Disabled Language

A decade ago I was good with words. Language was easy for me. Words were only infrequently lost, time was spent only on perfectionism, not on try to find ways to communicate the concept within my mind.

That's not true anymore. Between the fuzziness of migraine brain, the side effects of necessary medications, and simply not having enough spoons to spend them on language, words don't work the way they used to.

So why should I make them?

Instead of trying to have language look neurotypical, why not use neurodivergent language? For that matter, instead of trying to speak, why not type this, while words work through my fingers but wouldn't through my mouth.

Both of these rather make more sense.
And they're disabled language.

It's nouning verbs and verbing nouns (and so on, parts of speech are what you make of them). It's dropping words, and using antonyms to get my point across. It's using echolalia, and palilalia. It's repeating repetitively.

Disabled language. Disabled communication.

Incomplete sentences, improper spellings, incorrect words, and purposeful homonyms dropped into place. Built around a line that someone else has said, but now it being my line, because just because it's echolalic doesn't make it not communicative.

It's not trying too hard in times and places that spoons don't exist.

And it's having words like spoons. Words that mean things. Common language. Things that can be falled back upon in order to communicate ideas that take hours to get across.

It's forgetting halfway through a statement what it was going to be. And so what? Some of it getting across still. Or forgetting that it's been stated already and repeating, unaware what has been said.

It's playing with sounds, and the textures of the words, and the pattern of the letters on the page. Sometimes it's pretty. Sometimes, it needs to be changed to be made comfortable. Sometimes, the "wrong" grammar is write.

(And yes, I did realize what I did there, after I did so. But why change it? Why make myself go and edit mistypes when I'm making the point that I shouldn't have to. It means multiple things this way, the meaning is better this way.)

When words are hard, then they're hard. And when they're easy, they're easy. But no matter, there's no reason for me to use words that aren't mine. I shouldn't have to use words that are the proper words, just because they're proper. I should be able to just use my weird-words the way it is. Wordy-words, or unwordy-words, or wordy-unwords. Whatever. However.

I type to communicate

I type to communicate.

Look!
Here is communication.

Or when I type directly to people on the other side of the world, that's still communication.

What's different when we're next to each other? What's different if we're in the same room, and typing - computer to computer - rather than dealing with the challenges of spoken language? What's different if some are speaking and others are typing?

I type to communicate. Sometimes, it is the only way to get ideas across.

My tongue ties, and I try to speak. Words come out, but they're not what I mean. Confusion. Maybe it's good enough? But I want to do better, and I can when I type.

My brain revolts, and I try to speak. Nothing, I do not understand how the words go to speech. The migraine has stolen the key to that part of my brain. But I type, and can get what I need.

My body overloads, and I try to speak. Words come out, but it's hard. It steals capability. I cannot see. I cannot understand. I forget what I'm doing in the middle of my sentence. I type, and it's easy, it's understandable. My fingers understand what my vocal cords do not.

I type to communicate because it makes sense. Because it gives me more power to share with the world, thoughts I want to share, ideas I think others need to know.

I type to communicate because I can get more thoughts to more people. More ideas out of my mind. More stories where they need to be.

I type to communicate because communication isn't the same as speech and speech isn't the same as communication.

When it makes sense for me to speak, I speak.
And when it makes sense for me to type, I type.
And I can be someone who does both.

I can be someone who is verbal and someone who types to communicate.

I can be someone who is verbal and keep multiple AAC apps on my phone, turning to them at appropriate times.

I can be someone who is verbal and still think better in text. Just because I am verbal doesn't mean that my speaking voice is all of my communication.
Just because I am verbal doesn't mean I need to speak at all times.

I type to communicate. My words. My methods. My way of being.

Monologuing

It is the time for words.

When the time for words comes, if I start to speak the words come. They come without challenge; not hiding away, not mixed up in each other's places. When it's the time for words, the word finding challenges aren't there. The challenges of speaking a different word than I was thinking, gone. The sitting there thinking in translation, trying to find the right words for my thoughts, not happening. No, during the times for words, the words just come cleanly and easily.

