A Step of Red

Bluewashed.

The lights go up changing the color of the world and saying "I am aware of the 'horror'".

Pity for the parents while the people are told "you're ruining the lives of everyone around you"

I swing, trying to help myself. Trying to do what others will not, while inside I'm crumbling from the words they are saying. Trying to find myself having lost how to share, with thing after thing thrown at me.

My words. My words mean nothing. My words that I try so hard to share. They are lost in the tide of bluewashing, and so I try to regulate.

But then...Along side all of this, there is a step. Someone who listens. Someone who shows they will hear my voice.

Simply, a step of red.

Thank you for hearing me.

Joyful Movements

I want them to see someone gleefully flicking their fingers in front of their eyes as they skip back and forth across a room, awaiting instructions, and the utter bliss on this person's face. I want them to to see the joy of someone simply watching snow fall. I want them to to watch the Olympics, watch the athletes handflap in excitement with their results, and then stop and think about whether they really can say that someone shouldn't do that.

I want them to watch someone just get something for the first time; whether multi-variable calculus, or how to find the formula they need on a sheet. I want them to watch the knowing success of someone, even in something they find trivial.

I want them to let themselves be a child, and skip and jump through leaves. And then think, is it so important that we are so proper all the time?

I want them to let themselves see the smiles on the faces. The joy, even in its own ways.

And say, sometimes, the movements. The spinning, flapping, flicking. It's not disruptive, but it is a delight, among so much else.

Why should we stop that?

Invisible Disability

I'm not who I am. But I am who I am.
I don't get to choose you see.

They tell me my feelings, my hopes, my dreams.
They tell me my struggles, my pains.

Who you see, who I see, are they the same?
Do they tell you and you see someone new?

When I try and I fall, but I do it myself
Then I'm told, oh no, that can't really be you.

Do you see the falling? Do you help me up.
Or do you see someone lying for help?

Do you see someone trying and struggling and making it?
Or do you see someone easily gliding through life?

When I don't see the way, am I alone in the dark?
Or is there someone to guide me along?

When I get lost at a corner that I should see,
Will you taunt me, or show me the way?

If I show you my struggles, will you see them?
Or will you look away, denying.

Am I my voice, or what I say?
Can I be myself, or am I what they say?

Disappearing processing

Usually I just write posts when I have something to write about. I sit down here in order to write out a post, and while what comes out might not have been what I planned, its organized. Alternatively, I write a post in my head as something I want to say, because of what has been going on around me, and share it when I get to a computer.

This is completely different, and feels more personal in some ways. It's worth sharing, so I'm sharing it, but its not what I normally write. This is when I was asked to do something to help out and I couldn't, and went to say something online, what came out. This is what I was saying, while I was losing my ability to process senses. This is a description of senses being more jumbled up in real time.

I plan on these happening. I organize my day and my week so that my body losing the ability to understand the world has minimal effect on others. I have taught myself things from mentally being able to swap visual processing off and just use processing the other senses to understand what's going on (and without vision it is easier to process other senses, especially hearing), to how to get backup information from alternative senses, to what I should carry with me to keep myself safe. I reduce sensory input to reduce frequency, and give myself what I seek more than I seek it.

But still, when it happens it can be disorienting and make me feel like I'm not able to do what I need to do. No matter the frequency, it makes me feel like I should be doing more.

So here. This is one sort of what its like to be losing processing. Typos are because I could no longer process vision even enough to have any tunnel vision; it was just gone. I'm not sure how understandable it is. I feel like its missing so much. But, even little bits help with understanding.

I can't adult.

At school all day today my vision was blurry from not processing vision and I tried to work through that.

My speech was reduced.

Being able to remember where things like the work I was giving them was barely there. If we finished early, extra stuff, I didn't have any clue what to do and couldn't make it up despite usually being great at that.

By the end of the day I was sitting there losing time in dissociation.

I had stuff I was supposed to do here. I got a load of laundry in. I stopped functioning. I've not managed to swap it over. I've not managed to get myself anything to drink. I've been home 6 hours and thirsty the whole time.

My body isn't understanding what's going on around it at all. I'm hearing sounds and they don't mean anything. I'm seeing things, and the things I'm focusing on writing, I can see a fraction of my particular post here, and everything else is gibberish, if it exists at all.

I feel cold on my back and I don't know why. I feel things on my hands that I can't understand. They might be touching things I don't know what. I think my head is spinning. I can't figure it out if it is or not. I can't understand anymore. My vision is getting more lost. I can see colors now. I am typing from muscle memory.

