The point was always control

CN: abuse of children in schools, ableism, restraint, seclusion, BCBAs

When BCBAs are concerned meltdowns are "behaviors" to be "handled", and how much distress a child is in doesn't matter, but there are still rules in place. Rules they set up for themselves, but rules. Rules like whoever's the first adult in place for "managing a behavior" is in control of whatever is to be done for that "behavior". They control when restraints happen, and who restrains, and how transporting the child to the tiny room that the child gets put in to finish the meltdown in (because of course that'll help a meltdown). They control the decisions. They're allowed to explicitly hand it off to someone else, with consent of both parties, but otherwise, they have control.

This is a rule, an explicit rule, a rule that everyone is told, and everyone has to agree with, and everyone has to know that this is how it works, because this is apparently the safest thing to do. This means that everyone knows who to turn to, and people don't try to go in opposite directions in how they're managing a situation. There's someone in charge and everyone knows who it is and nobody has to make a decision of who it is ever when a "behavior" is going on, because they're more worried about the "behavior" (I mean not the kid of course).

But I mean, what happens if an autistic person is the first on the scene. What happens when a kid starts melting down, because of an entirely predictable reason to be melting down, because adults have pushed them into a position that is completely unreasonable for a child to be in and they cannot cope, and they're trying and trying and trying to cope, and they can't. What happens then? What happens when they're doing the best they can, and an autistic adult is helping them, because the autistic adult knows them, and is seeing their responses, and is seeing that they're calming down, and making it through, and it's working, and life is getting easier and more organized, because someone is there and helping them in ways that they need right now?

No, despite all these rules, these whoever's on the "scene" of a "behavior" first, if it's an autistic person, that's not allowed. An autistic person isn't allowed to be treated equally. The child isn't allowed to be respected that much. Nobody is allowed to have that much respect, because the BCBA needs the control of choosing who takes care of "behaviors" and how. Respect isn't allowed. You need the ABA, you need the restraints, you need the control, you need the abuse. You need to control the autistic people this way. You need to hurt both of them this way.

So instead, they take this autistic child, who's working through a meltdown, and grab, and restrain, and pull them across a room, and throw them into a tiny little space, for a meltdown that never even met the rules that they had claimed met the requirements of restraint was allowed for. Because control is necessary. Because helping children isn't the point. Because helping children was never the point. Because when children were actually getting helped, that wasn't allowed, that was giving too much power to people they didn't want to have any power.

Restraint, Seclusion, ABA, Abuse, children going through trauma, and living with this for the rest of their lives.

The point was always control.

"too emotional"

CN: suicide, ableism, ABA

I should not live in a world where I have to worry that my students won't be alive every time I go to school, because of how they're treated by their teachers. This world should not exist. This world should not be our world. I should not have to worry that my students that I care about, who play with me, who go out of their way to do things with me and include me, and who make sure that I'm someone who knows that they care about me, won't be there when I wake up, because every other adult in a school, instead of caring about them, only cares about behaviors, and eliminating them, and behavior plans, and doesn't even care how many times they even break their behavior plan because who cares if they hurt the children they have power and they'll show the children they have power. I shouldn't need to be there, listening to the children about their suicide attempts, not knowing how many more exist beyond the ones I know about, but knowing that they exist.

I shouldn't live in a world, where because I've not been at that school for a year and a half now, I don't know whether everyone is still alive. I know nobody will tell me. The students would, but they don't have a way to contact me. Some of them tried to friend me on steam, but somehow that fell through. None of the adults would. The adults didn't tell me whether or not I had a job anymore. They just stopped talking to me. Why would they tell me about students I care about living or dying. They don't care about me. They never hid they didn't care about me. They claim to care about the kids, but they abuse them. It's a common pattern.

I shouldn't have to be reminded and wonder whether people I care about are alive or dead knowing if they're dead it's probably suicide. I shouldn't have to think about teenagers and how many suicide attempts they've made. I shouldn't have to know what they've gone through because of how much people have taught them that they can't be autistic, autistic is wrong, they're wrong, among the piles of lessons taught by people taking over their minds and bodies through ABA. I shouldn't have to know these things.

