Wednesday, December 23, 2015

Real Person

I'm not a person to you if I'm only recognized when you see how much I can do. I'm not a person to you if you deny me my personhood when you only see the autistic spinning rather than the educator. I'm not a person to you unless I'm even a person curled up in the corner, rocking, and unable to communicate in any way that you request.

My personhood is not determined based on whether I'm inspirational, whether I'm successful, or whether I'm managing to be "useful" right now. It doesn't flip-flop on whether I'm seen as disabled or passed into personhood.

My personhood is a non-changing state of being. And if you don't accept it, you are the ones judging me because I'm not an inspirational enough story for your cause.

I'm actually a being here, not a story.

When you suddenly personize me, suddenly give me personhood, you're not suddenly opening up all of what is available to others. You're saying "but, only if you manage to be good enough"; you're putting requirements on my ability to be recognized. You're making statements about how I should be, how I need to be, in order to be accepted into Real People, rather than those fakes that are how I really am. And you're saying at the same time, that I'm not a Real Person, because I cannot keep up those requirements.

When you remove that personhood - it's a reminder again, of how I'm never good enough. How it doesn't matter what I do, I'll always be a lesser being in the minds of so many around me. I'll keep going, but I'll never be in the same class, always lesser, never Real. When you remove that personhood, I'm back with the others like me - those who make due, those who find their way.

When you change my personhood based on the eyes you view me with, you aren't making it easier, you aren't making it friendlier to face the world. Please, unless you can always recognize me as a Person, all of what that means - not in the way that makes you your own inspirational story for befriending "one of those", then realize that I'm not Real, our society disallows for that.

Saturday, December 19, 2015

Burnout [aka Expectations]

Autism is expectations. And trying too hard. And people thinking they know more than you do, whether they are parents, or professionals, siblings, or friends. People being convinced that they know more about how your life is than your life is.

Autism is expectations about what you can do, and can't do. Whether its because you are supposed to do things because clearly you can, or supposed to do them differently, or supposed to not be able to, its people declaring what your life is able to be, whether they are sharing the statements explicitly or not.

It's expectations, and them being forced upon you. You need to be able to work a normal shift. You need to be able to cook. You need to be verbal always if you are verbal ever. You need to be verbal never if you have the label attached to you.

It's expectations, and them seeping through your life, people claiming to support, when they're not listening to you, but to what they think you should be like. People planning out their view of what someone like you looks like. People planning out what someone with your skills will do, creating inspiration porn of you before you've even gone and done anything for them to be "inspired" by besides be born.

It's expectations, and them making you try to hard, because its exhausting to have people telling you how much you let them down all the time. Exhausting to know how much they're building expectations, and then you're breaking them. Exhausting to know that you're failing them, over and over again. Because you've been taught you need to be normal. You need to meet these expectations. You need to do what they think of you.

It's expectations, and you failing them. Because you can't do it. You can't go out there and do what others have created - a perfect neurotypical life, for an autistic person. You can't go out and do it - a life where you don't run out of spoons, don't get sensory overload, don't lose speech, don't, don't, don't.

And then. You break.


And you fall.



Needing help, and unable to get it.

Because the expectation is that you're just fine.

Don't you know, you aren't really impaired.

Thursday, December 10, 2015

The student you have; the person they are

When you put someone in a classroom and don't pay attention to who they are and their needs, you aren't including them, you're erasing them. This is not to say that you should separate; it isn't to say that "separate but equal", is superior. Separation, segregation, refusal to teach some students while you teach others, causes an enormous number of problems. But, taking someone and sticking them in a classroom and ignoring who they are ignores their existence. It causes problems, while only solving some of the problems of access.

It causes people to break, as they become pushed, further and further, through the inconveniences of their existence, aware of the "problems" they cause to others. It causes people to fail, lacking assumed background, assumed cultural reference points, assumed ways of being; because "everyone knows those things", even when "everyone" means "people like me".

When ignoring the students you have, rather than the students you want, the students you expect, or the student you were, you're preventing these kids from getting educated. You're denying education, just as if you'd denied them entrance to the classroom. You're allowing them to be there, but denying them the ability to access the material. Refusal to acknowledge differing needs, differing backgrounds, differing experiences, means refusal to allow these students the possibility of getting the same education the students you expected are being provided.

Instead, we must recognize the differences in our students. And we must do better than recognize these differences, we must do better than praise ourselves for allowing students to enter our classrooms when they are different. We must do better than praise ourselves for being "aware" of these differences.

We must recognize the differences in our students - and what these differences mean. We must take these into account, and interact with people how people should be interacted with. We must respect people, listen, and not assume that there is only one way to approach any given situation. We must challenge ourselves to do better.