I'm supposed to be doing things. They need my help. If I don't then food will be delayed even more. I don't know how to adult. I don't how how to keep my body froom floating off in pieces. My arms are glued down and heavy and my legs are unattached and my back is only partially feeling things and I don't know what is happening to me.

I need input that I can understand but I can't understand enough to get it. I need things that are clear. I need sound that is defined. I need strong foods. I need heavy weights. I need to be held tight. I need to touch more things. I nee to move and everything.

And I'm hthe only one home and will be for at least another 30 minutes.

At least I'm in bed with my blanket.

Coming Out Autistic

Every time I am open about who I am, it opens up the world a little bit more.
It makes it a little bit more aware that people like me exist.
It makes it a little bit more accepting that people like me exist.
Every time I do an action that we're told we cannot do, it says, "Hey look, this works. Hey look, we can do this."
Every time I say who I am, I make it easier for you to say who you are too.

Society isn't accepting of us. Society defines us into roles, ostracizes us, stigmatizes us. Society fears us and makes us fear it.

And being openly autistic, doing what I want to in life, being impaired and not a stereotype... that helps with teaching society that I am both a verbal disabled autistic adult, and someone who is a success.

And with that, as others do too, it teaches them about autism.

Maybe that'll mean you can be who you need to be. Maybe that'll mean you fear being yourself less. Maybe it'll mean you'll let yourself know this is who you are, and instead of trying to deny it, try to find ways for you to enjoy yourself as yourself. Maybe it'll mean you'll fear others less. Maybe it'll mean you can walk around flapping and humming and wearing ear muffs, and then, go, and be one of the most productive people at your job because they actually gave you a chance to get through an interview. Or maybe it'll mean that you'll go to college when you had thought you couldn't because of the messages around you. Maybe it'll mean that slowly we can erode the idea that working full-time is required to be a worthwhile human being. Or maybe it'll just help you find a way besides a 9-5 to make your own way in this world - whether monetarily or otherwise.

Maybe I can help you be you, by being me.

Passing (or How Little They See)

I walk down the hallway, my hand running across the lockers, across the walls. It keeps me here. It shows me where I am. It keeps me balanced and makes me understand what hallway I'm in and when I need to turn.

I go to the room. The bell shrieks. I freeze up. I forget what I'm doing and where I am. All that I know is the noise. It's too much. I don't know how to move my arms to cover my ears. I don't know how to soothe myself. I just know how to exist, frozen, in space and in time.

I come back. I go back where I was. I continue on, talking about whatever was going on. Had they changed topics? Probably not. Usually its me teaching something. I just keep going. I explain it well. I tell them what is going on. I teach myself that when the bell goes, I need to tell them to leave even if they don't want to go to class. Eventually I remember that. It takes a while to stop teaching and tell them to leave, but not too long.

I have my math. I go back to it. I have how people are doing. That I keep track of. Why they aren't doing well. How can I improve their educations. What aren't they getting and how do these pieces fit together. I keep track of it always. I'm always fitting the pieces together.

They don't notice. They see someone teaching math. They don't notice the person always taking care of their body in order to have any clue what is going on. They don't notice the lack of anything off topic.

Then someone says hi, and I don't reply. They repeat it multiple times. I eventually process that there is someone there talking to me. A bit later I process I should reply. Um, what do I say, I don't know. Too much going on. All my processes on surviving. Not on these things. I try to redirect because its necessary. Enough gets through. I wave. I'm pretty sure that was the right thing to do. Words were to hard but gestures I could force through. I think she got annoyed first. My emotion sense of voices are saying "negative".

I keep going. I have to swap places I'm working. Does everything else get to stay the same? Yes, good. I forget some things in the shuffle. Got most of it. Piece it together. Managed to make it not a big deal that I forgot pencils by loaning out my pen repetitively. All the things I have to think about to manage to swap are so many. But its not so many that I can't teach my students, just that its a bit more awkward and we're a bit slower. We make it through the day.

Because I swapped places I'm expected to get my students here somehow. How do I do that? I ask. I'm told there's the phone to the office or something. I don't understand. I look at my list and have names and locations. I ask what to say. She explains something about asking for locations and students and I don't understand what to say. I try to get it clarified but its still confusing. She moves onto something else. I do everything I can to make it easier to do our work, but run out of things to prepare. I need my students. I go over and pick up the phone. I say hello. There's someone there. What do I say. I don't know. I'm confused. I try to ask the person in the room again, and I still can't figure out what's meant. I try to explain what I need and it doesn't make sense. I try again. It still doesn't work. I directly say what it is I need to tell them, that I have students in rooms and I need them here and I don't know how to get them here. They ask for what rooms and what students, I tell them, and get my students. Now I can do my work. I know how to work with students. Not how to do these phone things these are weird and complicated.

