Saturday, December 28, 2013


This is reprinted from Autisticook with permission.

Autisticook is a 37 year old woman from the Netherlands who works in IT. In her spare time, she loves reading, doing renovations on her home, and playing with her cat. She objects to being called crazy cat lady but doesn't mind being called a nerd.

It was just after the first exercise in the mindfulness for autistic adults group. One of the women in the group was sitting with her head down and if you looked closely, you could see that she was crying. When the therapist asked her a question about how she’d experienced the exercise, she didn’t respond at all. It was like she wasn’t listening, wasn’t even there. She just kept rocking back and forth with tears running down her cheeks.

The therapist asked if she wanted to be left alone and that, after a slight delay, actually got a response: some vigorous nodding that seemed like an extension of the rocking, but was probably meant as a yes. The rest of the group then continued with talking about the exercise we’d just done.

When everyone else had had their say, the therapist addressed the unresponsive woman. This time she lifted her head, but she didn’t make eye contact with anyone. The therapist asked her what was the matter, and the woman started flapping her hand near her ear, looking very angry. Then she blurted out: “Words!” There was a bit of confusion at that, but the therapist asked if she was having trouble finding the right words, which made sense. The woman replied with an emphatic “Yes!”

In bits and pieces, the story came out: something about the exercise leaving her far too open to all the noises in the room, in the building, and on the street outside, not being able to self-regulate anymore, and melting down. It was obvious she was very distressed, she even used the words “so painful” to describe the sounds. At that, some of the others in the group nodded. They knew what she meant. The therapist asked if the woman wanted to leave, but she said: “Want to try”. So the therapist said we could all take a short break and that the woman could rejoin the group when she felt ready. She said she was going to go outside, and put on her coat. Someone helped her pour a cup of tea to take with her.

Only I noticed the multitude of angry red welts from where she’d been digging her nails into the back of her hand.

Dealing with a public meltdown. Dealing with the pain of sensory overload. Dealing with the stress of having other people, strangers, see you in your most vulnerable moment. Dealing with suddenly not passing anymore, and wanting to hide. Dealing, coping in the only way that’s still open to you: trying to block the pain by inflicting a different kind of pain on yourself.

Unfortunately I can imagine all too well how that feels.

The welts are still visible on my left hand as I’m typing this.

Monday, December 23, 2013

Please Don't Rush Me.

It’s Not Always As Funny As I Make It Be

There is a subfield in educational psychology called risk and resiliency studies, and it is pretty interesting. It is not my field but I keep track of it because the findings of my colleagues here have bearing on the things I do in my work. One of the first things I heard from them which stuck with me is that a major resiliency factor, or something that can what they call ‘inoculate’ you against whatever may happen in life so you bounce back maybe better than you might have done otherwise, is a sense of humor.

For me, I think this might be true. I am a generally joyous person and the fact that things which happen to me in life can crack me up even if they are mostly on the heinous side probably is what keeps me like that.

But this blog, We Are Like Your Child, was created because so many of us who are resilient because of this and similar reasons may seem to people who are not-us as if we are performing “Dancing Through Life” in the musical Wicked. This does not help others relate much in the practical realm, because it is not, strictly speaking, what they call Keeping It Real. (But I still recommend keeping it funny and musical when you are able, because it does help me and my friends bounce back, and also Studies Have Shown.)

Recently I have been having a very hard time with time management, conflicting and equally unhelpful notions of fast and slow that people might get about me as a result of my time agnosia coupled with lateral thinking and divergent communication style, and the catastrophic results of rushing. The hard time I have with these interactions sometimes is probably accurately described as ‘crushing’ or ‘devastating’ even though it is difficult for me to type such emotionally fraught words, just to let you know, because of my natural desire to keep it light… I should just now also report the discovery that when not keeping it light, more pain is experienced. OK: on with it.

In my blog I talk about time agnosia in my ordinary manner. Here are some links. A silly one HERE and this one HERE which is more useful but still light in tone. But if you think about what it really means, you will also find that it is often quite the inconvenient impairment and can create threats to such important things as my job security and my ability to let people know the true extent to which I care about them. In the culture in which I live in the northern part of the US, predominantly organized by “white” heteronormative values, middle class, academic, etc., “being on time” is meant to communicate respect, caring, and a host of other things. Whole virtues such as ‘promptness’ and ‘punctuality’ are built around this concept. It is even part of our construct of ‘reliability.’ This means for me that in the baseline of my normal daily life, there is always thrumming throughout the fabric of everything social a high-anxiety expectation and probability of failure, shame, miscommunication, etc., even though I have a remarkable system of electronic and social scaffolding in place to ward off actual disaster...

