Saturday, October 26, 2013

Going Home and Crashing

I got asked a question, I got asked a question! (Picture me doing a little dance and singing that. I'm a tenor second, long brown hair in a braid, brown eyes, glasses, roundish face, if you feel like being accurate in your picturing.)
No, really, I like answering honest questions.
Anyways, from Traci in the comments on Functioning Labels:
Honest question - what is it about coping with social situations that makes you go home and shut down. Is it an emotional reaction to feeling that you might make mistakes and be judged because of it, is it simply exhausting to have to try to function in such a challenging environment, is it a cultural message that if you cannot function adequately (I have no definition for adequate) in that kind of setting that discourages and defeats your ego. Several people in my family are introverts who react similarly whereas I am an extrovert and I probably don't really do the whole social cues thing that much better than they do but it doesn't leave me feeling distressed to the same degree. I am trying to understand and learn more about autism.
Hi Traci!
I'm pretty sure all of those things are part of it to varying amounts, and I think that "interacting with people takes energy, regardless of environment or desire" needs to be part of it. I am introverted, I think. Not all autistic people are, but I think I am.
Point by point, each piece and how I think it is relevant.
  • An emotional reaction to feeling that (I) might make mistakes and be judged because of it.
    Well, more knowing that I will. Because I will. Judgement varies, my friends tend not to care, some family members do, some don't. Strangers I usually have no cares to give as to what their judgement is because social interaction is tiring. Since this is a crowded gathering, I assume there is at least one person there whose opinion I care about. If not, I just wouldn't go, because these are exhausting. I think this one only comes into play with the kinds of gatherings where I am expected to fake neurotypical, since I'm actually pretty good at Autistic-style social interaction. Among other things, we count "parallel play" as totally being socialization. I'm not sure why you neurotypicals disagree. (Jokingly threatens behavioral therapy to make you get it. But I wouldn't actually do that because it's not ethical at all.)
  • Simple exhaustion from trying to function in such a challenging environment.ALL THE YES. No, really. This is huge. At the noisy, crowded gathering that I mentioned, I can tell you 100% that I am experiencing sensory overload. After presenting at a conference recently (Debilitating Queerness, specifically,) there was a dinner at the home of an organizer that was open to presenters. I went. I had a good time, mostly, but that place was loud, and it was crowded, and everywhere was people, and I have trouble focusing in on one conversation and tuning out the others, and I was already tired. I... actually crashed at the party. Like, a complete crash, fell asleep there and everything, and it took my friend about 10 minutes to wake me up so I could leave. It was that exhausting. Other things I need to worry about at parties include finding food that I can eat and something that I can drink. Sensory issues can make that harder too, since I can't drink anything carbonated, scrambled eggs are a texture issue, and anything minty is a nightmare. (Oh, and did you know that people like to have minty breath at parties? AAUUUGGGHHH) Seriously, this is an environment that would exhaust me even without having to handle social interaction.
  • My addition: Interacting with people takes energy, regardless of environment or desire.It takes less energy to interact in an Autistic fashion than to try to interact in a neurotypical fashion (I can use gchat, Facebook chat, Tumblr, and similar things with much less energy expended than I can for going to a party. Talking to one person face-to-face is somewhere in the middle, phones harder than face-to-face but not as hard as a party, generally. Though if it's an Autistic party, the party is going to be easier than the phone. But regardless of exactly how I am interacting, the energy needed is not zero. Use too much energy, and when I get to a place that it is safe to crash, I will. Use up too much beyond that point, and I may just crash wherever I am. 
  • A cultural message that I can't function adequately in that kind of situation that discourages and defeats my ego.That message it out there, but I grew up with the people around me generally not knowing that I'm autistic, so I didn't get all that much of that message. I get it online more than anywhere else, and it tends to send me into angry tell everyone why they are wrong and exactly how they are hurting people mode. Which is a tiring mode to be in so I shut down afterwards, but it's not the message itself directly shitting me down. The message I got tended to be that I was able to do it and that everyone knew I was able to do it (only half-true. I can do it for a limited amount of time and then crash,) so I was just being bad when I crashed. Or people were just confused. It depended on who I was with. But the message I got was more that I was bad because I didn't care enough to do it than that I was broken because I couldn't. Neither is true, of course. I can for limited amounts of time, then I'm done, and that's OK. 
In order of smallest effect to greatest effect for the crowded, noisy gathering that I referenced in the functioning labels post, I think that it would be the cultural message, then the fear that I will be judged, then the fact that interaction is tiring, with the environment as the biggest thing. Dealing with my teachers, the cultural message is still smallest, but the environment is almost as small, and then interaction being tiring is a thing. The fear of messing up and being judged is the biggest one there, since teachers actually have the ability to mess things up for me and some have tried (not recently, but that's not the kind of thing you forget.) Hanging out with a few close friends, the interactions being tiring one is basically all that is in effect, which is why I last much longer with them than I do in basically any other social situation. It helps that they know I'm autistic and don't much care how autistic I act. When I told them I had finally gotten an official diagnosis, some of my good (high school) friends reacted with surprise... at the fact that I hadn't had one before. It wasn't a big deal to them because they liked me for the person I am, and I am autistic.

