Stim suppression

Why is this done?
Do you ask?
Do you know?

Do you assume
Or even not care.

Does it matter to you why someone is humming
Why someone is spinning
Why someone is flopping to the ground, and lying there

Does it matter to you,
If these are helping
If they have reasons
Does it matter if they are ways you can learn

Do you care if someone can speak more complex thoughts, if they make a few noises before?
Or if you can notice that noises are too much, when their humming begins?

Do you care if the can manage many times as long, if they flap and hum and think
Holding out the bad sensations
Pulling in the good

Do you care about the many ways of communication of hands, of rocking, of noises that aren't words
Or do you not want to bother to learn this style, while forcing us to learn yours

Do you care about the ways that people help themselves
That people manage
That people succeed
And most of all do you care about the pain that occurs when you take all this away?

Or is the only thing you care about "it looks weird?"

"Different not disabled"

One of the first phrases I heard when I was researching Asperger's (because I wasn't aware of using the word autism then), was "different not disabled". It was saying, you aren't disabled, you are only a different sort of human. It was also saying you aren't really impaired.

In many ways, what different not disabled was saying was "you're actually the same as the rest of them". In saying "you aren't really impaired", it was denying differences, suggesting if I struggle, it is only because others do too. It was saying, my struggles are all things others deal with, if they weren't, I would be disabled.

I didn't recognize my impairments then. I didn't recognize any autistic traits. I was happily claiming neurodiversity, but had no clue any way that I was neurodiverse, and didn't realize that I didn't know.

I was 13 and was thinking that everyone else had the same interests I did, even when I was being told these words associated with the autism spectrum. The reason that they grouped together in cliques, listened to the same music, went to the mall, was that they all pretended to have these other interests to fit in with each other. In truth, they all had my interests. The difference was that I didn't care about fitting in, and preferred being myself.

I was different, but at the same time we were all the same.

Every time I saw what was said around "different not disabled", it was "we're just a different sort, just like if you're gay". It was repeating to me there's no difference that should be talked about ever, and yet talking about it proclaiming neurodiversity. It was saying we didn't need any sorts of help ever, we just needed people to respect us.

My understanding of myself was held back so far hearing these words. I didn't recognize who I was. I kept being told "you're just like them", even when I wasn't. I kept being told I didn't need help, when I did. I was told I wasn't disabled, and I am.

I was told if you needed help, you couldn't have strengths, that if you had strengths, you couldn't need help. I was told that disability is to be ashamed of, and that someone who is neurodiverse is innately different than someone who might ever use an app to help them speak. I was told many things that aren't true and held me back.

This isn't just me. I've heard others say the same. That entering into the online autism world and finding those speaking about how we aren't disabled, had hurt their ability to understand themselves and the world.

Disability might be caused partially because of the society we live in, but that doesn't mean that people don't need help. It doesn't mean that people should deny the differences they do have, and try to push through trying to do everything on their own, never trying to even adapt. Disability isn't a word saying a person is lesser, that a person doesn't deserve life, doesn't deserve happiness. It's just our sort of difference - our one which does have dramatic downsides, a community, and people treating us poorly for being how we are whether or not we recognize who we are, and whether or not we are open.

Taking away the disability label only takes away self-awareness, possibility for adaptations, resources for growth, and community. It doesn't protect me, it only protects others who don't want to let me be disabled.

A migraine

My vision blurs and my head spins
every step becomes a mountain
every minute, who knows?

The noises blur,
louder and louder
coming at me from every which way
indistinguishable,
just a cacophony of pain

My tunnel shrinks
False lights blinking and flying
Blurring, shrinking, growing, moving
all of the information, lost in the shuffle

The ground begins to move
and I flip - upside down
So many lies about how I am moving

Walking? Shuffling? How do I balance?
I don't even know where I am.
My arms, my legs,
what are these things?

You've helped, and I've found them.
I can once more move; am no longer trapped
with the fear,
knowing I'm unable to move.

But still, they won't listen.
My fingers won't hold things
the doors, won't open when I push.
The movements hold me in their own new way.

Spinning, blurring, unable to speak
Unable to remember words
Unable to hold onto ideas
Unable to speak those few things I can find

Lost, confused, and trying to find a way
through the maze that keeps building itself.