Notions of “fast” and “slow” are related to this, for me, and equally permeate my life in hurtful ways. I believe these have to do with time-to-respond, which is not something I am easily able to gauge in myself, but I have seen in interactions among others and also in the way people react to me. Apparently “fast” (or “intelligent”) people respond rapidly and “slow” people (who might be called insulting words and condescended to) take a while. I am both of these alleged kinds of people at different times and in different contexts or activities.

I think that sometimes people expect me to be “fast” all the time because I can be “fast” sometimes and that is what they consider valuable in other people. But it is not possible for me to do this, usually because some of the things expected are areas of non-forte, but sometimes because other circumstances such as migraine or sensory overstimulation are throwing a spanner in my works. In these eventualities, I have experienced people getting angry as if I am doing something wrong towards them and/or doing it on purpose. I do not think this is logical, because why would I do that? But it is what happens sometimes. They might then proceed to try to rush me more. This rushing thing is understandable in a way because the people might believe that rushing someone will make the person speed up. But it is likely to have the reverse effect. More than likely: probable. Rushing is very stressful and actually causes me to be less excellent at thinking, speaking, writing, etc. Or really anything, because I am so busy trying not to melt down about the stress of being rushed that no resources are left open to try to do the thing the rushing person wants me to do more rapidly.

This is what actually prompted this column. If someone you know to be sometimes “fast” is being “slow” or something, especially if they are not the kind of person who does well with time management (so they might be time agnostic like me or anyway to some degree have issues with that) or maybe even if they are any kind of person at all, please try not to rush the person. Being “fast” or “slow” is not controllable at will and being rushed is stressful and counterproductive causing great anxiety and loss of dignity if the person contemplates and notices that you are saying how “slow” they are or such, which many of us are aware is code for 'less valuable as a person' even if it is not consciously meant that way in the moment. If you are rushing someone who is "slow" most of the time and does not usually or ever present as "fast," please do not do that either, because the least harmful assumption is that their experiences of rushing would be similar to mine. Value is not velocity, even though I can see why it would seem like that given our cultural ideas of reliability, "time is money," etc.

It is very helpful to know the person and what kinds of things cause the particular person to have glitches and anxiety or difficulty doing the things they are trying to do, if you get a chance and want to be useful in the situation and really need results. Then, do what you can to minimize the distractions or items causing pain, distress, and/or confusion and the like. This is likely to be in practice that you are basically doing the polar opposite of rushing the person or telling them to hurry up or telling them that you need it right now when in reality there is more leeway. Also if you are good with time you can create a situation where things are not last minute and in need of rushing because you have used your ability to plan ahead better to the benefit of both of you by creating a bigger span in order to do whatever it is at a more relaxed pace. People in my life who do this last thing have probably increased my lifespan. I am not exaggerating. It makes everything worlds more doable and I feel it as love. Reduction of anxiety is golden.

Thank you very much for listening to that. Also this: our humor and resilience keep us going. Please do understand that many of us don’t go around thinking and talking about how difficult things are all the time because then our lives would be focused in a direction of gacksville. Your child might be like us in this, and if so, it's a good sign for resiliency and bouncing back in the world! We are like your child.