How easy spoken word is varies. Sometimes, I find myself delayed so much I can't say what I need to meaningfully. Sometimes, words won't form in my mouth, no matter what I do. Usually, I'm aware of how little I'm saying compared to what I'm thinking, and unable to find ways to add more.

But in these times, thoughts translate easily, and spoken word is no harder than typed. In these times, speech isn't limited to the small percentage of what makes it through multiple layers of nets, catching thoughts struggling to get through, but too complex for what words are willing to share.

These times I have a thought, and a need to share it. Maybe a statement about how my day has been. Maybe something interesting I have read.

And when I share it the floodgates open. The words are easy; the thoughts flow! So many ideas, so many words, so many things I want to say! One thing leads to another, and another, and another! They all combine to a great story of how things are.

The words keep coming. So I keep sharing. I lose track of time. And these are things I want you to know!

Until, its been too long, and its bothering you. You're making that clear. And I'm not being able to shut it off.

I stop, and I feel this overwhelming pressure. Just one more thing. It's important! And after giving in a few times, I resolve to stop giving in, so as to be good to you.

Wrongness imbues my body. Pressure from my bones to my skin. My body doesn't like this idea.

A fight, breaking out inside me. Self-control is a struggle against an overwhelming feeling of wrong. I cry out in the pain my body is causing to itself. There's a monster in my body and it's me.

Eventually it calms. I retreat to my safe spot. The words lost again, I'm hidden away under my blanket. Quiet has fallen.

My voice not responding

I'm afraid
I sit here, my voice not responding, knowing I'm at work
Knowing that I have the choice
Attempt to continue
Or take care of myself

Yet taking care of myself won't make a difference
I'll still be in pain
There's not even a way to sleep
I have to push on either way

So why not, step up
Pick up a my cane
Push up, hold myself up, wobbling
But stepping
One step
Two step
Step by step, until I make it down the hall

Why not go on to the next class, no matter my pain?
No matter my balance issues
My senses throwing abnormal information
My nausea
And fighting to stay awake
No matter what ever is happening today
Why not?

I'm afraid
As I sit here, my voice not responding
People walking in, trying to speak to me, and me not being able to reply

Staring down at my phone, looking at my app, knowing its usefulness
And knowing here, I'm already disbelieved, looked down on, and supposed to be a "professional adult"

I have my solution
I can go, I can type, I like my app
But, will they respect me if I do?

Will I be treated as a person?
Will my knowledge be ignored?
Will what I've accomplished already be discarded because of my disability?

Is acknowledging who I am
Allowing myself to show
And allowing myself to take care of myself
Professionally safe?

I don't know.

I sit, not replying
Not knowing whether or not to click the saved phrase
Saying to those speaking to me "I have a migraine"

Until eventually I decide to go to class
And there, sit, not speaking
And not saying anything with my phone.

I feel like I did something wrong.

My survival kit

People have wondered, what are your tools for getting through the day? I carry things with me always, with more at home, so that I can cope. What I use varies on my situation, what I need varies on my situation, but I always make sure to have things available, because need frequently occurs.

I carry my backpack with me almost always. This is because its filled with tools that I need to assume I'll need except in unusual situations, and can be really awkward to swap stuff around for carrying things in alternate ways. When I need to assume I need everything, carrying a backpack is basically a necessity. When I'm not carrying my backpack its because I've pulled some of these things out, and also have a human there to assist me who knows how to if it is necessary to. I don't want to rely on my boyfriend if it is not necessary to though, so unless it is a minimal risk situation and he is there, I'm bringing my backpack.

