It's my body, my senses

It's my body. I know it best. You can't tell me how I feel, what I feel. You can't tell me what my experiences are.

You can't say "its not that bad" when you have no clue what it is like for me. Trying to tell me how I can't truly feel my body spinning out of control because of such small bits of movement. You can't tell me I'm making it up, seeking attention, not truly dealing with anything, because you can't understand.

It's my body. I know what its like. I feel my head spinning. I feel the nausea setting in. You might not understand, but my body, my experiences, tell me that this happens, and its mine to say what is happening to me.

Nor can you say "you don't seek things", just because you've actually recognized now that my senses might actually be hypersensitive! Just because I sense things strongly doesn't mean I cannot crave, even if you do not know what it is like to do either and are going from a book. I know what I do, and denying what I do to fit me into your picture denies reality.

It's my body. It's not yours. You aren't the one choosing what I am eating, how I am eating it; how I am moving; what happens through my skin. You aren't the one figuring out how to live in the world, by avoiding and seeking, sorting out and adapting, and eventually determining that there are labels for these things.

When I take ghost pepper extract and drop a drop on my tongue and then follow it up with peppermint oil - will you say I will not seek anything? Because you want me to fit your stereotypes? When I can't string words together until I sit in a swing, am I making it up?

No, it is my body, and I can tell you my perceptions. I might not have the best descriptions. I might not know all the proper words, but you can't tell me that things are not happening to me that are happening to me. I'm the one who gets to say what I perceive, even if you help put labels on what that means.

Tears

You're so socially aware.

But that doesn't help me, as I curl up in tears, aware that there's a problem, but not aware enough to do a thing. My awareness is only enough to tell me that I do not know enough. It is enough to tell me that I am causing problems. It is enough to tell me that people are in pain. It is enough to tell me that people around me are hurting.

It is not enough to tell me how to stop it; how to help.

You're so articulate.

But that doesn't help me, as I try not to cry, not being able to sort out the words that I need to use. It only tells me that I need to choose words carefully, not what they are. That my words can make others feel, can change others thoughts, not what to do when I'm the one that is lost and confused.

What do I do when I'm trying to help, but feel I can only hurt?

You're so high functioning they always repeat. Finding new ways to say this idea. You aren't impaired. You do not struggle. Your life is a breeze, and others relate. Others hear you, others understand, communication is not a challenge for you. How can it be, when you speak so well? When you type out things I enjoy so much?

What of those tears? What of the lost and feeling alone, wanting and needing to make myself heard. What of the not knowing myself, or of not knowing how to get it all out?

What of the trying, and needing to know, of the the tears of the others unintentionally caused. What of the needing to know of the mistakes, and the guilt, and the blame. And still not knowing of a thing to change.

What of the tears that are denied yet again? For I want to do good, and am afraid because I don't know how, and instead seem to cause pain.

"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.

Acceptance is a Journey: Acceptance. Love, and Self-care: #AutismPositivity2015

Acceptance is a journey
And it is one we will always be on
No matter how far we travel there is always further to go.

I learn about myself
What I can do
How I can do it
What I need to do differently
And how I can do better
But I can always learn more

I need to let myself stop and do those better ways
Even when I think I accept myself
I learn
And I challenge my understanding of myself

Acceptance is a journey
One I'm always undertaking
Pushing myself farther
Making myself more okay with who I am and how to best live in this world

Challenges will always occur
And I need to step up to them
Letting myself live in a way better for me
Letting myself be happier with who I am

Acceptance is a journey
One I must be on
Spreading to others
Sharing my message
Of hope
Of love
Of how it is not a bad thing to live as I do

Of how every person is worthy
And how you shouldn't deny someone their humanity
Because of not understanding them

Acceptance is a journey
One that can be hard
But one that is worthy
To undertake
Because we will always make more progress
Towards a better life

Success

I sit at a table, working playing a game with students. Next to me a conversation goes on, which I desperately want to join into, and can't, because I'm working with their classmates. Instead, I busy myself listening, enjoying what I hear. Twelve and thirteen year olds discussing neurodiversity and what it means to be autistic. Preteens and teens discussing their own way of being - my way of being - and the idea of acceptance.

Another time, I sit at the same table, and a student fights within himself - overwhelmed by the noises of the classroom, but afraid of acknowledging his impairments. I'm there with him, sharing his disorder, but already accepting my own, and someone who he views as someone worth looking up to. I am open about my ear muffs in my backpack, and about how much more noise it would take for me to go through the effort of pulling them out even buried so deep. That day self-care and self-acceptance wins, because of acceptance of me, and he gets his own ear muffs to protect himself from the sensory onslaught he was feeling.

Teachers requesting where I got my neurodiversity t-shirt, aides asking about the problems of stim suppression, people turning to me as someone knowledgeable about autism and asking me questions. Most importantly, students treating me as a mentor rather than any other sort of adult.