Thursday, December 19, 2013

Talking is Hard

When I was a toddler, I wasn’t supposed to be autistic.  And so a speech-language pathologist told my parents that if they simply stopped responding to my made-up gesture language, I would start talking.
What followed was many years of me getting berated for being too shy, of everyone assuming I was just afraid to speak, and not that it was actually too hard. 
(Before very long, I was afraid to speak, though, because I was persistently misunderstood when I did.)
For a very long time, I could not reliably use spoken language to make myself understood or get my needs met.  Either because—though I could technically speak, with difficulty—I couldn’t say what I needed to, or I couldn’t get anyone to believe me when I could.
To make a long story short, I eventually found theater, and there learned the practicality of scripting—and in debate, the knack of saying things like you just expect people to believe them—and talking got a lot easier.  But never truly easy.
Communicating in spoken language always feels like playing with fire.  I wrote once in a journal that it felt like I was always speaking English as a second language, except that I didn’t really have a native language.
Talking is almost always an unnatural way to communicate for me.  It doesn’t seem to be a strictly physical issue, like oral motor apraxia, for the most part, but feels like it has more to do with difficulty in starting and stopping, and something about my sense of timing and rhythm, of momentum and inertia.  The strain of doing it too much feels very similar to that of having to multitask too much for too long.
Speaking and conversation involves some of the most complex mental gymnastics I do on a daily basis.  I’m relatively good at it because I’ve forced myself into a lot of practice under difficult circumstances over the years, not because it’s natural or easy.  It isn’t.
It’s been especially hard the past couple of weeks.  I was working on a project during which my communication abilities got pushed to their outer limits, in multiple ways, for an extended period of time.  The energy drain has taken a huge hit on my speech abilities.
It might have been a short dip—if the stress is relatively short-term and not persistent, I can recover with a single decent night’s sleep—but I just kept getting badly stressed without a chance to recover over the course of several weeks…so it’s going to be a longer dip.  It’s been a couple of weeks now, and just starting to really feel better.
I can only get away with talking as much as I do because most of the speech I have to use in the course of a typical work day is at least partially scripted, which alleviates some of the stress of real-time translation involved in using spontaneous speech.
It helps to rest it and take long breaks whenever I can.  I come home from work and don’t talk if I can help it.  I take non-speaking days to give myself a break.  On my days off, I go somewhere to read, where I won’t have to talk to anyone beyond ordering coffee.  I listen to as little human speech as possible—sometimes I don’t even turn on the radio in the morning like usual.  I put off phone calls.  If I watch TV, I use the closed captions so I can watch more than listen.  Letting myself think in pictures, patterns, and loops.  Leisurely pleasure reading.  Doing something with my hands that requires very little verbal thought.  Getting as much sleep and downtime as possible.  Staying away from multi-tasking, doing one thing at a time and letting myself sink deeply into that task…not switching back and forth between tabs in my mental browser window, so to speak.
There are times when intense practice can help to strengthen and reinforce speech abilities, but there are also times when backing off and resting is necessary to preserve those abilities.  Like any other physical or intellectual exercise, it can get easier as it becomes habitual, but it can also be pushed beyond a reasonable limit.
It isn’t distressing or uncomfortable, in and of itself, to not be able to talk.  Unless someone’s pressuring or forcing me, refusing or unable to understand my best efforts, or I’m in a situation where I don’t have any choice but to push through that boundary and keep doing it even though I know I’ve hit my limit. 
That hurts…literally hurts.  I get home sore all over, with and my ears ringing and a piercing tension headache.  I’m sick and exhausted for days afterward.
But just to be able to not speak—It’s restful.  It’s comfortable.  It’s a relief.  It’s something I need, and there’s nothing wrong with that.

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.

Saturday, September 28, 2013

Postictal Stream of Consciousness (includes profanity)-Classic Neurodivergence

**I wrote this when I woke up with a BAAAD seizure hangover. The thought process isn't quite so languagey, but this is how it translates to words. The swearing is about accurate.*

Ohmigod, what is that sound? So loud, it hurts.

Oh. It's the cat purring.

Go 'way, blankets. Scratchy. Someone turn off the sun. My eyes, I'm gunna claw them outta my head.

Shitfuck. Moved. Ow to the 10th power. Head wants to split open. Brain too big, trying to expand, leaking outta my ears. S'wrong with my arm? Tingles. Huh.

So tiiiiiiired. Did I walk 'round the state in my sleep? No, sleepytired, drugged tired not exertion tired.

Why can't I talk? Damnandahalf. Phone ringing. "hng?" Gibberish comes through. "eh. feh." Click.

Water. Signing it makes it come, right? No? My hands swear again. Sleep? More sleep? Please? No. Have work.

What happened? S'11 AM. Think. Brain hurts. Big black memory hole. What'd I do yesterday? What's today? Oh. I always do the same thing yesterday.

Cast about through the cottonhead for details. Hadda coffee. Ok, 24 hours ago. Need more. Took a bus, OK 21 hours ago. Ummmm cream? 19 hours ago. Changed shirts....16 hours ago, Anything else? No? Just a headache? Just fatigue like climbing out of an ocean of tranquilizers?

Shower. Coffee. Can talk now. Dunwanna. Lurch around, foggy. Maybe ok tomorrow, maybe not.

Fuck seizures.

Saturday, September 21, 2013

What epilepsy is-classic Neurodivergence

Epilepsy isn't just seizures.

