Monday, March 17, 2014

Stop combating me, start helping me make it better for the children of today

I'm denied help, even if the help is even available. I want to work, but jobs aren't open to dealing with someone like me. I struggle along, my senses giving me false data, but the therapy to help me learn how to deal with this false data through adaptive tech, learning other methods, and training my body, is denied by insurance repetitively.

Bus drivers tell me how I can't be disabled when I use my disability pass, no matter how much my symptoms are actually affecting me. In public, people scream at me, telling me how I'm lying for trying to cope, instead of something as simple as taking a seat on the bus when it would give me a migraine. In multiple, completely different, scenarios, I'm told speech is the only way to deal with things, even when that's completely wrong.

I'm screamed at, not allowed to get things done, denied help, being taught that I'm innately wrong, and told that it's for my own good.

You're not combating autism and you're not doing a thing to make it better for me. You're part of this. You're part of this society, who says that its for my own good to get denied the help to actually learn how to live as an autistic person rather than be stuck as a burden while screaming about how worthless we are because we're burdens. Autistic people shouldn't exist? Right? That's what combating autism is? Telling us how we shouldn't exist?

Stop it. Stop combating me. Stop combating all of us. Fix it. Help us. We deserve help. We're other people here who are being pushed around and abused at an absurd rate, which I'm not even comfortable looking up anymore, because its so high, because what autistic therapy is frequency compliancy training, along with the rest of the world training us that we're worthless and need to follow them. Because we're not good enough how we are.

Instead of putting less than 2.5% of the funding into research on services. Actually pay attention to services. Actually pay attention how to help us live as autistic people. Because that's who we are. That's how we live. We won't swap to being neurotypical. Going through and figuring out how do we live as autistic people, through things like occupational therapy, things like AAC apps, and things like PCAs are what we're needing. Not stim suppression. Help us.

Help us figure out employment and if we want it higher education. It's not necessary for us to be worth it, but really, it'd be better for everyone else too, then, because we can be great employees. We're just stuck without employment, even when we want it.

Help us learn how to say no. And help us have people listen.

Help us have society listen.

Help us say that combating autism isn't getting rid of it. It's helping us live. Without attacks every day.

Stop combating me. Start combating the attacks. And instead, make it so that the world the autistic children currently live in isn't such that it will be such a hostile place when they grow up. Instead, its not somewhere where they struggle every day in order to get through the day because of everyone and everything around them. Make it better for them. Because if we work on this, it will be better for them.

Isn't that what combating autism is about? Making the world better for the autistic children of today?

Monday, March 3, 2014

The empty mind

The empty mind of overload overtakes, causing thoughts to run and hide. One after another things I want to say or do get lost; things I need to do get forgotten. The empty mind overtakes.

What would it be like, to be able to put thoughts down on paper? What thoughts are these that I am struggling to pull together? I know they're there. I know I have ideas I want to share. Instead, they're lost, again, as the only thing I hear is louder and louder noises, and the only things I remember are the fact that there is supposed to be thoughts.

What would it be like if I didn't forget what I was doing, because the empty mind has said that its not there. That there's only fog, and blank, and noise? How much more of what I want to do would get done? How much faster would I be able to do?

What would it be like, if instead of struggling through a fog to complete things that I know how to do, because of headaches and pain, hearing everything around me, and things feeling wrong on my skin, if the fog just lifted? What would it be like to not be alone in a fog, with the rest of the world out there, separated, and needing effort just to interact.

What would it be like?

Instead, the empty mind overtakes once more, thoughts are lost, things left undone, and another struggle to communicate commences.

Thursday, February 27, 2014

I am not a burden (Day of Mourning 2014)

I am not a burden. I need to repeat that, because the opposite is told to me too frequently, and digs in, and catches hold. I am not a burden.

I am autistic. I am disabled. I am not a burden. I am a person.

You were nine years old. You had a life ahead of you. Then you didn't. You were a person. Not a burden.

You were twenty-four, or ten, or fifteen, or forty. All of you, you had lives ahead of you. And all of you were PEOPLE, not burdens.

