More on aspification.

Standard

Edit: Please read my prior posting on this and the responses. This is about stereotyping, not which diagnostic labels a person fits.

One of many forms that aspification takes in the autistic community, is a denial of the existence of autistic people who don’t fit the stereotype. The stereotype varies, but it’s there. This denial can come in many different forms.

One form I have seen is the response I’ve seen to me and to Sue Rubin. The two of us by the way agree on very little related to autism (I think we roughly agree on the communication issue, and the aversives issue, though), her notion that the attitudes of people like us are monolithic is a myth that promotes aspification in itself. Some people have stated outright that they don’t like her or me representing autism because we look too weird. We’re not normal-looking enough.

Plus, we actually talk about difficulties (some of them related to being autistic), that a lot of autistic people don’t want to handle the existence of. It upsets the idea that autism is basically, being a bit socially awkward and geeky.

So they come up with their excuses:

  • We look too weird.
  • We by merely existing show a negative portrayal of autism.
  • We have “other genetic conditions” that invalidate our stances on autism.
  • We have “co-morbidities” and that’s the source of anything they don’t happen to like about being autistic.
  • We’re just generally not flattering enough to the idea of autistic people as not really needing any unusual kind of assistance, and as being “nearly-normal”.
  • We promote the idea — by existing mind you — that you have to be really weird-looking or really “dysfunctional” in order to be autistic, and are therefore hurting all the “functional” autistics out there.
  • We’re retards. (I use that word because they mean it in the pejorative sense, not because I want to endorse its general use. I don’t want to mince my words here because they don’t mince theirs.)

Now, however much I dislike some of what she has to say (which is to say, a lot), these things are not the answer to an autistic person whose views you dislike, or whose existence is inconvenient to you to acknowledge. If you disagree with someone, you disagree with their views, you don’t pull the above kind of crap on them and make it sound like they shouldn’t even have their views. I don’t agree with much of what Sue Rubin has to say, but when it comes to being ostracized in sections of the autistic community because we’re not normal enough, I’m in the same boat as her and will fight for everyone like us (not that we are identical, but that we are lumped into the same particular group of people here) to be recognized as a valid human being with a total right to state her opinion.

Now, of course, her opinions do contribute to the aspification thing, from another side, ironically enough. She has stated that high-functioning people (her categorization scheme here) don’t want a cure, and low-functioning people do want a cure. She lists off a bunch of traits that she thinks create this dividing line (by her list, I’m on the same side of it that she is). And in this way she contributes to the idea that anyone who speaks out against the idea of curing autism, is in the category she calls high-functioning. Which in turn further allows the online autistic community — as well as most people in general — to basically assume that anyone who opposes a cure has a certain set of traits until proven otherwise. Aspification all over.

I’m also well-acquainted with the weird little trick pulled in some autistic communities, wherein people like me are trotted out as examples of “the non-speaking auties who agree with us,” but they at the same time totally ignore the realities of our daily lives, because they find this distasteful. They’re ready to say we’re part of their organizations, their values, etc, when it suits them to say so, but not willing to incorporate some aspects of our lives into how they think about autistic people’s fate in the world.

I’m well-acquainted in fact with being one particular community’s token non-speaking autie at times, while the day-to-day realities of lives like mine are barely acknowledged.

There was one conversation in which I discussed the state I ended up in while in an apartment with no assistance. That was, I could not coordinate perception and movement and all that very well, and ended up often sitting in my own pee, barely able to do a part of one thing in one day (with constant auditory prompting for each miniscule body movement), doing a lot of screaming and head-banging, barely moving anywhere, and certainly not cooking or eating or drinking water much, even if the food was very close by. I’d stated this as fact — it’s not a bid for pity, it’s describing my day-to-day life at one point. I had been describing this in conjunction with talking about going to an “autism support group” where I was told that all these things were, in fact, easy, and that I should “just do them”. I had been, in fact, trying to illustrate the disconnect between auties who can do certain things and auties who can’t do them, or can only do them with great difficulty. I want to emphasize, again, that I was not looking for pity, or sympathy, or any of that other crap, I was simply trying to describe how my days went at a certain point, and why I didn’t find certain “support groups” all that useful when those were my practical problems.

In response to these descriptions, one person (I’m not sure whether male or female on any of these, so pardon if I get people’s gender wrong) compared what happened to me, to an attempted suicide, and tried to say that I was in fact deliberately slowly killing myself by “refusing” to eat. He said that if I could type, then I could go through the much more complex process of making myself food. He said that in reality my problem was self-hatred: It is, apparently, self-hatred, to describe what you have trouble doing.

Another person insisted that I simply did not have enough willpower, and that the proper solution would have been apparently to let me starve until I figured out how to cook. (When in reality, it works the other way around: I can only learn if I’m eating enough, neglect is not remotely useful to me.) He said that regardless of how much I was attempting to do this stuff every day, that I was really obviously just giving up on myself and wallowing in self-pity. (So apparently spending my entire waking hours trying to do these things, is giving up. Yeah. Right.)

And someone said they were way too pragmatic and logical to ever end up like me… and someone else said that I was belittling their “more functional” life by claiming to be unable to do this stuff. (Well good grief, sorry I hurt your feelings by existing.)

So I wrote the following response (remember, again, my motivations are to illustrate, not to evoke pity):

First of all, my intentions have been misconstrued, so I’ll try to explain. I didn’t write what I wrote for anyone’s pity, not even my own. (I have to be pretty ruthless about self-pity, it’s a waste of energy and gets stomped out pretty much the moment I notice it most of the time. I don’t have energy to waste. And pity from other people doesn’t solve anything either and is fairly uncomfortable.) What I did write it for, was because these situations can become life or death, and because some people don’t understand that. Life and death are more important than my feelings, and more important than the feelings of someone who for some reason feels belittled by my descriptions.

I am sorry I lost my temper though in trying to explain this, I’ll explain why later further down towards the bottom.

The truth of sink or swim is that some people after a long struggle swim, and that can be great for those people. The trouble, is that some of them then assume that everyone should be dropped in the water, and that those who drown — maybe those with just a tiny bit less arm strength — brought it upon themselves. People who drown don’t need pity (their own or anyone else’s), or even emotional support of any kind, they need not to drown. (Whether that entails water wings, more gradual swimming lessons, a shallower pool, or in the case of people with aquagenic urticaria — a potentially life-threatening allergic-like reaction to water — not to get in the water in the first place.)