Because, when we only teach one way, we aren't helping any student. We're not approaching education as a way to teach individuals; we're approaching it as a way to spread a message. Kids get hurt. Those who are already at a higher risk get hurt more, as they're already farther from the "average student" the lessons are built for. And the more people learn that they aren't learning in school, the more they don't learn in school.

No, we need to do better than that.

We need to listen, and learn, and teach, and pay attention to the kids we have. The kids that are there. Their baggage and silly behaviors; their backgrounds and methods of thought. Whoever it is that shows up, that's who we have, and that's who we teach.

Tuesday, November 24, 2015

Reality is more extreme than Fiction

I played a game where curing autism was a major plot point. I won't describe all the details, because spoilers, but it is pretty obvious that anything that includes this would include some pretty horrible people.

I kept getting "I hope you're okay with this game"

And I kept thinking "I'm wondering what the problem is. I can't figure it out"

Because the truth is, whenever I've seen people try to emulate horrible people around autism, around cure, around how inaccurately autism is viewed. They don't make it, it's always understated compared to the truth of the reality we live in.

I've never seen something as ridiculous as "dolphin-people" in any parody when discussing a cause of autism. And none of the emulations include a treatment as on-the-surface horrific and yet still being used as forcing children to drink bleach. The reality of normalizing behaviors through forced eye contact, stim suppression, and other methods, are removed, or hidden - speaking about how much people care about the children even in the situations where such methods would be used.

Even when the focus is cure, obsessions with cure are played down! It is played as if "we want to find one that works", rather than "we'll do anything at all, no cost is too high, in order to get a cure". Children aren't traumatized from the search, attempt after attempt, forcing "treatment" after "treatment" on them, not letting them be kids; trauma beyond the trauma of knowing they're wrong in their parents eyes.

People are seen as disposable, and that's supposed to prove a point, making it more extreme than reality. But, how is it, when it murders are played off as mercy killings; when accommodations are seen as too much work; when the ability to be autistic and accepted is based on how easily you can be seen as neurotypical.

No matter how extreme people have tried to make these, the furthest they've gotten, is displaying how reality is. They've not gone into the land of satire. Reality is too extreme for that. People are really, just that ableist in real life.

Monday, November 16, 2015

Dear Hubway

Dear Hubway,

I know that there are reasons to have rentable bicycles around Boston. It's a great concept! People should be encouraged to bike around the city instead of use cars. I also know that you talk about the importance of safety while bicycling, including providing more affordable helmets. Safety is important, and certainly overlooked by too many.

However, the bikes you provide are absolutely in no way safe.

It is not safe to cause people seizures for doing something as simple as walking down a street where someone has chosen a to ride. Your bicycles do such things. Flashing lights, your flickering lights, cause risk of death for many with photosensitive epilepsy.

It is not safe for people like me who don't have epilepsy, but have other photosensitive disabilities. If my brain stops being able to process things properly because of the flashing lights of people riding your bikes by me, I might not know where I am, what I'm doing, how to walk. It is not safe to be trapped, because you have decided that flashing lights are what to provide.

It is not safe for those riding these bikes either, as studies have shown that drivers struggle with identifying distances when the lights are flashing. Solid lights are much less disorienting even for those without disabilities. Solid lights people are capable of recognizing what they're seeing.

But even if it were fine for the riders, even if it were safer for them, it is necessary that people with disorders such as epilepsy be capable of doing things like grocery shopping. It is necessary that you take them into account for your business model, instead of doing things which are easily fixed, and known to be problems for the most famous trigger for a well known disability.

It's not reasonable to ask someone with epilepsy to not leave their house, because they might meet a flashing light if they exit. The fact that this is the approach many people take does not make it acceptable.

It'd be a lot safer, more straightforward, and more reasonable to simply have you make a small alteration. Swapping your bicycles to use safer lights, non-flashing ones, would make things safer for everyone.

Lights which let people see, know where each other are, and those of us who are walking, be capable of having our brains not backfire into whatever our disability has been triggered into today. Lights which let us be members of the community, rather than prevent us from taking part. Lights which don't cause people to know, that leaving their home is a roll of the die of what they're risking today.

Please, make the changes to make your bicycles safer. What you have isn't safe. A small change can make a big difference.

Sunday, November 1, 2015

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.

Thursday, October 29, 2015

I type to communicate

I type to communicate.

Here is communication.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, October 8, 2015

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.

Monday, September 28, 2015

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.

Sunday, September 27, 2015

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.

