Tuesday, November 26, 2013

The gamble of how to not hurt people

Hurting people, and guilt, is generally a really important theme when discussing empathy, however empathy is defined. When is it worth doing something that will hurt someone else is an interesting question for people to discuss frequently, to determine how much pain is too much and where values lie.

Or, on the other hand, the guilt of doing that, of hurting them, how does it affect you? Disproportional responses occur, in both directions, people who feel guilt too much, and those who feel guilt too little. They're interesting for people to discuss, stories that are talked about.

But me, I don't know what to do. I don't want to hurt people. I don't know how to not. I feel guilty, because I didn't know and didn't make that decision. It is too strong of a response, because its unpredictable. I didn't know it would happen.

Because I cannot understand what hurts others and what doesn't, I cannot understand if an action I would do might hurt someone else. I cannot know if something like saying 'I don't like that gift' will be something that will hurt someone badly. And because I don't know, I won't do it. If I knew it wouldn't, then I'd be fine, but I don't know. (I mean I can say now that in most cases it'd probably be fine, but saying it now and being able to understand it in real time are not the same; understanding in real time is far more difficult). So, I'll always take the not understanding in the way that's least risky, in terms of hurting others. It's the safest move for me.

Because they can say "you won't hurt people", but I do and I don't know why or how. People do react like I've hurt them, and they do it unpredictably, and they act like what I've done is terrible. And I don't know what I've done wrong. And when I don't know if its them or me, and I don't know what to do and what not to do, when all I know is that there are things that hurt people, and that some of the things that make people uncomfortable I can't help but do sometimes, and if I don't do always you're spending a huge amount of your energy just on that...

Then, what would you do? I always have a gamble, every action is a gamble. Will this one be one that bothers people or not? Because I don't actually know. Because I don't actually know those rules of what hurts and what doesn't. There seem to be unspoken rules, that people know, that mean certain things are allowed in certain situations and not in others, and certain things are never allowed, and I don't know them. All I know is that I don't want to hurt people.

So instead I take those least risky moves. Because if I need to gamble, I'll play it safe. Because even that's a gamble, and even that fails sometimes.

And doing that, that's not not acting not true to myself. That's not knowing what to do. It's not saying "I'd rather do A, but I'll do B instead". It's simply not knowing. And wanting to not hurt, because I hurt when I hurt someone else. I feel guilty, and I hurt because they hurt, and I don't know what will happen.

So I do what I can for me when I can. And when I don't know, then I do what I can to not hurt others.

Even if sometimes that means that I don't know what I'm doing at all.

Because what I'm doing here is living without knowledge when others have it. But the gambling game when they are playing a different sort seems to be working out well enough so far.

Monday, November 18, 2013

What is autism?

What is autism?

Living a life that others don't understand. Being told that you aren't "really disabled" because of being verbal. And at the same time being told that you are not good enough, that you need to be normal, that you need to act how they do. Struggling alone. Doing the best you can to be the best you can. And not being acknowledged, because people want something else.

What is autism?

Autism is being able to identify individual learning styles quickly because we cannot understanding people intuitively, and need to analyse every thing actively. Learning styles are no different than attempting to figure out anything else about the person.

Autism is needing to say that you can't do something, and not knowing when to, or how to, and if it gets through that to actually saying something, then not actually being listened to.

Autism is overwhelming joy with something as simple as a toy made for a 2 year old. Simplicity is not a thing to overlook or look down on.

Autism is not understanding the world around you, and needing to make sense of it; not always being aware of everything, or being aware of too much.

Autism is learning about things in depth, taking in all the information about subjects and being able to call it up any time its relevant.

Autism is being told that we don't live past 18. That autism is only for children. That we don't exist.

Autism is saying that typing is communication, handflapping is communication, and we'll fix that "we don't exist", we'll find our own way into the world, because we need to.

What is autism?

Simply us. And we're not broken.

Written for the "This is autism" flashblog

Wednesday, November 13, 2013

I look away

They tell you to look me in the eyes. I look away. I won't let you do it. I won't let you look into my eyes while answering my question, even if they think that looking into my eyes means you are paying attention to me.

I can't do that. I can't let you. My eyes are too personal, too mine. Real eye contact means too much and fake eye contact takes too much energy to spend on such an activity rather than what matters. Yes, I fake it for people, no I will not like this. Not when you are right in front of me. Not when it's so forced, not when it takes so much concentration. No, now I look away. I must for me.

And again, I can't do that. I can't let them do that to you. I can't let the view of normality be more important than your comfort. I can't let them force you when I know how uncomfortable eye contact is. I can't let someone say that looking in eyes is necessary to be listening when really, I know that isn't the case, and that it's just as likely, or really more likely, harder to listen and harder to think of you make eye contact. I can't let it be that looking normal is more important than being better, learning more, and actually managing to do things you otherwise wouldn't be able to do (in your own personal way). So I look away.