I worked long time to learn to type as well as I do, and to learn to communicate as well as I do. I, at my best, type somewhere in the vicinity of 130 words a minute. For some autistic people they will struggle equal amounts, maybe even far more than I will ever have to work in the entire time I type anything, in order to type three letters a minute. Some of them have probably worked longer than I’ve been alive, and harder than I’ve ever worked at the same task, to be able to do something a lot slower than I can do it. I don’t find this belittling to either me or them, or a sign of lack of determination in them.

Some things I try very hard and never come close to. Some things I try very hard and fall just short of. Some things I try very hard and excel at. Some things I excel at almost without trying. Which things these are, is going to be different than which things they are for some other people. This doesn’t bother me, that a person’s skill range in any given area is going to be different than another person’s. I don’t mind the things I am worse at, or the things I am better at, or think it belittles anyone involved.

I am saying this, because there’s a misunderstanding often when I say these things. About my motivations in saying them, and about my feelings about these things. I don’t feel the usual emotions people have around issues of ability, disability, whatever. I find that sometimes people project either their imaginations of me or their own emotions onto what I talk about, and assume, like my descriptions of parts of my life, that I’m talking about joyless misery and tragedy and things like that, and that’s not really the view I have.

I do take life and death stuff very seriously though, not only for myself (not even primarily for myself, at this point, because I’m not having to fight certain battles at the moment) but for other people out there for whom the price of the kind of misunderstanding in this thread is far higher, and yes on a life and death level, than it is for me right now.

So in the interests of education — and please take it as that — I’m going to explain why a person capable of logical thinking, and not even necessarily in any particular emotional distress, who has quite a large store of willpower, may still not be able to get to food when it’s in front of them and they’re starving. This is real stuff, it’s not exaggerated, what I’ve experienced is not even the most extreme version of what I’m going to talk about. I know autistic people who can’t volitionally reach up and scratch their noses, ever, and I usually can.

I don’t need your sympathy from this, but someone else may well need your understanding — not your warm fuzzy emotional understanding, but your understanding that they’re in danger and may not be as lucky as I was. So, please take this as educational information, if you really want to know.

At any rate, it goes something like this (this is going to be oversimplified, I don’t have all night):

Most people look at their surroundings and they see things a particular way. Like, a person with a different brain looking through my eyes would see, a computer monitor, sitting on a desk, with words on it, that they would proceed to read at least a few of without thinking much about it, etc.

Most people don’t even have to think to know where their body is. It’s just a given, and when they want to do something, they can pretty much get up and do it. If they cannot get up and do it, it’s because they don’t feel like it, or are afraid to, or other emotional reasons. If they do move in a particular direction, or do a particular thing, it’s mostly because they decided they wanted to and then did it, except that’s so automatic that they don’t even notice they’re doing it.

And, in feeling their body, most people can identify sensations like hunger, thirst, the need to use the toilet, etc, and of course since everything else works more (or less, but not so much less it becomes impossible) standardly, they’ll be able to do all that.

Most people also can hold thoughts in their head while doing all these things without the thoughts disappearing or getting jumbled.

Some people have some amount of difficulty with one or more of these things, but not so much that a serious amount of effort — sometimes over a long period of time — will not eventually let them do at least the basics in life.

I don’t have the most amount of difficulty possible with these things, but I tend to have more difficulty with these things than most people in the support groups I was discussing do. (Although I have more ability at these kinds of things than the worst of my records claim that I do.)

So…

Before I put forth much effort, I don’t see much of anything. If I put forth some effort, I see shapes and colors and patterns, but I don’t see “monitor” and “words” and stuff. More effort, and I resolve the existence of such things, and even more effort, and I can read the words and stuff as something other than “gee, there’s words there”.

And similar levels of basicness go with all the rest of these things, including formulating particular ideas about the world and what needs to be done in it.

But it gets more interesting. Most people can get a little weird if they don’t eat, drink, or sleep enough for a bit. If I don’t eat, drink, or sleep enough for a bit, then the amount of effort it takes to do any of these things (“these things” being throwing together the building blocks of perception, reflexive thought, and action) increases greatly. So then I’m putting more effort out for less return, which makes me less able to do the eating, drinking, and sleeping stuff, which in turn makes my effort worth even less in terms of action. It’s like watching economic inflation happen within the course of three days or less, only instead of the value of the dollar dropping, it’s the value of some unit of effort.

This, of course, happens to even totally non-disabled people, too, but it happens much more slowly. In my case it’s helped along not only by the fact that I’m autistic but by the fact that lacking regular meals/water/sleep/etc are my main seizure and migraine triggers.

Now, the seizures were complex-partial seizures. That means that among other things I can carry out a purposeful-looking activity during a seizure, but I won’t remember it afterwards, and the activity will have something seriously screwy with it. It’s some kind of automatic movement, so it can be, my body will just walk up and open a door and walk back in the house and sit down, and then I’ll regain consciousness, but I’ll be more confused than usual and pretty much fall asleep no matter how awake I was previously. Or sometimes it’s just sitting there staring.

So that’s another part of many days we’re talking about there, that were being eaten up by seizures and subsequent sleep. (And if the seizures got out of control there were at times about ten minutes worth of them, or so I’m told by people who were there. And after something like that I needed serious reorienting, on the order of another half hour of repetition by someone else, just to remember my own name.)

And those are triggered in me mostly by lack of adequate food or lack of adequate sleep. (They’re also well-controlled by seizure meds at this point, but at the time I also didn’t have adequate healthcare.)

Then there was just the standard stuff.

Yeah, technically food was just across the room. But in order to even conceptualize the need to go across the room to get it, there’s a lot of things you have to know.

You have to be able to understand that something you can’t see (because it’s in a cupboard or refrigerator, or even just behind you) is still there. That’s at times an enormous leap of abstraction for me. (I eventually left packages of rice cakes and peanut butter lying around the house in strategic locations.)

You have to be able to identify the food, whatever it is, now that it’s lying around, as food.

You have to understand what the purpose of food is.