Every task having more and more steps added,
and the steps in the middle stolen.
Every path having more and more obstacles being put in my way

As the pain, increases.
And the rest does as well.

Until eventually I find that way through, in its own weird way.
Or I don't.

Because what I do
or don't do
is dependent on how my brain works today

Not on your expectations.

Crusade against hate

On the bus I am screamed at for trying to cope. For doing the things that I need to do. People, all around me, grouping together, in a mob against me, for being different.

This is the autism awareness we have.

I am told, time after time "you are not autistic", because I don't match there stereotypes. Because I can speak, or type (because it might be online). Because my communication is clear, or because they can relate to things which I say. I cannot be the kid rocking in a corner, hands on their ears, humming, to keep out the horrors of the surroundings, no matter if that is something I will do.

This is the autism awareness we have.

"Autistic adults don't matter" I hear, in those words. I am told my words don't matter, that people like me do not deserve help. I am told it only matters if we do things for the children, and those who are over 18 can be on their own. We are not part of the picture.

This is the autism awareness we have

This is the reality of our lives as it is. The hatred thrown at us. The denials of our lives. This is the reality of the fighting for acceptance - that every day, its meeting more people who've been misinformed and cannot believe that our words about ourselves are the truth.

Asking for help, is a quest to find acceptance. Traveling in public, a question of whether or not challenges will come up. Our words are not valued, our stories not told. We share, but we are overwhelmed, denied, and pushed out, by those who want autism to mean other things.

And still, we go out there, we face the world. Still we tell our stories. Still we go and do what we need to do, to make things better for ourselves. Still, we work to make things better for those who are like us. Because that's what needs to be done.

Even when it makes it harder right now, we work for understanding. Even when it is painful, we work for acceptance. Even when it is a struggle, we work against the hatred that right now, is the primary message available about autism.

Choosing pain

Have people ever felt pain? Have they ever felt limited? Have people ever felt a struggle, like they want to do something, and they can't manage to, no matter how hard they try?

I can't understand. Everything I know suggests that everyone feels pain, that everyone struggles.

So why would I be told "You're only disabled because you want to be"?

Why would I be told, that I choose to have migraines? Because I have been told that. I've been told that if I just wanted to not have migraines, then I wouldn't, and that the only reason I have them is that I want to be disabled.

Why would the implications be "you want to have migraines"? As if the "services" for those of us who are disabled are worth spending so much of my time in pain. Spending nights unable to sleep with my head being split open, and my brain being compressed by a skull crushing in on itself. Spending days with my head spinning, unable to identify where I am, where my limbs are, how to move them enough to do tasks like pick up things, or open doors. Spending days unable to speak, my vision blurring, sound coming from all directions...

Why would someone suggest that it'd be my choice, to struggle to find ways to do what I can, because I can't find a place that I can be without my brain saying my body won't work. That my senses lie even more than they normally do, that my body won't listen, that everything, and nothing is too much, and that the confusion of existence is beyond my comprehension.

Have they had pain? Would they choose it? Would they choose a struggle? Would they choose to fight against feeling like they can't do anything?

Because that's what I do. And it's not because I choose to have migraines. It's because I choose to limit how much they limit me. I choose to say, I know I'm disabled, and I'm going to go out there, and do everything I can, even when that's fighting against my body. Even when that's struggling to find ways to exist.

Every day I go in public, I do it knowing I'm probably going to get a migraine. And yet, I can't stay hidden in my room. (and truthfully, even here hidden in my room there's a high chance of migraining too).

I build up skills, tools, adaptations. I take meds, carry more. I carry too many tools, and train my brain. But I choose what is right for me.

AND IT IS NOT CHOOSING TO BE DISABLED

It's me choosing, that sometimes, its worth going through everything that a migraine entails, to go and spend time with friends. Sometimes, its worth the pain and suffering, the confusion, and all the aura entails, in order to have a chance to make a difference to others. Sometimes, its worth the migraine, to get out of a single small room, and face the world, getting to choose what I'm doing, how I'm doing it, until the fog rolls in, and my neurology overtakes my ability to choose what I want to do for something other than keeping myself out of situation of everything being too much.

Would they choose pain?

Because I'm the one who has that choice. And its not nearly what they think it is.