Backpack's default set of items:

• Medication: prescription meds and supplements organized in a 4x a day weekly pill box, OTC things in my keychain, migraine abortatives, medication is necessary to always have available with me, and organized where it is needed rather than just thrown into my backpack and expected for me to figure it out when its necessary

• Earplugs: Noises are too loud and overwhelming. Earplugs are itchy and problematic, but laying hearing protection is sometimes necessary to survive without feeling like I'll explode. Also, I carry them on my keychain, so if I need to just pull my keys and wallet, I'll still have something to help reduce sensory input.
• Earmuffs/Ear defenders/whatever you want to call them: Primary hearing protection, I use earmuffs despite them being more visible, because they don't itch inside my ears. Sounds are too loud, too painful, mess with my balance...No matter how much hearing protection I use they're still easily understandable, but sometimes its no so overwhelming when I'm using it, and worth the discomfort of wearing things that do something like squeeze my head.
• (Folding) Long cane (also referred to as a white cane, though mine isn't white): Being able to always process vision isn't something I can do. How well I can understand what I see varies drastically, and how much it costs to go through that process of decoding what it means varies drastically. When it is more costly, or when no matter what I do I either am running on a few seconds delay for vision, extreme tunnel vision, or simply seeing but not understanding, I implement (more) strategies used by blind people. It allows me to use my mental power for things other than attempting to navigate the world by sight when sight isn't working with me.
• Folding balance cane: My migraines come with bad vertigo at times. I vary from being able not being able to walk with my cane, to running up mountains which require awkward navigation. I plan for both. Sensory overload, migraines, vertigo setting in, my body might feel itself or the world moving, my leg might spasm and tense up, not wanting to work without being in pain. Whatever it is, I'll not be limited, so I'll move with things that I carry instead.

• Tangle Jr: Such a useful stim toy! I carry the one which is covered by a squishy rubbery material, I don't remember what its called. So many reasons to want to pull out a toy and such a useful one to have
• Rite in the Rain notebooks: Because my hands hurt when touching normal paper. They feel like the sound of nails on a chalkboard. I can't handle it, and it makes me want to bite myself, though I rarely follow through with the urge. Having paper that is coated for waterproofing changes the texture enough that it doesn't hurt anymore! And they're waterproof paper too which is awesome.
• Compression gloves: My hands are the most reactive to everything texture, and frequently hurt. Showers hurt them badly. Sometimes simply the air hurts them. Compression gloves help, though don't get rid of it completely, so I wear them when it gets bad. They make it harder to do things, and make me prone to losing my medical alert bracelet, so I try to limit it to necessity, but when necessary, its the difference between being able to concentrate at all, and all my focus being on "my hands hurt".
• Altoids: PEPPERMINT
• the heaviest drafting pencil the stationary store had: Heavier pencil makes my handwriting so much neater, and makes it so much more comfortable to write.
• Kindle: Always have something to turn to! I always can go to any of my books. I don't need to read paper books. I can always turn to my books no matter where I am or what I'm doing!

Other tools:

• Smartphone/tablet (7"): I use both my phone and tablet (both android) heavily. I have communication apps, stimming apps, executive functioning apps. I use alarms to help me organize my day, complete with different sounds for different things. Having a computer on me always has been a thing I've relied on, but with smartphones I've been capable of swapping to just having my phone, though my laptop is very important to me.
• Tinted lenses: I wear greyish blue tinted lenses in order to help with visual processing. They help with having fewer visual distortions, fewer headaches, better depth perception, and generally, better visual processing.
• Medical alert bracelet: I'm always wearing a medical alert bracelet that tells people about my migraines, autism, and medication allergies. I've needed to use it before to communicate to people on my behalf.
• Compression shirts: Compression shirts are very useful for deep pressure that you wear on your body and carry with you always. Wearing them under whatever you'd wear that day for clothing, just works well. For extra compression, breast binders work well but some people would prefer not to use such a thing.
• Weighted blanket: I spend most my time at home under my weighted blanket, despite some people saying this is a bad idea. Without my weighted blanket I struggle with understanding where I am in space. With it, I can think clearer, and am more aware of how things are supposed to be, rather than the weird feelings of wrongness that exist in my limbs.
• Weighted vest: While the weighted vest doesn't work as well as the weighted blanket, it is a useful tool to add when going in public along with the compression shirts.
• Vibram Five Fingers: We have a theme here on the propioception impairments...Using minimalist shoes means that despite propioception impairments, I don't have issues with things like constantly spraining my ankle anymore! I'm able to use touch - feeling the ground beneath my feet - in order to adapt for the fact that my propioception is impaired.
• Peppermint oil mixture: I carry this in my backpack if I have a choice, but at the moment its in a bottle where the lid might get broken :(. A mixture of 50% peppermint oil/50% everclear, its useful for so many things! Topically its a good muscle relaxant. It's a strong peppermint oil, so it can be added to drinks, for peppermint flavoring, dealing with the fact that I can't drink water straight. The fact that I seek peppermint also has great benefits with such a mixture...
• My swing: I have a swing in my bedroom! It's awesome. It's an egg-swing I describe it as. Whether I'm actively swinging, just sitting in it hanging from it rather than sitting on something stationary, it is calming, and gives me a different sort of sensory input than not being in my swing does.
• My cat: She does so much for me. She's my ESA, my migraine alert cat, just my cat. She could easily be a service cat if I lived somewhere where I could have a public access service cat. I can't read my own emotions, but she can, and I can read hers, reading them off of her. She leads me away from situations when I'm getting overwhelmed. She helps with meltdowns. She alerts to migraines. She is too smart of a cat, and the perfect cat for me, doing so much for me.
• My cloak: In the winter, or fall or spring really, I wear a cloak for a coat. It's like a portable blanket! As well as all the other benefits of wearing a cloak (really, they're just better in so many ways), I get the feeling of wrapped up like I do in a blanket, and can use it like a blanket in public. When I prefer to wrap up in a blanket so strongly, this is so useful.
• Cefaly: This is an incredibly useful and incredibly interesting device. It's frequently referred to on the internet as a space crown or a space tiara. It's a device you wear on your forehead, have do electrotherapy for 20 minutes a day, and it reduces the number of migraines you have. Also, if you wear it during a migraine it can reduce the severity or even get rid of the migraine! It's really awesome, and my favorite part of my migraine treatment.

Other sensory things that I'm not currently using as much

• Brush for Wilbarger's brushing protocol: This protocol has been very useful! I still have brushes for "tune ups", though I don't do so frequently, just because of being out of habit. It's useful to have for when I need and remember, even if being out of habit makes it hard to use every time I'd prefer to. And the protocol was drastically useful when I went through the protocol.
• CDs and Headphones for Therapeutic Listening: Similar to Wilbarger's Brushing Protocol, I went through this program, and use these for tune ups now when I'm most sensorily in need. In these one's case it has more to do with when I have the time to be spending 20 minutes no doing anything mentally stimulating, and not moving (because while you're allowed to move around during the program, my body cannot handle moving at all).
• Theraputty: Great stim toy, even better for strengthening wrists when you've injured yourself stimming. I have the set of 6 different colors and will work my way up to the second to strongest from usually the second to weakest if I've done something like bothered my wrist. Otherwise, I like the second or third to strongest to play with.
• More stim toys: Description unnecessary in my opinion.
• Noise cancelling headphones: Really useful to have some proper noise cancelling headphones, but it requires having good noise to play with them. Wrong noises and I can't focus on what I want to focus on.
• Respro Mask: I have an activated charcoal/HEPA combo filter mask, for dealing with smells, how toxic the air is, etc. It used to be one of my commonly used items and always in my backpack. The issue is that my face is too small for it now :( and in order to get a smaller one I need to buy both a more expensive mask and a filter that isn't the filter it originally comes with so I keep forgetting to order it.

Plus, on top of my tools, I have many coping strategies that are internal. I have taught myself how to use sensory information that isn't the "expected" one for a situation. I will visibly stim. I will use things like walking following lines, with my hand on the wall, or feeling where the grass is and where the sidewalk is. I've taught myself how to turn off processing for senses at will, allowing me to not be overloaded by them, or to be more easily able to process other senses, or other ability (such as speech). I've taught myself how to alternate necessary skills, in order to get through a situation, when I should need all of them, but can't do all of them simultaneously, by turning off everything that isn't completely necessary; keeping myself balancing, walking, seeing, speaking, in turn.

