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?

Not just a brat

They scream and sob, don't follow any directions or answer any questions asked of them, maybe kick, bite, or throw things.

And people judge them. Shouldn't their parents teach them better? Shouldn't they know better than to tantrum as an adult? Why are they doing these things, it won't get them anything they want?

They are judged, while inside they're breaking out of control.

Living life in a world not made for us, we keep going, and finding ways to protect ourselves from the toxicity that is the world around us, and it is not always enough. Simple things, or complex triggers, we break. There's too much. It's too bad. And the world around us swirls out of control, while inside ourselves we ourselves do too. Things no longer make sense; thing that we already know, or that are outside trying to come in. Things no longer process right. False information, wrong information, confusion, lack of control because what is this executive functioning?

It's a mess. The world, inside, its all a mess.

And we end up screaming and sobbing in the midst of all of this.

And we hate it. Losing control isn't pleasant. Facing those moments where the world is too much, and it takes over and shuts down your ability to function is not a thing that is nice to have to face.

And its made worse by the others, the people who say we're tantruming to try to get what we want, that we're knowingly hurting people, that we're immature and shouldn't be allowed in public or at least not alone.

We try to make them less common, we try to protect ourselves.

That just doesn't mean there aren't breakthroughs.

Alexithymia

"How are you?" That dreaded question that starts too many social situations.

Or having gotten into discussions. "How do you feel about that?" or worded less formally "What do you think about this?"

I don't know. Stop expecting an answer. It's all jumbled up inside and the questions don't help. No matter how many times you ask these questions it won't make me have any more of a clue about what is going on.

Lack of a clue, that's what it's like. Things that make no sense. Things that have no need to be discussed, and trying to discuss them makes it more complicated, tries to make words where they shouldn't be, because while the ideas exist, we just communicate them by being, not by speaking. Speaking is this unnecessary confusing layer on top of how it makes sense to be. Words are this layer that are just trying to force communication in ways that are unnatural.

So instead, it's just both empty and jumbled at the same time. I don't know. I have no clue. There's nothing there. It's a void that pulls things in and takes over when I try to think about it. And at the same time its a pile of too many things, that make it impossible to sort through, because every time you sort through a few, that part falls back into the pile.

So it ends up with trying to figure out "How am I?" when "How am I?" is too confusing to answer even to myself.

Sensory Processing Disorder

It has really started to appear that people think of sensory processing disorder specifically as a disorder of hypersensitivities. While it is true that hypersensitivities are a part of SPD, they are far from the whole disorder. If you only have hypersensitive senses, you would not fall into the majority of those diagnosed with SPD, or even diagnosed with a sensory modulation disorder.

So, what is a sensory modulation disorder? Those are the cases that you'd probably think of first. Someone's senses are too sensitive. Someone's senses are not sensitive enough. Someone's senses no matter how sensitive they are always needing more input or they just feel wrong and out of their body. These people's bodies don't get the proper amount of sensory input, whether its too much, too little, or just the wrong sort.

All of three of these categories exist here. People with hypersensitive senses exist, and get diagnosed with SPD. These people are getting too much in those senses. It is overwhelming, painful, too much. These are the people who cover their ears when any sort of noise is made, or even start screaming, because its too painful to hear the other noise. They're the people who cut out tags from clothing and otherwise can't wear them. They're the people who the world is too much for.

People with hyposensitive senses exist. These people don't get enough, their bodies don't react with the level of sensory input the world gives them. They might not react to pain, and injure themselves worse because they don't realize they're hurt. They might not be wake-up-able in the morning no matter how loud of an alarm clock you give them, despite the fact that they can hear.

People who just need more sensory information exist. These people seek it out. They crave it. No matter how much you give them, they need more, more, more. They run into things, bouncing off them, and seem made of rubber, as they run off in the other direction, happy. They add the spiciest of hot sauces to every food they eat. They spin whenever given the opportunity too. They always want more.

