Passing (or How Little They See)

I walk down the hallway, my hand running across the lockers, across the walls. It keeps me here. It shows me where I am. It keeps me balanced and makes me understand what hallway I'm in and when I need to turn.

I go to the room. The bell shrieks. I freeze up. I forget what I'm doing and where I am. All that I know is the noise. It's too much. I don't know how to move my arms to cover my ears. I don't know how to soothe myself. I just know how to exist, frozen, in space and in time.

I come back. I go back where I was. I continue on, talking about whatever was going on. Had they changed topics? Probably not. Usually its me teaching something. I just keep going. I explain it well. I tell them what is going on. I teach myself that when the bell goes, I need to tell them to leave even if they don't want to go to class. Eventually I remember that. It takes a while to stop teaching and tell them to leave, but not too long.

I have my math. I go back to it. I have how people are doing. That I keep track of. Why they aren't doing well. How can I improve their educations. What aren't they getting and how do these pieces fit together. I keep track of it always. I'm always fitting the pieces together.

They don't notice. They see someone teaching math. They don't notice the person always taking care of their body in order to have any clue what is going on. They don't notice the lack of anything off topic.

Then someone says hi, and I don't reply. They repeat it multiple times. I eventually process that there is someone there talking to me. A bit later I process I should reply. Um, what do I say, I don't know. Too much going on. All my processes on surviving. Not on these things. I try to redirect because its necessary. Enough gets through. I wave. I'm pretty sure that was the right thing to do. Words were to hard but gestures I could force through. I think she got annoyed first. My emotion sense of voices are saying "negative".

I keep going. I have to swap places I'm working. Does everything else get to stay the same? Yes, good. I forget some things in the shuffle. Got most of it. Piece it together. Managed to make it not a big deal that I forgot pencils by loaning out my pen repetitively. All the things I have to think about to manage to swap are so many. But its not so many that I can't teach my students, just that its a bit more awkward and we're a bit slower. We make it through the day.

Because I swapped places I'm expected to get my students here somehow. How do I do that? I ask. I'm told there's the phone to the office or something. I don't understand. I look at my list and have names and locations. I ask what to say. She explains something about asking for locations and students and I don't understand what to say. I try to get it clarified but its still confusing. She moves onto something else. I do everything I can to make it easier to do our work, but run out of things to prepare. I need my students. I go over and pick up the phone. I say hello. There's someone there. What do I say. I don't know. I'm confused. I try to ask the person in the room again, and I still can't figure out what's meant. I try to explain what I need and it doesn't make sense. I try again. It still doesn't work. I directly say what it is I need to tell them, that I have students in rooms and I need them here and I don't know how to get them here. They ask for what rooms and what students, I tell them, and get my students. Now I can do my work. I know how to work with students. Not how to do these phone things these are weird and complicated.

I go back to the hallways, flapping my hands, running them along the walls. I re-orient myself here. Make myself understand what is going on. Then back to my students. Teaching them makes sense, if I only I can get through the rest of the day.

All the parts

Communication is hard.

Think about all you need to do. You need to figure out what you want to say. You need to think about how to say it. What words to use. Where the emphasis goes; breaks, and pauses, and points of forceful emotions. You need to think about what ideas there are associated with those words; all of them, not just the ones you want. Do you want those? You need to think about ups and downs. And you need to think about other people, what will they do what will they think?

People are confusing.

Do they know the words that I'm wanting to use? Do they have other connotations, other implications, to the phrases than I do? They haven't had my experiences - I know that. Can they understand my explanations, with the feelings that go along - the struggles, the excitement, the fear, the joy - all just from the phrases chosen to express what I'm attempting to convey?

Why are they annoyed? Why are they asking these questions? Why are they saying these things? Why do they act in these ways that make no sense? I want sense. Sense of the world around me. These things these people are doing do not fit in any understanding of the world I have.

Why? Why do they act in these ways? I need to try to figure it out, so that I can try to make them understand what I am trying to say. What I am trying to make them understand of my world, of my thoughts, of my experiences. I need to try to understand how these others think so I can try to make them think what I want them to, for at least the period of time of reading what I say. I need to understand. I need to understand, and how can you understand when you don't have that information, when you're missing pieces, when the pieces you have seem to contradict, when you have too many and too few at the same time?