None of us are burdens. No matter what's said to us.

It's not okay that you were killed, that you were murdered. That your lives were snatched from you, just because you were disabled, just because you were different.

It's not okay, that people are saying that it is fine that this was done because you were a "burden" and that you made your family's lives too difficult.

It's not okay that people think that our LIVES are less valuable than theirs.

It's not okay that people speak ill of the dead, justifying the actions of murderers.

It's not okay.

I'm not a burden. If I were murdered, would they care? Would society just say, that she doesn't work, that she's just autistic, that she makes people take care of her, that she's not a real person?

When I'm kicked down and abused, am I the one at fault, or is the abuser? Is it because I'm autistic that I deserve it?

It's not okay.

Every time someone says that I am a burden, I need to step up and say that I am not.

Every time that someone says it was not a big deal to kill you because you couldn't speak, I need to step up an speak, because I have a voice, that you do not, because your life was prematurely ended.

Every time someone says that the parents lives are too hard, so its not unexpected for them to do these things, I need to step up and say that autism isn't about the parents, and murders are about those who's lives were taken. Because disabled people are people too.

And every day, I need to work to make autism, to make disability, to make being different in any way, something that is treated better by people around me. Whether on the bus, in a school, or at my home, I need to say, it is not scary to be around someone who is different, but it is important to treat them the way they need to be treated, rather than the way the average person is treated.

I am not a burden. You were not. The rest us of who are living are not either. I need to hope that there are no more of you, no matter how unlikely that will be at the moment, because maybe, hopefully, you were the last.

Nobody deserves to be killed by a parent. Nobody deserves to be killed because they are disabled. Nobody.

I'm sorry it had to happen to you.

Wednesday, February 26, 2014

Weighted Blankets

Weighted blankets are really powerful things. Maybe people have heard of Temple Grandin's squeeze machine (if you haven't, its quite cool), or maybe not, but very frequently deep pressure is something that regulates our sensory systems, and resets our bodies.

For those of us who are hypersensitive, for many of us, deep pressure is the one thing that resets us, or at least is the one that does it best. Our bodies hate most senses, they're attacks on our systems, but deep pressure, instead of being attack, calms us, protects us, and makes us feel safe. One of the things that is quite interesting about deep pressure is that it frequently helps those who are hyposensitive or seeking as well, because in both of those cases, they require increased sensory input, and this provides the increased sensory input. Deep pressure is the only area where all three of the sensory modulation areas seem to agree in enough cases that its worth defaulting to assuming it'll likely work; giving someone deep pressure is more likely than not to help them regulate better.

Deep pressure is the squeezing of strong hugs, the compression of joints when you jump, the weight of lying under a mattress. And this feeling, helps many on the autistic spectrum, with sensory processing disorder, with anxiety disorders, and even without any diagnoses, calm down, think better, sleep better, and generally function better.

For some of us, this is necessary, things that calm our sensory systems are the only way to be able to manage to get through daily life activities. For many on the autistic spectrum, sleep is a huge challenge; the same thing holds here.

So we get back to weighted blankets. Weighted blankets are, as it sounds like, blankets that are weighted instead of just being fabric, while still being functional as a blanket rather than stiff or uncomfortable. Sleeping with these blankets allows those of us who need sensory calming to sleep better; I know of multiple cases of melatonin being stopped after a weighted blanket was used while before it was required for sleep. It also allows our days to function better because we're starting from a more de-escalated state sensory-wise at the beginning of the day. Throughout the day, they can be used as a blanket might, wrapping up on a couch while working. Again, it causes reduction of sensory-overload even before it hits, holding it off or even preventing it if it reduces it enough. If overload, meltdowns, and shutdowns occur, they tend to be shorter if the blanket is provided, because it gives the sensory needs without someone constantly worrying about providing a type of input that can be difficult for people to provide for themselves or others for anything more than a very short period of time.