And if I didn't know them, I couldn't have been there, and I couldn't have helped them through the years I was there. I couldn't have introduced them to neurodiversity and autistic community being a thing. I couldn't have been someone who they learned to trust. I couldn't have made the difference I know I made. And I would still know that this is happening to children. The children just wouldn't have names and faces.

I'm told by people I'm too emotional when saying that what people call therapy is actually abuse. I'm told that being angry will mean people won't listen to me.

I just don't want anyone I care about dying. I just don't want anyone else abused. I just want this to stop now.

How can they not be emotional about this?

Acknowledging Me

How my body moves determines how much I know.

I mean, I know this to be the case, because of how I interact with you. The same person, the same people, but completely different interactions. How my body moves determines if my words are worth hearing, or if they're only to be discarded, into the abyss of "we're trying to fix the autism".

If I rock, or sway, or so much as tap my fingers, then how can I make decisions? I don't know that much. How could I? You decide so. You know this about me. You know that people who move like me do not know how to do such difficult tasks.

Yet if I'm still, I can lead. I can provide new information that none of you have seen before. I can teach, and share, and you listen to me!

You. The same people. Depending on my movement that day.

Because how my body moves must determine how much I know. Not the words I speak, not the thoughts I think.

It must be how autistic I look.

Ironic, it is, that these movements regulate me. These movements organize me. These movements help my thoughts fit their pieces together into these words that you hear.

Ironic, that while they don't determine how much I know, they determine how well I can use what I know. And yet, if I am in a state where I am using this self-regulation, then I am deemed not capable of knowing this information. Not capable of knowing about autism.

Ironic, that making it easier to think, easier to share, easier to know what I'm saying, what I'm doing, how to exist in a world not meant for people like me, makes me know so much less in your eyes, that I should not be listened to, even about people such as myself.

But, how my body moves, doesn't actually determine how much I know, and you can't see that. You only see the stigma of a diagnosis, not the person in front of you. You don't see the same me every day, only that who you want to see.

I'm autistic every one of these days, moving or not moving. I'm the same person, with the same strengths and same impairments; same job and same college community; same interests and same need to teach and share and improve myself and what is around me.

I'm always Tuttle.
The same Tuttle.

I'm just actually autistic, and it's sometimes harder for you to pretend that I'm not.

Getting used to it

"They have to get used to it"

Whether it is the touch, or being "okay" with someone doing something they don't want sometimes is hard to tell. These words are repeated; it doesn't matter how many times, or ways, a child says no, you still should put your hands on them.

"It doesn't really hurt anyone"

It doesn't matter as you grow older, you are still told, "you can't really say no", and even "your experiences are wrong. You are wrong. You don't really have a reason for thinking that, for saying that."

Both of these things are things I've been told recently. I've been told touch doesn't hurt. I've been told that people just need to get used to touch. I've been told that it doesn't matter if people say no, you should still put a hand on their arm. I've been told it doesn't matter if I say no, stop touching me.

I wonder if people are even thinking about what they're saying; if they're even aware of the implications of their words and actions, or if they are just blissfully ignorant. They must be ignorant it seems, people wouldn't take away that much autonomy, would they? Would people knowingly say "you aren't allowed to say no" or "someone touching you in case you are touched later is more important than your ability to choose what is done to your own body"?

How do people have these thoughts- where the ability to say no, the ability to choose what is happening to yourself, the ability to decide whether or not someone else is in your body's space - is less important than something someone else chooses - someone who's body it is not.

How are these things justified? "They have to get used to it"? As if someone is not capable of saying to keep hands away from their body as they get older. "It doesn't really hurt"? As if someone who is disabled is incapable of identifying their body's own sensations.

Getting used to it.

Getting used to doing what others tell us to do. Getting used to hearing "no, your experiences are a lie". Getting used to being told what to do by others, because they have power over us. Getting used to our senses not being paid attention to, even when it involves getting physically into our space, touching us, pushing us around.

Getting used to it.

Being afraid to speak up. Being afraid to say when there's a problem, because you've always been told that you're wrong, that your feelings are wrong, that your body is wrong. Getting used to it. Not knowing how to say something, or when to say something. It's always wrong you know. You're always wrong.

Getting used to it. Because it's never your choice. It's only the choice of the others.

Everyone is capable of learning

Everyone is capable of learning.