There are so many parts.

Ideas to words. Words to phrases. Phrases to sentences and paragraphs and more. The pieces need to come together smoothly, the words do, when you're writing. But the ideas need to as well. The way you communicate, the way you shift focus, and emphasize, and the way you draw attention with both the word choice and the structure on the page.

Bits and pieces, all piling up to make something larger. How does it work? We understand it, but can we understand what we want it to be? Are we predicting properly? Are the bits the right bits and the pieces the right pieces? Are our ideas being too tied up in our experiences to be understood?

Letters to words, the page fills. But what do these squiggles mean?

Context

One of the blogs I still check up every so often despite the fact she's not posted in years is Just Stimming. Which always reminds me of Quiet Hands. Her post that went viral (for good reason). Her post that I've shown to so many professionals and they've finally started to get it better.

Today though, I think of that post for a different reason. I think of it because of the image at the top. I think of it because of how many different things that image can say, and does say, and how many different ways it says it. I think of it because context is important.

I think of my student, flapping his hands instead of focusing intently on his work. I think of him getting his work done as well as that. And I think of an adult, taking his hands, pulling them down under the table, and holding them for a second or two, telling him to work instead. She doesn't use the words quiet hands. She doesn't need to. She still takes the hands of a child, and stops his stimming, because being autistic is not okay. I flap my hands for him. I flap my hands at all the schools I work at.

And yet, at the same time, I think of my boyfriend, taking my hands, and holding them down, stopping me from scratching my legs for who knows how long. Holding my wrists, putting pressure to try to show my body that there is something okay in it. Trying to help me find a way to make my body feel like something other than a giant thing of wrong-ness, in a way other than scratching it all away until it hurts and the only way to stop the hurting is to scratch some more.

I didn't want to scratch. I wanted help. I wanted to find a way out. I was struggling and every time I tried to keep my hands still on my own I failed, but that was something I was trying to do. He was holding them in ways that were trying to help me, watching out for that.

My student. He was stimming. He wasn't doing anything to hurt himself or others. He was getting his work done. He was stopped against his will.

The same action. The same controversial action of taking someone's hands and holding them down - in two completely different situations. In one situation it hurts, in another, it helps.

But what's so controversial about just doing things for the person, rather than "because autism is wrong"?

No Words

What do I say when I don't have words? You're verbal they say, you should speak.

But the thoughts don't turn into words, and the ones that do, don't turn into speech. There's a disconnect. It doesn't work, even if I try and force it. And when I try, the words leave.

The words only work if I let my fingers do the talking. If I let my fingers say what the thoughts want me to say. If I let things go naturally the way my body wants them to. If I don't try to force my way into a thing that isn't me at this moment. Some words come when I let my fingers say them.

But speech, it doesn't. It's disconnected and the thoughts don't make it there. And truthfully, it feels calmer inside like this. I don't want to fight it. I don't want to try to make myself have to fight back to how I normally am. I do sometimes, when it makes more sense to. And it hurts inside (and might make me sob from how wrong it is) but sometimes I forcibly piece this connection back together.

But either way, I know, I'll speak again. The disconnect is only there sometimes. It's there when I can't handle everything else. It's there when I don't have any need to speak. It's there sometimes, just because it is.

There's no reason. There's no fear, or anxiety, or things I'm near. I'm sitting here in my room, the same place I spend much of my time, typing away here, with just me and my cat and my weighted blanket. It's the same as any other day, except today the words don't work that way.

And I'm okay with that.

I'm okay when the words don't come. It's harder. It's awkward when you end up at a coffee shop with too loud of music, trying to just order hot cocoa and a bagel with a phone and gestures. But, they listen to the AAC device, pay attention to the pointing to the bagel when they struggle to hear it all, and it works out.

I'm okay with it taking longer, and with some people not taking me seriously. Some people don't anyways, so what if there's a few more people who won't listen. I can still get what I need to done.