My weighted blanket is one of the largest coping skills I use. If I go somewhere for a weekend, I deal with carrying around a 24 lb queen size blanket. It's not convenient but its worth it. I frequently can write when I otherwise wouldn't be able to only because of my blanket. It helps me through many overloads. It helps drastically with my sleep. It's a very valuable tool, enough that I'm working on getting another blanket.

The downside of weighted blankets is that most places that sell them are expensive. However, the other option to buying one is making one. What I'd done for mine was make it. If you sew, have a sewing machine and have time free, its not bad to make one, just time consuming

The method I'd used might not be the most efficient at times; but it seems to have generally been a good one. The basic idea is that that you want evenly weighted pockets, all about 4 inches x 4 inches (that's been found to be the right size), that add up to the proper weight. The proper weight will generally be 10%+1 lb of the body weight of the person who will be using the blanket.

Instructions

  1. Determine size and weight

    I wanted a blanket that I could both completely wrap around me and would work for two people sleeping. I thus decided I wanted a blanket about 55-60 inches wide. As my boyfriend is 6'4", I decided to make a 80" long blanket. For a 43" wide blanket (twin size) its recommended to use 10% of body-weight + 1 pound. Because this is larger, I'll use an increased weight, probably about 23 pounds instead of 15 pounds.

  2. Gather equipment

    In order to make this blanket it required I borrowed things such as a sewing machine. Necessary equipment includes

    • Sewing machine
    • Measuring tape, pins and other sewing supplies
    • Kitchen scale for measuring weights
    • Butter knife
    • Funnel (can just be paper)
    • 2 cups for measuring plastic in and pouring into that first cup.
    • Tweezers or pliers
  3. Gather supplies

    In order to make my blanket, I needed to gather up supplies to make it out of, including trying to minimize prices. Optimal design seemed to include having four layers of fabric, to increase durability, the outer shell being removable for easier cleaning, and weighting with poly-pellets.

    • Poly Pellets for weight

      Online research suggests that poly pellets tend to work best if you don't mind the increased bulk in using plastic. This wasn't an issue for me and durability matters much more to me than how bulky it is anyways. You can get poly pellets at craft stores. If you care about price, don't. You can get it drastically cheaper on ebay. I ordered 30 pounds of plastic in two 15 pound increments for $2/lb shipped.

      Some people suggest using beans, be aware that any food product can get moldy, and has major issues being washed (as dried food products rehydrate when put in water). Either poly pellets or aquarium rocks that you are sure won't hold water if its washed tend to be your best bet for a filling material - poly pellets would be my suggestion, as the increased bulk is actually something that is nice to me, and is not nearly as large as people make it out to be.

    • Fabric

      You want durable and comfortable. If you don't get distracted like me, a duvet cover for it is a good idea, and allows you to only worry about durable for what you are building the pellets into. If you don't want to, or expect to, manage that, then plan on that. I used sheets for my fabric. The convenience of sheets is very high.

  4. Measure fabric

    While nominally I had 60" wide fabric, one queen sheet, and two full sheets, truthfully, the 60" fabric was actually 69" wide. This was far more over its nonimal size than I expected, and its relevant to know that now.

  5. Wash fabric

    If you prewash fabric then it'll shrink before you make the blanket rather than shrink unevenly after.

  6. Cut and hem fabric

    These are large peices of fabric. In order to cut them straight I used the method described here. I found that using a small pair of pilars worked drastically better than tweezers - it was easier to pull straight, and thus I was able to pull out longer strands. Ripping the fabric also works.

  7. Sew two peices of fabric on 3 edges, leaving one open for filling.

    Be careful while doing this that your fabric lines up. In my case, it one of the sides wasn't actually straight - I left that side open so I could patch it at the end.

  8. Flip the fabric inside out into a giant pillow-case like thing
  9. Measure and mark every 4 inches down the sewn bottom
  10. Sew columns

    For each column, first measure out and mark a few point on the column to help you keep it straight, then sew using the sewing machine. Because I was filling mine from the side, I had 20 of these.