I have lots of skills, lots of tools, and use them. Because I know I am impaired, but I want to do things anyways. If that means doing them in odd ways, where I end up exhausted, dependent, and in pain, I'll do them anyways, because I'm going to choose at times its worth it and know how to do it when it is worth it.

Cute cat pictures

What do you do when you don't know what to do? When you want to support and be there, but no matter what you do it can't be enough?

What do you do when you want to support, but no matter how hard you try, you cannot figure out a way that would be support?

What do you do?

Words unformed.
Actions uncompleted.
It's all too complex to figure out.

What do you do, when no matter your actions, they won't be enough for the emotions? When no matter what you do, you cannot portray what you want to portray, and whatever you do, you cannot fit what they are going through?

What do you do when you want to be there, but you can't even figure out a way to reply?

What do you do when you want to and you can't figure out how?

Figuring out how is so complicated there's so much understanding needed to know what to do. There's needing to know how people reply, how to calm someone down, and what helps when they need help. There's needing to know how to show, how to make people realize what you think, when your mind is protecting yourself from the overwhelming onslaught of the emotions showing their full strength. There's needing to know what to do, what to say, and what the reactions will be.

Wanting, caring, feeling a need, doesn't mean that I know what to do.

So in the end,
an emoticon,
a lolcat,
or even joint monologues,
are the actions of someone who cares, but cannot figure out the actions to show it.

Because something that helps, is something that helps, something that says that I know and I feel is something that says that, and it doesn't matter if some think my way is lesser, it matters that I help.

I'll collect up cute cat pictures for those in need. I've figured out my way.

Struggling to Explain

I wonder if they realize that I might ever show symptoms. They know my diagnosis. I don't hide who I am. They've seen people there to help me out. But I'm an adult.

Expectations are broken. I don't know what to do. My brain feels jammed up. But instead of being supportive, or even saying that yes, they made a mistake, the same question is repeated. The question which doesn't get a reply the first, or second, or third, or fourth time, keeps getting repeated. The question that just keeps saying "you should just take what we're offering, even though it won't actually help, and will actually make things worse".

Jammed, unaware what to do. All my routine broken. Needing to get stuff done, because people keep saying things to me, that say I need to have an answer in the next 10 minutes, 5 minutes. I stare at my phone, still not having an idea, still feeling like everything is wrong with the world, still feeling a need to hide, but not even having a place to hide.

Explaining is too hard. I can't figure out how. Even now, I can't share the lost and confused feeling of not being able to organize your thoughts or feelings. I don't know how to make even people here have the least bit of understanding of the having a problem that you can't solve, and not being able to figure it out, and it being like that is piling on top of itself, as people don't understand that it is even a problem. And at the same time feeling lost inside your own brain, trying to find ways to find solutions, but not finding ways to even think clearly enough to approach them. Even simple solutions would be out of reach, because of all-consuming need of finding-self. Yet the finding-self doesn't seem doable without solving the problem.

I don't know how to make people understand the confusion and wanting to understand, and wanting to find solutions, and instead just being lost inside. And feeling like it is expected that there is nothing at all.

If I can't explain it now, how could I explain it then, when I can't find myself? How can I explain that I'm trying to find solutions, but am just being asked over and over why can't I just take their solution. Questions I can't reply to.

Is it surprising that I reply to things I don't expect? Is it surprising I don't process repeated questions, or take time to reply? Maybe people can't understand. Maybe they still need to figure it out. But how can I help them figure it out when they already know of my diagnosis, I'm open, and there's only so much I can do when it is happening. People need to pay attention to learn, and I can't make them do that. I can only try to help them if they are willing.