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.

Person-first vs Identity-first language

I'm told I'm rude, as I request my own language. "Don't be rude to me", as if not allowing someone call me whatever they want, not listening to my preferences, is rude. As if they are not the one being rude, overriding me; coming into my space to tell me I'm wrong; speaking out over and over about how it doesn't matter what an autistic person says, you aren't allowed to say Autistic, it is such a bad word.

Don't be rude. Because it is rude for me to request you not to tell me to call myself a person with autism, but it is not rude for you to tell me I must do so. Because it is rude for me to request for you to call me autistic, but not for you to tell me how to speak about myself.

It is my say how I speak about myself. It is also my say how I wish to be spoken about. If I ask you to call me autistic, and you refuse, then that is rejecting my requests for my own identity. If the community asks you to call us autistic, and you reject it, then that is rejecting ours.

It is not the decision of the parent, therapist, teacher, or general neurotypical community, how I should view myself. It is my decision about if I see myself as autistic, a person with autism. I say I'm autistic. You should listen to that.

In particular, I extend that even. I view it as, if you make a request like "not autistic, person with autism" or call me a "person with autism" when you know I prefer autistic, I find it insulting. I find it not "person first", but demeaning. For, we don't speak about a person with baldness - we speak about bald people. We speak about Americans, females, tall people. The only times we bring out the "with Foo" are when we want to separate it from the person because we view it as negative.

I'm autistic. I've been autistic my entire life. No matter what I do, I am still autistic. It is an intrinsic part of me; a part with impairments, a part that is disabling, but a part of me that cannot be removed. And when you are changing the language from how you usually speak, when you are invoking the "with Foo", that is against the normal usage, and is only invoked when something is so negative we need to change how we speak, you're doing that with something that is part of me. You're saying it is bad.

And by doing so you are saying part of me is bad.

I'm impaired, but I'm not lesser. I'm not wrong. I'm not bad because I'm autistic.

And when you override my language preferences, you are saying, even more, I'm not a person first. Because I'm not a person who gets the ability to choose the ability how to speak about themselves; I'm someone who doesn't have that ability, only those who are "normal" get to do that.

I am proud

I am proud. Not because of thinking I'm better than you, but because I've seen what some of us have gone through.

I've seen the struggles of autistic people because of being autistic, fighting not themselves, not their bodies, but the world, and society, and winning. Making progress, making it better and doing it despite the fact that society is telling them they can't.

So I have to be proud for them. They're doing drastic things, hard things.

I only really became part of the community four years ago, and in these four years, I've seen changes happening. I've seen progress being made, things getting better. And it's not getting better because of time; it's getting better because of lots of hard work by autistic people fighting in many cases even when their disability would "get in the way". It's people going out in situations where they are facing sensory overload in order to talk to people about changing laws. It's people finding ways to be listened to when their voices are being denied because they're computerized voices. It's people doing thing, even when it's hard. And it's progress happening.

We need to be proud of how much has happened. And of what people have done.

And yet, we need to think of those who are being denied these chances. We need to think of those who are hiding who they are, being told they're someone else. We need to help them.

We need to be able to be proud of who we are just for who we are. We need to say "I can be me, I am me". Because not everyone can say that yet.

We need to show them we can and see what we can do to make their lives easier. Whether that just means living openly, speaking out, or seeing what we can do in our own small fields, we need to help make it better for everyone else.

I need to look at the children being told in schools they can't stim. The children having their hands held down. The children being told they need to look people in the eyes and that eye contact is more important than learning academic material.

I need to speak up for them; work on changing academic environments, and do what I can to work with them, stimming, and just speaking to individuals, showing, that I'm an effective adult who's gone to college, and yet, is visibly autistic while I'm working with them. That hiding my symptoms isn't what makes me "functional"; that being able to teach children is far more "functional" than "I can look you in the eyes".

I need to show the children that it's okay to be me, so that they can be less afraid growing up of being who they are. If just speaking out to them about who I am, changes the lives of those near me. I need to do it, loudly, proudly, because they aren't ready yet to be like I am.

I need to work on changing the world in my own way. So that we don't need to say "I am proud" just for being who I am.

But we're not there yet. So, right now. Yes, I am proud to be autistic.

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.