Wednesday, October 23, 2013

On Failing Kindergarten

Reprinted from Yes, That Too

Trigger Warning: Quiet Hands

In my token Autistic speech (yes, I would replace my approved presentation with that at the last second if I thought I was being used as a token, BE WARNED,) one of the things I mentioned was that I would fail special needs kindergarten. (I was mainstreamed and there wasn't an issue.)
You see the posters of "proper listening" in your child's classroom? I can't do it. I would, legitimately, fail your child's kindergarten special ed class, today. I am not even joking. They would hold me back and I would be the adult who couldn't even pass kindergarten.
Despite my statement that I wasn't joking, I doubt you believed it. Maybe you thought I was exaggerating?
I wasn't. Here's a poster of the kind I'm talking about:

Image description: A poster with heading "Whole Body Listening!" and subheading "Larry wants to remind you to listen with your entire body." There is a picture of a young boy on the left, and on the right there are things to be done with each part, next to icons representing that body part: Eyes=Look at the person talking to you, Ears=Both ears ready to hear, Mouth=Quiet-no talking, humming, or making sounds, Hands=Quiet in lap, pockets or by your side, Feet=Quiet on the floor, Body=Faces the speaker, Brain=Thinking about what is being said, Heart=Caring about what the other person is saying.

And now, here's why I would fail special needs kindergarten:
  • Larry wants to remind you to listen with your entire body: UM. NO. One listens by using the brain to interpret and pay attention to the information coming in from the ears. My hands can't listen. I am a literalist, and I would bring this up. I actually knew that when I was the right age for kindergarten, too. So there's that.
  • Eyes=Looking at the person talking to you: As long as the general area of the person is good enough and they don't demand that it's actually their eyes, I can manage this one, usually. Enough to have managed in mainstream classes where they aren't always focused on it, but probably not enough for a special needs kindergarten where it's one of the big focuses. (Look, look, look!)
  • Ears=Both ears ready to hear: Not an issue, generally, but I haven't the foggiest how they assess that one. You can't look at my ears and tell when they are ready to hear or not, and sometimes being ready to hear and understand requires covering them to reduce the volume. Which they would probably consider not ready to hear.
  • Mouth=Quiet-no talking, humming, or making sounds: As far as I go, that works fine. I could do that when I am supposed to be listening. That's like, the only one which is easy to verify that is not an issue.
  • Hands=Quiet in lap, pockets, or by your side: I can't do that, and I have better things to do than waste time and energy trying. It's also abusive to demand it. No, really. Go read Quiet Hands. But as far as I can't do it goes: I'm in college. I still can't do it. I have to doodle or something. Sewing, knitting, or making chainmail seem to work best, since I don't have to think about what I'm doing with my hands and can still participate in class discussions. And yes, people tried to teach me not to do this. It didn't work. The worst I ever dealt with as far as quiet hands in class was probably the time in Hebrew school when my teacher kept confiscating whatever object on my desk I was fidgeting with. In the end, she took my pen. Yes, really. A teacher took away my writing implement in class in an attempt to get me to sit still. Obviously, it didn't work. There was a string tie on my shorts, and I played with that instead. She threatened to cut the strings off, and I told her she'd be buying me a new pair of shorts if she did. She did not make good on her threat.