Listen

When someone speaks, or types, or flaps their hands, listen. When someone tells you what they need to get through the day, or when someone tells you that they can't handle what is happening, then listen. When someone tells you that they don't mind who they are, that they actually are rather happy, then listen. When someone asks for acceptance, please, listen.

How many times do these things need to be said? Shouldn't it be straightforward for someone to say "Hey, I rather like who I am" and to have people take this seriously. Or to have someone say "maybe it'd be easier for both of us if you just play the music quieter", and for people to do this.

Wouldn't it make sense for people to be able to have thoughts about themselves? And wouldn't it make sense to pay attention to all the communication, whether or not it is spoken?

I don't know, it seems straightforward to me. But, it seems that people don't know how to listen.

It seems that they don't know what is around to hear and what is around not to. That there is communication outside speech seems to be a challenge to understand, and learning how to read it takes time; yet at the same time there is an expectation of normal social cues. That there are voices speaking out saying "please, listen to me, I want to speak about my own disorder", is lost, and they don't find them or hear them; and when the few get through, its drowned out in their expectations of what they already understand to be their truth.

So maybe, its a process, and maybe its the first step. Learning to listen.
So, that's what I ask. Can you try to do that? Learn how to listen.
And then, listen to people who are autistic.
What do they say?
It won't all be agreement.
It won't all be the same.
But there will be people talking out about themselves, what they like, what they don't like, what they want, and how they feel. And they should be listened to.

Myself?
I want to be able to be me without feeling like I'm fighting people every day by existing.
I want people to notice when I need help, and offer it.
I want to be respected, rather than spoken over because of who I am.
I want to thrive.
And I want to find my way in the world.

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?

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.

Layers of thoughts to words.

I've complained before about people talking about how I'm articulate. I didn't get into many of the details of what actually goes on in my head though.

Lately I've been wanting to write things. I've had a variety of topics I've wanted to describe so that others could understand better. However, having topics I want to discuss doesn't mean that I'm able to actually get through the process of even mentally getting it ready for writing.

I want to write about empathy, but I can't even have words hit paper, or computer screen about this. I know that there are ideas like how we are called not empathetic, yet others don't even bother to try to understand us; so their empathy doesn't actually extend to us, whether it is intuitive or solved through a logic puzzle. But, anything more than that is stuck, ideas not coming out. Ideas not getting to words. Ideas never getting to the point where they might even thought of being written, because I'm still attempting to figure out which of the thoughts are ideas which matter.

The thoughts don't actually have words down at that level. They don't have pictures either. They're just thoughts of thoughtiness. And in order to use them I need to identify which are relevant of all the things I know, and all the things I'm currently thinking. I get them out, convert them to words, and then have the words appear on my screen as I type.

But, the first level, of getting the thoughts to the point where I can even convert them to words; that level isn't one which allows all thoughts to pass through in general, and doesn't allow all thoughts to pass through at any given time. Even when I'm at my most communicative, I still have a majority of the things I'm thinking never actually getting through.

Then words form. Here I might have word finding difficulties, or I may not. I've found most of my word finding difficulties end up rather entertaining with what comes out when it occurs. This can take an actually meaningful amount of time. Words do not come immediately, its an actual translation process.

Sometimes, though, when words are struggling to form, I end up with things where I can get some of the words, and mostly its stuck in the idea, that has gotten to that level. That never actually is able to fully form into a coherent thought in words, because even though I know the words, the thought and words don't want to combine into one. I get a word or two. I end up, noting them down, that there is something meaningful about those words going on in my head. Or I just skip over them.

Because, if it doesn't get through the words forming step, then outside of me, you won't know its there. You might realize when I'm trying hard to come up with how to say something, but only sometimes, because much of this is just what is always going on. If it is before that step, if its something that the words didn't come together for, or if its something that didn't get through that initial phase, you won't have any clue those thoughts exist.

So, for me, I'll know about them. And I'll know how much I've left out, because they didn't get through the layers before it got to actually communicating it to someone else. But you, you won't have any clue if its there or not.