You have to understand the sensation of hunger as more than just an uncomfortable but totally inexplicable sensation, and you also have to be able to feel the sensation of hunger. (At that point I had untreated severe neuropathic pain, so my entire body felt like it was burning all the time. Hunger doesn’t always show up against that particularly well. I had no idea I was in pain, I thought this was just another inexplicable sensation that had always been there.)

You have to, in fact, connect the sensation of hunger to the need for food, and connect the concept of food to the stuff that’s in the house that you may not at that point be able to see (or identify, if you do see it).

And that’s all just to conceptualize the need to go over and grab the food, and this doesn’t get into how you ended up with the food in your house to begin with, or understood what food you needed to get, and it’s assuming a food that doesn’t require any cooking (which I didn’t always have on hand — my biggest supply of food was a giant tub of rice and a giant tub of lentils).

Now you’ve decided you’re going to grab the food. Then what?

You have to notice that you’re attached to a body that will be able to grab it for you.

You have to know which parts of that body are going to do the grabbing.

You have to figure out how to send a signal from your brain to these parts. And you can only really move one at a time. By one, that’s, like, one. (Or else you can rely on automatic movements, but that’s a different matter.)

So you’re ground control in your brain sending message to spaceship finger. Only, a lot of the time, there’s going to be static in the air or other interference, and before you know what’s going on, your finger either won’t move, or will move the other way.

Or else, you have to start from a bit of you that’s already moving automatically, and then work your way down to the bit that you need to move. So, if your finger is twitching, you latch onto that. You work your way, literally inch by inch, up your arm and other parts of your body.

But now you’ve got this shoulder, and that’s what you’re trying to move, that you’ve got sort of banging up and down but you can’t get it to go side to side.

So you start working on side to side and the up and down part stops working.

And then, if you ever get the whole arm going where you want it to go, you have to calculate a bunch of stuff about where exactly you need to put the arm in order to push down so that you can stand up.

And then you push up, and instead of just standing, you end up running around the house in circles on autopilot, and literally bashing into walls in the process. (This is an automatic movement — you started it with a voluntary movement but then the autopilot movements got control.)

At which point you forget exactly what you were trying to do to begin with, so you run around for awhile being confused and getting out of breath and such.

You realize somewhere along the line that you’re hungry, and that entire first set of things I described plays out all over again, only at this point you’re running around the house because that’s what your body is doing on autopilot while you’re thinking.

You realize the first thing you’re going to need to do is stop.

It takes awhile for the signal to get to your body, but when it gets there, it really gets there. You’re now kind of stuck in one position.

So now it’s back to moving one bit of your body, then another, then another. And when I call this an inch by inch process, and a gradual one, this is again no exaggeration.

You do this in various bits and pieces, and you’re kind of alternating between not moving much at all, and starting a voluntary movement only to have it transform itself into a repetitive and involuntary movement, or else a strung-together bunch of automatic movements that you attempt to ride closer and closer to your destination.

Meanwhile, all the focus on moving your body both drives out all your other thoughts (including what you were doing to begin with) and any focus on the sensation of hunger that would otherwise make returning to those thoughts a more rapid thing (provided the sensation could be deciphered).

This can continue for hours.

Any time a seizure happens, you can lose a few more hours in some combination of disorientation and sleep.

You start ending up with other problems, too. Like, after you are hungry enough, the world starts looking even more distorted, and occasionally seems to tilt sideways on you, and you fall over. And then you have to figure out how to get yourself off the floor, once you figure out that you fell over and figure out what a floor is and all that kind of thing. At which point, again, you’re going to be forgetting you’re hungry, and again, whole initial process repeats.

There are almost no photos of me during this time period (because I was very isolated), but people who’ve seen them say I looked anorexic. Except, I wasn’t anorexic, I was just capable of getting lost from one end of a room to another and of forgetting about what hunger was and stuff like that. I had no shortage of hunger, or even willpower, but in order to act on all that willpower, you have to have a place to aim it, and you have to be able to remember what you’re trying to do. I could remember exactly what I was trying to do, as long as I didn’t move or start thinking about anything else.

And there was that whole jumble of understanding what’s going on, and then understanding what to do about it, and then understanding what to do about it with the specifics of body movement, and then prodding my body into that kind of movement, that got very disorienting after awhile, and did often end up with prolonged shutdown and seizures and so forth.

And the less food you have, the less energy your brain has to think with. And since most of my problems were thinking problems (or more specifically “thinking of all these things at once problems”, is a shorthand way of putting it), this just meant things got worse and worse, until I was at the point of serious perceptual distortion and physical collapse and so forth. (These things will happen even to a non-disabled person who is malnourished enough, it’s just easier to bring about in someone who’s already having trouble with some kinds of thinking.) (Oh, and also, I had two enormous bins of dried food that needed cooking, that were my main food items, so most food was more complicated than the rice cake scenario.)

So, what often happened, was I had a choice. I could spend all day doing this sort of thing, to get some food to eat.

Or I could spend all day doing this sort of thing, to get some water.

Or I could spend all day doing this sort of thing, to use the bathroom.

In the real world, it was of course a blend of the three, changing a lot of the time, and leaving none of them done entirely properly. Focusing on eating meant I didn’t have that energy to focus on toilet stuff or water stuff. And same with focusing on any of those things.

And in the real world there were even more factors than what I have described. My mind encounters walking across a visual barrier almost as if it’s trying to walk through a wall, it’s very difficult and uses more effort up. The more cluttered and chaotic my place became, the harder it was to move around.

I did in fact crawl around a good deal (especially when I couldn’t stand without falling over), but even crawling takes a good deal of effort. And walking was an automatic movement, so sometimes I would get interrupted in a standing-up movement to go run around the room until I could throw the brakes on. (Sometimes the only way to throw on the brakes was to fall over and then crawl, actually.)

This was not a particularly healthy way to live, but I lived that way for quite some time, during which it just got more and more difficult because I had less and less food and such. I had kind of barely enough to live on and not enough to sustain a brain very well.

So put the support group into that scenario, and it entailed attempting (badly) to explain what was going on, not being understood and/or fully believed, and hearing advice that was — yes, sometimes well-intentioned, but often just as incredulous and confused as some of the people here, and even when it was well-intentioned, it was not particularly practical or was already being implemented.

It was a couple hours drive each way, and an hour of being around overloading people giving advice that was (whether meant to be or not) not very practical, and also of a very support-group mentality which seems to mean not a lot of practical support but loads of words of emotional support (I wasn’t looking for emotional validation — then or now, I might add — I was mostly looking for food and ways to reliably get food).