I go back to the hallways, flapping my hands, running them along the walls. I re-orient myself here. Make myself understand what is going on. Then back to my students. Teaching them makes sense, if I only I can get through the rest of the day.

All the parts

Communication is hard.

Think about all you need to do. You need to figure out what you want to say. You need to think about how to say it. What words to use. Where the emphasis goes; breaks, and pauses, and points of forceful emotions. You need to think about what ideas there are associated with those words; all of them, not just the ones you want. Do you want those? You need to think about ups and downs. And you need to think about other people, what will they do what will they think?

People are confusing.

Do they know the words that I'm wanting to use? Do they have other connotations, other implications, to the phrases than I do? They haven't had my experiences - I know that. Can they understand my explanations, with the feelings that go along - the struggles, the excitement, the fear, the joy - all just from the phrases chosen to express what I'm attempting to convey?

Why are they annoyed? Why are they asking these questions? Why are they saying these things? Why do they act in these ways that make no sense? I want sense. Sense of the world around me. These things these people are doing do not fit in any understanding of the world I have.

Why? Why do they act in these ways? I need to try to figure it out, so that I can try to make them understand what I am trying to say. What I am trying to make them understand of my world, of my thoughts, of my experiences. I need to try to understand how these others think so I can try to make them think what I want them to, for at least the period of time of reading what I say. I need to understand. I need to understand, and how can you understand when you don't have that information, when you're missing pieces, when the pieces you have seem to contradict, when you have too many and too few at the same time?

There are so many parts.

Ideas to words. Words to phrases. Phrases to sentences and paragraphs and more. The pieces need to come together smoothly, the words do, when you're writing. But the ideas need to as well. The way you communicate, the way you shift focus, and emphasize, and the way you draw attention with both the word choice and the structure on the page.

Bits and pieces, all piling up to make something larger. How does it work? We understand it, but can we understand what we want it to be? Are we predicting properly? Are the bits the right bits and the pieces the right pieces? Are our ideas being too tied up in our experiences to be understood?

Letters to words, the page fills. But what do these squiggles mean?

Context

One of the blogs I still check up every so often despite the fact she's not posted in years is Just Stimming. Which always reminds me of Quiet Hands. Her post that went viral (for good reason). Her post that I've shown to so many professionals and they've finally started to get it better.

Today though, I think of that post for a different reason. I think of it because of the image at the top. I think of it because of how many different things that image can say, and does say, and how many different ways it says it. I think of it because context is important.

I think of my student, flapping his hands instead of focusing intently on his work. I think of him getting his work done as well as that. And I think of an adult, taking his hands, pulling them down under the table, and holding them for a second or two, telling him to work instead. She doesn't use the words quiet hands. She doesn't need to. She still takes the hands of a child, and stops his stimming, because being autistic is not okay. I flap my hands for him. I flap my hands at all the schools I work at.

And yet, at the same time, I think of my boyfriend, taking my hands, and holding them down, stopping me from scratching my legs for who knows how long. Holding my wrists, putting pressure to try to show my body that there is something okay in it. Trying to help me find a way to make my body feel like something other than a giant thing of wrong-ness, in a way other than scratching it all away until it hurts and the only way to stop the hurting is to scratch some more.

I didn't want to scratch. I wanted help. I wanted to find a way out. I was struggling and every time I tried to keep my hands still on my own I failed, but that was something I was trying to do. He was holding them in ways that were trying to help me, watching out for that.

My student. He was stimming. He wasn't doing anything to hurt himself or others. He was getting his work done. He was stopped against his will.

The same action. The same controversial action of taking someone's hands and holding them down - in two completely different situations. In one situation it hurts, in another, it helps.

But what's so controversial about just doing things for the person, rather than "because autism is wrong"?

No Words

What do I say when I don't have words? You're verbal they say, you should speak.

But the thoughts don't turn into words, and the ones that do, don't turn into speech. There's a disconnect. It doesn't work, even if I try and force it. And when I try, the words leave.

