Meltdown

Recently, a friend of mine asked what we wished others knew about meltdowns. (She blogged about meltdowns a while back, too. It was good.) This caused me to make words. Many words.

You see, I have experience at appearing to be more OK than I am. (I think a lot of people have this experience.) I have also been taught, in a variety of ways, that I should not show around other people that I am not OK. And the thing about getting around that is … it takes energy to break that, energy I might not have when I'm not OK. Often, holding on to some appearance of being OK until I am alone is cheaper for me than allowing myself to show that I'm having a problem. (I'm not faking overload. I might be faking not-overload.)

Now, there is still a point where I will melt down, like it or not, and there are limits to how much I can delay this. So it is possible for me to melt down in front of people. And most of the people I'm around would want to help, would want to check in to make sure I'm OK, that sort of thing. There's just one problem: I reach the point where I can put up an (unusually expensive) facade of OK before I reach the point where I'm actually ready to start putting myself together.

What this means:

If I look like I'm on the edge of a meltdown, there are a few questions you can ask me, one at a time. I'm not going to keep track of a bunch of questions at a time, really do stick to one. And do not touch me. I know people do light touch for reassurance but this is a bad idea. You can point out a spot that's semi-enclosed (corner, alcove, back to the wall) and ask if I want to sit there¹. I probably will. Don't push it if I say no. You can offer me a satin-bound blanket or a fidget toy. I'll probably take you up on either (or both) of those, but again, don't push it. And you can ask if I'd like you to leave me alone. I might say yes, but I also might say no – sometimes, especially if I've got another event coming up sooner than I'd be able to have the meltdown and start putting myself back together afterwards, I'm going to prefer to keep delaying. I'm better at delaying than I really should be, but sometimes this unfortunate skill gets used. But if I say yes, it's time for you to go away, and not come back until either I come looking for you or until the next day. Don't come check on me to see if I need anything. Don't come check on me to make sure I'm OK. Because your presence would mean my training to appear to be OK would make me appear to come out of the meltdown sooner, and because this is actually bad, doing either of those things is very likely to ensure that I am not OK. It will cause me to put the facade of OK up before the actually OK gets going. It does not matter how many times you tell me I don't need to put that facade up for you. I will not, in that state, be able to stop myself from doing what I've been taught I need to do. Stay away. No, you are not the exception to this, because there are none.

If I am actively melting down, that means I'm in bad enough shape that I can't hide it. That's not good, but that does mean there are some things you might be able to do before I've got enough juice to run the facade (and not enough to stop myself from doing so if there's anyone around.) First, do not touch me. Second, if I am not already curled up in a corner or alcove or with my back to the wall, offer to help me get to one of those positions. If I say yes, you can lead me to one. (See above: do not touch me to lead me.) Third, if there's a soft, satin-bound blanket around that I am not already in possession of, putting it near me is a good idea. (Not on me. Again: do not touch me.) If I don't seem to understand the offer, this is a cue to leave. Fourth, melting down burns a lot of energy. I am going to be tired, hungry, and thirsty. If you can put food and/or liquid that is ready to be consumed far enough away that I won't accidentally hit it while rocking or flapping, but close enough that I don't need to interact with any people to get at it, this is potentially useful. (Post-meltdown, I am even more likely than usual to get lost somewhere in the process of attempting to create and consume food.) Once location, blanket, and consumable objects are either taken care of or not, it's time for you to go away. The same rules apply as if you were heading out before I actually melted down.

Counterintuitively, if I start showing any signs of being OK again after I melted down, that's the point where you absolutely must leave now. I'm not OK yet, but I'm starting to be able to fake it and you need to go away so that I can choose not to do so. Those rules from heading out before I actually melted down? They still apply. You need to go away.

1  Weird as this may seem, if I'm going to the corner or grabbing the blanket on my own, that's a good sign. It means I've caught on to the low energy in time to drop the performance, which will buy me more time able to do stuff before I run out of energy entirely. It also means I'm still in good enough shape that if I felt I needed to just leave, I could have done so. This is the part where you get to see a person getting stuff done while visibly autistic. Just like the times where I'm pulling out a whiteboard marker, pen, or tablet to go to class non-speaking, I'm actually fine. Appearing to have my neurotype is not an emergency.




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Not everything is possible (And I get a lot more done when I admit this)

There are, in fact, things I can't do, no matter what mindset I am in. There are, in fact, things where it is not worth my time to try it again and bang my head against that (metaphorical) wall one more time, just to satisfy people who say I won't know until I try. (Usually I have tried the specific task already, which means I should get to know by their logic? The rest of the times, I've tried enough sufficiently similar things that I can predict what the problem will be.)

Now, this is probably the part where you want to tell me not to be so hard on myself. You might want to tell me that the only disability in life is a bad attitude. (Maybe, just maybe, I'll shoot back that my primary disability is y'alls bad attitude about my realities.) Maybe you want to tell me that anything is possible, and tell (not ask) me how much I'm limiting myself this way.

Because I used to think that if I just tried harder I could, in fact, do anything, I actually know what my abilities look like that way. I'm still working on the details of what my abilities look like when I recognize my limits (which is not the same thing as limiting myself, to be clear. I do not bring these limitations into existence by recognizing them.) But I can tell you this: Overall, I get more done  (not less!) when I admit that there are things I can't do. 

I get more done when I recognize that I am not going to gain the ability to independently organize my space on the n+1st try, and that I should wait to try this whole organization thing until the person helping me is ready, because I don't spend all my energy on it until there's someone there to help make sure I'm spending it in useful ways. (Organizing my room still costs all my energy for the day, but it at least ends with organization.)

I get more done when I recognize that my exception handling is not suddenly going to work normally just because that would be convenient. (Weirdly enough, this exception handling issue as it relates to sudden schedule changes is one reason that pushing through pain or illness to finish whatever I was planning on doing is actually the smarter choice. Which sounds like the opposite of limiting myself, at least to an outside observer, I think? That I'm doing a thing while sick or tired or injured because I know my limits even sounds counter-intuitive to me, and I know it's sometimes true.)

I get more done when I recognize that this exception handling issue (plus whatever else is going on with certain kinds of questions that cause them to create an exception in the first place) will, in fact, prevent me from doing many surveys and evaluations. If I'm not burning out most or all of my energy for the day on some survey my program asked me to do (and which they thought would be a 5 minute easy thing), I still have that energy for literally anything else.

I get more done when I recognize that I can't actually stay in a room with a flickering fluorescent light or troubleshoot a circuit with an LED flashing at 5-20 Hz. That's because said flashing lights will, given time, knock out my ability to speak, possibly my sense of direction, and definitely my ability to concentrate on anything other than make it stop. Turn off the light. Unplug the circuit while I try to determine what's wrong with it. Replace the 0.1 microfarad capacitor with the 1 microfarad capacitor to get a .5-2Hz flash rate on the LED, or with 0.01 microfarad for 50-200Hz that I can't see flashing. 

I get more done when I recognize that I am not going to be able to cook three meals a day for myself (and not even one consistently if I'm working from scratch) because I can plan around this. At university, I have a meal plan. That keeps me fed. At home, I cook a large pot of something once or twice a week and eat it until it's gone (then stare sadly at the pot which no longer contains food because I am hungry and there is not a food.) This doesn't work as well as the meal plan does, but it works much better than believing that if I just try one more time, I can cook three meals a day. Because I am spending less time trying to make food happen and more time fed, I can get more other things done too!

I get more done when I recognize that I do, in fact, need to stim and probably shouldn't be faking eye contact all the time. (No, really. Letting myself flap and rock made the difference between always absolutely needing 10 hours of sleep per night with people being able to tell the difference if I got "only" 8-9 hours of sleep one night and my being completely fine with 9 hours as a regular thing and OK with 7-8 occasionally.)

I get more done when I recognize that I am not going to work 40 hours in a week. (I'm going to suggest that anyone who's ever seen my class schedule not run the numbers for this statement, because you will be at least as confused as I am by how this works. I'm pretty confused even while knowing from experience that it somehow does.) I get more done because I'm not staring at whatever my work should be and not recovering when I burn through my mental energy in two to three hours. I rest for several hours and can sometimes (not always, but sometimes) get a second good shift of an hour or three writing things that needed to be written, doing homework, reading for classes, preparing to teach, editing work before I submit it somewhere, or reading for the purposes of my writing. That's more done than when I tried to work straight through, just to be clear. Less time total that looks like work, but quite a bit more done and similar amounts of time that are actually work.