And that's why, you might not realize what is missing while I'll know how much is.

Large topics never get discussed because I can't figure out how, yet people never realize they even exist. Something as simple as asking for food might never happen because I don't know how. Answering questions, simple, complex, all over the place, people think they know so much more than they do, simply because the ideas have not left my head and yet people assume they know what is going on.

Because, what has left is easily understood, yet, what hasn't, they've not heard and they're private to me, and those who've learned them via behaviors rather than listening to only words.

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.

Handflapping

I don't remember flapping as a child.

Of course. I also remember it being easier to communicate, and all signs point to me being one of those unusual people who as they go through adolescence and early adulthood, get more stereotypical autistic.

Either way, I don't remember flapping as a child. I might have handflapped some, but I don't remember doing so. I know that in high school and since then I've had stims, and I'd assume I did before then, but what they were wasn't necessarily hand flapping.

I hand flap now. Mostly when alone, but not only. It varies entirely on what's going on.

But, the more I read about what people have gone through, the more I read, about Quiet Hands, the more I read about people having stims taken away and them ending up self harming, the more I end up hand flapping.

The first time I remember handflapping was after spending time with someone who flapped - it was like I picked it up from her. I started using the stim that she was using. From that, it started generalizing. I started having multiple different types of flaps. I now have an excited one, a hurrying one, a wanting a communicate one, a "this person gets it" one, a "I'm proud to be autistic" one (which comes out after reading well written things by autistic self advocates).

And while I don't remember flapping as a child, its a stim that feels like I can communicate through. Of all my stims, its the best to communicate through.

It makes so much sense that people hand flap.

I'm doing it more and more. And I'm not ashamed.

Because, really. Communication is communication. Curling up in a ball because you can't speak, is communication. Typing, and making your phone speak is communication. Hand flapping excitedly is communication.

Whoever says it all has to be speech is just wrong.

I can flap and people can learn what I'm thinking from that.

Quiet Hands might mean to many that they need to stop.

But to me, it means if they got hurt, then really, there's even more no reason to not be open about who I am as this becomes more and more natural. It makes me want to hand flap. It makes me want to not only show who I am, but use my hands to do so.

Flap away.

Noise

Reading, wanting to communicate, struggling to get ideas out. Okay, I'll sit down and write. I can do this now. It's a way to get ideas out. I can explain how I feel and how I live.

Right, I have stuff to do on this topic. That's a specific thing to do. Explaining about how life is harsh, and you can't just always focus on how you cope, because if you do that then you deny what people deal with.

Writing. Starting to get in the right mode. I can do this. It's starting to work. I've been stuck not managing to do this for months, but its starting to work now.

Type type. type type. type type.

People coming up and trying get me to do other stuff, interrupting all my thoughts. Losing it. Losing it all again. Don't want to lose it.

Please, let me keep the right mindset. Please. Wrapping up. Curling up. Smaller, smaller. Pulling in.

Walking away, realizing they were interrupting me, maybe kept it, back to trying. Writing quick ideas down to remember thoughts.

RING RING

Stupid phone.

SQUAWK

Too much noise.

Talking. So much talking. Squawking. Squawk squawk. Thoughts are running away. They're leaving.

Getting harder to string ideas together. Can communicate well enough to make people think I'm functioning, but mentally I'm lost. Anything I want to do is gone.

All the noises. Too many noises.

Clenching up. Don't want to hear it all.

Feel like I'm going to burst.

Want to just manage to do something effective. Why can't I be effective?

Bark bark bark bark

Even more. Why more?

Holding head. Typing. More headache.

Questions? I'm supposed to answer questions? Right, yes I can do that.

I'm going to just hide now. Maybe the noise will stop eventually.

Rock rock. rock rock

Autistics Speaking Day (one month late)

One month ago was Autistics Speaking Day.

One month ago I thought of starting up this blog, because it was something I was meaning to do.

One month ago I sat down at the computer and was unable to write.

