutes? Five hours? Five days? Pssht I cannot even tell without a routine, and it's still kind of iffy.

Having no internal sense of time causes two categories of problems: the "oh god oh god I am going to be late/do not have enough time to do this" problem and the "psht whatever I have all the time in the world, oh shit how is it suddenly midnight?" problem.

I have massive, terrible, horrible, awful anxiety about the possibility of being late. It's a panic attack trigger. So I have my routines, I know how long they take, but I round up an hour. Add an hour to any projected times to do things. This means? I am always early. Or almost always early. The busses don't always cooperate. But I am so worried about being late that I am instead ridiculously, obscenely early. This is awkward if showing up at someone's apartment or to meet them for dinner at the restaurant or whatever, but it's better than being late. Anything is better than being late. If I schedule an hour to get ready, an hour for each bus...then I will be on time. I can take a book or crocheting or a notebook for drafting blog posts or schoolwork on the bus and for the wait, at least I am not late.

Not helping this particular anxiety? I was always late as a child because I have too much time urgency whereas my mother figured that on time is for other people. I can't feel time and have always been profoundly aware of that deficit when it effects how a schedule is going to play out.

The other problem with time agnosia is that time just kind of runs away from me. Did I spend an hour, or ten minutes, or six hours doing a thing? Wait, why is it 1 AM? I don't know. Alarms startle me so they're not my first choice. Instead to mark time, I use music:

-I listen to Doctor Horrible's Sing Along Blog to mark chores. It has problematic elements, which I am aware of and dislike. It's the right length & the right level of engaging (not very, songs aren't too difficult to sing with while doing something else) for my purposes.

-I have several CDs or mixes that I listen to while winding down online or doing my schoolwork, so I know that however many hours have passed. If it's on repeat, I am doing it wrong-the purpose is to know when it's been 2 hours, or 90 minutes, or whatever.

-On my ipod I have several playlists that mark how long it takes to get certain places, with the added bonus of shifting my mindset a bit.

Time pieces? Are not as awesome as I thought they'd be. I tried wearing a watch and not only did they keep dying, but I'd also keep checking at what I thought were similar intervals and they...uh...weren't. That did not help the whole "anxious about time" thing. I set my alarm on my phone for one time things and set it on vibrate, and do check my phone for time if there's a reason to, but wearing it on my wrist just makes me more anxious since it seems like such a capricious arbitrary contraption.

Time: it's a mystery. But I cope.

How one Autistic person dealt with meltdowns as a child: On letting it out

Since We Are Like Your Children is about how many of us autistics have dealt with the problems that leads many NT or NT passing parents to think that Autistic activists are nothing like their children, here I will share an anecdote from my childhood.


During the time that my parents were getting divorced in third grade, I was having melt downs on a nearly daily basis.

I would scream. I would punch things. I would stomp my feet.

Oh my gosh, if they saw me, they would have given me the old "low functioning" label and called it a day.

My parents reacted to all of this with great maturity, probably better maturity than the "professionals" at my school.

They had me let it all out. As part of that, they had the wisdom to recognize that my meltdowns were not directed at them or at anyone in particular but were just an expression of some really overwhelming emotions.

As part of letting it all out, my parents gave me a safe environment to let it out. My parents told me to punch pillows or mattresses instead of things that would break.

When I needed to scream, I would also occasionally scream into pillows, also to spare my parents ears.

This gets at an important but perhaps already stated point: meltdowns are at their base expressions of emotion. These expressions of emotion aren't necessarily about blaming anyone in particular. Parents should look for better ways for meltdowns to be expressed, not look to cancel them entirely.

Alyssa Loves Routines Too

Reprint from Yes, That Too

From thAutcast, because his questions make good post fodder.

Routines are import to many autistic people. How do routines help you (or an autistic person you know well)? I am especially interested in stories about what happens when routines are disrupted.

And now I answer.
I like my routines. I remember them pretty well, too, as long as they are the same and they are repeating. I memorized my schedule very quickly in middle and high school, and every time they changed the order of the periods on me, I was confused and often went to the wrong class. By often, I mean almost every time. Disrupt a routine that is already extant, and I get pretty confused. 
And I form routines pretty easily. I can't let myself skip class once, because it will become a routine and then I'll never go. Not exactly a good routine. So I need to be careful.
But.
If I know with enough warning that disruption is coming? Or if I knew that there wasn't going to be a routine? Or if I knew that there was going to be a semi-permanent change in routine, like the transition from semester to summer?
I'm fine with that. 
I might not choose to do it all that often, but give me a good enough reason and I will.
Without a reason to do otherwise, though, I'll do the same thing, day after day or week after week. It's always the same, day after day... Same enough that I don't need to think too much about it, anyways. That's the point of a routine, and it lets me do ALL THE THINGS.
No, really.
My senior year of high school, my routine for Thursday was: 5:00am wake up, get ready for school, 6:15am leave house on bike, 6:25am arrive at school, 6:30am "Independent Study" in East Asian Philosophy (there were 12 of us...) 7:30 my first "real" class starts, 1:50 school ends, then I think it was math team, then homework, then eat dinner on the bus to swim team, then swim, then bus back, then ride bike back. I'd get home at around 7:30pm, eat, shower, sleep. 
And I managed it.
Except that time that swim was cancelled and I was really confused and didn't know what to do with the rest of the day.
Oops.
Or that time last week when my Chinese teacher thought that changing up my tutoring schedule was a good idea. Yeah, multiple meltdowns, thankfully none in front of her because she doesn't know I'm Autistic. I'd been meeting for the same two hour session all semester, and then she decided that it needed to be twice a week, not one long session. We'd been doing it as one long session because that was the only way to make our schedules work, but noooooo. We had to break the routine and try to find a non-existent other time, and it's been chaotic ever since and I've melted down and it's bad.