I'm okay with knowing that sometimes I'm like this, sometimes I'm not, and people telling me that I can't be. It's either selective mutism, despite not matching any signs of selective mutism besides the fact that I'm verbal and sometimes am unable to speak, or a lie and I'm always able to speak and just don't want to.

I'm okay with just being how I am. When I have words, when I don't have words, and when those words need certain ways to get out.

Typing is faster and more accurate than speaking anyways.

My diagnosis was about them being different, not me

I was diagnosed with both Asperger's Syndrome and Sensory Processing Disorder at age 22. They were a long time coming. The symptoms had been life long, I'd been coping with them on my own, and now I finally had been labeled. It wasn't being signaled out, being told, "you are so different, look, we need to give you a special name." No, truthfully, my diagnoses weren't about me being different than others, they were about others being different than me.

Some people are against diagnoses. They worry about labels for themselves. They worry about labels for others. They think that people will be told how different they are, and really in this society different is commonly viewed as lesser. The truth is, we are different either way, its a question of knowledge. Giving people more information won't make them anything they aren't. It will, help explain.

Some people I talk to, describe growing up knowing how different they are, knowing there's something odd about them, searching, wanting to know. They describe finding autism and this meaning they finally understanding their childhood. This wasn't me. I didn't know how different I was. But in both cases, knowledge can be helpful.

For me, like I said, it wasn't at all, about me being different, it was about others being different than me. By the time I was diagnosed I knew I was different, I even knew I was autistic, but I didn't understand it. Through the diagnostic process I learned a lot of what my impairments were; because they were things I assumed were true about everyone. Over a year later I'd be reading yet another book about sensory processing, and say "wait, that's not true about everyone?" and learn yet another way that I just have adapted, and have been coping. I assumed others were like me, rather than assuming I was different. I forced myself through things, but I didn't do it in a way that was taking care of myself, or that was allowing me to get much done, while others were developing anxieties. In both cases, we needed to stop, and learn how to do things properly.

I'd adapted a lot to the world on my own, by assuming it was what everyone was doing. It wasn't in a way that let me get nearly everything I should be getting done done. It wasn't in a way that lets me manage myself properly. So, when I realized this wasn't what other people did, and that there ways I could do things that allowed me to manage myself more properly; I needed to learn them. My own techniques were and are, a great resource. But now I'm learning about myself in ways that mean I don't need to manage making myself nauseous every time I shower.

The diagnoses told me they were different. It told me what I didn't know. It told me how I could learn. It gave me the opportunity to make things better by finding new solutions. It gave me the opportunity to figure out that not everybody has some of the limitations I assumed. Telling me I'm different, might not tell me where to go, but I had somewhere to go. I had a lot to learn. And I've learned a lot about myself. Comparisons aren't always bad. You just need to know what sorts of comparisons you are making, and to try to learn to make fewer assumptions in the process.

Now I deal with the assumptions being made about me, because of my diagnosis. They assume what I'm like, because of my label. This is why they don't like the diagnoses, I suppose. Because they don't like the assumptions. But I still think these assumptions are better, because now I know, and before I didn't know that I didn't know, and that makes a huge difference.

The harm of us vs them; to @SesameWorkshop

When I was a child, I wasn't taught about autism. It wasn't a topic spoken about. Not hidden, but not in the public view either.

When I was 13 or so, I was told, that I probably had Asperger's. I wasn't told much, but I was told some. I was given enough that I could research online.

What ended up happening, was that I went into neurodiversity. This was a different form of being. There was nothing wrong with me. Some people were like this, and other's weren't and this was fine. But what also ended up happening, was that I said I wasn't disabled, denied my impairments, and pushed away any relation with autism. I wasn't like those people. I couldn't see the association, the relationship, between me and the people who couldn't speak for years, if ever.

Eventually, as I grew up, I was able to learn that I am impaired. I was able to learn what my impairments actually are, and I was able to see, wait, this is how I am autistic. And I was able to understand how I'm autistic, someone with a speech delay is autistic, someone with partial speech is autistic, and someone who is nonverbal is autistic. I was able to understand how the traits vary, and yet are so similar, and relate when I read writing by a wide range of people. At this point, its easier for me to relate to someone who's nonverbal than someone who's where I was a decade ago.