  11. Calculate wight per pocket.

    4"x4" pockets are recommended. Each one of these should have equal weight. Calculate the number of pockets your blanket will have (mine will have 340 pockets), and divide the weight you want by the number of pockets. I'm ending up making about a 25 lb blanket because it is so large, and will put 34 grams of plastic in each pocket.

  12. Measure plastic and put it in each row.

    Measure equal weights of plastic and put it in the bottom of each row. Even though you can do it without a funnel, use the funnel, it both increases the speed to mess ratio, and is a useful marker of how far along the row you've gotten.

  13. Pin the pockets shut

    Measure 4 inches for the height of the pocket, push all the plastic down (with the butter knife), and pin it shut.

  14. Sew along making those pockets

    This is a very slow process. This is also where a butter knife comes in handy. In order to not have the plastic pellets get caught and stop the sewing machine, you need to kepe them out of the way. The best way I found was to go pocket by pocket and use the flat side of a butter knife to push them down into the very bottom for each pocket. When you inevitably get a pellet in the foot of the sewing machine, pick it out with something small - likely the tweezers or piliers you used earlier.

    For the first two or three rows its easier to pass the weighted section through the sewing machine. By the time you're half done its far easier for the weighted section to be supported next to the sewing machine.

  15. Repeat steps 12 through 14 for each row.

    If you want to fill the last row you can. Do be aware though, that its far more likely than the other rows to cause a broken needle if you didn't give sufficient room for the seam. I started filling the last row, then broke the needle, and gave up on it.

(btw, for just linking to the instructions and not scrolling down, if you're saving a link or such, click here)

Wednesday, February 19, 2014

A shower

The water turns on, and you wait for it to heat up while you do your exercises for your ankle. Counting 20 of them. That's how long it takes to get the water to warm, is twenty times onto your toes and back, and doing that helps with your ankle strength. Then you step in.

You were careful to bundle your hair first. That way your hair could stay as dry as possible. But without a good stream of water you have to be careful still. You don't want to let your hair get wet. Then you have to deal with it drying. So you are careful about where you stand, and where the shower head points trying to be as careful as possible.

Lots of little beads of water, hitting your skin. You feel every one of them. They're very uneven. You're very aware of every bit of how uneven the temperature of your skin is too. It's not comfortable. The shower pressure knob has fallen down again, and you turn it up. It's not as bad at full pressure, there are more little beads of water now. It's less uneven. It doesn't feel so wrong.

Even closed the shampoo bottles are noticeable, and the smell is getting to you, especially combined with the heat. If you turned the heat down, your entire body would be in pain, both in terms of muscles tensing into spasms, and in terms of the beads feeling like little knives cutting into your skin. So instead, you let your head rest against the side of the shower, as you become more light headed, the smell overtaking you, making you more and more nauseous and your head start to pound.

But, you need to get clean. So, you force yourself up, and put some of the body wash in your hand. This is another place you're careful, only getting the hypoallergenic stuff. Other things the smells stick around afterwards, and the feeling of the shower that lasts after is increased. But, you wash yourself, as quickly as you can, carefully holding yourself up. You need to be careful that you're fast, but at the same time, you need to be careful not to fall over with the nausea, lightheadedness, and vertigo, that has set in. Rinse. The pressure is more noticeable the longer you're in here. You need to get out, but if you're not clean the entire thing has been a waste. You're almost done. Make sure to get through it. Face, okay, clean your face. Because washing your face in the sink is even harder than this. Any water from the shower falling on your face feels like an attack, so carefully control it with your hands. Get your face wet, wash your face with something carefully unscented. Go to rinse, and accidentally put your face in the stream, it hurts, it feels like your eyes are being attacked. It's okay, it's okay. Make sure your hands are rinsed, and splash your face with your hands, over and over and over again. And after your are sure its clean of any of the soap-stuff another three time. Eyes still won't open because they don't trust it. Just carefully clear the eyes with water and your hands, show them its okay. Open your eyes. It's fine.