Epilepsy is always having to be vigilant.
Epilepsy is knowing every escape route in case of a seizure.
Epilepsy is having to carry a first aid card, an ICE sheet, and wear a medicalert.
Epilepsy is doing all that, knowing all too well that no one actually looks.
Epilepsy is hoping people don't run away the first time you have a seizure.
Epilepsy is always being told that 'there are meds for that'.
Epilepsy is always having to be aware of potential flashing lights.
Epilepsy is having to choose between leaving a place & risking the lights.
Epilepsy is teaching other people how to turn off their red eye reduction flashes.
Epilepsy is having to explain why that matters.
Epilepsy is people telling you that your safety is less important than their picture.
Epilepsy is being yelled at for advocating for yourself.
Epilepsy is being yelled at for not advocating firmly enough.
Epilepsy is being yelled at for not being able to be diplomatic about how someone is hurting you NOW.
Epilepsy is being told you don't have a real disability.
Epilepsy is often being disabled by the very people who tell you that.
Epilepsy is spending days making arrangements so an event is accessable.
Epilepsy is having those agreements be broken, ruining your weekend.
Epilepsy is being expected to thank people for almost making an agreement.
Epilepsy is being yelled at for saying “you could have done better”.
Epilepsy is being expected to be nice about them trying, even if you just had a seizure that they caused.
Epilepsy is people telling you to stay in your house if others cause dangers.
Epilepsy is people thinking you are being too cautious by avoiding people known to be ableist.
Epilepsy is not knowing how many flashes will be a problem, but that whether 2 or 20, it's coming.
Epilepsy is having to educate people unwilling to learn, and doing so while you are at your worst.
Epilepsy is not being believed about your needs until you are in a drastic situation no one was willing to be ready for.
Epilepsy is being expected to be grateful when people almost treat you as a real person.
Epilepsy is knowing they don't think you are a real person.
Epilepsy is always hearing “you are an extreme minority so you don't matter”.
Epilepsy is hearing that from another minority who should get it.
Epilepsy is being unable to win, ever, because the rules keep changing, and giving up is losing too.

Saturday, September 14, 2013

What Autism Is-Classic neurodivergence

In the style of What Epilepsy Is. Like that piece, this one is more about how other people react to autism than what autism itself causes. I'd think that'd be apparent, but one never knows.

Being autistic is being judged.
Being autistic is being yelled at for existing.
Being autistic is being subjected to verbal, physical and emotional abuse for existing.
Being autistic is being at high risk of being killed for existing.
Being autistic is knowing damn well that anyone who hurts or kills you will get away with it.
Being autistic is knowing that the person who hurts or kills you will be a folk hero.
Being autistic is being looked on as a tragedy.
Being autistic is teachers doing everything they can think of, legal and illegal, to make you not their problem.
Being autistic is people being scared of you.
Being autistic is people being scared of you when they haven't even met you.
Being autistic is being looked on as an emergency.
Being autistic is being told that your way of seeing the world is objectively wrong.
Being autistic is being told you have no empathy.
Being autistic is being told that by people who make no effort to see things your way.
Being autistic is being told that your very existence is a danger to you and to others.
Being autistic is being called a burden.
Being autistic is knowing you aren't going to get acceptable medical care.
Being autistic is being assumed incapable of having friends.
Being autistic is people talking to your friends instead of you.
Being autistic is people assuming you are incapable of understanding things.
Being autistic is people hoping you are incapable of understanding things so they can justify excluding you.
Being autistic is people excluding you anyway, because 'autism' is reason enough.
Being autistic is fearing for your job when people find out.
Being autistic is being erased-no one is like you in the media.
Being autistic is people disbelieving you are what you are because there are no autistic adults in the media.
Being autistic is having both your strengths and your weaknesses weaponized against you.
Being autistic is having to qualify everything you say as only applying to you.
Being autistic is doing exactly that, and still having people attack you for 'assuming you speak for [my] child."
Being autistic is doing exactly that and people still demanding you play universal translator.
Being autistic is those same people yelling at you when you tell them something they don't want to hear.
Being autistic is having very personal details of your life demanded of you.
Being autistic is being called 'tantrumming' when you don't answer said invasive questions.
Being autistic is giving 95-97% in every social interaction.
Being autistic is knowing that others resent giving even 3%.
Being autistic is every socialization problem being your fault, for you are the broken one.
Being autistic is knowing that the bullying you are subject to is socially sanctioned and celebrated.
Being autistic is knowing that your successes are resented.
Being autistic is charities that are supposed to help you trying to eliminate you.
Being autistic is being physically attacked at those charities' events for daring to show up.
Being autistic is being assumed to be the aggressor in those and any other situation.
Being autistic is having quack cures constantly shoved down your throat.
Being autistic is knowing that no one wants a child or friend like you.
Being autistic is knowing that if you point out how society treats you, people are going to challenge your anti cure status as disingenuous.
Being autistic is knowing that if you demand equal treatment, people will challenge your support needs.
Being autistic is knowing there is no way to win anything, ever.
Being autistic is fighting to be seen as an actual person.
Being autistic is knowing that fight will not be won in your lifetime.
Being autistic is fighting that fight anyway.

Wednesday, September 11, 2013

DYMPHNA is Like Your Child

Additionally, DYMPHNA wants you to know that they are a ladle, and that they are not me. They did, however, get the ladling from me. [Me is Yes, That Too.]