But, while I'm telling this story, you might wonder, why this is relevant to someone like Sesame Street. This separation. This us vs. them, is harmful, to everyone involved. I didn't have guidance to learn this. I needed to learn it on my own. I needed to learn how I relate to others, while the information I was getting was pushing me in the other direction. The people who cannot speak or take care of themselves are different than those who can and they are different than the "normal" neurotypical people. That's the overarching view of autism information being shared.

This us vs. them, ends up leaving people without help. It ended up leaving me without help for years, and I'm struggling to get it now. The years of me thinking I was unimpaired, only "different", I knew, and yet didn't do many things which would have helped because I was separate. I didn't need help like those people in my mind. This left me farther behind when I realized what was actually going on. Now, other's view me in diagnostic stereotypes, because of the us vs them fight going on around me of the same, again, denying me help.

It ends up with people getting abused, mistreated, and fighting a world of stigma. People understandably become unwilling and unable to turn to others, when others are right there. Other's struggle along on their own, never managing half of what they could do if anyone would treat them the same as the others around them. It leaves autism, in a world of its own.

Instead of saying autism, all of autism, is a thing, which occurs, a thing which people do need help for, and a thing which isn't a tragedy of burden, it leaves, us, the autistic people. And yes, we're both autistic and people behind.

There's one group, at the center of all of this. There's one group, which leads the charge of how autism is a burden to all the families, to the world! And how it doesn't matter if we're trampling autistic people in the charge. There's one group which says that if you're able to speak, you're separate. That groups people, and in doing so takes the voices away from members of all groups.

You've probably heard lists of what's wrong with Autism Speaks. The list is long: dehumanizing; spending little money actually on helping families of autistic people (4%); stealing writing from autistic people; the "I am autism" video; not having one autistic member of the board of directors; things like someone in leadership talking about the only thing stopping her from driving off a bridge with her autistic daughter was her neurotypical daughter at home on video; generally denying anything about adults with autism, or our ability to do anything successfully...

These all cause pain directly. They also build a culture of fear, hatred, and fighting. People are afraid of those of us who are autistic. Why wouldn't they be, when they're taught that the only thing we are are burdens who are unable to ever contribute to society and who meltdown at the drop of a pin. And people are becoming more and more aware of autism than when I was a child, and not in positive ways. Now autism is a bad thing. It's a bad word. It's an insult.

All around autism; there's hostility and fear, in ways that we're needing to unite against in order to try to overcome Autism Speaks. We're needing to try to teach that every person deserves to live. We're needing to try to teach that every person deserves to be able to be treated with respect. We're needing to try to teach, that every person. Everyone, deserves a chance.

Teaching about autism is a notable goal. There are many reasons to want to teach children about autism, from classmates growing up, to seeing behaviors that would be pointed out in public. However, teaching about autism should be done in a method that promotes equality. We deserve our voices, whether spoken, typed, or pointed.

Many good things are taught through children's television. This could be one. Autism Speaks, while the biggest name in autism, is one who isn't there for those who are autistic, and is that toxic.

Please Sesame Street, do this another way.

Written for the "#EducateSesame" flashblog

Book Review: The Speed of Dark

This book seems to be popular right now, its a book about an autistic character (and a verbal autistic character who isn't talking about Asperger's even rarer in terms of what gets written about), and I read it earlier this week. So, it seemed straightforward that I should write about it, seeing as I had some strong opinions, both positive and negative about the book.

Overall I think the book had the most accurate portrayal of autistic character I've read in fiction. It did get stereotypical at times, but less so than usual when dealing with autism and fiction. The characters also were actual characters, not just "lets read the DSM criteria and call that a character", as well as were actually allowed strengths, even if the strengths were stereotypical of autism. Things like sensory processing were actually taken into account, as well as stimming being helpful to the individual. Beyond just the autism itself, there was also getting into how people treat autistic people, the fact that different people have different views about their autism, and those sorts of details.

The number of details was impressive. The author mentions in the section after the book that she has an autistic son who's in high school now, and it shows that she actually knows something about the spectrum. It wasn't just someone writing about autism because its the current popular subject. That was definitely a good thing.