So that meant five hours of overload and unfamiliar surroundings, and a few hours recovery time, in a day when it could take me upwards of six hours to get a few bites of food, and none of the advice I was being given there was useful enough to take all that time out for it. And there wasn’t a lot of food there. Or ways to get food. (Did I mention, food. Wink )

So it just wasn’t worth it. Pure cost-benefit analysis. It’s sort of like someone who works long shifts every day of the week (to be able to barely afford rent and food in the cheapest ways they can find), and who barely has enough time left over to eat and sleep, being expected to go to a support group about their situation. Even if the support group were totally excellent — and few are that amazingly excellent — they could lose their job, and their home, and their food, if they kept going. There are people in the world who honestly are unaware that some people’s work situation looks like that, but the work situation remains the same whether others notice it or not.

I was dealing with a situation where my equivalent to that “work situation” was working nonstop (while aware enough to do so) at getting things so that I could get the bare minimum of survival needs done, and they might not have even sustained me much longer than they did.

For what it’s worth, I’m in a much better situation now, and I’m capable of what seems like a lot more:

I can go to the refrigerator most of the time when I try to.

I can go to the bathroom much of the time when I try to, and in the right location.

I can often use a microwave to warm up a meal, and then eat it.

I’m still working on the water.

I can do all of these in the same day most of the time, and I can even have a fair amount of energy left over for writing.

There are a few reasons for this.

One is that I live in an apartment where the floors are almost totally uniform. I do not have to cross lines anymore to get where I am going, and my body no longer has to push as if pushing through walls.

Another is that my neuropathic pain, seizures, and gastritis, and tons of other things, are more or less successfully treated, and so are the recurrent urinary tract infections I used to have when in that pretty bad living situation, and the cold urticaria is totally gone. (These were treated as a result of both later gaining access to better medical care, and also the fact that I figured out much more both about communication and about how to feel certain things in my body than I knew at the time.)

Another is that in the course of all that medical stuff, I finally (and very easily, it turned out) got prescribed a wheelchair for the motor problems I had. This means that I only have to move a few portions of my body in order to get anywhere, instead of having to coordinate them all at once and balance at the same time. It also means that the visual barriers are less of an issue even when they are there.

And, I have an apartment that is accessible to wheelchairs now, so I can move around it. (I used to have a wheelchair but still couldn’t get around my apartment in it so it was kind of useless indoors.)

And I have a significant amount of help doing the basics, which frees me up to do other things as well, and means that I don’t run into the vicious cycle of only being able to do bits of one thing, which means losing nutrients, which in turn means being able to do less, which means losing even more nutrients, etc. (Trust me, there’s only so much a brain can run on limited nutrition.)

This all means that I am a lot more active now, and a lot more capable of a lot more things, although not infinitely so. It should be noted that the amazing gains in my ability include being able to open the refrigerator, microwave things, and use the toilet. Complex cooking skills are still pretty far out of reach.

And if you take away even one or two of the things I mentioned that have changed, then it goes back almost exactly how it was before. I truly do work to maximum sustainable capacity though, it just looks like less because it accomplishes less outwardly.

I hope that explains things, and I certainly am not trying to belittle someone else by this, any more than I am belittled by people who assure me that they are working as hard as they know how to type a few letters a minute and still can’t dress themselves. But to them, as to me, this becomes a life and death matter when it is not taken seriously. That is why I have gone to quite a lot of trouble to explain it in detail to people who have been confused by it. If I have gotten somewhat short-tempered, it’s because I care about people whose lives depend on people understanding that intelligence does not mean ability to grab food when they need it, and two of my best friends in the world have nearly died over misunderstandings like this, one of whom is still in many ways at risk of all this.

Although I do wonder if people here had really been at that conference I was at recently would have answered a lot of people’s questions. I look and move (by most people’s stereotypes) like someone who would not be expected to read or write one word, let alone this, let alone cook, etc. (Even when I was trying my hardest to pass, and thinking myself successful, I was surprised when people referred to me as looking “low functioning” or “severely mentally retarded” — their words, not mine.) My appearance tends to startle people who’ve read my writing almost as much as my writing startles people who’ve only looked at my appearance. Wink

In all seriousness, I probably look like that because of how little of my body I can move voluntarily at once (as well as the things my body does involuntarily), and that lack of volitional movement (as well as thought, perception, etc, which are all tied together) is why I have had so much trouble doing things like getting food. The only reason I startle people is probably because they oddly associate that level of perceptual/motor weirdness with lack of thinking (even the degree of laziness mistakenly ascribed to me on this thread can’t cause the kind of appearance I have, so my appearance is too unusual for lack of effort) — all the thinking and effort and so forth doesn’t make the perceptual/motor weirdness go away.

I am highly pragmatic too (someone said they were too pragmatic to end up in a situation like this, which I assume means they have a more obedient body as well), which is why I found much of the discussion perplexing: Ignoring the fact that my body works like this would be one of the least pragmatic things to do in this situation, and I learned that one through trial and error.

This illustrates, though, the total disconnect that exists in this community. There are people who can do all these things, some with lots of effort, some with very little effort, and assume that anyone who cannot do them isn’t trying, is depressed, is self-hating, etc.

Note that I’m not talking about opinions here, again. I’m just talking about lives. Some opinions (including, IMO, some of Sue Rubin’s, such as where she talks about having nearly the worst possible combination of genes) really do stem from self-hatred. But simply having trouble doing something in a certain way is not self-hatred, nor is acknowledging what you have trouble doing.

Some people are so far locked into an idea that autistics are a certain way that they can’t even fathom the existence of the rest of us. So they find ways to write us off. We’re depressed, self-hating, experiencing co-morbid conditions, not really communicating, whatever, they find some way not to see that our way of being autistic is a way of being autistic as well.

People who think that if autistics just don’t hate ourselves, and don’t get depressed, and don’t have any “co-morbid” conditions, we’ll all be just fine, are not really working for the cause of autistic people. They’re creating an aspified autistic community that does both themselves and the rest of us an immense disservice.