Success - that is what I get. I make a difference in people's lives, because of my autism, and because I know who I am. I am not afraid, I know I'm impaired, I accept the word "disability", and what I get for it, is my success.

Everyone's success is their own. No two people do the same thing, no two people share the same traits, disabled or not, autistic or not. No two people share the exact same goals. What I manage though, is managing to show people that they are worthy, by showing them myself. I manage to show them how to accept themselves, by showing them that it isn't a scary place of lesser being and inability, it is a place of acknowledgement of impairments, and a place of finding themselves and their own goals. I manage to show them the worth of everyone, slowly, by showing them that impairments don't define the worth of a person, even when they begin afraid of impairments doing so.

My success is helping people through that process, speeding it up, making it not one to be afraid of. My success is making other adults start to see bits and pieces, and what that might mean in education. My success is taking being myself and spreading the idea that you shouldn't be afraid of someone like me, and it working. My success is seeing steps, someone asking me for help for more ways to take care of themselves, someone talking more openly about who they are, someone turning and talking to others about how autism isn't a bad thing.

These aren't things I could do without being autistic. I use my autism productively, because it is who I am. I need to help and share. I need to make people see the beauty of math, see that I'm not a horrible person because I am autistic, need to make people see how much they are, no matter their impairments. I need to take my self-acceptance and project it onto others, until they accept me too, until they accept themselves too, until things become better.

Because in too many cases the children are sitting their not understanding who they are, because nobody tells them. The parents fear because nobody tells them. The people around haven't heard any words about autism besides "autism speaks". There isn't any ideas of what or who we are, except the idea of fear. I am not afraid of who I am, I see no reason to fear me, even if sometimes I need a little help.

So, I want to take this, and tell people. Take this and go to the children, and instead of the therapy, just play games working on math skills and while doing that talk to them as a peer and mentor. Letting them know who I am, being open about my diagnosis, being open about my impairments and about what I do because of them. Answering questions about how I cope, and about what my quirks are. Tricking them into learning skills that I think are necessary to learn, and I think will help them, focusing on problem solving skills, and critical thinking skills, and various types of reasoning.

And that's what I do, I share, I teach, I show people and they get to know too. They get to see too the beauty, they get to see too, who they really are - someone who isn't to be feared.

Self-care

I've been wanting to write my autism positivity post, and known the topic I want to write about, but can't find the words to get started. Organization of thoughts, word finding, none of it is working when I request it, it happens on its own time. I attempt, one time, another, and yet again, to write, putting words down, and none of the sound right.

But, why do I have to do it this way? Instead on my day off work in the middle of the week (an incredibly useful coping strategy), I bring my laptop over to my swing, and set up around me for what might be a better way for me. Taking care of my sensory needs first.

I want to share about who I am, what I do, but instead, I need to take care of myself. Self-care comes first. Trying to focus on others cannot come at the cost of myself. I need to remind myself that. I need to remember, that as much as I want to help others with recognizing what they can do, I need to let myself be capable of these things, I need to let myself take the time to spend on my recharging.

I need to remember that it isn't just denying who we are that is a problem, it is denying ourselves help for any reason that is a problem. Denying ourselves help because we refuse to get something abnormal is common, but denying ourselves help because we don't want to cause the "problems" for others is similarly one.

We need to let ourselves stop and rest. We need to let ourselves call in sick. We need to let ourselves fight through accommodation processes no matter how much they try to say it'll cause them problems to do things which won't cost them a thing. We need to even go so far as stop and say "no, I can't do this job" and quit if our bodies demand it.

We need to do self-care, even when other things seem to come first, whether it is activism, or teaching, or simply the latest video game. Because those aren't what come first, we are. I need to put myself first, and take care of myself, even when others don't want me to, even when I have other things I want to do, even when I feel like I'm wasting time that I could be getting so much done in.

Self-care is necessary, it just takes reminders sometimes.

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.

Feathers on the Inside

Take a feather, and run it along your skin, as lightly as you can, trying to catch that point where the irritation of almost but not quite tickling occurs. Capture that feeling. Remember it.

Now take that feeling, and stick it underneath your skin. And extend it, its no longer just that tickling, now there's pain too. Except you can't feel the pain right either. It's wrong. You absolutely know it is wrong. What else could it be, if there's painful feather tickles trapped under your skin through out your body?

When you have a feather on your skin, and it is causing a problem, what do you do? You make it not be there? If someone is seriously chasing you down with one and it is causing you this much distress? You would probably run and hide, getting away.

But now we're within your skin. And you want to run, you want to escape. That's the overwhelming feeling, wanting to run, get away. Your body feels wrong, you need to get away, you need to get away from the taunts, the pain, the flick flick flick of feathers, and tensing up of nerves misfiring. Feeling every bit of skin from the inside. Feeling the uncomfortable tingles and feeling every bit of air passing by.