I am patently terrible at writing introductions, so rather than make some big to-do about saying what I’m going to say before saying it, I think it’s a much better idea to dive right into the heart of the matter at hand.  I will give the exposition of telling the reader that this is a story that touches on two major and commonly made themes of this blog: (1) that the expectation that Autistics be as “normal” as possible screws Autistics over consistently, (2) that Autistic children, when permitted to survive past childhood, become Autistic adults, and (3) functioning labels are bullshit.

The germ for this post started when I read a blog post ( that everyone should read wherein the author talks about the some of the prospective futures they face as an Autistic.  Well, here I am, a college degree and some years later, able to speak on the matter from the other side of the chasm.

Let me level with you: my current situation is not good.  I recently lost my job, I’m in massive debt, I’m being evicted from my apartment, and my medical insurance will have probably expired by the time this is published; all the while, I have an occupationally useless degree, one reference from a job that fired my in a field I didn’t particularly care to work in for reasons that will be revealed, and I live quite far away from any family whom I am way too proud to ask for help for reasons that will also be revealed.  Despite my bleak situation, the relevant aspect of this story isn’t the present situation, but rather how this situation came to be.  It didn’t happen suddenly that I just found myself unemployed, penniless, and approaching destitution.  This tale actually starts before I was in high school.

Our story begins in the infernal times plagued with bullying, hormones, and lunchroom antics owing largely to a combination of the former two and the students having ready access to caffeine, times known as “middle school”, which must have been a punishment for some horrific sin I committed in a past life as this clearly must violate international torture laws.  During this time, I had a full time aide whose job was to come to my classes with me and help me remain organized and get things done.  It was something that I needed, as, when I didn’t have one back in fifth grade, my academic life started to go completely to pieces (herein lies the subplot of me crying at the end of the first quarter in fifth grade because I got a C in English class, which was always my worst subject).  In sixth grade, it was decided that this aide would join me for classes.  She was by nature a lovely person and, although we certainly tortured each other a little bit, her being with me was helpful to my overall scholastic life.  In seventh grade, I had different person with me.  This person did not handle the rocky nature of our relationship quite so well and, during the final quarter of my seventh grade year, I believe she basically fired me for being too difficult to handle.  While I’m generally unapologetic about my personality and whatnot, I readily admit (and readily admitted at the time) that my 12-13 year old self was probably not the easiest person to manage and remember distinctly make several attempts to better our relationship, but alas, it was not meant to be, so I faced the fourth quarter of that year alone.  I’m sure the results were absolutely unpredictable.
In that quarter alone, my grades dropped.  My grades dropped in a measurably significant way.  A class in which I had gotten an A(+) every quarter (history) went to (I think) a C+ during the final quarter.  So, in light of these stellar results, someone had decided that I was best served flying solo during my eighth grade year, which, I will tell you, went swimmingly.  So swimmingly that I nearly failing English two out of four quarters and ended up being on some sort of grounding for my grades the entire time.  The story in history was not as bad as the story in English class, but it was still not stellar.  Science only was good because (a) I’m good at science and (b) that teacher would have let me get away with MURDER in that class and math was only good because the homework didn’t count as part of the grade.

High school got even worse in some respects.  Up to this point, aside from English class, the material was never actually difficult, but now that I had transferred to a new district for high school with challenging curricula, I had all of the previous difficulties associated with keeping myself organized and having the executive function to get homework done on time compounded with a curriculum that was something that no course had ever managed to be: intellectually challenging.  This was also not helped by some teachers who, for whatever reason, had decided that the accelerated curricula I was in were too difficult for me, despite the fact that I knew the information, but could not regurgitate in a way that meshed with their formulaic grading styles.  I, a highly gifted student, finished high school without one AP credit in a school that offered over a dozen.  Why was this happening?  The issue was clearly that I was not studying or working at this.  I spent every single night of my life doing homework those two years.  I can still talk about US history up to the civil war in entirely too much detail owing to the hours of time I spent studying that material.  Things were not helped by the fact that I had a parent who decided that I didn’t hate myself enough for failing to achieve academically, whose idea of how to motivate me was to scream at my for hours on end and to insult me by comparing me to my late grandfather who was starting to die of Alzheimer’s at the time and for whom this parent had no respect or to tell me that my fate would be to work at McDonald’s and live in a trailer park if I insufficiently hated myself for my academic failures, which were certainly the result of my moral failures.  I just wasn’t trying hard enough.  If I had been trying, I would have done better.

Unfortunately, by the time college came around, this was the attitude I had internalized, that my failures were merely reflections of insufficient effort on my part.  Some aspects of the academic life got better, but some got much, much worse.