I get more done when I recognize that I can't do a hackathon or any other kind of event that involves working for a marathon amount of time at a sprint level of intensity while going short on sleep. (Actually any event or combination of events that puts me short on sleep for more than a night or two is usually out regardless of intensity, and it's definitely not happening during the semester.) Making myself ill over the weekend by burning myself out to the tune of needing two or three days completely off to recover... when the next day is Monday? Yeah, I can't do that. (Seriously, do you think I'm going to gain the ability to work a 40 hour week by putting all 40 hours onto 2 days?) A more extreme version of the work model that already doesn't work for me only fails more obviously. 

I have better class participation when I don't try to force speech until it's gone, then fall silent because if I had something to say I'd be able to say it. Switching to writing when speech gives out means I can keep participating, that I can show what I know and help my classmates when they are having trouble, and that I can ask questions if I need help. Switching to writing at the point that writing is simply easier overall lets me save energy so that speech might not even give out entirely! That comes in handy if I have sports practice after class, or if I'm going anywhere that doesn't have a white board. 

I have a better time on vacation when I recognize that I'm not going to enjoy speeding from activity to activity at a breakneck pace and will eventually melt down if I try. I still want a calm hour alone on my computer in the morning and similar at night. (I also wake up earlier than my family by enough that it's really easy for me to get that morning hour.) So I bring my laptop on vacation, even if I'm not planning to work, even though the others don't. 

I can't stop you from believing that I'm limiting myself (as opposed to recognizing limits that are already there and being happier and healthier while doing more things I care about because I'm not banging my head against the stuff I can't do.) I can, however, explain so that 1) I remind myself that I'm doing what works for me, and 2) others like me can read that they are not alone.

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It's not just teachable skills

Sometimes (like, oh, yesterday and today) I see people talking about supported housing programs or transition housing programs (I think the difference is that transition ones are supposed to be short-term, though depending on how they decide when to move someone on, that might not work out.) And usually, if it's neurotypical people wanting to create programs to help autistic people, there's a big focus on teaching certain "independent living skills."

That means they want to teach things like:

• How to safely use a stove (don't burn down the house)
• How to effectively use a stove (actually make the food)
• How to use the oven
• How to use a microwave
• How to do dishes
• How to order take-out/delivery (unclear if this is over the phone or online)
• How to do laundry
• How to make a bed
• How to make a phone call
• How to clean the bathroom (because all the pieces in one go is apparently a single task??)

I know how to do all these things. I really do. A program that's aiming to teach me these skills may or may not reflect that, because no, I am not going to interact with people all day and still make myself dinner or make a phone call to order delivery, and my ordering delivery online is iffy too. With the meal plan I have at university, I can (and often do) go get the food and bring it back to my room where there are not people. However, if you can find a way to test only whether or not I know how to do the thing, not whether or not today is a day when I can actually do it after considering various other factors, you will find (as I already know) that I can do all these things. 

However:

This doesn't mean I can live "independently" (alone, without a meal plan, needing to cook all my own food and do all my own laundry, scheduling my own appointments, calling the people who don't take email and who I can't get to in person to make the appointment, and on and on. 

In fact, the closest to living "alone" I've ever gotten was an academic year abroad where I had a roommate, but there wasn't a meal plan and my friends were on another continent, meaning that they were not able to come help me. This did not go well. (It did not help even a little bit that I was extra stressed out by knowing the administration had tried to keep me from coming at all once they found out I was autistic and that they made a few attempts to have me sent home during the year. Seriously, that sort of "don't let them try because disaster!" is just about a self-fulfilling prophecy, because everything is harder when stressed.) The mess was made vaguely manageable because:

• When the roommate was making or getting food, she would usually ask if I wanted any/to come with. This meant that I would get at least that meal.
• My mother actually shipped me snacks that did not involve any kind of preparation. She also shipped me menstrual products after I discovered that none of the stores near me sold tampons. Only pads. 
• The program's academic advisor helped me put my half of the room into some semblance of order during our "academic" meetings more than once.
• The program's residence advisor would actually *bring me meals* when I hit the "can keep up with my academic work or keep myself fed but not both" times. 
• This was the *international* "dorms," which doubled as a hotel, and therefore someone else was cleaning the bathroom and changing the sheets when that needed to happen. (When I am dealing with my own linens, the wash point tends to be "I have bled on these in two different periods.")

Keep in mind that even with all of this, it was, in fact, still a mess. 

At college, I have a single room, a meal plan, and help keeping the room in some semblance of order+making clean clothing happen. This seems to be the bare minimum of support for "manageable."

And yes, learning how to handle the fact that I can't consistently make these things happen for myself is a thing. It's even a thing where a person who understands the actual problem might be able to help me with. (If you've suggested a life skills class, or if you've suggested anything involving a planner, I have already concluded that you do not understand the actual problem and have discarded your advice as so much noise.)  However, some skill that you can teach me so that I can then proceed to consistently make these things happen for myself is not a thing. 

There are skills I consistently retain, pretty much regardless of my physical or emotional condition. I can (and have) participated in mathematics competitions and done well while sleep deprived from a night in the ER and nursing a focally fractured shin, as well as while coughing my lungs out between rounds. I probably shouldn't have been in school either of those days, if I'm honest. I knew full well I wasn't safe to ride my bike to school (and therefore walked... on said fractured shin) in the first case. But I did, and I was still fine with the mathematics. 

There are other skills that can give out on me for many reasons, not all of which I even know. Speech is one of them. I lose speech pretty regularly, and I still go to class (and do math) while speech isn't working because math is sturdier than speech. All of the skills they talk about teaching as "independent living skills" are of this type. I know how to talk. Sometimes I can't. I know how to cook. Sometimes I can't. Heck, there are times when making use of my meal plan pushes my limits. I remember one day where lunch was Thai chicken wraps. I wasn't that hungry, so I only wanted half a wrap. I stood in front of the table with the wraps on it for a good two minutes trying to figure out how to make this happen before "there are knives" occurred to me. If it takes me two minutes to think of getting a knife which is in my line of sight, I probably shouldn't be using that knife. Thankfully, I was having lunch with a professor that day (no, really, his stopping by my office is probably also why I made it to the dining room at all that day.) He cut a wrap in two pieces. I took a piece. From there I was able to get a cup of liquid and a napkin, and make it to the table. Acquiring and consuming food is not easier for me than graduate math classes. 

If I need to make my own food, it's even harder. Here's an approximate list of the steps involved if I want to make ramen in the microwave at university.

• Notice that I am hungry.
• Stop doing whatever I was doing before.
• Stand up.
• Do I want tea too? Where is my tea jar? Where is a chopstick to stir the tea with? Is there still tea in the tea jar?
• Pick up the tea jar.
• Take the tea jar to the bathroom.
• Dump the remaining cold tea into the sink.
• Turn the sink on.
• Put the jar under the sink.
• Turn the sink off.
• Empty the jar into the sink again.
• Go back to my room.
• Remember that I want ramen.
• Grab a thing of ramen. (Do I still have the tea jar and the chopstick?)
• Go down the stairs.
• Do I want chicken in my ramen?
• Take chicken out of the fridge. (actually several steps)
• Dump chicken from bag to bowl.
• Put chicken in microwave. (again several steps)
• Set microwave for one minute.
• Grab two tea bags.
• Unwrap the tea bags.
• Put the tea bags in the jar.
• Fill the jar with boiling water. (Thank blob we have a machine that dispenses boiling water.)
• Open the ramen package.
• Remove the two small bags from the ramen package.
• Empty the vegetable bag into the ramen container. (Do... something with the spices bag.)
• Fill the ramen container with boiling water.
• Carry the container full of boiling water to the microwave (don't spill!)
• Put the ramen in the microwave.
• Take the chicken out of the microwave if applicable.
• Set the microwave for four minutes.
• Add sugar to tea. 
• Stir tea with chopstick.
• Add whole milk to tea.
• Do something for the remainder of the four minutes. Could be fall over on the couch in the room that has the microwave and fridge. Let's go with that because it means I'm still in the room when the timer goes off and this is long already.
• Pull the ramen out of the microwave. Hot hot hot!
• Carry ramen, tea, bag of spices, and possibly chicken upstairs.
• Add spices+additional cayenne to ramen.
• Mix ramen (more chopsticks.)
• Add chicken to ramen, if applicable.
• Mix ramen again.