Not seriously taking us into account, will undermine their credibility with anyone who actually knows one of the people they want to erase. It will drive away a lot of us who are like me in various ways. I’m stubborn as hell and that’s why I’ve stayed. I know people who’ve left this community for other communities where people at least acknowledged their existence, even if those other communities were into cure or other bad stuff. These are nice people who were not initially into the whole cure mess, but who got driven off by the whole aspification mentality. Then they themselves perpetuate that mentality by saying that the only anti-cure people are the aspified kind, and the destructive cycle goes on and on.

If you talk about not wanting to cure autistic people, but not actually wanting to provide any assistance to autistic people who need it, you’re not getting very far. If you want to just turn us all loose in the world with no extra assistance, a lot of us aren’t going to buy your line of reasoning. If you work so hard to prove how all autistics are “functional” like you (however you’re defining “functional”), and that our only problem is a lack of motivation or willpower, or the existence of other conditions (that are “bad”, unlike yours), you’re not going to win a lot of friends, we’re going to go off elsewhere, we’re (at least most of us) not going to support your movement.

Except for those of us who actually try to break into these places and carve a place for ourselves and those like us. But the fact that we are trying to break into these places that are mostly reserved for others (and this “we” is anyone who’s shunted off to the side by the mainstream of the autistic community, be that disability-wise, economics-wise, education-wise, or anything else) doesn’t mean we are lending our seal of approval to everything that these communities do to people like us.

It doesn’t mean, by the way, that every single one of us who claims this is going on, has a whole picture of what’s going on either — and some contribute to the whole aspification thing themselves — but you’d do well to at least attempt to listen to us. I know people who use the aspification in this community to justify torture and imprisonment for “low functioning” autistics — that’s not right, that’s not okay, not remotely. But don’t pretend aspification doesn’t exist, just because some of the people who mention it and make use of it are really crappy and misguided. Aspification weakens your standpoint, it does not strengthen it in the least bit.

It may be invisible to a lot of you when you use IQ levels as an insult, when you call people retarded or crazy (or any of a number of clinical terms related to same) as a way of dismissing them, when you go “We’re not like that” as if “that” is a bad thing, when you say that all these horrible things are bad for you but good for us. It might be totally fine with you to claim that some kinds of autistics are just plain not good enough for you, that you’re better than us, that you deserve to be seen in the company of people other than people like us. You may not even notice when you say these things day to day, but it’s sure not invisible to those of us on the wrong end of all this.

There are so many different ways of denying the existence of those of us who aren’t as convenient to certain narrow-minded versions of autistic “advocacy”. But as I said, aspification weakens the entire community, and people (including those of us who don’t fit the aspie stereotype all that well, because we can have our own versions of aspification among ourselves) would do well to make serious efforts to avoid it.

One good way to avoid it is to learn about the lives of autistic people that differ significantly from your own, and then not try to erase those people (no matter what kind of people they are) out of existence, and then try to apply your principles to the existence of all of us. No, this doesn’t mean you’ll suddenly want to cure us, that’s not what I mean. But you might get more of an idea of the more complex way a world will need to look in order for things to work out for all of us.

For instance, I may not have a job, but I have made a point of finding out about the various forms employment discrimination take. I wish more people who don’t need a particular form of assistance would still find out about it, rather than attempting to claim that nobody needs it. I wish more people who do need a particular form of assistance would find out about the lives of autistic people who may not need that form of assistance, but might need some totally different form. It’s really hard to take someone seriously as an advocate when they make generalizations that just plain don’t make sense.

It might also be good to take a look at the fact that autistics are only a small group of people within a larger world, and the way that all of us connect to that larger world. Learn about how human rights issues play out for people in general. Learn about the things the disability movements (physical, developmental, psych survivor, and otherwise) have already contended with, and don’t turn your nose up at them just because they’ve often turned up their noses at us. (That constant war of noses turning up against each other is one of the big flaws in identity politics — don’t participate.) Look at the bigger picture and our place in it.

At that point it becomes harder to aspify the world.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

19 responses »

  1. This has nothing to do with diagnoses and everything to do with stereotyping. Whether someone is “PDD-NOS” or not according to a set of diagnostic criteria isn’t as much a conundrum, as much as totally irrelevant to this.

  2. At some point you need a wider audience. The new incarnation of the CBS Evening News, now with Katie Couric, has an almost daily segment of something entitled “Free Speech” that’s an A/V version of Newsweek magazine’s “My Turn.” Explanations like this might set education forward by orders of magnitutde. Speak just like in your videos.

  3. The “if she REALLY wants to do it, she’ll LEARN if she’s given no help and forced to do it all herself” was used on us repeatedly with regards to school, and… didn’t help much. Like, they thought the first time we flunked an assignment and didn’t have anything done by the due date, we’d “learn from the consequences of our actions,” etc, etc, and everything would be okay from there. Except that it, uh, wasn’t, and every assignment started turning into a repeat of that initial one. (Then they start in with the “well, you must really have *wanted* to fail…”)

    We haven’t had it so much with the food and so forth, but the general, basic, ideas as described are familiar to us: seeing shapes in the fridge but ones that don’t connect in our brain to the concept of “food,” or register for us as something which can be cooked and turned into something edible; or for some of us, not recognizing that uncomfortable sensation in stomach means get up and put food in it.

    We had a pretty lengthy conversation about this today with someone else. The high-functioning aspie stereotype of socially awkward computer geeks and absent-minded professors seems to be invoked by a lot of people talking about why autistic people going to university is good. But *only* those who fit the stereotype. Everyone who doesn’t fit it is therefore conveniently erased, dumped into the category of those assumed to be too “low-functioning” to be there in the first place. And, well, you know, there are Places For Those People, they’re not our problem.

    Part of the reason the stereotype of “we’re all super intelligent and don’t need any help and don’t look that different from you” grates on us is our background of being labeled “gifted.” The stereotypes there are pretty much analagous– you’re assumed to be socially awkward, naturally proficient in every academic area but especially science and computers, act like a “little professor,” etc, etc. And our experience with gifted education is that the attitude there is very much “sink or swim.” If you sink, oh well, you’re not gifted enough for our program, you’re someone else’s problem. That, or you get people’s attempts to psychoanalyze the reason for your “underachieving” shoved down your throat. (“You must be: acting out because of family problems/jealous of your brother/trying to spite your parents/afraid of success/etc etc…”)

    …so, yeah. Often felt varying degrees of the “get out of my movement, you’ll spoil the model minority image we want to have, people should see us and not you” pressures ourselves, from those who were invested in the aspie stereotype. There were some people who apparently interpreted us as somehow trying to be purposely obnoxious, when they started talking up Aspie Virtues and we butted in to say that, actually, those stereotypes really didn’t apply to us, and we didn’t actually have all the skills and abilities they were attributing to “high-functioning” types. Like we were trying to purposely sabotage their movement, or something. (Well, actually, I think that if your movement only applies to people with certain abilities and who look almost-normal in the right ways, it doesn’t deserve to succeed anyway.)