By this time you're wobbling, you don't trust yourself to stand. Are you clean yet? Finish quickly if not. Get out as fast as you can. Grab your robe and put it on. Trying to actively dry would be like ripping your skin off, so instead you have to make due with drying with a robe and time.

Go to walk upstairs, but now you've lost the ability to see. It's been too much. You managed to get out without jumping out in order to vomit this time. That's not always been the case. But that doesn't mean you got out without other...challenges? Okay, you want to get up to your bed, because you feel like you're going to vomit, you can barely understand what ground is, and now you can't see. So...feel around in front of you, you know your house. Find the railing to the stairs. Hold careful as you walk up the stairs. The railing changes most of the way up the stairs. Try to figure out how to deal, and just crawl the way up the stairs then. You make it. Get back up, and feel the way to your room. Find your bed, and fall onto it. Head pounding, you feel safe now.

You have somewhere you can just dry now. You can wait it out. You can let your head stop spinning, and stop pounding and go back to normal. You can let your stomach calm down. You can let your sight return to normal. Pull your blanket over you, despite the risk of it getting wet. Now, its just the time to get over all of this. Now its just recovery.

Vision comes back reasonably quickly. The others, take a while. If you try to rush drying then it feels like you're attacking yourself. If you try to get dressed before you're done drying, then your clothes don't stop attacking you even after you're done drying. But its better within the hour.

Except, there are still aftermaths. Your skin still feels wrong. It feels almost disconnected and overconnected at the same time. It feels too rough. Every touch that is made you feel for so long after its made that you don't even realize when its stops because it just keeps going and going and going. And its not pleasant touch, its that creepy crawly this is a bug crawling on your skin and its wrong, except multiplied. It's the feeling the bad part of tickling with out any of the parts that make you laugh, and it doesn't stop, it just keeps going and going and going, no matter what is touched. And then there's pain, pain from touching simple objects. Pain from touching something as simple as paper. Discomfort from touching the air. The only way to keep is under control at all is constant motion. Then those pains and discomforts and the creepy crawlies of every last hair, and cloth, and misguided object, and thing you bumped into, are overwhelmed to some degree.

Things aren't always easy. But, its what's needed.

Tuesday, January 14, 2014

Being articulate...

You're so articulate. You communicate so well.

People see these as compliments. They are compliments. They don't see the other side of them though, the struggle, the fact that, while being articulate, that's not always there, its only about what can be communicated about. They don't see that they only see what gets out, not what stays in.

People can realize that someone who's nonverbal has a challenge communicating to the world. They at least frequently don't understand what it is, or how it feels like, but that there is one. People tend to be very sight-centric and voice-centric, and push everything around those two things, so when you cannot speak, you are not communicating. In truth, someone who isn't speaking might be communicating, and someone who is speaking, also struggles.

You read my posts explaining how I am, I'm articulate. I communicate well. That's what people keep telling me.

But what about when people keep asking what I want to do, and even if I know something, its such an undefined concept in my mind, I can't figure out how to speak it. And I try to, and it gets confused and scrambled, and I get unable to understand what's going on. And people around me start getting impatient, wanting an answer, because I'm taking a long time to answer a simple question. But its not a simple question, its something that takes figuring out an answer, sorting through the details, converting it into words, filtering the words to speech, and talking. And its confusing to go through that when its forced instead of natural. And then eventually, I probably say "I don't know", because at that point I have no clue, even if I had an idea in the first place. And it likely is quiet, because my voice won't let me speak very loud.

That's fine. That's just not knowing what I want to do. But its going through and trying to deal with this mental stages of communication, that I have to go through in order to communicate when its not natural. I deal with both, natural, when I just know what to do, and unnatural, where I have to concentrate and figure out how to convert thoughts into words, and it takes time.

People usually only see the former. They don't believe the latter exists.

They don't see me crying in bed, trying to explain things, but it just being so difficult to deal with that I'm withdrawing, and crying, because crying makes it easier to cope.

They don't see week after week of trying to get the same idea across, and the problem being me, not being able to get the ideas that make so much sense in my head, to come out in words that make sense.