These three basic kinds of modulation disorders; the hypersensitive, the hyposensitive, and the seeker, are straightfoward. But people aren't that straightforward. What about the person who always wants to spin but any noise they hear hurts their ears? Or the person who doesn't recognize when their name is called, wants squeezed tightly always, and seeing any sort of lights they start getting headaches? People don't always fall neatly into one category. People actually usually don't fall neatly into one category. More people fall into more than one of these three categories than only one.

To make this more complicated, as well as hypersensitive touch, and hyposensitive smell, for example. It is possible to have multiple of these in the same sense. Some items are extremely painful, others are actively seeked out is a common method of this occurring, but it doesn't have to be that simple. It can be "this touch hurts because its too much, but I crave it because without it I don't feel like I know where my body exists", or pretty much any combination you can imagine. They can occur in the same sense at different times, about different items, or at the same time, about the same items. It can present in extremely complicated ways.

However, modulation disorders aren't the only part of SPD. They're the most known type, and the most common type, but, definitely not the only type. Difficulties with discrimination between sensory input, and motor planning difficulties because of improper sensory data also occur.

Sensory discrimination disorder is, I'd guess, the least known part of sensory processing disorder, but a part that can lead to some severe impairments. It's rather getting the wrong amount of information, getting jumbled information. It's not being able to identify what direction sounds are coming from; it's seeing items as the wrong size and the wrong distance away. It's not being able to actually trust what you're sensing because it may or may not be actually true, or not being able to identify what it is that you are sensing.

Sensory discrimination disorder is about not being able to sort out information, not being able to understand the information. It can be extremely difficult to be able to understand what it is like to have this without having it because its so strange to think about someone seeing, but only being able to understand 10% of their vision, and the rest of it being nonsense, or hearing, but hearing things on the wrong side of their head, or tasting, but the food not feeling hot when its burning their mouth... its just wrong data, it being all jumbled up.

Improper sensory information also leads to movement disorders. The body not being able to do what the brain tells it to do can lead to poor motor control, inability to plan out actions, or poor muscle tone and poor balance. The body's sensory system not being able to communicate with itself, makes the body struggle with movement.

Awkward movements, injuring yourself, being unable to ride a bike, being unable to dress yourself without aid, all of these can occur with a motor disorder occurring from a sensory basis rather than any other basis. Choking too frequently on food, having the different body parts not being willing to work together when trying to do a task, again, things which occur.

Sensory Processing Disorder has all of these different components. Some people have one, a modulation disorder, discrimination disorder, or movement disorder, some have two of the three, others have all three. Again, it can combine in any way. All sorts of combinations come out, including people who have every sort of SPD, all three modulation disorders, discrimination disorder, and a movement disorder. SPD can be quite complex.

Which leads us to the other way we can split it up; there are each of our senses. In grade school we are taught there are five senses. This isn't true. There are actually more than five senses. Touch itself is more than one sense, temperature sensing, and feeling a thing just brushing against your skin both fall into "touch" when initially teaching senses, yet are completely different.

For SPD, we tend to think of 8 senses; the five you learn about in grade school, the vestibular sense, propioception, and interoception. The vestibular sense is your sense of balance and spatial orientation. It's that part of your inner ear that tells you whether you are spinning, as well as if you are falling. Propioception is the sense of your body parts knowing where neighboring body parts are. It's your joints understanding their positions, and your fingers knowing where the other parts of the fingers are and how hard to squeeze to pick something up. Both of these senses, are overlooked when describing the senses, but are used every day for interacting with the world.

Interoception is different in that its the group of sensors that tells you about your internal body. It's knowing how hungry you are, how thirsty you are, when you need to pee. It's understanding swallowing, and vomiting. Any of these senses don't necessarily work right either, the information about your internal organs stretching and contracting doesn't necessarily work any better than the external senses does.

All of these different senses, can have any of these different categories of SPD occur. Any of the senses you're used to, the ones you aren't. Things you don't think of as senses, like temperature sensing, or pain sensing. Lots of different options for very individualized descriptions of how its like for individuals.