The words only work if I let my fingers do the talking. If I let my fingers say what the thoughts want me to say. If I let things go naturally the way my body wants them to. If I don't try to force my way into a thing that isn't me at this moment. Some words come when I let my fingers say them.

But speech, it doesn't. It's disconnected and the thoughts don't make it there. And truthfully, it feels calmer inside like this. I don't want to fight it. I don't want to try to make myself have to fight back to how I normally am. I do sometimes, when it makes more sense to. And it hurts inside (and might make me sob from how wrong it is) but sometimes I forcibly piece this connection back together.

But either way, I know, I'll speak again. The disconnect is only there sometimes. It's there when I can't handle everything else. It's there when I don't have any need to speak. It's there sometimes, just because it is.

There's no reason. There's no fear, or anxiety, or things I'm near. I'm sitting here in my room, the same place I spend much of my time, typing away here, with just me and my cat and my weighted blanket. It's the same as any other day, except today the words don't work that way.

And I'm okay with that.

I'm okay when the words don't come. It's harder. It's awkward when you end up at a coffee shop with too loud of music, trying to just order hot cocoa and a bagel with a phone and gestures. But, they listen to the AAC device, pay attention to the pointing to the bagel when they struggle to hear it all, and it works out.

I'm okay with it taking longer, and with some people not taking me seriously. Some people don't anyways, so what if there's a few more people who won't listen. I can still get what I need to done.

I'm okay with knowing that sometimes I'm like this, sometimes I'm not, and people telling me that I can't be. It's either selective mutism, despite not matching any signs of selective mutism besides the fact that I'm verbal and sometimes am unable to speak, or a lie and I'm always able to speak and just don't want to.

I'm okay with just being how I am. When I have words, when I don't have words, and when those words need certain ways to get out.

Typing is faster and more accurate than speaking anyways.

My diagnosis was about them being different, not me

I was diagnosed with both Asperger's Syndrome and Sensory Processing Disorder at age 22. They were a long time coming. The symptoms had been life long, I'd been coping with them on my own, and now I finally had been labeled. It wasn't being signaled out, being told, "you are so different, look, we need to give you a special name." No, truthfully, my diagnoses weren't about me being different than others, they were about others being different than me.

Some people are against diagnoses. They worry about labels for themselves. They worry about labels for others. They think that people will be told how different they are, and really in this society different is commonly viewed as lesser. The truth is, we are different either way, its a question of knowledge. Giving people more information won't make them anything they aren't. It will, help explain.

Some people I talk to, describe growing up knowing how different they are, knowing there's something odd about them, searching, wanting to know. They describe finding autism and this meaning they finally understanding their childhood. This wasn't me. I didn't know how different I was. But in both cases, knowledge can be helpful.

For me, like I said, it wasn't at all, about me being different, it was about others being different than me. By the time I was diagnosed I knew I was different, I even knew I was autistic, but I didn't understand it. Through the diagnostic process I learned a lot of what my impairments were; because they were things I assumed were true about everyone. Over a year later I'd be reading yet another book about sensory processing, and say "wait, that's not true about everyone?" and learn yet another way that I just have adapted, and have been coping. I assumed others were like me, rather than assuming I was different. I forced myself through things, but I didn't do it in a way that was taking care of myself, or that was allowing me to get much done, while others were developing anxieties. In both cases, we needed to stop, and learn how to do things properly.

I'd adapted a lot to the world on my own, by assuming it was what everyone was doing. It wasn't in a way that let me get nearly everything I should be getting done done. It wasn't in a way that lets me manage myself properly. So, when I realized this wasn't what other people did, and that there ways I could do things that allowed me to manage myself more properly; I needed to learn them. My own techniques were and are, a great resource. But now I'm learning about myself in ways that mean I don't need to manage making myself nauseous every time I shower.

The diagnoses told me they were different. It told me what I didn't know. It told me how I could learn. It gave me the opportunity to make things better by finding new solutions. It gave me the opportunity to figure out that not everybody has some of the limitations I assumed. Telling me I'm different, might not tell me where to go, but I had somewhere to go. I had a lot to learn. And I've learned a lot about myself. Comparisons aren't always bad. You just need to know what sorts of comparisons you are making, and to try to learn to make fewer assumptions in the process.

Now I deal with the assumptions being made about me, because of my diagnosis. They assume what I'm like, because of my label. This is why they don't like the diagnoses, I suppose. Because they don't like the assumptions. But I still think these assumptions are better, because now I know, and before I didn't know that I didn't know, and that makes a huge difference.