They don't see me explaining how to do things to people, and leaving out half the explanation as I'm mentally sorting through everything.

They don't see, that every time I go to a doctor, I end up with not having the doctor understand some of my symptoms, because I can't get them explained in words.

Words are hard. Using them, converting to them, struggling to get ideas out, when only a small fraction of the idea is coming every time you speak.

But then, it is enough. You're called articulate. Praised on how well you communicate. Told you can't understand what its like to struggle with communicating with speech.

And you go back, and try again. Maybe eventually, ideas will get through enough for others to understand. Maybe eventually, words will find their way, and it won't be stuck with needing to cling instead of use words because words are too confusing and too overwhelming. Maybe eventually, the words that come out will be ones that are understood by those around you. Maybe eventually.

Until then, its time to just keep trying to figure out ways to get thoughts onto the page, if its repeating the ideas, if its writing them, or if its clinging when needed.

And hoping, that maybe people will understand, that you can both be articulate, and struggle at the same time.

Sunday, December 8, 2013

The relationship between chronic pain and abnormal sensory processing

People don't often understand chronic pain - they think they do, they've dealt with pain, but generalizing from an ache and pain here or a headache there to pain being a constant part of your life, that it partially shapes your life. This pain isn't just there, its constantly there, and its not only constantly there, its what determines what life you're living.

The thing about this pain - this pain that is constantly there - or at least one thing, is that you can't stop for it. One of the privileges of not having chronic pain is the ability to stop because of pain, and it being the proper thing to do. When you don't have chronic pain, its not only acceptable, it is appropriate and right to stop when you've pushed yourself so far that you're hurting. It is wrong to keep going when you've caused pain when you can set it aside and finish it tomorrow, unless its extreme circumstances.

When there's chronic pain, you don't have this luxury. You don't have the option of stopping because of pain. You don't have the option of saying it hurts today I'll do this tomorrow, because it hurts tomorrow too, and the day after that, and so on. There are questions of trying to manage pain, and trying to not overdo it, but pain is no longer an excuse, pain is no longer a reason to stop going today unless the pain will be unmanageable tomorrow, pain is no longer a reason you can say that you can't do something now.

When someone has a bad headache they can take painkillers and say they can't do the grocery shopping today. When someone with chronic pain has to do the grocery shopping, they need to do the shopping. They might rearrange what they are picking up so that they're walking the shortest path, or such that they're not carrying any heavy items, but they still need to eat. Pain is no longer a reason to put off the shopping.

So, when it comes to abnormal sensory processing, the same types of things hold. Except that most people don't ever even get the headaches in the first place. Most people don't even get the equivalents of twinges of pain. They don't need to say that things are too much, they don't need to say they can't cope with things, they don't need to find to ways to cope with things that are going on around them. They never feel pain, except they never get any of the downsides of not feeling pain.

And then there are some people who have to cope with headaches and aches and pains. There are people who if you push them to far, or if they push themselves too far will respond with pain. They will sometimes wake up in pain without a good reason, and will need to react with pain killer equivalents and saying that today they can't do the grocery shopping. We need to be accepting of this. We need to let these people do what they need. These people are the equivalents of people who get headaches in a world of people without pain receptors.

Except, there's a level above that as well. There are the people with chronic pain. There are the people who no longer can say no, I can't do that today. There are the people who have to just keep going even though it hurts, even though the world is at constant war with their body and their body is at constant war with itself. They no longer have the option to say its too much, because its always too much, or that its not enough, because its never enough, or that its not right, because its never right. They always have to fight to make it as best they can, and as best they can is always still pain, and always still more than most people deal with, or can ever imagine dealing with.

These things affect people, and the lack of understand can too. Treating people right matters a whole lot. Remember that people can't always say no. Remember that not saying no doesn't make it easy. Remember that these people who are saying that their bodies are processing things differently mean it - when they're saying that it hurts and they can't take it today that they mean it, and remember that those of us who no longer can say that and who have to just try to grin it and bear it and the chronic pain it causes have to do that too. Please.

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.