Because that's what it is, is a very different disorder for every person who has SPD. No two people have the same symptoms. No two people can be treated the same. Every person has their own individualized needs for their own individualized traits. Two people might both have hypersensitive touch, but even then, we can't assume to treat them the same. Everything is about making people understand their bodies needs, and meet their bodies needs. And having others understand those needs and help not cause problems helps immensely there.

If you care to know the numbers used for "most" or such; They're from Sensational Kids by Lucy Jane Miller Ph.D OTR. This book is a good resource on the subject if you want to read more.

Modulation disorder

• 12% of those with sensory modulation disorder have only hyposensitivity
• 26% have only sensory seeking
• 5% have only hypersensitivity
• 14% have [only] hyposensitivity and seeking
• 15% have [only] hypersensitivity and seeking
• 5% have [only] hypersensitivity and hyposensitivity
• 25% have all three, hypersensitivity, hyposensitivity, and seeking.

(Adds up to >100% due to rounding errors)

All SPD

• 4% of those with SPD have only sensory discrimination disorder
• 4% have only a sensory based movement disorder
• 22% have only a modulation disorder
• 4% have [only] discrimination disorder and a movement disorder
• 16% have [only] a movement disorder and a modulation disorder
• 23% have [only] a modulation disorder and a discrimination disorder
• 27% have all three, a discrimination disorder, movement disorder, and modulation disorder

Layers of thoughts to words.

I've complained before about people talking about how I'm articulate. I didn't get into many of the details of what actually goes on in my head though.

Lately I've been wanting to write things. I've had a variety of topics I've wanted to describe so that others could understand better. However, having topics I want to discuss doesn't mean that I'm able to actually get through the process of even mentally getting it ready for writing.

I want to write about empathy, but I can't even have words hit paper, or computer screen about this. I know that there are ideas like how we are called not empathetic, yet others don't even bother to try to understand us; so their empathy doesn't actually extend to us, whether it is intuitive or solved through a logic puzzle. But, anything more than that is stuck, ideas not coming out. Ideas not getting to words. Ideas never getting to the point where they might even thought of being written, because I'm still attempting to figure out which of the thoughts are ideas which matter.

The thoughts don't actually have words down at that level. They don't have pictures either. They're just thoughts of thoughtiness. And in order to use them I need to identify which are relevant of all the things I know, and all the things I'm currently thinking. I get them out, convert them to words, and then have the words appear on my screen as I type.

But, the first level, of getting the thoughts to the point where I can even convert them to words; that level isn't one which allows all thoughts to pass through in general, and doesn't allow all thoughts to pass through at any given time. Even when I'm at my most communicative, I still have a majority of the things I'm thinking never actually getting through.

Then words form. Here I might have word finding difficulties, or I may not. I've found most of my word finding difficulties end up rather entertaining with what comes out when it occurs. This can take an actually meaningful amount of time. Words do not come immediately, its an actual translation process.

Sometimes, though, when words are struggling to form, I end up with things where I can get some of the words, and mostly its stuck in the idea, that has gotten to that level. That never actually is able to fully form into a coherent thought in words, because even though I know the words, the thought and words don't want to combine into one. I get a word or two. I end up, noting them down, that there is something meaningful about those words going on in my head. Or I just skip over them.

Because, if it doesn't get through the words forming step, then outside of me, you won't know its there. You might realize when I'm trying hard to come up with how to say something, but only sometimes, because much of this is just what is always going on. If it is before that step, if its something that the words didn't come together for, or if its something that didn't get through that initial phase, you won't have any clue those thoughts exist.

So, for me, I'll know about them. And I'll know how much I've left out, because they didn't get through the layers before it got to actually communicating it to someone else. But you, you won't have any clue if its there or not.

And that's why, you might not realize what is missing while I'll know how much is.

Large topics never get discussed because I can't figure out how, yet people never realize they even exist. Something as simple as asking for food might never happen because I don't know how. Answering questions, simple, complex, all over the place, people think they know so much more than they do, simply because the ideas have not left my head and yet people assume they know what is going on.