First of all, no one cared if you missed class; you would just fail.  Mornings were never a great time for me.  Now they were my absolute kryptonite.  Now, there wasn’t someone making sure I got up in the morning, nor was there someone telling me to go to bed at reasonable hours.  Many times I fell asleep after sunrise and awoke after sunset and missed every class of the day, only to spend the night aimless wandering the internet as I do now.  Sometimes I would be up for 24 hour increments and sleep for twelve hour increments.

Second of all, I never actually developed a mechanism for making myself do homework.  Rather I developed strategies for figuring out how to bolt around the school to get a paper signed so that my parents could see what I had to do and make me do it.  However, in college, if you don’t do the homework, you fail and between missing classes and not doing the work, I failed classes.  Not just one or two, but several.  I failed classes that I understood to such a high level before taking that class that I could have passed the final and forgone taking that class if that had been an option.  I failed classes because I meant to drop them, but never remembered to do it until the drop date had passed.  I almost got kicked out of college during my fifth year, but managed to stay in and get my Bachelors Degree in a useless liberal arts field that presented no career opportunities.

Then, after I graduated, the time came for me to get a job.  So I applied and luckily had sufficient experience with my part time job in college that allowed me to get a pretty good paying full time job.  I took the job, moved two states away from home, and started trying to be an adult.  You know, make friends, go to work, pay bills, have fun, etc.  Well, this didn’t go so well.  Turns out that making friends in a completely new environment is hard.  Really hard.  Especially when you don’t have school to help you do it.  I had two friends vaguely in the area, one of whom was never available because of conflicting schedules and one of whom I ended up living with in a hellish arrangement that may have ruined our friendship.  On top of all of this, I started to seriously struggle at my job about eight months in due to serious executive function issues.  It took nearly a year of strife with my boss before I finally lost my job, a year that warped my mental health horrifically.  In the meantime, my living situation had deteriorated into squalor living with a roommate who had become emotionally abusive in a bug infested hellhole hours away from anyone who had the resources to help even if I weren’t too damn proud to ask them.  I started a huge fight with my family at one point that pretty much ended up with me breaking down into tears about how much I hated every aspect of my life.  I made a plan to change it, but sticking to plans is really hard.  Four months later, I’m broke, facing eviction, in debt for school, and, probably most importantly, uninsured.  I live in a trashed apartment.  My laundry hasn’t been done for weeks.  I love to cook, but every time I go to the grocery store, I seem to walk out with eggs, butter, and lemonade since actually planning a week of meals is not a skill I ever really learned (not to mention that attempts to do so and sticking to the aforementioned plans were failures, as sticking with plans is hard), thus resulting in my wasting an obscene amount of money on take out.  I haven’t managed to pay the rent in months and am being evicted.  This is my current position.

I mention being uninsured because the upside to me losing my job is that I might finally have the spoons to get some of my personal life in order.  Part of that meant seeing doctors and getting prescriptions for things that would help me get my life together and figure out what I’m doing.  However, now that I have the downtime to permit me the executive function to see doctors and get drugs that, had I been able to get them while I had a job, might had saved me this job, I will not be able to obtain them because I will not have health insurance.  This is my life.

We all love to believe that some happy result waits for Autistics like me because I’m “so smart” and “so high functioning” that I can’t not be successful, but the truth is not the dream you want to see.  The truth is that I, admittedly the picture next to “high-functioning” in the dictionary, failed.  I failed at living on my own.  I failed at having a job.  I failed at keeping my finances in line.  I pretty much failed at everything.  Moreover, despite my great disability pride, despite me knowing that the reasons are not necessarily my fault, I will probably have to be literally homeless or sucking dick for money before I ask my parents for help because I know that the judgment will be that my failure is my fault.  Even if they love me just same, that judgment is inescapable.

I was taught that the way I functioned in sixth and seventh grade, taking help and being successful, was fundamentally wrong.  I learned at some point that it is better to fail on your own than to succeed with help, because succeeding with help doesn’t really count, not to mention that they were, unfortunately, preparing me for the reality that there really isn’t help for people like me.  Just like the aforementioned blogger explained, if you’re smart, you get no resources.  As Neurodivergent K will readily tell you, twice exceptional is twice fucked.  Who cares that I got an A+ in my college level physics class, that I can analyze music by ear, that I understand the complex political situations surrounding U.S. politics in the reconstruction era, that I can recite 40 digits of pi, or that I have several Robert Graves poems memorized and ready to deploy at a moment’s notice?  None of that has helped me at this point.  All of that has been distractions that have prevented me from focusing on what I should really be focusing on, but all of that is the reason that I will be laughed out of the room if I talk about having a disability.  So I guess I’m resigned to be another one forced into the cracks.  This is the reality of an ableist world.