One month ago was one of the few days since I started participating in the autistic community that I did not make a forum post.

Three and a half weeks ago I wrote my first post on here

Yesterday I found this autistic speaking day post.

Today all I can say is that even though she clearly is more severely affected than I am, that's the absolute best Autistics Speaking Day post I have seen.

And today I say thank you for letting me have an easier time than others with this. Thank you for this not being something I've needed to say because while those days are rarer for me, I've not been pushed on one of those days.

(And on the note of that blog, this post of hers is the best written thing I've seen about the use of the word autistic instead of the "person-first language")

Lojban for communication about emotions

A few days ago jonored and I ended up in a discussion on IRC about what languages are good for discussing what languages are good for discussing various topics. Most people who were active in channel agreed that English is bad for discussing anything (other than it being the language we all knew), something like lojban is preferable for technical topics, and something like French is preferable for emotional topics. Their reasoning was that for topics that had anything to do with emotion you want a language that is more poetic than structured, so something like French is better than something like Lojban.

Of course I had to be the unusual one and I commented that I'd prefer something more structured in order to discuss emotions. I ended up discussing this more with jonored over lunch, and it came down to unstructured language is good for art-based communication (which is both a very powerful and useful mode of commutation, but not the default state for at least what seems to be most people). Simple discussion on the other hand, seems to me like highly structured, precise language would just be preferable.

Personally, I struggle a lot with any discussions about emotions. When I found the description of alexithymia on wikipedia earlier this year, it was the first time that I'd seen a description of anyone else having similar struggles with identifying and discussing emotions. It also was the first time that I'd heard that other traits of mine, such as the scarcity of fantasies, might be also associated with the same basic trait of mine. I do struggle with all three of identifying my emotions, translating my emotions into any spoken language rather than the generic concepts that I think in, and communication of emotions with other people.

In particular, the challenge I have with the communicating emotions once I can identify them in myself aspect comes from multiple aspects; two primary aspects beyond the simple translating thoughts to spoken (or typed) language are a need for what I say to be sufficiently precise and emotions just being a sufficiently complex problem in which applying logic does not allow for me to just go through the analysis and return an answer within even a semi-reasonable amount of time. (Not having responded to 'what do you think about foo?' within an hour is not reasonable when it comes to real-time communication.)

The discussion on IRC lead jonored to wonder, would it be easier for me to discuss emotions if I was using the system for emotions in Lojban rather than attempting to communicate via English and the non-verbal methods which ASDs are associated with weaknesses in. Rather than so many different words and the idea that one word 'should' in some situations suffice if you choose the correct one (no matter how crazy of an idea that is), this would allow people like me to construct the best description from a short enough list of ideas that it can far more reasonably be applied analytically.

The relevant part of Lojban is the attitudinal system. There are written words for 39 different concepts and their negations that tend to be communicated through non-verbal communication. These words, some intensities, some domains, and various other associated ideas are combined into a concept that is the emotional state being discussed. As there are only 39 of these which are explicitly combined, this is a short enough list that running through the list pulling out all identifiable aspects is a seemingly feasible idea.

So, jonored had me read through that chapter while he wrote up a reference sheet for me, and has been trying to help me get used to it by asking questions for me to reply to using that in particular. Unfortunately this is requiring quite a bit of care because if he asks a question that is too hard for me for some reason or another, I still won't respond for over an hour (and then not respond in a useful manner, more start stressing out about the fact I've not responded and this is wrong of me). The basic question is whether this would end up helping me be able to translate identified emotions into language and communicate them without being overwhelmed. There's not been nearly enough time to see how much it'll really help, but it seems a promising idea. At the very least the way its formatted allows for a list of words to be run through analytically without the problem that every other one of those that I've seen has of implying very strongly that only one word applies in any situation, or that there's a word that matters "most" somehow that is the one that "should" be given. I'm going to try to actually look into this rather than just face extreme perfectionism every time it comes up, and hopefully it helps some.

Whether or not it helps me it seems like it could help some people with alexithymia.