Thursday, September 17, 2015

I wish you'd hear me

If I say these words, will you listen.
Or will you hear what you expect.
Will my words get lost in a sea of sound?

Does your selective hearing work among ideas too?
As it does the sounds in the world around us?
Do you get to hear what you choose, blocking the rest out?

I wish I could show you. Maybe then you'd understand
The ticking of the clock
The humming of the fan
They jam me up, they block my thoughts, my decisions, my ideas from traveling
Anywhere at all
While you deaden your senses to the world

I wish you'd see. The closing in. Darkness.
Or the narrowing confusion of not knowing what is around.
Not being able to rely on whether something is truly there or not.
Not knowing how far it is.
Or even knowing that there is so much more vision out there than you currently understand.

I wish you'd believe me. The pain. The blankness. The not knowing who or what you are.
The not knowing what will happen this time. Will I be able to see? Speak? Walk?
Always planning. Always ready.
Never being enough.
The struggle of someone who at any moment might Stop.
Their motor cortex having been taken over by the migraine spreading through.

I wish there was a way that would be enough
But more, I wish you'd believe
And that there might be at least one safe place.

I wish, that maybe my senses were listened to
By someone not me

Tuesday, August 18, 2015

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?"

Tuesday, July 21, 2015

"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.

Saturday, July 18, 2015

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
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.

Thursday, July 16, 2015

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.

Tuesday, July 14, 2015

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.


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.

Monday, July 6, 2015


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.

Monday, June 29, 2015

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.

Thursday, June 18, 2015

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.

Tuesday, June 16, 2015

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.

Wednesday, June 10, 2015

Functioning Labels

When you use functioning labels what are you trying to get across?

How impaired someone is? What needs someone has? Or is it simply "How different are they from me?"

It's talked about how there aren't other ways to succinctly - and even correctly - identify strengths and needs; yet, is that what you're doing when you are using functioning labels? Is it what you are even trying to do when you really think about it? Are you thinking about which strengths people have, or what needs they have? Or are you only thinking of othering them - how odd are they? How well can they fit in if we're comparing to someone like me? Could they pretend? Do they do things I consider necessary for a normal life, because they're things I want to do; things I think everyone should do? Are you thinking about what they can do? Are you thinking about how much help they should have?

Because how are functioning labels actually used?

There's the IQ > 70, IQ < 70 version which at least gives some information, but that's rarely used by common people. And even then it isn't telling you about strengths and needs. It's telling you whether there is co-morbid intellectual disability. This way isn't about othering... but how much is it common usage? Is it what you're meaning? And does it actually do that "identify strengths and needs" thing which you are referring to?

And there are many other ways that high functioning and low functioning are used.

Verbal vs Nonverbal is one; but then what about partially verbal? What about when someone only speaks using echolalia? What about being completely fluent in a non-speech but word-based communication method? People argue, label, and deny other labels, saying people are "high functioning" to deny need, and "low functioning" to deny strength. Neither actually says how well people communicate. Neither is even used consistently.

What about how much help people need in self-care? I've seen that one as well. Yet what qualifies as self-care isn't even considered the same every time. What qualifies as help isn't always the same. What is considered standard development of children isn't even standard between conversations!

Frequently I hear "high functioning" used if people can see strengths. And "low functioning" if they can see needs. But what about the needs of those who you can see the strengths of? And the strengths of those you can see the needs of? Neither of those are explained at all.

And that even doesn't take into account that no two verbal people have the same communication abilities, no two people who need help to eat need the same help, and no two people end up having the same strengths and needs in general.

It just doesn't tell us what people have for strengths or for needs. It just tells us which stereotypes are being applied today.

The stereotype of "you're just like me" so I expect everything of you, because you must have no challenges, you must never need help. Why? Because you're just like me. Because someone who could hold a job, or even simply speak, is someone who we know can't need aide. You must lie if you speak of your struggles, because impairments do not exist in people who look like me.

Or the stereotypes of "you're so different than me" so I pity you, look down, because you must struggle through life, must not have strengths. Why? Because you're not like me. Because someone who doesn't speak, spins, needs help with being fed, is someone who there's a question of whether their life is worth living, as if that question could be answered by someone besides the person themselves.

There are the stereotypes High Functioning and Low Functioning, not telling us anything about the strengths of the individuals, not telling us anything of needs. Not telling us if people are verbal or nonverbal (because definitions vary). Not telling us if people wander or not (because all sorts of people wander). Not telling us if people can cook, clean, live alone, hold a job, or manage money. Not telling us interests, things people thrive in, whether it is spinning tops, cameras, trains, or Dr. Who. Not telling us strengths, whether it is being able to picture what is being described, an ability to relate to animals, or writing poetry that makes people feel the way they should feel reading such a poem. The labels don't say that. The labels aren't people. And at the same time they aren't descriptors with meaning.