  4. John Best, when I wrote “I know people who use the aspification in this community to justify torture and imprisonment for “low functioning” autistics — that’s not right, that’s not okay, not remotely. But don’t pretend aspification doesn’t exist, just because some of the people who mention it and make use of it are really crappy and misguided.”, I was referring in part to people like you.

    Just because you have your own ends to use the fact that aspification exists for, doesn’t mean I will ever agree with those ends, which is why I stick to where I am. I want a wider version of what much of the autistic community already offers some people — just one suited to more autistics than just that small bunch — I don’t remotely want what you’re after.

  5. Not the best language tonight but the ideas will hopefully come through.

    Years ago, there was a kind of person designated as “autistic”. Such people were often assumed to be non-persons. Horrible things were written about autistics. Autistics were put in institutions, treated like “eternal children” or monsters.

    Then in the 1990s, Asperger’s was put into the diagnostic criteria. Subsequently, there was a kind of backlash against the idea that someone who was in any way autistic was “broken”. This was a good thing of course but it seems to have gone wrong somewhere along the way — in the sense that “not broken” was exaggerated in some cases to “doesn’t need any help or accomodations”.

    You can still be “not broken” and need accomodations. You can still be “not broken” and require alternate means of communication. In short, being Not Broken doesn’t mean the same thing as, “can do everything in the typical way”.

    It saddens me that there is any kind of divide between people who for all intents and purposes should be allies. Though one thing that anyone observing the various debates going on will certainly realize is that autistics are most definitely still subject to “human nature”. We’re not automatically “above” conflict and disagreement by virtue of being autistic. All of us come from different contexts and different life experiences. And though we might be more likely to communicate effectively with each other than with nonautistic people, there’s nothing magical about being autistic that makes you able to understand the nuances of every other autistic person in the universe.

    For a long time, it seems that the same kind of stereotype has been able to dominate the “autistics who communicate online” arena. What I’m seeing more and more of is people coming out of the proverbial woodwork who do not fit the stereotype. And this seems to be confusing some people, and I really hope something good comes of it in the long run. It very well might, because one thing about stereotypes is that if they are unrealistic they will eventually come crumbling down. Reality is insistent like that.

    Personally I do fit some aspects of the “aspie geek” stereotype. I do have particular interests in science and computers and was considered “gifted” as a child (though my experience in the school gifted program revealed that it really wasn’t much different from regular school in terms of the social and functional environment — I didn’t magically start “fitting in” just because I was stuck with kids who supposedly had standardized test scores similar to mine).

    However…there are other things. There have always been other things. I really do often feel like I have more in common with the people labeled as “low functioning” some of the time — and I’ve looked that way enough of the time such that people around me have gotten worried. When I read about people struggling with things like head-banging…and being given neuroleptics…and having trouble figuring out how to perform supposedly “basic” tasks…this hits home for me far more than do stories about “worrying that nobody likes me” or “not knowing how to ask people out on dates” or other similar “awkwardness” stereotypes.

    Yes, I was awkward growing up but not just in the sense that I would point out things nobody was supposed to be noticing. At age 11 I was still scripting movie lines at people rather than “greeting” them in a supposedly appropriate manner. I didn’t know how to wash or brush my own hair until I was painstakingly taught as an adolescent. I was chronically dehydrated for about 5 years when I was figuring out how to live on my own (to an extent; I’ve generally had one or more roommates) because I did not know how to tell that I was thirsty. My weight dropped to double-digits at one poin,t and according to one person who knew me, I looked “gray”.

    I also have sensory differences that are not “mild” by any stretch of the imagination. My visual perception is such that overcomplicated rooms end up looking like a kaliedoscope of polygons and pixels until I am able to hone in on one detailed thing at a time and gradually build up something like a coherent image. When going to a new place for the first time I have to read all the text in the room, locate the electrical outlets with my eyes, determine all the light sources, examine the doorknobs and handles, etc.; only then will I have a sense of where the walls and floors are. Walking into a grocery store, particularly an unfamiliar one, probably looks to me like a Disneyland parade through prism lenses would look to most other people.

    I thought everyone saw the world like this for a long time, and I still can’t imagine it being any different. I am not exactly sure what it looks like to other people when I am acclimating to a new place, but I have been told I sometimes look “disoriented” and I also cannot generally answer questions when trying to assess new stimuli. Around puberty, people in my school (students and teachers alike) started accusing me of being on drugs; one teacher even called my parents in for a conference because he thought I looked “spacy” and “asked weird questions”.

    My hearing is very acute, particularly for certain pitches but I have trouble distinguishing voices if more than one other person is talking. It has been less than 2 years since I learned to figure out when I was getting too hot.

    As a child I used to have long meltdowns and periods of obvious discomfort in which I had no way to tell anyone what was wrong, since I didn’t know how to identify sensations. For years I remember having what seemed like two “modes”: fine and uncomfortable. The “uncomfortable” could be anything from being hot to having a headache to being hungry, but none of them registered in any localized manner.

    With the help of an observant partner, I’ve been able to learn to identify things like heat and headaches (for years I was convinced that I “didn’t get headaches” when it was really that I didn’t know how to tell when it was my head that was hurting or even what that kind of physical pain actually registered like).

    My basic life needs and such are now fairly well managed (I have help with some of them). I do have a job, and I have interests that I engage in. This blog by no means summarizes my entire life. I don’t talk constantly about my difficulties in other contexts (particularly online) mainly because they’re just not relevant to the discussions, however, when I see people saying things like…well, “people like you aren’t REALLY disabled but those ones who can’t talk should just be aborted” I cannot help but think there is a big problem. It’s disappointing because in some cases it’s as if I start to think, “Yay, these people accept me!” but then they go on to start devaluing someone who is actually more like me than they probably realize without knowing me in person.