And now, finally, I have ramen and tea. Realize that some of these steps could be broken down further. None of these steps are automatic for me. I can (and have) forgotten what I was doing and wandered off between any two of these. When I need to boil the water myself, I forget that I have boiled water for long enough that I need to boil it again an average of three times before I actually manage to make myself tea or ramen. 

So the thing I actually need, often, is someone who can remind me (but only at the actual time I need to do the thing, ahead of time is worse than useless) about a thing I need to do, possibly walk me through steps (and not in a "this is how you do the thing" way, because I actually do know how to do the thing and being condescended to will only make me mad), and in some cases, just make the thing happen for me because seriously this is not happening right now. Are any of those the skills they're going to teach me? No, because they aren't actually skills. 

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Plans and Routines

There's an idea that autistic people depend heavily on routines and/or plans. Sometimes it's even true. I like routines because the less I need to think about my schedule, the better, but I also like to know what's coming. The easiest way I've found to meet both of those desires is to just do approximately the same thing each day or each week.

There's a few bits of nuance I'd like to point out though. The first is that plans and routines are different things. You can have (or break) one without the other, which tends to be how I figure out that two things 1) are different and 2) don't have one as a subset of the other.

Example of breaking a routine because of a plan:
Normally, I eat my meals at the International Engineering Program House. (It's my meal plan.) This Thursday, I am not going to eat lunch or dinner there, which is a break in my routine, because I'm going to Crossingscon! (that's a plan.)

Example of going back to a routine because of a broken plan:
Last semester, I normally went to a club meeting at 6pm on Tuesdays. I thought I had to meet with a student one Tuesday at 6pm, so I wasn't going to go to the club meeting (that's a plan.) When the student cancelled (broken plan), I went to the club meeting (back to routine, but not what was planned.)

One of these I'm completely fine with, and it's not the one where I'm following a routine. It's the one where I'm following a plan: I know what's going to happen, not (just) what's happened in the past. The other? I had trouble both during and after the club meeting even though a focus on routine might lead you to believe I'd be fine.

And yes, plans and routines can relate: if I have a routine, the idea that I'm going to continue having that routine becomes a plan, either implicitly or explicitly. (At least for a certain duration. I know full well that routines change from one semester to another. Classes change and club meeting times change, and that's not an issue because I know what classes I'm taking, when I'm taking them, and where they meet. I've got a plan.)

It's also possible to break both at once, and then I'm really in trouble: When I was studying in Tianjin, my class took a trip to Jingdezhen. I knew that was coming, so that was a (planned) change in routine but not a change in plans. When we got back, however, I had to switch from the travel routine back to the classes routine (change in routine) and they changed our tutors without warning (change in plans.) They also changed our groups for the small group classes and which teacher had the big group class vs. the small group classes, again without warning. That was a bad week, which ended with my melting down in class.

I mostly like routine because when I have a routine, I don't need to think as much about what I'm doing next. It's nice, but not having one is OK, and having it change (with enough time to plan) is fine too. I mostly like plans because I like knowing what's coming. I'd generally rather have one, but I'd much prefer not having one at all to having one changed at the last minute. I can cope with not having a plan. I don't do well at all with having plans changed with little to no warning. The worst thing is a last minute change in plans that is also a break in routine, even though the broken routine wouldn't have been an issue if I'd known it was coming. 

Isn't it time to leave your comfort zone?

I get asked this... sometimes. Most recently, I got asked this when I said I planned to stay in the same housing I'd had for undergrad through my doctoral program, since I'll be staying at the same university for it. (My housing is technically program-specific undergraduate housing. The person in charge of the house has said she does not care that I'm not an undergraduate anymore.)

And yes, it is time to leave my comfort zone! I'm moving from mathematics, which has been a bit of a home to me since ever, and mechanical engineering, which I studied as an undergraduate, to neuroscience, with major professors who are both biomedical engineers. That's a departure from my comfort zone. I'm walking a bit into the lion's den to be on a project designing technology for autistic people, likely working with parents and autism professionals in addition to my major professors. (I'm pretty sure I'm going to need to talk to parents and professionals, actually, since, as per usual, folks are thinking about children and since I'm apparently the autism expert on the team in addition to the technology and neuroscience know-how I'll be picking up during my studies.) That's an even bigger departure from my comfort zone.

My living arrangements are not the way it's time to leave my comfort zone. There's a few reasons for that.

Reason the first: Too many things changing at once is really hard for me! If I'd gotten into, say, MIT or Berkeley or some of the other schools I applied to, I'd have had to change my living arrangements in order to attend those schools. Since it would have been necessary, I'd have done it, but since it's not necessary, change for the sake of change and leaving my comfort zone is not going to be happening. I stick to changes that have good reasons, because change is hard.

Reason the second: My needs in terms of daily living might not be particularly complicated, but if they are not being met, bad things happen. I need easy access to food without needing to think much about how I'm getting said food or what I'm eating. That means I need a meal plan. My current housing comes with a meal plan, which is good. I also need to be able to avoid loud, bright places full of people. The main dining halls are definitely loud, bright places full of people, and we're not allowed to take our food out of the dining hall. Like many others, I know how to smuggle food out of the dining hall anyways, but when I am overloaded enough that I need to take my food out, the extra steps involved in doing so are going to be a problem. That means I should really be on a meal plan where I can take my food out of the dining hall. My current housing's meal plan allows this! So my current housing meets those needs, and finding other ways to meet those needs is effort that I don't need to make right now.

Reason the third: I don't drive. I passed my road test recently, so I legally can drive, but over in reality-land I don't drive. Driving tends to knock out my ability to speak, often for an hour or two after I'm done driving. (Even though I have no issues with going to class, work, or practice while non-speaking, I won't intentionally do things that make me lose speech for class, work, or practice.) Given that public transportation around the university is extant but not great, that means I should be living on campus. 

In combination, these reasons mean I should stay put. It's tricky to find housing on campus as a graduate student, and the on campus options for graduate students don't come with meal plans at all. It's possible to buy individual meals at the main dining hall (or at my current housing, though we don't get to take food out when we're buying individual meals as non-residents.) However, having that as "one more option" as opposed to "the default I don't need to think about" won't increase the probability of my eating meals. 

So yes, I should leave my comfort zone sometimes. I should also think carefully and critically about when, where, and how I leave my comfort zone. I want to take care of myself, and not just so I have a reasonable chance of completing my doctorate!

"Can't" is Actually Important

All these thoughts were brought up again in the context of sports, because one of the coaches for my ultimate team said that we weren't ever supposed to say "I can't," at practice. I'm fairly sure that was supposed to be empowering, and I'm just as sure that for me (and probably for a whole lot of other disabled people) it's actually terrifying. Thankfully, I was able to explain to the coach and have her understand why no, I really do need that sentence in my vocabulary, and I need it taken seriously when I use it. Bad things happen otherwise.

Part the first: What I find easy vs. hard vs. impossible doesn't line up very well with what most people find easy vs. hard vs. impossible.

This is the part where "differently abled" is a technically accurate description of my abilities, and the existence of societal factors putting values and expectations on certain abilities is why I still refuse to call myself differently abled. I wrote a post about that a while back.

However, this is mostly the part where the failure of my easy, hard, and impossible to line up with that of anyone else means that my abilities are apparently incomprehensible to a significant portion of the world. The idea that I can do calculus but not organize my own locker (not actually related skills in any way, shape, or form) or that I can be decent at Ultimate but not able to jump such that my feet leave the ground together and land together (therefore not actually a prerequisite skill, but I can at least understand why people assume so) is apparently incomprehensible.

This means that when I say I can do one thing, but not another, people are too busy being confused to accept this, and cognitive dissonance leads to my can't getting ignored.

Part the second: What I find easy vs. hard vs. impossible doesn't even always line up with what I find easy vs. hard vs. impossible.

That is, my abilities vary over time, and hugely so. Speech is the big example here, that on my best day I can win a face to face debate in class without preparation by explaining why my opponents evidence actually supports the position I was assigned, and then there are also times when I can not speak at all. There's also a huge amount of middle ground, where I spend most of my time. That middle ground includes things like how much I can say that's not scripted, how quickly I can get words from my head to my mouth, how obvious it is that my prosody is weird, and whether or not I can initiate a conversation.

The way my abilities get prioritized also doesn't match with that of most people, so the way my ability variation happens can confuse people. For most of my classmates, the ability to concentrate on graph theory homework or measure theory assignments would go long before speech did. For me, I have repeated evidence that speech goes long before my ability to pay attention in class, write papers, or do homework does.