Autistic means something, it tells us things about who we are. It shares information. It lets us relate to ourselves, to each other. It lets others understand more about what sorts of things to expect from someone like us.

But functioning labels don't give that sort of meaning, it doesn't tell us anything, doesn't let us understand ourselves better, doesn't let others understand us better, doesn't let people communicate better about who we are; because there should be no expectation because both parties would have the same definitions.

All we get from functioning labels are "who's better than who?", "who deserves what?", neither of which ends up being true.

Wednesday, June 3, 2015


"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

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.

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.

Thursday, April 30, 2015

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.

Wednesday, April 29, 2015

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.

Monday, April 27, 2015

Struggling to Explain

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

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

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

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

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

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

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

Wednesday, April 22, 2015


Sometimes I feel like I'm just lazy, and like I could do so much more if I just tried. Like I make people do so much for me that they don't need to, because I won't figure out how to, and like I should be figuring out how and doing these things.

Other times, I feel like I'm overworking myself, refusing to take care of myself, pushing too far, doing too much. Like I'm not watching out, and burning myself down to nothingness.

When I am managing to put together the pieces of how to do activities, I feel like I am overstating my impairments, like I don't need help, like I'm capable of doing it all on my own. I don't see where the challenges are, and can clearly complete these, and much more complex tasks.

But when I'm struggling, I don't know how to organize the pieces enough to find one to start from. I can't figure out what to do, or where to go. I can't understand how I could ever complete such things, they seem so far away.

Sometimes, the challenge is to predict which side I'll be on, whether I'll be thriving, or struggling through. Sometimes, the challenge is having gotten that prediction wrong, and having me alone, unable to meet my needs, even though on another day, I could do more than just that. Sometimes, the challenge is having fallen too fast from from side to the other, and trying not to feel like I am not worthy, as I need to ask for help and don't know how, when the day before I didn't need this help.

But as the crickets chirp, and the sky fades, today, my body decides, it is time that we can work together. Whether or not the pieces were fitting earlier today do not matter. Now the world feels safer; now, it makes sense.

Now, I need to remember, that I am not lazy for needing to ask for help sometimes, I just need to thrive in the fact that I do not need to at this moment, while my body and mind agree.

Wednesday, April 15, 2015


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?

Tuesday, April 14, 2015


No matter how many questions are answered, there are more waiting, questioning. No matter how many questions are asked, there are more out there to be found.

No matter how far you search, reaching farther, journeying longer, is always a possibility.

And that is the journey of our lives.

Our lives of questions, answers, solutions, and challenges; ways to cope, and never being enough, but always questing for further solutions, further answers, further skills to aide. Our lives of asking ourselves what we are doing, and how we are doing it, finding new ways, and doing it.

My life is a life of questions. Everyone's is, but mine I see a list of questions with every action I take. How far can I push myself? What are the things I need with me now to protect myself from my neurology? Simply, what do I do?

My life is a life of answers. We all answer questions. We all quest and grow. We all challenge ourselves and come out ahead of where we were.

So my days, I have questions. They are the questions of my days, of what do I do, and how do I do them. They're the questions making me choose how I act. How do I get through a school when I don't know where I am? How do I teach when I can't see more than a square foot at a time? How do I walk when I don't know how to balance? How do I prepare when I don't know what symptoms will hit? How do I navigate when my body tells me I have choices like being able to step forward or having any sight, but not do both simultaneously? How do I keep hydrated when I end up so heavy that I don't remember how to stand? How do I keep safe, when my motor cortex might stop working?

And then. Then, I answer these questions. I find answers, I don't say I can't. I find ways to navigate a school on memory and touch. I plan what to carry, and organize it carefully. I teach my brain how to stop using vision, so I can use other senses more efficiently, and process with other senses when I need to, giving myself enough tactile input that I know where I am. I teach myself how to use sounds. I practice using other sorts of motion, other parts of the brain, for when I need it, so I'm not trapped in place.

I find answers. I find ways. Because I'm not going to be trapped. I'm going to adapt, I'm going to find a way to succeed. My body might not respond like yours does, but I can answer how I can can do it. They are my questions.

I challenge myself, and constantly, I'm asking more questions, and finding more answers. I'm finding more ways to cope, more ways to adapt, more ways to make myself work better in a world so toxic. And answers lead to more questions, more ways to seek out ways that I might adapt how I interact.

I question. I answer. I seek. I find. I learn. I grow. And more questions come.