You need to get away, run, run as fast as you can. How far can you get away. How fast can you go? What can you to to make this assault on you end, and how can you separate yourself from it? The faster the better. You must do it. You must.

But then, again, no, you can't. It's all inside. It's all in your body. You can't run. You want to; you need to, but you can't. There's no escaping by leaving.

So, instead, maybe you can make it leave? Maybe you can find yourself beneath this parasitic invader? Maybe you can make yourself feel better.

It's not parasitic in that there are actual parasites, but there's something taking over, and it needs to get away. It needs chased out. You need your body back, and you need it however you can. You are losing control, because your body has a mind of its own. Your body is trying to get rid of its attacker, even though its attacker is itself. The attacker must be gotten rid of. The attacker must be chased out.

You'll get rid of it, you'll get rid of the invader, even if it means harm to yourself in the process.

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.

A Wizard Alone

I remember 2002.

There was this book I'd pre-ordered. I'd gotten the first four in 4th grade, realized it wouldn't end there excitedly when I saw the fifth in the library when it came out. It became a series I'd have to pre-order books for. This one had just came out. It was named A Wizard Alone.

There was fantasy, and all of what I looked for. It was one of my favorite books. What was different about this book though, was that one of the characters was autistic. He was presented as entirely in his own head, and it wasn't made clear (to me at least) how much that was autism and how much that was plot. In the end, he was magically cured, having chosen to give up his autism, when he was able to in a magical way.

This was also the year I was told that I was autistic. It wasn't in those words, and I didn't understand. I was a 13 year old, without much support when it came to this in particular (because of lack of knowledge), no matter how much people supported me in everything else.

I was told I probably had Asperger's. I didn't really understand what that meant, though I was given some information. I responded by hiding back into my books in confusion, though I'm not sure anyone realized. Of course, one of the books I returned to was A Wizard Alone, with its autistic character. With its character who was magically cured.

And I actually started figuring out myself with that, though not in the best way. I reacted with confusion from one of my favorite books being like this and my disorder being autistic spectrum and then "that's not me". I don't want to be cured, I shouldn't be cured. I reacted in the way I see so many people doing now, separating themselves from the people they call "LFA". I went strongly mentally into neurodiversity, but I didn't understand it. I wasn't understanding how someone could be impaired and want to be themselves. I couldn't understand my own impairments.

I had this internal struggle going on in many ways. I knew I was happy with who I was, and apparently had these labels, but I shared these labels with someone who it was clearly a wrong part of them in my favorite book. How could this make sense? It wasn't making sense, and I pushed it all away. I made it so that this could be a favorite without it saying any less about someone who was like me, I made myself different.

Yet at the same time, I related, and I kept returning. I reread this book more than the rest of the Young Wizards books in these years. When I was trying to understand myself autisticly, it was one of the places I turned, because it was a book that meant so much to me, and who's characters were important to me, and which autism was a part of. The fact that it ended up with the autism going away didn't mean that the autism wasn't there. I eventually started trying to find ways to justify it like it not really being autism, because I related to feelings even though the traits were so much more pronounced than mine, and didn't want that part, but didn't want to think any less of the book.

I figured things out eventually of course - I didn't keep othering people, splitting it so strongly into Us vs Them. But, it was after this strong reaction from this book of "I can't be that, I can't be someone who gets treated that way, they are, not me". And I didn't at first realize that they shouldn't either, or that it wasn't me vs them.

My early process was very defined by that book. It wasn't one that was negative about myself, but it wasn't one that was positive about disability, or other people, and it was one that was me not being able to recognize that I could be impaired. I don't now know how I viewed myself, as both having this disorder and having no impairments, but I did so.

This would all suggest though, that there are a lot of problems with this book. (No matter how much it was one where I read it I don't know how many times in my early teenage years. It really was one of my most read books.) And there are, the treatment of autism was really negative. But, what was awesome, was that the author recognized this, and worked on fixing it, and that itself is worthy of mentioning.

There was a new edition put out in 2012ish, where Diane Duane was fixing timeline consistencies and updating it for newer audiences. I bought but was terrified of reading A Wizard Alone, because of the treatment of autism. It could be done well, it might be done terribly. What came out of this update included references to the intense world theory, suggestions that autistic people are actually people, and a character who in the end had the choice whether or not to be cured and chose not to. There was actually an autistic character now, not someone who was there only to speak of the horrors of autism.

It was in many ways, saying that book that started my journey had been revised into one that didn't say I shouldn't exist. It could agree with autistic people. It wouldn't limit me into being someone either with impairments or with abilities. That was something needed and which is so hard to find in fiction.

When I started, I was someone young and trying to find my way, not aware, but not wanting to be treated badly. Now I'm being shown that I don't have to be. Progress is happening.