This doesn't feel like a radical statement. It doesn't feel like one that needs to be made, or one that should need to be made. It also feels like one that needs to be repeated over and over again.

Everyone is capable of learning.

This means that people need to be given that chance. They need to be given the chance to challenge themselves. They need to be given the chance to make mistakes, and the chance to recognize that the mistakes were mistakes. They need to be given new information and the chance to get an education.

If we don't give people these, we are saying is that they cannot learn. We are saying that they are not capable of doing something as basic as increase what they know and improve. We are saying, not only that they do not know something now - which is okay, nobody knows everything - but that they cannot gain knowledge and skills; cannot find ways to adapt, cannot do things different than they do things now.

People change. People grow. If we do not give people the ability to grow, if we take that away, then what are we saying about them? How many ways are we saying they are wrong, lesser, incapable?

If someone is nonspeaking, they can still learn. If someone needs a 24 hour support staff, they do still learn. If someone looks different, it doesn't take away this capability.

What takes it away, isn't themselves, it is others. It is others saying "you are not capable". It is others not teaching. It is others preventing people from ever making a mistake. It is others preventing people from recognizing when a mistake is made, not allowing them to recognize, learn, and grow.

We need to presume competence, and this isn't only when it is convenient. It isn't only when it is presuming that people can communicate. It isn't only presuming things that are easy for us. We also need to presume that people can make choices, that people can make mistakes, that people can learn from these mistakes, and people can learn in general. If we take that away, we take away far, far too much.

Everyone is capable of learning. Do not take that away.

Accessible doesn't include me

I don't have a choice of always watching, always being on alert. I don't have the choice of always making myself aware of everything going on around me, no matter how many spoons it is costing.

I don't have a choice, except to be on high alert, or to find one of few close people who will watch out for me, warn me, and take on the burden, exhausting themselves in order to make an experience easier for me. Only in those situations, can I let my guard down, letting myself down to low alert, and even then, I must pay attention always.

I don't have a choice, for things happen fast, and I need to react. If I don't, I am the one paying for what others are doing. I am the one spending days in pain, losing the ability to do things as simple as eat or sleep, see or balance enough to take a step forward. I am the one thrown into pain as my brain breaks into migraine day after day, because of what happens around me. I am the one who has to try to keep myself safe, because I cannot trust that I will be safe in the migraine, cannot trust others will help, and cannot trust that others will do a thing to prevent the migraine from setting in.

It doesn't matter how accessible a place is. Accessibility doesn't mean me. It doesn't mean someone for whom the smell of perfume will near instantly change whether or not they can be in a space. It doesn't mean someone for whom someone sitting next to them after smoking, is a way to question chance only about how bad the migraine gets based on how fast they escape, not even a question of whether it occurs.

It doesn't mean someone for whom the lighting, the sounds, every one of those things, are more ways to chance what is going to happen. More ways that already affect what is going on, how well they can speak, or recognize faces, or navigate space.

Accessibility doesn't mean including someone for whom you need to control the environment. We have to take care of ourselves. We have to watch out and protect ourselves.

I'm lucky this isn't life or death for me. Other people are not, and can literally die because of the accessibility challenges that I see every time I go anywhere. (I'm so glad I don't have seizures.) In either case, accessibility should not be limited to ramps and CART. Accessibility should include me even though it isn't life or death. It should include people for whom it IS life or death for. But in both cases, if the environment matters, it doesn't.

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?"

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.

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.

Accommodations

"We can't do anything for you" means "We don't care"
Or "you look normal"
Or "Any effort at all we will say is too much"

How many times have I heard this?
Refusal to help
Ignoring what I need

Invisible.
But that doesn't mean that I don't need my accommodations
It just means they get away with it easier

As once again my path in life changes because of the same refusal
To let someone possibly be capable of doing what they are capable of
I wonder if it is worth asking
Because every time I'm told the same things

"We can't do anything for you"
Whether it is sitting me in a room by myself
Or putting up signs saying not to spray perfumes

Actually doing your jobs is too hard
So instead you make my life harder
Push me away
And make it so that even when I'd help you, I can't

It's not even better for you this way
It's just so much harder for me.

"I am hated"

Do the teachers really think that saying "no, people don't hate autism" will make it that way when a child is aware enough of the world to make such a statement? Or is it that they simply have the ability to deny the fear and hatred pointed towards us -the people they choose to work with.