That’s what I wrote several months ago.  Things have since changed.  I managed to swallow my pride and tell my family what’s happened.  I resolved the rent situation with my landlord and got them paid current.  I now have a viable career plan that I am executing and I live in a place where I have tons of support.

But the thing that I want everyone to take home from that blog post is that being gifted and being disabled are not mutually exclusive.  This is something that people have written a lot about, including the “Two Women” posts on both “Yes, That Too” and “That Crazy Crippled Chick”.  What I want everyone to take away from this is that functioning label rhetoric isn’t just annoying.  It doesn’t just irritate us, although it does irritate us.  When you tell us that we’re took high functioning and that we’re “Not like your child”, you are denying the truth that, while we are Disabled and proud, we are still disabled.  We need help sometimes and this whole high-functioning rhetoric creates both a culture of shame around us having needs and denies us the help we do need when we need it.

Saturday, September 7, 2013

Information retention & processing-classic Neurodivergence

So something I've caught a lot of crap about lately is that I don't retain everything I perceive. I have a phenomenal memory (as many of us do), but if something is presented in a way that's not very good for me, I don't move all of it from short term to long term memory. That's just the way it is.

However, what the people taking this to mean I cannot learn are not understanding is that I perceive far more than they do. I probably don't catch everything, but not much goes unnoticed. As I sit here now I am aware of the smoothie being made 25 feet away (it has bananas and berries), I am aware of 5 different conversations about 5 different things, I feel and hear the lights, including the one about to die 10 feet to my right, the butt groove in the chair I am sitting in, the crookedness of the table directly in front of me, the grinding of the coffee across the big open space, the smell of the daily special (I think it has sausage). When I go to the hospital or doctor I can remember the names of the nurses because they wear name tags. I notice what hand people prefer.

In other words, remembering even half of what I take in would be remembering more than many people indicate noticing at all. If I remembered absolutely everything I'd have more conflicting information than I can deal with-that threshold is already awfully close. Discarding some of those conflicting details is how I have cognitive capacity to learn new things rather than spending all my time justifying 2 opposite ideas as compatible.

So yeah. I learn just fine, thank you.

Wednesday, September 4, 2013

Inside A Torture Chamber

Ben Forshaw is a husband and software developer rapidly approaching 40 years of age from the U.K. who, despite holding down a job, relies heavily on his wife to keep his life in some kind of order. He has Aspergers Syndrome and blogs about his experiences at "Married, with Aspergers".

I spent for too long at the hospital yesterday accompanying my wife as she went through a series of tests and scans. The X-Ray/Ultrasound department has recently moved to a refurbished suite and it's all new and shiny.

Too shiny. The lighting makes its white walls harshly bright. It's all straight lines and square corners with no relieving softness. I know hospitals are clinical - obviously - but do they really have to look so cold and unfriendly? I was feeling on edge when we got to the department reception desk. Luckily my wife dealt with the receptionist - with the bright lights, echoing footsteps and other voices all claiming my attention I couldn't concentrate on what he was saying at all. We got directed to a small waiting area off one of the corridors - an alcove with a row of six chairs on each side, facing each other. About half the chairs were occupied; I took one at the end away from the corridor with my wife sitting next to me.

I feel uncomfortable in waiting rooms at the best of times; I get very anxious when people are sat looking at me. And I don't like to feel I'm being overheard when I talk to somebody, so I was inhibited from speaking with my wife. I ended up just sitting there, stimming in a fairly subtle manner by tapping one thumb on the other with my hands together, fingers intertwined - trying to keep reasonably calm. However the pressure of having other people facing me in such a small space was making me increasingly anxious. (I have similar problems using public transport - that's why I will walk miles rather than catch a bus.)

So there I am in this small waiting area with too many strangers looking at me, the harsh light making me feel even more exposed and uncomfortable. I can feel I'm getting close to a sensory overload. And then somebody goes through the door in the corridor just outside this alcove. How to describe the noise made by that door? If you've seen those old horror films where the castle door slowly closes to the accompaniment of a tortured squeal from its stiff, rusted hinges you'll know exactly what this door sounded like. That did overload me. I had to shut my eyes every time that door opened or closed because it was as if somebody was shining a spotlight into them. It hurt. I was starting to ache from the tension across my shoulders and up my neck.

I thought to myself that they couldn't have designed a more effective environment to torture somebody with sensory processing issues if they had tried. I just felt like curling up in a corner and shutting down but I had to keep myself going to keep my wife company. By the time we got out of there I was tense and exhausted and just wanted to rest. It took a massive effort to avoid shutting down and left me drained. I'm not sure how much support I gave to my wife but at least I was there and mostly responsive. I find it hard to believe that a hospital could get its design so wrong in terms of providing spaces for people that are comfortable and promote a calm state of mind.