  • Feet=Quiet on the floor: I can't do that one, either. I rock my feet, jiggle a leg, or sit on my feet. Or I W-sit. Yeah, I'm a W-sitter. Yes, I still do it. No, I don't have problems from it. People never made a fuss about that one. I didn't even know it was "bad" until one day in speech therapy when the therapist made comment on it. (I had trouble with the "r" sound for a long time. Actually, I still do. I just learned how to make the Chinese "r" sound and no one notices the difference so I use it all the time.)
  • Body=Faces the speaker: I can do it, but I don't understand the point. This one wouldn't be a direct contribution to failure, though, since, you know, can do it.
  • Brain=Thinking about what is being said: Ok, yeah, that's a thing. I can do it. One problem: There is no way for an educator to check if this is the case.[No, really. Testing me later with something written tests memory, putting me on the spot tests languaging on demand, there is no test that only checks if you were thinking about it at the time and can't be spoofed by thinking about it later]
  • Heart=Caring about what the other person is saying: MY HEART DOESN'T CARE ABOUT THINGS. My brain does. I will now proceed to be distracted by this issue because I am autistic and technicalities like that bother me. Whoops. Also, it has the same issue as brain.
That's eight body parts we're talking about. Three (ears, brain, heart) aren't actually checkable by educators. One I can do, but it 100% irrelevant for me (body.) One I can do, but it is easier not to and I listen better when not worrying about it (eyes.) Two are completely impossible for me to accomplish (hands, feet.) Even without having to worry about listening as well, I can't do them. And one, only one (mouth) is actually a useful thing that people can check for.

We've got eight bullet points, only one of which is a thing you can check that is important for my ability to listen, so this isn't exactly the epitome of helpfulness. And three of the things are actively bad, are things where if they were to be part of what I get evaluated on, I would fail. You thought I was exaggerating when I said I would fail special needs kindergarten? If I couldn't use my articulateness to type my way out of it, that would be exactly what happened.

Tuesday, October 15, 2013

Why I’m still disabled, even though I’m brilliant (or so people tell me)

by Chavisory

There’s a dynamic that occurs a lot in conversation, mostly with family, when I have to try to explain why I can’t just go do some given thing…a thing that I might or might not want to do, a thing that might make me more money, a thing that might be advantageous to my career or quality of life…because I have a communication disability.

In these conversations, people say, really often, something along the lines of “But you’re brilliant—you could do anything you wanted to!”

Here’s the thing:  being brilliant and being disabled are not mutually exclusive.  You can be intelligent, and still disabled, as well as disabled, and still intelligent.  Here’s why.

1.  My brain works really differently from most people’s.  That doesn’t change no matter how smart I am.

No matter how smart I am, my hearing works differently than yours does.

No matter how smart I am, the way I process speech and language is totally different from yours, and so speech processing is hard.  (Unless I’m talking to someone whose speech patterns are very similar to mine.)

No matter how smart I am, I have to translate all incoming verbal information into the non-verbal information that I can understand, and translate it all back in order to have a conversation or discussion.

Being smart in certain ways means that I can do that fairly quickly and accurately.  Being disabled means I still have to do it.