Do they think that sheltering people from the horrors of reality is more important than letting people learn how to face what will inevitably haunt them? Or do they pretend those horrors aren't there, refusing to learn the experiences of those they teach?

Where can hatred be hidden, such that even those who spend a large portion of their lives with us, cannot see it? How can it be that people are unable to see, refusal of who we are, telling us how hurtful we are, telling us how we are not worth anything?

And yet they do it. Those who want to help, don't see us either, they don't see our pain, deny our experiences, and apply therapies without thinking of whether or not they will hurt more than they help.

Are they aware of what happens to us? They have to not be, but how can they not? Where are our voices, being drowned out in the crowds? And why does it take our voices screaming out for someone to stop and listen?

If a child says "people like me are hated" I would think you would listen, but we're downgraded, not taken as authorities on ourselves. And sometimes it feels like being a professional is what makes me listened to, not being an autistic adult.

Still, I'll take it if its what I get. And I'll explain, no, there is hatred. And explain that it is because of false assumptions, misinformation, and lack of knowledge. If people stop and hear my words? Then their hatred reduces, their fear reduces.

So, do not deny my reality, or his reality. Do not teach that the world is a safe place when it is not. And at the same time know, that people will learn, they just need to be taught, because what is out there about us now is toxic.

Internalized Ableism

"I'm not disabled" a student of mine says, complaining to a teacher about how her peers were saying she was. "I know" is the basic reply of the teacher, telling her about what she can do, yet ignoring the fact that yes, she is disabled. That most of the people I work with are. That me, the person who is most praised in the school for my math ability, is disabled.

She calms down, but the way it is done, is by removing this, and later on, with others, she talks about when she goes to college, she will refuse to show them her IEP, refuse to ask for or accept any accommodations. She only wants to be normal. She doesn't want to be seen as different, doesn't want to see herself as different. She repeats, again and again how she isn't different at all, is normal. She's normal. She insists.

She must have forgotten that the person she was speaking to was disabled. I am open about my disability. The students talk to me about my autism and my migraines. I tell the other adults things about myself to advocate for the students, because sometimes its the best way I have. But now, there was a student telling me, how that wasn't her. Telling someone who accepts this part of herself how it is being rejected.

Everyone else was helping her reject it. The kids were teasing her for being disabled. The adults, reassuring her how normal she was, and saying how she wasn't disabled. Both weren't letting her have it be part of her, and weren't letting her have what she needed.

So instead, I ended up sitting down with her, explaining why she should get accommodations. I explained how they wouldn't make her a bad person. I explained why they wouldn't be her taking advantage of the school. I explained how what they were was instead helping match her education to her. And to help her, I truthfully said that I think everyone should have individualized education, not only disabled people.

We started going through what some accommodations would be that would help her in higher education, rather than limiting it to her IEP, when she goes to college, what are things that are appropriate for her to think about asking for (such as exams in rooms with small groups instead of large lecture halls)? And at the same time, what are things she can do to better her own education on her own (such as recording audio of all lectures on her phone). And slowly, the accommodations became part of her, they weren't something being done to her, someone claiming she needed things she didn't want because she wasn't good enough, they were something that she was controlling, strengthening herself.

Rather than an IEP being something that was people saying "you can't do things the normal way" like she had been taking it as, no matter how the teachers were actually speaking to her, her internalized ableism wasn't as strong, she could view herself as being able to use accommodations. The word "disability" applied to her didn't have as much a strength when it came to how insulted she felt.

Internalized ableism can affect people a lot. I've seen large amounts of self-hatred because of people hating their disability. I've seen large amounts of people refusing to admit they are disabled, because they don't want a "bad" thing associated with them. People refuse accommodations, refuse to do things that might make them look odd, refuse to do things associated with their disorder because they want to see themselves as normal - even when it is at the cost of being more symptomatic.

Actually using tools when they help is powerful. Actually using the accommodations you can can be the difference between managing and not. These can be challenging to do, because we're so used to being told not to, to not being able to, to having to fight to look normal. Sometimes, the first fight, or even biggest one, is against is ourselves.

Assumptions

Can I do everything or nothing today?