Because, what has left is easily understood, yet, what hasn't, they've not heard and they're private to me, and those who've learned them via behaviors rather than listening to only words.

Acceptance

Acceptance is about taking me seriously when I say that I am the way I am. Acceptance is following through with your actions.

It's not arguing when I say the thumping of the bass is making causing a pounding headache and making it so I cannot think. It's also going and asking for it to be turned down, when I cannot do so, because of acknowledging my symptoms.

It's listening when I'm using an AAC app, and responding to me, rather than ignoring me because I'm not speaking, or telling me that I'm verbal and should be speaking.

It's not pushing me to answer quickly when I'm struggling to respond. And it's giving me time to adapt to changes. Because just knowing those symptoms doesn't help if you still push and I still freeze, shutdown, and cannot function, because everything is too much.

It's listening to me. Learning from me.

It's treating me like an equal.

It's not forcing things on any person that they are not okay with.

Acceptance is listening to me about how my autism is, listening to autismdoggirl about hers, and not stereotyping either of us, or expecting either of us to be like each other, or like anyone else you've met with autism. We're individuals. We're also autistic.

It's is once listening, taking what you've heard into account. When you've heard that I have issues with salt, providing food with less salt if you're providing food.

Acceptance is not being afraid when you've heard the word "autistic", and instead getting to know me.

It's letting me have needs and letting me be me.

Acceptance is bothering to think, bothering to remember, and bothering to treat us as individuals.

Don't be afraid to think.

We're not scary once you listen.

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

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

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

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

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

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

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

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

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

Help us have society listen.

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

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

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

The empty mind

The empty mind of overload overtakes, causing thoughts to run and hide. One after another things I want to say or do get lost; things I need to do get forgotten. The empty mind overtakes.

What would it be like, to be able to put thoughts down on paper? What thoughts are these that I am struggling to pull together? I know they're there. I know I have ideas I want to share. Instead, they're lost, again, as the only thing I hear is louder and louder noises, and the only things I remember are the fact that there is supposed to be thoughts.

What would it be like if I didn't forget what I was doing, because the empty mind has said that its not there. That there's only fog, and blank, and noise? How much more of what I want to do would get done? How much faster would I be able to do?

What would it be like, if instead of struggling through a fog to complete things that I know how to do, because of headaches and pain, hearing everything around me, and things feeling wrong on my skin, if the fog just lifted? What would it be like to not be alone in a fog, with the rest of the world out there, separated, and needing effort just to interact.

What would it be like?

Instead, the empty mind overtakes once more, thoughts are lost, things left undone, and another struggle to communicate commences.

I am not a burden (Day of Mourning 2014)

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

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

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

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

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

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

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

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

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

It's not okay.

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

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

It's not okay.

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

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

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

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

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

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

I'm sorry it had to happen to you.

Weighted Blankets

Weighted blankets are really powerful things. Maybe people have heard of Temple Grandin's squeeze machine (if you haven't, its quite cool), or maybe not, but very frequently deep pressure is something that regulates our sensory systems, and resets our bodies.

For those of us who are hypersensitive, for many of us, deep pressure is the one thing that resets us, or at least is the one that does it best. Our bodies hate most senses, they're attacks on our systems, but deep pressure, instead of being attack, calms us, protects us, and makes us feel safe. One of the things that is quite interesting about deep pressure is that it frequently helps those who are hyposensitive or seeking as well, because in both of those cases, they require increased sensory input, and this provides the increased sensory input. Deep pressure is the only area where all three of the sensory modulation areas seem to agree in enough cases that its worth defaulting to assuming it'll likely work; giving someone deep pressure is more likely than not to help them regulate better.

Deep pressure is the squeezing of strong hugs, the compression of joints when you jump, the weight of lying under a mattress. And this feeling, helps many on the autistic spectrum, with sensory processing disorder, with anxiety disorders, and even without any diagnoses, calm down, think better, sleep better, and generally function better.