Part the third: Not recognizing "I can't" is used to deny access needs.

This one is common. A person has an access need. I have an access need. We all have them, but sometimes when they're statistically less common, the fact that it is a need is ignored. No, I can't depend on always being able to speak. That's why I carry pen and paper, and that's why I carry the iPad. No, I can't tell people apart by their faces. That's why it takes me so much longer to learn people's names. No, I can't organize my own locker or desk or room independently. That's why I need help organizing my space. No, I can't consistently remember to eat three meals a day without reminders. That's why I need some sort of reminder system.

For some of these "can't"s the access need is that I have a work-around and just need people to get out of the way while I use it. However, when the people or institutions around me refuse to recognize the "I can't" as legitimate, either because can't is generally not accepted (hi, sports coach who had no clue what kind of disability issues sat around the issue of "can't") or because the specific inability is one that I'm not allowed to have for some reason.

Part the fourth: Deciding that a "can't" is actually a "won't" leads to very ineffective and very scary discipline.

When I was in school, some of my teachers recognized that I actually couldn't independently keep my locker organized and not full of piles of papers. So, once in a while, they'd pull the trash and recycling bins from their classrooms after school, sit down with me next to my locker, and help me deal with the mess. Together, we were able to get my locker back to a semblance of order.

I also had teachers who thought I just didn't care, and if they were smart about choosing the consequences I'd magically get my locker clean. This ranged from sitting me down and telling me I couldn't leave until it was done (ended with my crying in the middle of a pile of my stuff in the hall until one of the teachers who had figured out it was a couldn't found me) to having my enrollment in an appropriate math class held hostage to my "getting organized." That one ended when my eighth grade teacher finally realized that this clearly wasn't working, and that this was not an acceptable consequence to use anyways. It turned out that there actually was no appropriate class to enroll me in at the middle school, so they gave me an independent study that year. The idea was that I'd use the independent study to learn what was left of geometry and to do whatever math-related things caught my interest, and that I'd test out of ninth grade geometry when I got to the high school, taking Algebra II with the tenth graders instead. I actually tested out of two years of math and took Precalculus with the eleventh graders -- even when they realized that an appropriate math class meant grade-skipping me, they underestimated how far ahead I really was.

And remember, this is me getting off easy. No one hit me. No one tried to prevent me from accessing the mainstream curriculum (the mainstream just happened not to be appropriate for me in one subject.) No one decided I wasn't really ready to be a legal adult. I was "only" left to cry it out and I "only" had the stuff I could do held hostage to the stuff I couldn't do.

When I Am Using Text To Speech

I've written a bit about my use of text to speech software as a form of augmentative and alternative communication. On my laptop, I have eSpeak which does English pretty well and Chinese poorly (but extant!) On my iPad, I have Proloquo4Text. I really like having the ability to type and pull saved phrases, because there are phrases I use frequently and there are phrases that I might not remember I have the option of using unless I see them. (Setting boundaries of No, I can't/won't do the thing or asking for help are the parts where I might not remember I can do that.)

There's some articles around on how to do communication with AAC users, which is cool and a nice starting point, but folks are going to have different preferences related to how they use their AAC and how others interact with them. Thus, I'm tossing my personal set out there, in no particular order.

1. When I am typing, this is not always equivalent to "gathering thoughts," but it's usually close. If you were talking before I started, go ahead and finish. This isn't me starting to talk yet. Just don't do "I see that Alyssa has started typing so I will now start talking" and we're probably fine.
   
2. As a corollary, since we're not treating my starting to type as the same thing as me talking, we're all the way not treating it like that. If I start typing before you finish talking, This is not me interrupting you. It's not me interrupting you until I hit "speak" on whatever I wrote while you're still talking.
   
3. There might be times when I interrupt. Just like I might when I'm speaking with my mouth. It happens! Especially if there's an emergency, but also because in natural conversation people do sometimes interrupt each other.
   
4. Once I hit speak, if you start talking before the software finishes, you are interrupting me. Are there times in normal conversation where that could happen and be OK? Sure, and I'll judge it the same whether I'm using my mouth or typing. But let's not pretend that it's not happening. (The existence of a replay button on Proloquo4Text means I may less annoyed by an interruption than if I were speaking, unless I have reason to believe you're only interrupting because I'm using AAC, in which case I probably think you're being terrible.)
   
5. If you wouldn't finish my sentences when I'm speaking, don't try when I'm typing.
   
6. Unless I am turning my device around to show you what's on the screen and you're moving it to see it better (I don't always know what angle is best for showing someone) don't touch my device. It's doing the job of my mouth/vocal cords/etc.
   
7. Talk to me, not around me.

Long story short, there's some practical questions like "When can someone else touch the device?" and "What does "starts typing" count like?" but we should be looking at a fairly typical conversation. 

Having Bad Days

For some reason, I have trouble with the concept that I am allowed to have bad days, that I am allowed to mess up, that I'm allowed, essentially, to be human. It's a problem. Neurodivergent K talks about it too, and yes, I did, in fact, manage to internalize this really toxic message while still being passed off as "just" gifted.

With my getting sick this weekend, I'm seeing (at least for the moment) just how illogical and potentially bad this is. Warning for potentially TMI discussions of sickness beyond this point.

"But AAC Increases Speech!"

So this is one of the big arguments I see in favor of giving people who don't talk, or who only talk a little, access to augmentative and alternative communication (or, as sometimes I think of it, maybe-actually-working communication. Because most of the time, if parents and teachers are considering AAC, that means that the communication that the person has is not working. Maybe it's a matter of not knowing all the words, maybe it's a matter of other people ignoring the behavior side, there's always multiple sides in a communication breakdown but that doesn't change the not-workingness.)

And people worry that if they let their kids use AAC, their kids won't talk.
Study after study shows the opposite, by the way, that if you do speech therapy type stuff and AAC stuff at the same time there's both a better chance of speech and more speech than if there was only speech therapy stuff. Even just "we're doing speech therapy, here's an iPad AAC app too" increases speech more than just the speech therapy.

But.

Here's my question.

Let's say that a person did decide, after getting their AAC device, that they were done trying for speech. Let's say that a person did decide that typing or picture cards or whatever else just worked better and they were done trying to make mouth sounds.

WHY IS THIS THE THING YOU ARE AFRAID OF?

No, really.

Why?

Where is the problem with this?

If a person is happy with how their AAC device is letting them communicate, which means it's working for them, why the insistence that they must also speak orally? Why the insistence that one method of communication is standard and ideal, while the other is, well, "alternative and augmentative." Why is AAC even needing to deal with the accusation that it could reduce a person's motivation to speak?

Cause I'm not going to lie. My motivation to speak is lower when I can just type. If I feel like I'm on the edge of speech going kaput, or speech is getting tougher, or whatever else? Once speech is an effort much of at all, if typing is an option I really do just go, "Screw it, I'm typing." And I fail to see the problem with that! It's me choosing the method of communication that works best for me, and that should be a good thing, not used as the reason to keep AAC out of people's reach.

The Stuff and The Things

Also known as "What's Alyssa been up to?"

I started teaching precalculus. There were technical difficulties in the classroom (my computer didn't hook up to the classroom media properly even though it worked fine in the other classroom that's theoretically the same.) I haven't needed my text-to-speech yet, but I am going to need to figure out a different way to handle it than the classroom audio because the connection is not working.

They'd probably move my classroom if I asked (the chair of my department offered that he could get it moved in case of just this problem), but my class is mostly freshmen and they're having enough trouble getting used to college as it is, so I'd rather either fix whatever is wrong in my current classroom or see if the speakers I have for my iPad's AAC are loud enough for the classroom.

I have made an attempt at joining Best Buddies, not because I think the way they work is good (erm, no, not even a little bit) but because I want to make a point to the people there that developmentally disabled people can be mentors too. (I'm also looking forward to meeting my buddy, because yeah, I do like getting to hang out with other disabled people/people with disabilities.) I've heard from a friend with what I'm guessing was a similar idea that the online registration form directs you into the person being helped category if you say you have a developmental disability, so I have plans of attack in my head for either getting it changed or making a really loud fuss about it (hopefully the first, probably the second) should that still be the case. The university chapter said "of course you can!" when I asked about being a mentor while myself disabled, so I might be able to get them on my side for at least the changed part, but probably not the big fuss part, even though the big fuss is probably how the changed would happen if it's going to.