Saturday, August 31, 2013

In this activity, in this place, I am not disabled-cross post from Radical Neurodivergence Speaking

I'm going to get a bit social model on you folks today.

I used to do gymnastics, and I dance. I participate in 4 kinds of dance and am therefore dancing 5 days a week. This isn't something I did when I was young, I'm not particularly musical, so what draws me to it?

This is something I've had to think about a lot with the access issues and intentionally harmful lying about access of the Portland swing dance/lindy hop community in particular. And, not only that, but sometimes dancing hurts. Belly dance class makes my old gymnast knees hurt. I've got bruises in new, exciting places from modern. Ballet makes me hurt everywhere. And if my back, knee, or ankle doesn't already hurt come Saturday night? Well, that's what swing dance is for, right? But I cannot give it up.

Part of that may be this:

When I am dancing, I am not disabled.

I am still Autistic when I am dancing, possibly at my most Autistic-sometimes I am a being of pure joy and sensation while I dance-this is what gymnastics did for me, & that is what I am trying to recapture, I think. I still have epilepsy and my other various cooties. Not a single thing within me changed. My neurology is the same. My physicality is the same. I am the same.

All that changed is my environment, and the expectations it has for me. The expectation is that I can move with the music in a specific way. I can move with the music in those specific ways, and I can do it at an average or better proficiency. When the language is movement, when the social cues are the leading and following of the whole body rather than of subtleties, I am on even footing. I may not exactly shine, but I am also not struggling, not having to run everything through translators and emulators.

In the environment of pure movement, I am not Other. And I love and accept and embrace my Autistic self with my whole heart and soul, but it is restful to be Same for a couple hours. It is restful to have a place where things are easy, where I am seen as equal, as like, as same without fighting for it.

Because in that place with the mirrors and the hardwood floors, I am not disabled. I am just another dancer.

Saturday, August 24, 2013

Shoes, Instruments of Evil-Guest post from Kiley Quinn

Kiley Quinn is an autistic adult in an all autistic household. She told Neurodivergent K that she lacks awesomeness, but K disagrees.

I do not like shoes. I find it baffling when I enter a home and see a small mountain of sandals, boots, heels, and athletic cross trainers. After all, most people I’ve surveyed have two feet or fewer and don’t possess the ability to wear multiple pairs at a time. Upon receiving a pair of shoes as a gift, I have been known to cry, explain at length what is wrong with them, and then go into a full meltdown before hiding the offending objects. I don’t “do” surprises, am not a big fan of change, and the sensory challenges of a bad pair of shoes are unbearable. I realize that this is the behavior of a small child, but well, I am like your child. And I’m a grown up sized Mommy in (roughly) size tens.

If the shoe is poorly padded or has a thin sole, I can feel every variant in the concrete surface of the sidewalk like needles in my foot. Then I have to wonder if there’s enough room in the shoe to allow for adding thick pads or if my toes will be crushed by that modification. If the back is poorly padded, I will have blisters within one wearing. Maybe you wouldn’t get blisters, but then again, you probably walk the “right” way.

If my foot slides from side to side within the shoe, my dyspraxic body is convinced that I’m going to fall, even if the problem is marginal. If my foot slides forward, I probably will fall. I’m a person who broke her foot simply walking up the stairs, after all. (I possess special non-marketable talents.)

The shoe has to be constructed in such a way to allow bending for toe walking and to tolerate the increased pressure without immediately splitting. Even if they don’t last, they feel better broken in. We tend to wear shoes long past their expiration date. I have seen more than one autistic adult with shoes duct taped together after the soles have separated from the tops. I’m married to one. An adult, not a shoe covered in duct tape.

My kids usually don’t need to tape their shoes because their feet grow so fast. I admit to trying super glue once. I get my girls one pair of athletic shoes each. I can tell by sticking my hand in to feel the padding (sometimes followed by waving them around and making them talk in a southern accent) if they’ll be just right, and we tweak the size from there. Assuming that the store carries a generous variety of sizes, shoe shopping only takes about ten minutes. Then there was that one time they wanted clogs, and I opted to tell them that the store ran out of shoes. That saved lots of time.

Somehow over the years I have accumulated more than one pair of shoes, but I go to the same store every couple of years to buy the same kind when the previous falls apart. If the shoemaker changed the style, I consider it an early sign of the apocalypse.
In summary, a poorly fitted pair of shoes is a torture device equivalent to the iron maiden or the modern bra-- but that’s a story for another time.