  6. I can’t count the number of times that I have been accused of creating a divide that I merely pointed out. Even if I didn’t think the divide should actually be there (as in, the sociological divide excluding a certain kind of people), just pointing out the existence of one was akin to creating it.

    Similar to how it used to be very popular in some circles (may still be) for parents in mostly-parent autism groups to point out how “divisive” autistic people were being for pointing out all the ways in which we were not welcome with them. They created a divide (an autie-hostile environment) and then accused any autistic person who had a problem with this, of creating the divide by mentioning its existence.

    (Hint: If you’re an organization mostly of non-autistic parents of autistic children, and there is not a large amount of autistic representation, your environment is almost certainly hostile to auties. Or else we’d be there, not in tokenistic ways, but in large numbers.)

  7. I find it really surprising – although I shouldn’t I guess – some of the attitudes on some AS forums where there doesn’t even seem to be a grasp that what is being said is in fact insulting. Some want to create this idealized persona of the genius Aspie and it seems like the “retarded” and “crazy” ones get in the way of that objective. Or else if these difficulties are encountered than they are either co-concurring conditions (which is fine because not everyone on the spectrum deals with some of this stuff) but more often the blame is laid on society – instead of perhaps some inherent inclination towards some of these issues. Alot of problems with interaction and bullying and such may exacerbate such things considerably but that is not necessarily cause. I mean it may be for some people as I said, however, this extreme desire to want to separate any MR or MI issues is a trend that I have seen parent groups do also.

  8. I am just getting totally tired of being misunderstood.

    In terms of stereotypes I certainly look more like the super aspie geek type with my sitting on boards and post graduate level studies and I have a fondness for positive imagery because I don’t want to be separated from my achievements. However I would like people to see them not in the light of a performing dog. As I keep trying to point out, these kind of arguments are not exclusive to our “movement” if I dare even call it that considering the contradictions in it. This you see in the disability “movement” in general. My mum made the transition from a “lightly impaired” person to someone who needed total 24hr care due to the aggressiveness of her condition, but she still represented the same “message”. There are within the disability movement those whose invisibility prompts them to avoid the “stigma” of association rather than challenging it. At some point in my own journey within the movement my mum challenged me to decide which side of the divide I was on.

    For that reason I cannot define my “disability” totally in terms of Autism because although that is a major part of my cognitive and perceptual makeup, I have other “impairments” too and it makes more sense to be part of a wider movement which does not define one by the impairment, but by the fact that whatever “impairment” one is judged to have (I take issue with the word impairment but use it here to identify what others designate as such) one is treated as less than equal because of it. It is that lack of equality that should drive the solidarity.

    There is a lot of false reasoning being used by the aspification camp to justify looking down on the disability movement. The claim that Aspies for Freedom or whatever are part of a civil rights movement is a false one, for anyone who has been part of the disability movement will realise that the disability movement grew from the civil rights movement and learnt from it. It is to deny that any “disability” or “impairment” is also a part of the natural order of things, as unavoidable as being “aspie” is. These Aspies are making a moral judgement that it is somehow “dirty” or “taboo” to identify oneself in such a fashion. Well what would one say if disabled peoples organisations did not want to associate themselves with black people or immigrant minorities because that was beneath them ?

    That isn’t to say that prejudices and imbalances don’t exist within disabled peoples organisations, they do and I am against that as well.

    I want to be seen positively, however I want my positive traits to be seen as an honest part of me, not as some sort of spin off from being Aspie, White, Anglo Saxon, Protestant or whatever. I am human, I have failures as well, things I can never do. Both my achievements and my failures are set within a context of the society I have grown up in, which has been conditioned by attitudes towards disability, class and gender. I see Aspification as part of the same oppressive machinery that divides and rules.

    Labels have there uses and there time spans, I think it is time for the usefulness of the Asperger label to be disregarded, I think in time it may be that Autism will go the same way as well.

    I suppose I will do the Haile Selassie thing and say that until the label on a man’s cognition is no more significant than the label on his trousers there’s going to be war.

    Now there is a fine statement of contradictions, because I say “man” as did Selassie and of course designer jeans are of significance so I am just playing around with words again in the hope that people see the subtext in that whatever you say someone will take a different meaning from it. The problem is when one label sets you in opposition to another persons label because you have swallowed all of societies hand me down crap that goes with it.

    Aspification is a social learning process, learning to take ones designated place in society, learning to be not one thing, but another, but still not at the top of societies ordering from perfection down to unworthy of living. Those who take the Aspification path are not a liberation movement they are a reflection of societies normalising values.

  9. I remember reading a book Making History about the gay rights movement. At one point they were talking about how some gay people, who argued that they were ‘just like everyone else except for what they did in bed’, were upset that some ‘queens’ had shown up at this one protest, because they were too ‘gay-looking’ for the people who wanted to say gays weren’t really that different.
    I think there’s a lot of that in the autistic movement too, even though many HFA types (including myself) emphasize that we’re different. I used to think it was like you’d measure all sorts of skills on some scale, and if the two people balanced out overall they were both OK. So for example if you have someone who’s strong but not smart and someone who’s smart but not strong, they’re just as good, but someone who’s not smart or strong is only as good as them if you can find some other talent to make up for it.
    Another thing is that often people think that help only comes in one form. For example, I’ve read stuff by crazy people who say they shouldn’t be put in mental hospitals, they should be left alone, and I think “what about the people who aren’t fine on their own, with the same supports everyone else gets and just having their weirdness accepted?” I think people like that need help, but not the kind of ‘help’ the psychiatric system is providing.

  10. Someone, maybe Larry, mentioned racial/cultural groups and civil rights in another posts’ comment. It reminds me of the curious situation when we talk about immigration in the Spanish classes, and I just want the students to realize that Mexicans and other immigrants are real people, and that even people here illegally have human rights and stuff like that. The students who actually know some Hispanics and other immigrants personally (maybe at work or in their neighborhood or at church) pretty much universally respect them as people, and maybe even appreciate aspects of their culture. So there really is this huge effect from just getting to know people that are different from you.