No matter how smart I am, it is physically difficult to carry out some of what most people consider basic interpersonal activities, and it’s near physically impossible to do that at the same time as actually thinking or absorbing information.

No matter how brilliant I am, sensory overload can paralyze my ability to think or speak.

Being smart means that I can usually identify the patterns of exactly how and why things don’t work for me the way they work for other people.

Being disabled means that I can’t just work the way other people expect me to, no matter how much they expect it.

2. Yes, I’m smart enough to come up with workarounds.  But they have costs.

Being smart means that I can usually figure out for myself how to do the things that I was never taught to do, that I can usually come up with a workaround or a cognitive detour for the things that I can’t do the same way everyone else can do them.

Being disabled means that I always have to be doing that.

It means that almost nothing that non-autistic people take for granted being able to do, ever becomes truly natural or easy.  And even if my neurology confers some abilities and benefits (which it does) …non-disabled people still expect that the things that are easy for them, are easy for you, too.

I have an impressive range of adaptability…but not an infinite one.

I have to constantly be doing calculations about whether, in any given situation, I will be able to communicate what I need to quickly and clearly enough to accomplish what I need to.  Whether that’s coordinating the activities of an entire production team, or ordering a cup of coffee.  (Depending on the variables involved…sometimes ordering coffee is harder.)

And exercising that flexibility, going through those calculations, coming up with those workarounds, and constantly using them, has high energy and cognitive costs.  Even if it means I’m more able to do everyday, expected things, it draws energy from other things that I need and want to be able to give attention to.  It takes attention and cognitive bandwidth away from my natural ways of processing.  That, in turn, causes my natural talents and abilities to suffer.

Recently I was explaining to a friend how, as a child, I had a near-perfect photographic memory.  It was so good that I didn’t have to “study,” because I could take mental photographs of textbook pages or blackboard illustrations and simply read off of them for tests.  It’s suffered as I’ve gotten older, and what I strongly suspect happened is that, as other things I needed to be able to do required greater conscious and deliberate real-time processing, my brain simply couldn’t spare the immense “storage” space that that visual memory was taking up anymore.

Ariane said, “So in some ways, as you’ve gotten more able, you’ve actually gotten dumber?”


I can deal with a lot of what’s physically and emotionally hard for me, because I’ve purposely developed the tolerance, discipline, and cognitive strategies to, over many years, but it still takes energy and effort to do, that is energy non-autistic people are not spending on the same things.

3.  There are externally imposed barriers and obstacles that have nothing whatsoever to do with my intelligence, or my work ethic.

There are expectations of other people that don’t line up with what I can and can’t actually do, that are allowed to supersede my freedom to actually do what I’m supposedly being asked to do.

There are workplace conditions that physically limit my ability to function.  Fluorescent lights, lack of natural light, rooms that are too acoustically reverberant, with too much random noise, environments that are too chaotic, with too many conflicting expectations or fragmented demands on my attention, requirements that I dress in a way that mean that I can’t function physically (this can be as simple as a requirement that I wear a specific t-shirt with a collar that’s too high or too tight) because they’re so distressing or distracting, supervisors or managers who give constantly ambiguous or vague instructions, demands that I learn in a way that just isn’t how I actually learn.

There are systemic, widespread, pervasive, financial, bureaucratic, economic, and geographic barriers to things that I can’t individually make disappear, no matter how smart I am. 

High SAT scores aren’t exchangeable for systemic fairness and accessibility.

Being very good at trigonometry, shockingly, does not make clothes shopping or getting through airport security lines easy—because those things impose totally different demands on my abilities, that have nothing to do with my IQ.

There is prejudice, bigotry, and discrimination against the disabled, and it has real, concrete consequences for how people are treated, even when your disability is invisible.  Sometimes especially when your disability is invisible, because the people with those attitudes think that their prejudices don’t really apply to or impact you.  Those attitudes have consequences for whether you can get what you need, when other people have some kind of control over your environment, to do what you can actually do.