What? Why are you surprised by me asking? I'm told this, aren't I? I'm told whether I can do anything I'm asked, or whether I shouldn't even try because I can't manage. I'm told whether my capabilities mean I have no impairments, or my impairments mean I have no capabilities. It can't be anything in between of course.

So, tell me, which are you assuming about me today?

Is it the ever-common, because you are verbal, you can always communicate everything you want?
Or maybe, the if you can type, then you can do all sorts of self-care?

Is it that being in a relationship means all social interactions are a breeze?
Or that holding a job means that all impairments melt away, and no accommodations are necessary?

Is it that having meltdowns means that I will lash out and hurt you?
Or that I choose to hurt people when I shutdown, not being able to reply?

Is it that walking in public alone means that my body is reliable?
Or that because I need help to get through a city, I am incompetent and unintelligent?

Is it that I'm a liar when I talk about myself?
Is it that I cannot know my own experiences, or that someone like me can never be trusted to speak the truth?

Is it that I'm not allowed to ask for help, and any excuse is to be found?
Is it that I am too lazy to try?

Do you have to assume that it is impossible to be capable of much and still struggle with things you find simple?
Can you not understand that varying capabilities are normal anyways, we just take it to a further degree, to a degree you don't understand?
Am I just so uncanny valley to not be human enough to be able to have a voice to say things about myself?

So I ask again, what am I capable of today?

Expectations and the Implication Thereof

Another loud day. Another day where I figure out what I'm doing on the fly. Another day where I'm to do that while people shout around me. But that's what I'm supposed to do, I'm not really impaired at this.

I do the same thing, day to day, whether or not they want me to. I know there are limits from this. I know that that there are other things they'd want me to do, but this is always helpful, and always something I can do. It's always something I can remember before I can't think. I fall into safe space of understanding. But when we finish and I'm expected to do something else...that's usually when its loudest. That's when my head is spinning. That's when I don't know where I am. That's when I try to do something, anything, while I don't know what is going on. That's when I need a quiet space to myself for a sensory retreat to have a chance at making it farther in the day. But, can I get that?

I'm not given it. I have to take it for myself, leaving, and finding a spot. Holding myself close, in a quiet room, hoping it will remain quiet. Trying to recenter myself, trying to find my way back to the world, before I need to re-enter their world. Why am I not given this? Why can't I just have these few moments to myself? Why do I need to rush at someone else's schedule, or go out of my way places where I do not know where I am in such a body? Why can't they find ways to meet me when I work too hard to meet them.

In so many ways, I'm expected to meet the expectations of others about what I can and can't do, that when someone stops and asks "could something help you" or notices when I'm getting agitated, it means a lot. Things which shouldn't mean so much, mean the difference between being unable to face activities I want to do, and being capable of it, because now I have had someone else take up some of the effort, usually at little cost of their own.

In so many ways, these expectations surround me, meaning no matter how much I'm not bothering to try to look neurotypical, it does not matter. There are still perceptions of ability that I am always capable of finding my way around a building in their eyes, and I must find a way to manage or I'm left with only myself falling into pieces and still no help.

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?

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"?

My identity is not your joke

My identity is not your joke.
It's not a thing to laugh at.
It's not a thing to say you are because you're "clearly not normal".
My identity is not yours to "play with".
It's not a thing to make into an insult and call people you don't like.
Or people on the streets as they pass by who look odd.
And when you do that, its not "funny", to either me, or those who are saying it about.

It's who I am. It's a thing that is part of me.
Without it I'd not be me.
It's a deep set, unchanging part of me.
And I rather like being me.

So, when you start joking around, think about the words you're using. Because really, we're people too. And you're taking away parts of us in those jokes, as words turns into insults, and we turn into being viewed as bad people because the words are insults.

I don't like part of me being taken away. I don't like being viewed as bad just because you wanted to say you were joking with a friend instead of bothering to think and come up with an appropriate word for the situation (or maybe one that would actually be funny).

But what do I get to say, I'm just a joke, right?

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

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

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

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

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

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

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

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

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

Help us have society listen.

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

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

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

I am not a burden (Day of Mourning 2014)

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

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

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

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

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

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

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

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

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

It's not okay.

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

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

It's not okay.

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

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

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

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

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

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

I'm sorry it had to happen to you.