    I have found the same thing in my own de-aspification process, if I can call it that. At a certain point I started reading the experiences and perceptions of people, like AB and Droopy, who could be labelled LF and trying to understand about their lives… and, I like to think, even relating with you guys as equals (although we have had very different experiences and you know a lot of stuff I had no idea about and I am often scrambling like crazy to fathom what in the world you are describing). My whole concept of the meaning of autism has been turned upside-down or inside-out. And I very very much appreciate this.

    AB, I think you were saying in chat that wanting to understand about other people’s lives is “a useful curiosity”, and I am happy to have “caught” that particular curiosity. And there’s one very personal thing that I have mentioned here before: I won’t be afraid of combining my and my husband’s autistic genes. I still fear having a baby (because of my own ineptness), but I don’t fear that baby being autistic.

  11. Very good advice, and very much what I’m trying to live by, most especially since I’m starting to get invitations to give presentations/lectures/wossname on autism for psychiatrists and soon perhaps institution staff. I’m worried that I’ll start turning into a self-narrating zoo exhibit, and I wish someone with firsthand knowledge of the inside of institutions got to speak in my place, but I’m doing my best to raise issues beyond those relevant to me, and hopefully I’m doing more good than harm.

    I wish I had specific questions to ask people with more knowledge, but the questions I have are more along the lines “is the structure in my head somewhat correct”, and I don’t think I can ask those in less than a few dozen pages. Perhaps when I get my new keyboard I’ll give it a try.

  12. If I had seen that post all I could have said would be:
    “where do you live? I’m coming (or sending another member of this group, or finding a way for someone) to cook for you.”

    That the people offering this kind of real everyday support understand that you may not be able to communicate with them in person or deal with them at that time, that tyou didn’t need an insititution, but that you needed to eat and at the time couldn’t manage it -well, in this group, we all know how that can be. The fact that you were given so many opinions and so little actual on-the-spot support really, really sucks.

    I don’t care if you ever “learn” a single “lesson”. I care enough about all autistics to want you to eat when you have to. Simple as that. And why you’re having trouble or how you resolve the difficulties isn’t my business, necessarily, but it is my concern. I can learn a lot from you, and have been in the same position many times. Therefore helping you is helping myself- I wish there was more actual help we could give to each other, as a group, on a very practical basis.

    I’d make you anything you could eat. I am lucky enough to be safe, if not excellent, at cooking. Now if anyone wants to do some laundry, I can give you directions to my house. ;)

  13. Some people seem resistant to grasping that autism doesn’t have to be JUST a difference or JUST a disability, but can be both. A lot of times the people who aren’t disabled – or who are but can pass – and so avoid the label for the stigma but in fact add to it.

    I have wondered idly for some time how people would classify me if they saw videos of me doing stuff on YouTube. There’d probably be a wide range, as well as a fair amount of “she can do X, so clearly she’s faking her inability to do Y” which I have got a lot in my life, and is something I am quite familiar (unfortunately) is not unique an experience to me.

    I personally refer to you (too frequently I suppose), though mainly I just think that your ideas and how you express them, often it’s exactly the thing I think ought to be representative of an autistic rights movement. That, and I have trouble remembering what names refer to what people, and most bloggers I’ve read don’t have videos of themselves on YouTube.

    I also don’t relate much to the socially awkward part of the “aspie stereotype”. I have much more notably stims, and movement, difficult to initiate and the like, but can do socialization. I’m too tired now. Should sleep.

  14. “And walking was an automatic movement, so sometimes I would get interrupted in a standing-up movement to go run around the room until I could throw the brakes on. (Sometimes the only way to throw on the brakes was to fall over and then crawl, actually.)”

    I know a teenage girl with Rett Syndrome who seems to have that issue. If she’s standing, she’s walking. The only way she can stand and not walk is if I hold her in place. If I want her to stay in one spot, I have to prompt her to sit down.

  15. I am considered high functioning because I have a graduate degree, job and friends. But it’s so hard to get people to understand that I do have issues with eating, some of the same ones you mentioned in your post. I have learned to eat a small amount of food upon entering home from work and then scheduling dinner on my cell phone at a later time, otherwise I will enter this vicious food cycle.It works some of the time, but not when I am overloaded or get distraced by other tasks. I have never been able to feel hunger, I just know if I don’t eat I will experience headaches, nausea, and dizzyness.The expert I talked to told me I was becoming anorexic and that I should just start eating and then everything would be fine.If I wait too long to eat, my brain starts to dissociate and I can’t get my body to do anything because I can’t really connect to it anymore. I have sat on the floor in front of the refrigerator for hours because I could not get my body to perform the actions neccessary to get food out of the fridge 5 feet away.I have gone without food for several days in this way. And that’s just eating, staying hydrated is even more difficult.For me there is a relatively easy solution to this, I need someone to eat with me. The only time in my life I was able to eat regularly was when I had a job with a scheduled lunch break and a roommate with OCD who ate dinner at the exact same time every night and didn’t mind me doing the same. I wasn’t able to initiate the action but I could mimic her, I could smell her food cooking as a cue, I could ask her “what was I doing” and she could tell me that I was getting out pasta or something so I wouldn’t end up in the living room vacuuming. But I am regularly told by those I look to for help that I am fine and I’m just looking for a label so I can try to be different or to blame my moral failings on. I’m tired of this stereotype, it hurts everyone it is associated with.

  16. As I’ve said elsewhere, I’m much closer to that “Aspie” stereotype than I am to Amanda’s situation. Even so, (re-)reading this article, I’m struck yet again by how many of Amanda’s issues, and those of some of the commenters (here it’s zilari, and now meep) resemble mine in type, though much less severe.

    And even at my “level”, I’ve been hit with that crapola about “learning the consequences of my actions” stuff too. Part of that is I didn’t get diagnosed on the autistic spectrum until I was almost 40, about three years ago… but, I’ve always seen a notable lack of interest as to why I might have had problems doing whatever, much less help in solving the problems.

    I don’t think the Aspie label is really useless, but I do agree it’s not half as well-defined as many people (especially some Aspies) think! It’s more like a broad horizontal stripe across the middle of the “autistic spectrum”. Given how poorly mapped the spectrum is, that’s at least some sort of reference point, but it’s still just lines on a map — and as always, “the map is not the terrain”.

    I do kinda wish I had someone to help me along in daily stuff, but (cost aside) I’d feel bad about “tying up” a decent aide, when some folks need that help to survive! (And I wish I had local friends like resonanteye!)

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