4.  There’s a lot more to human ability than intelligence.

There’s innate talent—which still requires time, work, and resources to nurture and develop.  There’s natural interest, passion, curiosity, motivation, personal priorities, and intuition (which I think may actually be the most important).  There are many different kinds of intelligence—I don’t even think that Howard Gardner’s multiple intelligences theory really captures them all—and they aren’t interchangeable with each other.

This is true even for non-disabled people; why wouldn’t it be true of disabled people?  I mean, why don’t you just go be a rocket scientist, neurologist, cinematographer, or run for public office?  You’re non-disabled, after all—you should be able to do anything you want, right?

Of course not; it’s far more complicated than that, in ways you probably can’t even explain.  Why would it be less complicated than that for disabled people?

Being disabled doesn’t mean that I can’t do anything real or worthwhile or maybe even profitable (one of these days).  It means that some things, that most people take for granted, are harder or impossible for me.  And I have to take those things into account and think realistically about how they impact me, in order to figure out what I can do well, and sustainably.

I think that’s its own kind of intelligence.

Saturday, October 5, 2013

Homework. How do I?

This is reprinted from Yes, That Too because it fits. The title is different.

Trigger Warning: Uh. I got triggered while writing it but am not sure what warning to give. School stuff, generally related to teachers mistaking the results of executive dysfunction for other problems and acting on that mistake?


I read the shoes post. If you don't know what post that is, you should probably go read it now. No, really. Go read it. Now.
The whole thing is important. But what I'm thinking about right now is mostly the executive functioning stuff. Because that's a problem I have too. 
She even told my mother that she wouldn't let me read at my level until I had nice handwriting.
That's one thing I was never told, though I did get banned from handwriting my math homework twice. I was told that I couldn't get math classes that were appropriate to my level because I needed to learn to get organized. It doesn't work like that. Keeping me out of work that I can do doesn't make aspects of my disability go away. It just doesn't. Never did, never will. I'm not going to magically gain the ability to do daily homework because I'm suddenly in an easier class, or fewer classes, or whatever else.
I had no trouble whatsoever grasping the academic content. It was not a challenge. Getting the work done was because the attitude was still "if you're so d*mn smart just do it, god, what are you stupid or something?"
I've been there. I've been there so much it's not even funny. No one said it in exactly those words, but I've been there. Usually I was lazy, which isn't true, bad at time management, which is kind of true but doesn't get at the root of the problem, or doing too much, which has sometimes been true but also wasn't the problem. The problem wasn't that I had too many other things I was trying to do. If that were the problem, I could have done my homework fine in sixth grade, when literally all I had other than school was Hebrew school for two hours three times a week. I still had problems. I got caught with homework for other classes under my desk fairly regularly in sixth grade. In seventh grade and later, I was just better at hiding it. I think eighth grade is the last time I got properly caught (I'm not counting the times that it was knitting or chainmail done openly and the teacher didn't like it, because that's not executive dysfunction. That's can't sit still well/coping mechanism for auditory processing stuff.) My record for most homework assignments completed between getting on the bus to school and the end of the day? Seven. All five "core" classes- math, science, social studies, English, Chinese, plus drama and an after school extra math class I was in because my school wouldn't put me in my level of math class until I got organized and that's a thing I'm not capable of doing myself. (No, they did not offer any help with doing so or methods I could use. Because if I'm so smart, I should be able to figure it out. Or something.) For reference, my classmate in that after school math class? She spent about six hours per week on that homework, aka basically the length of the school day, during which I went to seven classes and did six other assignments. I was fast. It wasn't always good, but it was done. Usually.
Teachers kept up with the "if you're so d*mn smart why are you so d*mn stupid?" and I stopped taking classes that were academically even a bit of a challenge-no one would help me get set up to do the work, so fine, I can pull a great GPA in classes that I can do actually in class.
My coping strategy was a bit different. My GPA was good but not great. I took classes that I could get done during school hours/on the bus to and from sports, with the exception of the occasional paper that would be done between 2am and the start of school on the due date. I'd go to sleep around 8pm as usual, then get up however early I estimated I needed to and hope for the best. My final exam story for English in 9th grade? Written between 12am and 7am on the due date. My research paper for high school? Written between 12am and 7am on the rough draft due date, not edited beyond the in-class edits we did between then and the final due date. Shorter papers were typically between 4am and 6am on the due date, and I've lost track of how many times I did that.