I have to look away, it's the only thing to do. Because sometimes, no matter how much they want to help they don't understand; and sometimes the action of an adult might make a point that the little things aren't what matter; and sometimes people are so busy thinking about their world that they don't see what it's like to be us.

So instead, I don't let myself get hurt. And at the same time, I hope that it helps you a little even if you are too young to understand now.

Monday, November 4, 2013

But what about those florescent lights?

I was going to make my post on time this year, I really was. But then things came up that were more important than writing a blog post. And now again, I vary between writing thousands of words because someone mentioned a topic that I wanted to reply to because they were wrong and not being able to pull up what I was going to write about on here. But, despite all that I'm going to write a post, even if its two days late, and even if there's a lot going on, and even if I don't remember what I was going to write about because so much is going on. And I'm going to make it meaningful.

Right now, what's meaningful to me and easy to talk about, sensory issues, so that is what I'll write about.

I don't hide from people that I'm on the spectrum and that I have bad sensory issues. It'd be rather hard to hide the sensory issues wearing blue glasses around, but still some people do overlook them and say that you can't notice. I question them sometimes, if I'm sitting sideways in a chair, wearing blue glasses, and stimming, but apparently this isn't enough to be visible sometimes.

Sensory issues can be invisible. Even more than other parts of autism. Social issues are visible if you're interacting with people. Communication issues, the same. Issues with change aren't immediately visible, but generally come up quickly, and are understood to be part of autism. Same with the other parts of RRBs. And well, stimming is usually visible, though apparently sometimes overlooked.

Sensory issues, when they're hypersensitivities at least (which within the HFA crowd seem to be the most common based on my experiences, though in SPD, hypersensitivities are actually less common than either hyposensitivities or seeking behaviors), are generally very internalized. The person reacts strongly, feels pain, doesn't process things properly, but doesn't show others very much. They don't scream out every time a florescent light turns on, but that doesn't change that the florescent light has an effect on them. It's an invisible reaction. Because others don't know. And others don't expect the environment could effect people so much.

Which leads to sensory issues being overlooked. We talk about communication. We talk about change. We talk about how many people are murdered by family members for being different. But, what about that simple florescent light?

Just for me? I hear those lights. They hurt. They feel like they're stabbing my brain with high frequency buzzing. They make me want to rip my ears off because it would hurt less than listening, and they jam my brain, because I have to listen through the buzzing. And try to concentrate through it. Eventually the buzzing might give me a migraine. A sudden noise of the sort might have other reactions, but lights are these constant offenders, like someone taking the static, turning it high frequency, putting it in headphones, and making you walk around wearing it so you're the only one who can hear it.

And then of course there's the vision part. They flicker. I don't know who gave people the idea that the flicker isn't visible to the human eye because its definitely visible. And both the flicker and the buzzing get worse as they age. A constant distraction of a fan flapping in front of your face, flip, flip, flip, flip, flip, because its flicker flicker flickering. And again, people deny it, because they don't see it. And because its so fast, again, not only is it distracting, its a slow buildup of too much getting too pain. Someone flicking lights on and off is irritating. Now, have that happen always in the room. It's normal. The eyes or the processing behind the eyes or something has to compensate though, and it doesn't so much like doing so (to put it not very scientifically), and eventually the eyes are tired, and hurt and tired, and the headache sets in.

And trying to process things with these - apparently my communication skills drop significantly as soon as you turn on a florescent light, and come back when you turn it off. Other sorts of processing is harder to test, but it generally gets messed up.

I know others who are more messed up by the lights. And others who are less messed up by the lights. I have other visual processing issues (headlights are one of my biggest ones), and many others in other senses. But, we don't need to look at dealing with everyone always. We have to look at doing what we can to make things better, when we can and how we can.

When that means in my bedroom, giving me LEDs, for when I can't use natural sunlight, that's a thing, because that's something that helps. And that's a thing that is worth mentioning even though it doesn't fix every visual processing issue I have, not to mention every sensory issue I have.

When that means, getting places to at least replace the bulbs earlier if they have to use florescents - that'd be a huge step.

But, right now, as I walk around, I'm in a way showing people that this matters, and when it comes up I explain. I'm wearing my tinted lenses, for myself, but doing it for myself is being open. And sometimes being open is enough to be saying a lot. Just wearing my lenses is enough for someone to say, why are there blue lenses? And that itself, is communicating to them about me, about autism, and about the importance of actually taking care of our sensory issues.