I went to the meeting of my school's graduate assistants union. This is a year for contract renegotiation, and I noticed that the only reference to disability at all is in the nondiscrimination clause. There's nothing about accommodations or access or anything of that sort, or about designing things to be usable by as wide a range of graduate assistants as possible in the first place. Which, I mean, I can kind of understand why it's not in there:

1. It's not the sort of thing most people automatically think of unless they are themselves D/disabled or have a disability.
   
2. The accommodations/access side is theoretically covered by laws like the Americans With Disabilities Act anyways.

But.

I think it should be in there anyways, and there's a few reasons for that.

1. Enforcing the ADA is really hard for most people, because it involves filing a lawsuit with the department of justice. Yes, even the threat of a lawsuit can be effective at times, but it generally needs to be at least a semi-credible threat.
   
2. If it's in the contract, then violations can also be handled by having the union go to bat, such as by filing a grievance. That's got more force than showing up in an office and complaining alone, but is generally easier to accomplish than filing a lawsuit. This is important because many professors do refuse to ensure access for students, and many departments do actively exclude disabled faculty members.
   
3. Attitudes: If following relevant disability laws is explicitly stated in the contract, even if it is a bit redundant (and as an engineer, I like certain kinds of redundancy, including this particular kind,) tells people that there's a group on campus that cares about the disability side of things, beyond just disability services (who don't negotiate the graduate assistant contracts.) There being such a group is a whole lot more welcoming for folks where disability stuff could be relevant than there not being any groups like that is!

I'm actually supposed to talk to the... I think it's the executive board or the negotiating committee or something like that, this Monday, right after lunch. When I brought it up, they said that it was important and they'd like to get it into the contract. One of the people on the board worked in disability services at another university for a while before coming to grad school, and she pointed out that she'd seen so many professors actively refusing to do access, and disabled students have all those same stories from the end of being the one who gets excluded, that this was a big problem. So it looks like I've got union support in saying this needs to be on the contract.

Being a teacher who can't always speak

Today, I did something that's kinda hard, and kinda scary, and kinda risky. I told the department chair (so basically my boss, because I'm a teaching assistant and he's also coordinating the course I'm teaching) that I'm not always able to speak. I also told him what my backup plan is for those times (it's a pretty good backup.)

It went fine, by the way.

But I wanted to write a bit about what I think made me so lucky there, because there's some things I was able to pull off that not every disabled person can do, and these are relevant things! And it's not fair, and it deserves talking about. So does the fact that even with all the things I have working in my favor, it wasn't actually guaranteed that I'd get the good result I got.

Thing the first: I did my undergrad partially in this department (and partially in other departments in the same school.) That means that everyone in the department already knew who I was, and most of them actually knew me. I was that freshman who somehow managed to end up tutoring Real Analysis. What this means is that I got the chance to prove my ability as a tutor and as a student before anyone knew that the disabled side also exists.

Thing the second: I don't have big bulky tech that is obviously coded as "for disabled people" on my person... ever. My text to speech is on my laptop, which is a pretty common thing for a college student or grad student to own and carry with them. This means that my assistive tech's status as helping me with an aspect of my disability isn't clear until I start using it for that. I do a lot of other things with my laptop, same as most students do a lot of things with their laptops.

Thing the third: While someone who knows common traits and has a good idea what the tip-offs are for autistic adults will find me not even a little bit subtle, most people don't immediately know that I'm disabled upon talking to me. If they could tell immediately, my "pass for a little bit, then mention that I'm disabled a bit before I need any accommodations" method would be impossible to actually do.

Thing the fourth: I got lucky. Even when all the other things line up well, luck of the draw is still huge. (Luck of the draw may not be enough when the other stuff doesn't line up.) My department chair's initial reaction was to ask what he/the department would be able to do to help, and that I should let them know if I needed anything. I actually don't need much from them: I need them to not take issue if they see me using my text-to-speech in the classroom or if they find out about my using it. I need them to have my back if someone else takes issue with the use of text-to-speech.

What I've got:

1. Departmental not-taking issue and backup if someone else takes issue.
2. Offer that if speech is kaput I can text the office and they'll send another TA over if needed. (Probably not needed, the point of my backup methods is that I can keep teaching even is speech goes kaput.)
3. Statement that if my classroom's speakers turn out to be randomly incompatible with my text to speech/audio output, they'll get me moved into a classroom with compatible speakers. 

That's actually more than I asked for, but it's all stuff that's a good idea on their part. I want to get it in writing because a big piece of this was crossing my t's and dotting my i's to cover my hide from any potential students taking issue, so I will want to talk to disability services, but yeah. Seems to be working OK in my case, and my main issue is "So the solutions on the practicality side all exist, why is this sort of thing unusual enough that none of the classroom media assistance people had heard of sticking text-to-speech into the audio system?" My secondary issue is "So um maybe enough education that the phone isn't the first method of contact suggested for the event of speech going kaput would be good?" Because that was suggested before texting was, and if I can't speak, I can't phone. (Not that I do well with phones when I can speak, but...)

On Knowing

There are parents, apparently, who don't tell their autistic children about the diagnosis because they are afraid their children will be bullied. That's not going to work, and depriving people of useful knowledge about themselves in a failed attempt to protect them from something else is just a really bad idea.

I understand the fear of being bullied. I really do. I was bullied, as a kid. A lot. Not as continuously or as obviously or as physically as, say, Neurodivergent K, but I was bullied. All through third grade, there was a pair of kids who would spend the entirety of chorus meetings using my literalism and dislike for errors against me and then call me ret*rded. They would step on my feet when they had the chance, too.
A teacher actually hit me with a book that year, too, because I was clumsy and hit my head on the slanted ceiling every day.

Everyone made fun of me for my really, really bad hiccups too. They'd insist that my hiccups making my jump was a purposeful thing "for attention" as opposed to something that... well, hiccups still sometimes make me jump. Part of that is my startle reflex, also a target for the bullies, and part of that is that the diaphragm is a strong muscle! Also my medical history does include a rare thing where the other people with it got really bad hiccups. Like, this is not me trying to get attention. There are better methods, like doing algebra at you while being nine. Hiccups just suck.

Here's the thing: this wasn't the result of me knowing I'm autistic. It wasn't the result of my parents knowing I'm autistic. It wasn't the result of my teachers knowing I'm autistic. It wasn't the result of my classmates knowing I'm autistic. I know this for a very simple reason: No one knew I was autistic. No one. Didn't stop the bullies.

Things actually got better once people knew, particularly once I knew but really it was people in general. My classmates this year were supportive and told me things like "My presentation has a video in it, bring headphones to class just in case" ahead of time. My teachers were supportive and told me things like "Email what you wrote to me after class" when speech goes kaput and I start typing instead, but don't actually ask a classmate to read it aloud for me.

Not everyone will be that good (they should be, but they won't) when there is a label. But the fact is, autistic people get bullied in ridiculously high numbers because people can tell we're different and decide that's an acceptable thing to prey on. That happens with or without an official label for the way that we're different. The label and the lack of a label can both be used as excuses for the bullying and the general terribleness, but neither is the actual problem. Telling us that we're autistic isn't going to make the bullying worse. (If our teachers are sufficiently terrible, telling them might make it worse, but telling us? No. That won't make it worse.)

BADD: Not what I was planning on but it's ableism and I'm against it

Warning for ableism in school/educational settings.

This is my post for Blogging Against Disablism Day. It's not the post I was planning on writing but then I melted down over this so it's what we're getting. If I'm lucky, I'll manage one on my planned topic thanks to time zone differences.

I don't phone. My program people know that I have issues with phones, but don't seem to get the full extent of the issues: I am pretty much limited to scripts and noncommittal sounds on the phone, because I am not processing phone conversations in real time much of ever. So if they're calling to say "I said I'd call you when I got here and here I am" I'll be fine: I go meet them. If they're calling to say "Yo, you forgot your book in my office," I'll be fine: I know that script, I say thanks and ask when I can get the book. I might need to supply some information that I already know, but I don't need to figure out what script to put it in or create one from scratch.

But if it's communication for a job and I need to be able to react to new and potentially unexpected information with actual solutions and real-time reactions? I've got to be text based. That's just how it is. Email is good. Text messages are manageable, though kind of annoying for long things because of the keyboard and screen size and not really practical for job communications thanks to that.