Now, for the problem. How do you get people to understand what the actual problem (executive dysfunction, I mean) is? I'm not sure. I've never managed it before. Never. In middle school, they didn't understand and so they wouldn't let me get into the classes I belonged in (for math, that would be ~2 grade levels ahead, everything else was to be in Honors/AP which didn't exist in middle school so that part's OK.) Well, except 8th grade when they had a pre/post test and I got higher on the pre-test end than most kids got on the post-test end, so the teacher ran around talking to people and got me an independent study. Which, um, hello? If I can't get my homework done, what makes you think an independent study is a good idea? It was better than properly being in the math class, since I was actually allowed to work on my other stuff during class time and could sometimes even do it, but it still wasn't what I needed. I need outside support of "you are working on this thing during this time" and I need stuff to be weekly at least. Not daily. Daily is a set up for failure.
In high school, they didn't understand the real issue, but there was a procedure for testing out of math classes and the independent study for 8th grade made it clear to everyone that I should be looking at that procedure. Also, Honors Pre-calculus didn't check the homework. AP Calculus BC only checked it three times all year, always with warning. I finished two of those three, and none of the others. I think I finished my Pre-calculus homework once? Maybe?
In college, you generally just need to pass the class, and no one gives daily homework, which is basically the bane of my existence. Unless I can get it done in the approximately hour before it's due? Not getting finished. Which is a problem. Bigger projects, longer term projects, I can usually get started sooner by enough to finish them. The week mark is about when I start being able to start stuff with enough extra time to actually finish it, even if it takes longer than an hour to do. I'm still working straight through that final hour, though. I really wish there was an accommodation for executive dysfunction, because goodness, do I ever need it.

Of course, in middle school, in high school? I generally didn't have the words I needed. Executive dysfunction? Sure, I know what that is now. I didn't then. And even if I did have the words? Well, for any teachers in the audience: would you have believed the twelve year old who was telling you that being in easier/fewer classes wasn't going to cure their executive functioning issues? Honestly? Would you? Or would you think they had no clue what they were talking about/they were making excuses/whatever other reason that kids, even ones who actually do know what's up, don't need to be listened to when they're difficult or complicated?

That's what I thought.

Tuesday, October 1, 2013

Screaming into pillows and punching mattresses: Effective ways to express extreme emotions without bothering other people

So one of the most common complaints that parents of autistic kids have is "oh no, my kid is too loud/too aggressive" and "he is hurting my ears/hurting me physically".

I am now 23 years old. I need to scream and punch things now, sometimes. I needed to scream and punch things in third grade, sometimes.

Instead of denying the legitimacy of this way of expression, lets see how people who have these needs can do these things in a safe manner that doesn't bother anyone.

The way I did it and still do it is that when I need to punch something, I punch a pillow or mattress on my bed.

When I need to scream, I scream into my pillow.

When I was even younger, my parents (had the monetary privilege to be able to have) bought an inflatable weighted punching bag.

I punched these things. I punched them very hard.

In regard to the pillow, I can scream into it until screaming is no longer possible.

What purpose do these actions serve? They vent troublesome emotions. They allow the expression of sensations which feel locked within my body screaming to get out.

I think a good alternative to a pillow for some children may be a large stuffed animal to scream into.

This behavior is not problematic as many professionals tell you. It is merely an alternative method of expressing difficult feelings and senses.