Thursday, May 28, 2015

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.

Wednesday, May 27, 2015


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.

Saturday, May 16, 2015

"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.

Friday, May 15, 2015

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

Thursday, May 14, 2015


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.

Wednesday, May 13, 2015


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.

Wednesday, May 6, 2015

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.