For some of us, this is necessary, things that calm our sensory systems are the only way to be able to manage to get through daily life activities. For many on the autistic spectrum, sleep is a huge challenge; the same thing holds here.

So we get back to weighted blankets. Weighted blankets are, as it sounds like, blankets that are weighted instead of just being fabric, while still being functional as a blanket rather than stiff or uncomfortable. Sleeping with these blankets allows those of us who need sensory calming to sleep better; I know of multiple cases of melatonin being stopped after a weighted blanket was used while before it was required for sleep. It also allows our days to function better because we're starting from a more de-escalated state sensory-wise at the beginning of the day. Throughout the day, they can be used as a blanket might, wrapping up on a couch while working. Again, it causes reduction of sensory-overload even before it hits, holding it off or even preventing it if it reduces it enough. If overload, meltdowns, and shutdowns occur, they tend to be shorter if the blanket is provided, because it gives the sensory needs without someone constantly worrying about providing a type of input that can be difficult for people to provide for themselves or others for anything more than a very short period of time.

My weighted blanket is one of the largest coping skills I use. If I go somewhere for a weekend, I deal with carrying around a 24 lb queen size blanket. It's not convenient but its worth it. I frequently can write when I otherwise wouldn't be able to only because of my blanket. It helps me through many overloads. It helps drastically with my sleep. It's a very valuable tool, enough that I'm working on getting another blanket.

The downside of weighted blankets is that most places that sell them are expensive. However, the other option to buying one is making one. What I'd done for mine was make it. If you sew, have a sewing machine and have time free, its not bad to make one, just time consuming

The method I'd used might not be the most efficient at times; but it seems to have generally been a good one. The basic idea is that that you want evenly weighted pockets, all about 4 inches x 4 inches (that's been found to be the right size), that add up to the proper weight. The proper weight will generally be 10%+1 lb of the body weight of the person who will be using the blanket.

Instructions

1. Determine size and weight

   I wanted a blanket that I could both completely wrap around me and would work for two people sleeping. I thus decided I wanted a blanket about 55-60 inches wide. As my boyfriend is 6'4", I decided to make a 80" long blanket. For a 43" wide blanket (twin size) its recommended to use 10% of body-weight + 1 pound. Because this is larger, I'll use an increased weight, probably about 23 pounds instead of 15 pounds.

2. Gather equipment

   In order to make this blanket it required I borrowed things such as a sewing machine. Necessary equipment includes

   • Sewing machine
   • Measuring tape, pins and other sewing supplies
   • Kitchen scale for measuring weights
   • Butter knife
   • Funnel (can just be paper)
   • 2 cups for measuring plastic in and pouring into that first cup.
   • Tweezers or pliers
3. Gather supplies

   In order to make my blanket, I needed to gather up supplies to make it out of, including trying to minimize prices. Optimal design seemed to include having four layers of fabric, to increase durability, the outer shell being removable for easier cleaning, and weighting with poly-pellets.

   • Poly Pellets for weight

     Online research suggests that poly pellets tend to work best if you don't mind the increased bulk in using plastic. This wasn't an issue for me and durability matters much more to me than how bulky it is anyways. You can get poly pellets at craft stores. If you care about price, don't. You can get it drastically cheaper on ebay. I ordered 30 pounds of plastic in two 15 pound increments for $2/lb shipped.

     Some people suggest using beans, be aware that any food product can get moldy, and has major issues being washed (as dried food products rehydrate when put in water). Either poly pellets or aquarium rocks that you are sure won't hold water if its washed tend to be your best bet for a filling material - poly pellets would be my suggestion, as the increased bulk is actually something that is nice to me, and is not nearly as large as people make it out to be.

   • Fabric

     You want durable and comfortable. If you don't get distracted like me, a duvet cover for it is a good idea, and allows you to only worry about durable for what you are building the pellets into. If you don't want to, or expect to, manage that, then plan on that. I used sheets for my fabric. The convenience of sheets is very high.

4. Measure fabric

   While nominally I had 60" wide fabric, one queen sheet, and two full sheets, truthfully, the 60" fabric was actually 69" wide. This was far more over its nonimal size than I expected, and its relevant to know that now.