But, of course, it wasn't done as well as it should have been. Overall my views was that they took a good thing and they ruined it.

(After here, there will be plot spoilers, so here is your warning)

Snippets of trying to explain hypersensitivities

I've been trying to try to explain hypersensitivities (and SPD and sensory issues in general but usually its hypersensitivities), pretty frequently now. I've been ending up putting together snippets from explanations that I give to people trying to understand their children, thinking that they'd be good to share. I hope to repetitively do this, but have no clue if I'll actually do so. Also, this is good to refer back to either way.

The sound of nails on a chalkboard, the wrongness of it combined with some sort of pain, that penetrates deep into you, take that feeling, and extend it, take it so that it doesn't just happen with nails on a chalkboard, it doesn't just happen with sounds. It might happen if someone touches you, or if the wind blows wrong. It might happen when you get your nails clipped. It might happen when you hear certain voices, even ones that are popular singing voices.

Things are just so much you can't understand it. Lights so bright you can't see. Streetlights, the sun when its setting, headlights on low, they are so much light that that's all it is, is light. It's meaningless. Everything around is also meaningless. It becomes overwashed by light-light-light. That's all there is. Noises so loud you can't understand them. Even single noises become hard to identify at times. When they combine, multiple noises at the same time, you drown in a cacophany, whether its voices, sirens, or something as simple as a clock ticking.

You notice it all. The feeling of your clothes, all the little details down to the seam in your socks and how its not sitting straight, and how one shoe is tighter than the other shoe, the texture chair you're sitting on through your clothes. You hear the clock ticking, the fan, the cars outside, the voices in the room next door, the steps of people walking, and the creaking of the floor. There's the smells of each of the people, any perfumes, any smoke, what they washed with, as well as the smells of what the place was cleaned with. You notice it all. And then, after noticing it, it doesn't stop. You don't stop noticing it. Don't get used to it. At the end of the day you're still feeling your shoe, and how it is the wrong tightness. At the end of a meeting, you're still hearing the clock ticking, even if you've been trying to listen to someone talking the entire time. It's still all there. You don't habituate either.

There are thing's flying at you from all sides, and you're trying to catch enough to make sense of them. It's a bombardment. Except, everyone around you is denying its a bombardment, and frequently making it worse, after denying it. Eventually, you're hit too many times, and you can't keep catching them. You fall. You try to regroup, and get backup, but people are just telling you that its not happening still, while you're trying to get back together, even without their support. Meltdowns occur, shutdowns where you lose abilities to do things occur, but you just keep going, and people still don't listen.

Things actually hurt. They're not just "overfeeling", its actually to the point of pain. Sometimes its like the wrongness like I mentioned before, but sometimes, its more general. Sounds similar to getting punched, for example. Of course people deny you can even feel some of these things that cause pain because they can't feel them. But...that doesn't make them hurt any less.

I don't want to be an activist

I don't want to be an activist. I don't want to go, and talk about how people like me deserve to be treated better, and point out how badly we're treated. I don't want to worry that writing about these topics will make me more aware of the problems in the world, when I'd been able to previously been blissfully ignorant, causing me to have to deal with the awareness of people mistreating me so frequently, when before I could overlook it because I was just so naive.

I don't want to spend my time writing about what's wrong with the world, reinforcing that things are bad.

I also, more importantly, don't want to have to do this. I don't want to be mistreated, and don't want to have to watch people struggling for existing, and don't want people to not be able to manage to do what they want just because people aren't accepting of what people are like.

I want to not have to write, and remember the bad times. I want them to be so infrequent that its not important to do this. But, if I don't talk about the bad times, then people aren't aware of them, not living them, and I don't want to need to keep living them, and I don't want others to have to keep living them either.

I don't want to need to say that I deserve things too. I don't want to need to say that I'm not just a failure. I don't want to struggle and be punished.

But, those happen, so instead, I have to do this. I have to say, no, please stop. Let me live my life as me, instead of as who you want me to be.

Sometimes, not wanting, doesn't really matter, you're not given a choice in the matter, because what I want to do is live as an autistic person, not a shell of someone who doesn't matter to anyone.

My identity is not your joke

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

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

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

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

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