My program people have been good about many of my issues, but not all. Mostly it's been cognitive stuff that they've been bad at: Newsflash, a person can be cognitively disabled and still meet the ADA "otherwise qualified" thing when the stuff that cognitively doesn't work isn't the core duties of the job/the core expectations of the academic program. And still need accommodation for those things.

So: This paperwork is not cognitively accessible to me, I need the questions in a different, less open-ended form or to not be the one doing this paperwork.
They wouldn't believe me until they actually saw me melt down related to it. Twice. Once at orientation, and yes I told them what the problems were then [the questions aren't accessible to me and also your person talking about cross-cultural communication is using the same words that the people telling autistic people how we interact wrong in all the ways use.] Once after I told them and their suggestion was to have the residence director help me with it, ending with my melting down in her office.

So: I need significant support writing a cover letter for a job. Basically it means the person helping me asks a ton of questions and I answer them and then edit into niceness, I actually posted the progress on We Are Like Your Child after a friend helped me in English.
The friend helping in English happened because my program people didn't provide the help needed. Residence and Academic directors totally talked to each other about how my issue was "worrying" but they didn't tell me what they were worried about and they didn't give me the help that would have led to there not being an issue.

So: I don't phone. They've been told multiple times that I don't phone.
Academic director calls me on the phone to tell me that my internship teacher isn't using email for a reason I don't understand. But one of the big things is that people often don't understand the reasons behind very real needs so I'm not going to argue. It's something about computers not being good right now. Fine. Since I'm getting this information second-hand from someone with no such issue, how about telling me this in a mode of communication I'm OK with? But no, this is apparently too much to ask, for people who don't have issues emailing to remember that calling me should only happen for things that are both urgent and important. At the start of a break over which I am not working, this is not urgent.
Also the teacher-given suggestion is not practical: texting for all job-related (sciency!) communication is not practical. Small screens, small keyboards, not good for reasons that I don't think even have anything to do with my being Autistic.

Yes, these are individual incidents faced by one person, but there is a pattern: I am disabled. I have a need related to my cognitive/thinking/processing stuff. It's not believed without huge piles of proof often involving meltdowns, and even with the proof the offered solutions are often impractical. These needs are special and it's expected that people won't understand them. I should be grateful that I'm here at all, really, my program had to bring up the fact that they could get sued if the university rejected me over disability after the program accepted me to get me here.

That's saying that these needs, which are considered part of a disability instead of "sometimes people have things they can't do," are special and I should expect them to get ignored or forgotten. That's ableism. It's part of a pattern of how differences in how people can think and process get us excluded, you know, ableism. That thing we're against today?

Disorganized ramblings on asking for and then not receiving help

After climbing the Great Wall of China with my teachers and classmates from my study abroad program, I realized something. When I have a really obvious coping mechanism or solution where you can tell I'm doing something unusual, they're really fast to come offer help. But when I ask for help with something everyone else seems to be able to just do, they're not really sure what I need and I'm probably not going to get what I need. This is really frustrating, because guess what? When I've got the obvious coping mechanism going on, that means that I've got a solution! I probably don't need help! I've got this!

When I'm asking for help (which is one of the things I'm really bad at,) there's something I need help with. It means there's a problem where I don't have a good solution. If it's something that most people my age are expected to be able to just do, that's thought of as simple? Chances are, I don't even have a bad solution that drains my energy like woah, because even those are less draining than spending a long time explaining that I can't do the thing, why I can't do the thing, what help I need, and probably still having to use my bad solution anyways because “I should know how to do this.” Yeah um... I'm well aware that most people can do the thing. I am well aware that pretty much the entire rest of the world thinks FAFSA is annoying but simple while Real Analysis is complicated and hard. I am well aware that my thinking Real Analysis is simple but FAFSA is made of pain and misfortune is weird. This is not even vaguely news. Telling me this is not even vaguely helpful.

Not helping me (or thinking that giving me the first step will magically solve the problem even after I've told you it won't) isn't actually helping me, because I'm not going to magically gain these skills just because you think I should have them. Not tolerating the lack of certain skills doesn't make them appear. It just means not tolerating the people who happen to lack those skills. Which, um, not cool much? Also going to exclude people who have the skills needed to do the job but not to get the job in the first place, which is counterproductive for you too!

So reality moment: Writing a cover letter to ask for a job is hard for everyone, being worried about the fact that I need to be walked through it step by step every time is OK (it worries me too sometimes!) but deciding to worry while not giving me said walk-through is worse than useless. Telling me that FAFSA and scholarship applications and other burecratic paperwork are simple but boring isn't helpful, though if that's what they are for you, helping me get them done totally is! Because guess what? For me, those aren't simple. I'd rather sit my Complex Analysis final again. Maybe the whole 3-finals-in-a-row day, at least I understood what was being asked and how to answer those problems.

Yeah, I'm conventionally “smart” in a lot of ways. I do ridiculously well on standardized tests. Like, 8^th grade me got higher on the SATs than most of the high schoolers taking it to try to get into college. In 10^th grade I sat the physics subject SAT on about a weeks notice and one hour with a study guide, and I got an 800. I passed an AP test for a class I never even took. (US History, in case you were wondering.)

I'm still cognitively disabled. Folks tend not to get how that works until they watch me crying over an attempt at organization, or FAFSA, or other bureaucratic paperwork, or maybe it's a personality multiple choice test that doesn't have an other option and no I can't just choose one they are all wrong so I just have to exit out of the whole thing. Yes, I mean those buzzfeed sorts of quizzes people my age seem to like to take, though surveys sent by my school and FAFSA applications have both done this to me too. Probably about half of my attempts at those end with me melted down and the quiz not actually done. Maybe it's a particularly open-ended assignment at school where the teacher is refusing to limit my options because it's supposed to be open-ended and I'm trying to explain that if they don't limit my options I can't do the assignment at all and for goodness sake limiting my options on an open-ended assignment should be a reasonable accommodation. Tell me what I am supposed to do and there is at least a chance that I can do it. Tell me the point is to give me options and I will look at the assignment and have no clue what it is that's even being asked for and therefore come up with nothing. Heck, give me a list with a note at the bottom saying that the list isn't exhaustive. I mean, I'll almost certainly do my project on: 1) Something from the list, 2) Why the premise of list item X is terrible, or 3) Why items X and Y from the list have relation Z, but I at least have a project chosen from within the acceptable space of projects.

Back to the point: Obvious coping mechanism doesn't automatically mean help is needed, though offering is nice and I swear I won't be mad at you for offering me help. [If I say I'm fine and then you insist on what you think is helpful anyways, especially if it involves touching me or my things without permission, I will be mad.] Asking for help means there is a big freaking problem and if you don't help on the basis of “you should be able to do this” then I probably think you are terrible. If you're not sure what it is that I need, you can and should ask, because I know that my needs seem a little incongruous with other abilities. I'm totally willing to explain what help I need, as long as you're not going to then tell me you won't do it because then I won't learn or some such nonsense. That is a thing that people have done, as is worrying about me/talking about this worry behind my back because I asked for help but not actually providing the help (why would you ever do that?)

And yes, I've gotten pretty good at explaining what it is I need from those occasions where people are actually willing to provide said help. It's still more energy than most other people are spending, because the explanations take energy and the way I do the things with supports are often still more draining for me than they are for the folks who think it's “simple.” That's a kind of tired that I've learned to calculate for, because it's reality. It's just when I manage the request and the explanation only to not get the help because of some idea of what I should be able to do that I'm stuck, because I can't exactly calculate for “have to do things I am not capable of doing.”

Travel, tiring but good this time

I had another travel thing with my class last weekend. It was to Beijing, for Thursday-Saturday, and it was tiring and also a break in my routine. BUT! It was a lot better than the one in November.
You can at least partially tell that it was better because I dropped off the face of blogging for less than a week straight over it, as opposed to missing a decent bit of a month and having NaNoWriMo fall apart. (NaPoWriMo, sadly, did get lost to the tired, but there's always next year.)

I know part of it was that this was a shorter routine break and I had fewer sensory overload issues on this trip. But there are also things that were different in how my teachers and I handled the transitions. Those are probably useful to talk about, considering that I figure most folks reading here have some sort of connection to autism. (Wasn't this supposed to be a personal blog? Oh yeah, it is, and then I went and perseverated on autism so like 2/3 of my posts or more are autism-related.)

Anyways, here's some stuff I did differently:

1. In November, once I got back I didn't realize just how off-balance I was so I tried to keep working like everything was normal. This time I knew that I was going to be off-balance and didn't really even try to speak out loud in class beyond really basic stuff for the first couple days. I typed instead, and I sent what I typed to my teachers in an email after, which they accept as an alternative to my speaking in class when speaking is an issue. 
2. In November, I didn't take a rest day until I'd actually melted down... multiple times. This time, I took the day that was meant to be used for social survey stuff and made it a rest day instead. 
3. This time around, I just went straight to sitting on the floor in a corner in class as soon as the chair started being not-good. 

Now here's some stuff my teachers did differently, both on the trip and after:

1. In November, they also changed up teaching methods and tutors between leaving for travel and coming back. That meant I wasn't even coming back to the same routine I left. They made no such change this time.
2. They planned a bit more down-time into the trip, in the form of "free" time that I spend recovering from people and routine breakage and people. Yes, I know I said people twice. In November, we were spending basically all waking hours with people and that was kind of terrible. 

Some Chinese stuff because yeah...

Have some stuff from Chinese.

First thing is a short essay about "So, culture changes with time and it can totally survive in the midst of some parts changing. This has actually been happening since forever." My examples were Ancient Greeks getting pissy about writing making it so people can read stories instead of having to listen to them but wait storytelling didn't actually die, USA people getting pissy about how newspapers mean you can read on the train instead of talking to people but hey people actually do sometimes talk to each other on trains, and modern Chinese young folks using the internet to send new years money to their friends as a thing that's happening in addition to the traditional way. 

有人说如果传统文化有改变，传统就不存在。不可否认的是，如果有改变，找跟以前完全一样的就会变难。但是，文化从旧一直在改变。（人们也一直在抱怨文化的降落。）拿古代的希腊来看：他们开始写字以前，人们都必须记住故事，不能读。他们开始写字后，很多专家抱怨，说人们都会忘记怎么讲故事，会忘记自己的文化。事实上，很多人开始读故事，也有很多人继续听别人讲故事。他们的文化在改变中还存在了。在拿报纸的例子来看。报纸变流行以前，人们在火车上都看窗户外的风景或者跟别人说话。报纸开始流行的时候，很多人抱怨：“人们都看报纸，停止跟别人说话！”事实上，在火车上看报纸的人不是从前说话的人，而是看风景的人。在火车文化在改变中存在了。最后，拿红包的例子来看。从前，人们送真正的红色的包，里面有钱。现在，父母送给孩子送的还是具体的包，而还有成年人送电子红包给朋友。文化改变了，而主要内容（父母送红包给孩子）存在。文化在改变中存在了。如果我们只看改变的部分，我们会以为文化就没了，而社会一直在改变，科技一直在进步，文化一直跟着社会和科技变化。如果我们说一点改变让我们的传统就没了，就是说谁都已经没有什么文化。

The second thing is me attempting to explain some confusion I was having with an assignment.

现在我要介绍一下我在什么方面糊涂了。（写的比较乱是因为思路也乱。如果我自己不糊涂，能写的清楚，就不需要帮助！）

周三是社会调查。（OK了，我知道是做跟社会调查由关系的。。。而根本是什么？-现在知道了，而知道真的是给我感知矛盾的答案不是解决矛盾。只告诉我“这一点不是解决矛盾的一点。”）这是因为：周三没有单班课，单班课的老师可以陪我们去问，所以去问的天不可能是星期三。而星期三是“社会调查”的天。矛盾。（感知矛盾是个问题。）

社会调查具体内容。背景调查：信息是从课的内容来的吗？就不算是调查。要搜索吗？不一定算是调查，而这样做过。为什么搜索已经写过的题目？是要在路上问别人？:( 如果这样的话，就面临下面的问题。我有三个不同的方式来明白这部分，三个方式都包括问题。

B。，C。部分明白了，就要记住这些问题，然后。。。去问别人。等一下，我应该在路上开始跟很多不认识的人开始谈自己介绍的题目，方式是开始问问题？！成绩的50%靠这个能力？！“囧”不够强。我就去桌子下躲起来。。。这部分是“我知道我要做什么，而不知道什么方式让我做得了。”

Education and services, by Autistic people, for Autistic people.

You can thank Emily's (Mosaic of Minds') recent tweet for inspiring this post. She asked about what autism education and services designed by autistic people would look like. I'm autistic, I have opinions on what parts of this should look like, and I'm answering!

The first bit I want to say is relevant to the tweet I made pretty much when I saw hers:

There'd be supports for executive functioning issues that also allow for the decision of "I'm not doing this right now."

That's got two main parts in it- executive functioning supports are important because a lot of autistic people have executive functioning issues. I know I have them. For me, it means I'm really bad at independently switching from one activity to another. If I'm writing, I'll probably be writing until interrupted or distracted by something. The same thing goes for browsing the internet, playing games, reading, and pretty much anything. An Alyssa in activity stays in activity until acted upon by an outside force. Noticing that I'm hungry or thirsty is less likely to happen during activity.

Given those issues, it's a really good idea to have someone who can help give me the push to switch to doing a different thing. This is where allowing for the decision of "I'm not doing this right now" gets important. Sometimes when I get interrupted, it's not actually a good idea to switch things. Maybe I'm in the middle of a breakthrough. Maybe I just don't want to do the other thing right now and know it can wait a bit longer. Maybe I don't have the energy to do it as well as it deserves to be done. Maybe I don't have the idea for the thing yet. There's a lot of reasons that I could not want to switch to a given activity right now, and while I need help initiating the switch, I also need to be able to say "I'm not switching right now" or "I'm not switching to that right now." That's both for practical reasons and for autonomy reasons. Disabled people should have the same autonomy as everyone else, which in the case of students generally means the ability to choose not to do the homework and take the consequences of that. It also means the ability to choose to talk in class/not pay attention and take the consequences of that.

Teachers would actually know that most autistic people have sensory processing issues. One of my aunts works in a classroom that has quite a few autistic kindergartners, and she didn't know that after working with a couple years of these kids. (Which kids changes every year, like usual kindergarten.) Um. How did no one tell you this? I'm not blaming her for not knowing, because you can't know stuff if you've never encountered it and no one teaches the teachers this stuff it seems, but, um, the fact that she didn't know is worrying. So: teachers should know that most of us have sensory processing issues and that most of us have some sort of movement/coordination issue.

They would also quit it with the idea of fading supports for its own sake. Some people need certain supports and fading the supports that allow us to do stuff for the sake of "independence" doesn't actually end with us being independent. It ends with us not being able to do the things. Along the same lines, they'd actually believe the words "I can't do this." I talked about this about a year and a half ago under the title "Presuming Competence." Neurodivergent K wrote about it too, with examples and everything. It's important. And like K and ischemgeek both, if it can be outstubborned, I'm probably going to outstubborn it. You might not even know that there was a problem, because I am very good at outstubborning things. I've gone to the ER with injuries where the doctors were talking about prescribing the higher-power opiate type pain-killers and left with only the antibiotics I needed for the fact that I got bitten by a pig. I then proceeded to go to an agricultural fair and walk around and go on rides. My teachers knew I got injured, but I didn't miss any school and I was never late to class and I actually started riding my bike to school again later that same week. I am very good at outstubborning things. But that doesn't change the fact that there are some things I can't do. I don't start asking for help until well past when I need it, because it's always this reaction that I should be able to do it, but no. It does not work like that. I ask for help because I need help.

And communication. I can usually do verbal/vocal language. That's different from being able to get my needs met that way. Teachers would be aware of the difference between "fluent in requesting" (thanks Julia for letting me know it just means the ability to use the "I want _____" structure, which I can do) and actually being able to ask for things that we want or need when we want or need to. Of course, if autistic people designed the system, we'd probably have given a different descriptor to the ability to use that linguistic structure because that's not what fluency generally means. Dump the terms that are kind of doublespeak. There's already far too many of them in disability/autism services/care type stuff. 

Also along the lines of communication, alternative and augmentative communication is really important. That's things like picture cards, text-to-speech, eye-gaze tracking, typing, and more kinds of things than I could pretend to know about. For me, typing on a typical keyboard and then having a text-to-speech function is enough. But for some students, it takes a lot of trying different things, and it takes knowing that even if the skills we think of as prerequisites aren't there communication can still happen. (A lot of the stuff people think of as prerequisites for communication devices are actually learned really well by trying to use the devices.) Pretty sure the writer of this wasn't autistic, but it's a good post and makes the points I want to about choosing types of AAC.

The other AAC thing, which ties back in with "knowing the structure doesn't imply always being able to communicate the thing," is that even people with oral speech can benefit from AAC. Speech goes kaput on me sometimes. Other times speech is mostly working but it's hard enough to initiate the interaction that way or ask for what I need that way that it's really a much better idea to type. Certain kinds of thinking I can't keep up while also saying the words I'm thinking of in real time, but I can sometimes type the words in almost real time. I'm actually a really good example of someone with lots and lots of communicative oral speech who still needs AAC because I can't do all the things I need to orally.

I'm sure there are more things I'd think of given time, but my brain is tired now and this is long enough for one post I think. So here, a start on "how one autistic person would design/change autism supports and services."

Languaging Differently

This is a thing I was thinking about, after my fun times with my teachers saying I don't use formal enough language when I write and speak in Chinese class. I'm actually way more formal in my writing and oral reports for Chinese than I ever was in classes conducted in English, since our classes have basically been “here have more formal words and here's how to use them” for the last few years. That said, I'm still nowhere near as formal in my speech as my classmates. I've been studying the language for sometimes twice as long, and I'm definitely more fluid with the words I'm comfortable with, but formality? Ha. That's basically not a thing.

 

And here's what I realized:

 

People still think I'm a good tutor and a good teacher. They do. In fact, what they usually say is that my explanation was the first one that made sense to them. Now, what's different about the way I explain stuff? Oh, wait. It's that lack of formal language again, isn't it? Yes, that's right, the same thing I'm getting in trouble with in my Chinese classes, the same thing that's gotten my essays marked down since at least the seventh grade? It's what makes me a good teacher.

 

Now why are we trying to change the weird language usage that makes me a better teacher? What is the advantage of changing it?

I've heard several things from teachers who are trying to change it.

 

“No one will take you seriously if you write like that.”

“It's not formal enough.”

“You need to learn to code-switch.”
“The words you're using are too simple.”

“Your sentences are too simple.”

“What will you do when you're writing about complicated things?”

 

Here's the thing. I have written about complicated things. I've used the technical terms when they make more sense, and I've used simple words when they are better words, and it works. Isn't the sign of a good teacher that they can take a complicated thing and make it simpler? Make it make sense? It seems to me that using simpler words to the extent that we can is a better idea, if the goal is to make people understand instead of being to show off how much you know.

 

My sentences aren't always simple. Sometimes they are. I don't understand why complicated is an end in it's own right, so “too simple” is something I'm just going to keep throwing out.

 

I do have some ability to code-switch. It's not much of a much, but it exists. I need a reason to use this ability, though. I'm not going to tire myself out code-switching for no good reason.

Formality is a social expectation. It really is. As such, if it has negligible effect (or maybe even helps) with functionality, fine, I'll go with it. When it actively impedes function, that's not cool. In this case, demanding formality does, in fact, actively impede function. It does this in multiple ways.

One is that it makes it harder for me to communicate the meaning I want to communicate. Sometimes that's because the more formal word doesn't have the same shade of meaning the less formal one does. Sometimes that's because I just can't think of the more formal one. Sometimes it's because nitpicking my vocabulary slows down my ability to come up with sentences to the point that my brain is way ahead of my speaking or writing and then I lose track of what I'm thinking. This leads to The Sads.

The other time formality causes a problem is when I'm teaching. A good teacher explains things in ways that their students will understand. That's not the same thing as explaining in the most formal way possible. In fact, my experience as a tutor and teacher tells me that those things are often opposites. The simplest, most conversational explanation is the one that my students tend to understand. At that point, yes, formality is impeding function. That means formality needs to go away.

 

Finally, the first reason. “No one will take you seriously if you write like that.” Is this my problem? I'd argue that it's other people having a problem with the packaging of an idea and therefore ignoring the idea itself. I'd also argue that it's a load of nonsense. If it were true, I wouldn't have readers who take my writing seriously. I certainly wouldn't have had a blog post of mine cited in an academic journal. I wouldn't be presenting at conferences and workshops. I wouldn't be getting pieces accepted in books. I am getting taken seriously while writing like this. I'm getting taken seriously by people who realize that not everyone is going to write the exact same way, and that that's fine. I'm getting taken seriously by people who care more about ideas being communicated than they do about how smart I can make myself sound while in the writing.

I really don't care how smart I can make myself sound in the writing. It's not the point. I care how well I can get the idea across. If my natural mode of speech and writing is one that works well for teaching beginners (I'm going to take beginners words for it over that of “experts” who might say it doesn't work,) I'm hanging on to that. I don't want to be the person who learns the fancy codes and finds that they've lost their personal voice. I don't want to be the person who needs to be re-taught to use words people know.

If the way my brain tends to bounce off jargon-heavy and meaning-light writing makes it harder for me to write that way and then I keep writing to explain, I'm honestly OK with that. (I'm fine with technical terms, but when they are strung together in ways that don't mean much or when the terms themselves are too broad, my mind starts bouncing. Academic papers tend to be bad, even when I understand the concepts. Being written by someone whose first language isn't English is generally OK- some of their issues are similar to my own, even. Not always picking the word that best suits the situation, even if the meaning is right? They'll do that, and I'll do that.)

Handwriting: Not for everyone

So I pulled up some old notes from my iPad about NCIE over the summer. Specifically, I pulled up some notes from a session about Universal Design for Learning, which is a cool thing. People should be doing more of it. It's important. Not everyone learns the same way, and making sure everyone has at least some things they can do to learn (and that it's OK not to be able to do all the things) is a Big Deal.

Warning for school stuff and ignoring/invalidating access needs

So here's relevancy from there in case you didn't feel like looking at the notes.

"I want all students to write because that's what gets assessed on those horrible tests." NO. You want to change those tests. I'm sorry, no, you're talking about universal access, do it for real. Handwritten thank you notes can be an access thing. Not everyone can learn to handwrite. It's just not possible.

I don't honestly remember if the person giving the presentation said this, or if another person in the presentation said this, or if it was getting criticized. Just so everyone is clear, I have no clue 
who I am criticizing. Which means I'm criticizing the sentence "I want all students to write because that's what gets assessed on those horrible tests," and that's really it. Well, I'm doing it talking about universal access, since I'm doing it in the context of a presentation about universal design, and I'm going to be talking about disability, but there's no person attached to these words.

"I want all students to write." From the context I have, the meaning was "hand write." This actually is a problem. I know, there will be people who bemoan the "death" of handwriting, but a lot of the people who are now not hand writing at all are people who couldn't have done it legibly before. So all that's changing is the thing being complained about: illegibility or the decision to do something other than writing by hand. Wanting all students to be able to write by hand is already not being universally accessible. Some students can't do it because of CP. Some students can't do it because of other motor issues, like not being able to hold a pencil/pen properly, dysgraphia, etc. Some students can learn to do it properly, but it's so much effort to hold the pencil or pen properly that they can't also come up with new and creative words at the same time. Some can write without pain, but if you think anyone's going to be able to read what they wrote after... yeah, that's not going to happen. That's where I am, by the way. I got banned from handwriting my math homework a couple times, because my teachers couldn't read my handwriting. I can't always read my handwriting, honestly. If you want to see what it looks like, here. This is the typed up version.

So there's where I'm coming from as the main reason it's bad. I don't much care why you're trying to make everyone do a thing that not everyone is capable of. Not sorry, I don't care. Don't force the kid to do a thing the kid can't do. Go advocate for accommodations on "those horrible tests." And yes, the tests are bad. I did well with them because I read fast and can bubble things in and can use the test to take the test in many cases, but that doesn't make them good. It just means that they lined up pretty well with my specific set of abilities. Universal design means making sure enough of the tests line up with the students abilities that they can show what they know and pass. Don't break your moral of universal access because someone else doesn't get it. Go demand accommodations. The ADA is your friend here.

Someone must have mentioned handwritten thank you notes. I had to do those after my Bat Mitzvah. It was not fun, largely because it had to be legible. Ha. My handwriting. Legible. That is not a thing that happens, so it took obnoxiously long and it actually got painful because trying to make it legible does start hurting after a while. If typing thank you notes is an access need, you type those thank you notes. If a word processor not connected to the internet (heck, a text editor with no spell check on a computer not connected to the internet) is what you need to use for your essay questions because it's an access need, it's what you do. It's the ADA and IDEA and whatever else, you sue people if they try to tell you that's not a reasonable accommodation. It is. Yes, try to teach writing by hand because it's useful, but if a kid can't do it, accept that. Seriously.