5. Wash fabric

   If you prewash fabric then it'll shrink before you make the blanket rather than shrink unevenly after.

6. Cut and hem fabric

   These are large peices of fabric. In order to cut them straight I used the method described here. I found that using a small pair of pilars worked drastically better than tweezers - it was easier to pull straight, and thus I was able to pull out longer strands. Ripping the fabric also works.

7. Sew two peices of fabric on 3 edges, leaving one open for filling.

   Be careful while doing this that your fabric lines up. In my case, it one of the sides wasn't actually straight - I left that side open so I could patch it at the end.

8. Flip the fabric inside out into a giant pillow-case like thing
9. Measure and mark every 4 inches down the sewn bottom
10. Sew columns

    For each column, first measure out and mark a few point on the column to help you keep it straight, then sew using the sewing machine. Because I was filling mine from the side, I had 20 of these.

11. Calculate wight per pocket.

    4"x4" pockets are recommended. Each one of these should have equal weight. Calculate the number of pockets your blanket will have (mine will have 340 pockets), and divide the weight you want by the number of pockets. I'm ending up making about a 25 lb blanket because it is so large, and will put 34 grams of plastic in each pocket.

12. Measure plastic and put it in each row.

    Measure equal weights of plastic and put it in the bottom of each row. Even though you can do it without a funnel, use the funnel, it both increases the speed to mess ratio, and is a useful marker of how far along the row you've gotten.

13. Pin the pockets shut

    Measure 4 inches for the height of the pocket, push all the plastic down (with the butter knife), and pin it shut.

14. Sew along making those pockets

    This is a very slow process. This is also where a butter knife comes in handy. In order to not have the plastic pellets get caught and stop the sewing machine, you need to kepe them out of the way. The best way I found was to go pocket by pocket and use the flat side of a butter knife to push them down into the very bottom for each pocket. When you inevitably get a pellet in the foot of the sewing machine, pick it out with something small - likely the tweezers or piliers you used earlier.

    For the first two or three rows its easier to pass the weighted section through the sewing machine. By the time you're half done its far easier for the weighted section to be supported next to the sewing machine.

15. Repeat steps 12 through 14 for each row.

    If you want to fill the last row you can. Do be aware though, that its far more likely than the other rows to cause a broken needle if you didn't give sufficient room for the seam. I started filling the last row, then broke the needle, and gave up on it.

(btw, for just linking to the instructions and not scrolling down, if you're saving a link or such, click here)

A shower

The water turns on, and you wait for it to heat up while you do your exercises for your ankle. Counting 20 of them. That's how long it takes to get the water to warm, is twenty times onto your toes and back, and doing that helps with your ankle strength. Then you step in.

You were careful to bundle your hair first. That way your hair could stay as dry as possible. But without a good stream of water you have to be careful still. You don't want to let your hair get wet. Then you have to deal with it drying. So you are careful about where you stand, and where the shower head points trying to be as careful as possible.

Lots of little beads of water, hitting your skin. You feel every one of them. They're very uneven. You're very aware of every bit of how uneven the temperature of your skin is too. It's not comfortable. The shower pressure knob has fallen down again, and you turn it up. It's not as bad at full pressure, there are more little beads of water now. It's less uneven. It doesn't feel so wrong.

Even closed the shampoo bottles are noticeable, and the smell is getting to you, especially combined with the heat. If you turned the heat down, your entire body would be in pain, both in terms of muscles tensing into spasms, and in terms of the beads feeling like little knives cutting into your skin. So instead, you let your head rest against the side of the shower, as you become more light headed, the smell overtaking you, making you more and more nauseous and your head start to pound.

But, you need to get clean. So, you force yourself up, and put some of the body wash in your hand. This is another place you're careful, only getting the hypoallergenic stuff. Other things the smells stick around afterwards, and the feeling of the shower that lasts after is increased. But, you wash yourself, as quickly as you can, carefully holding yourself up. You need to be careful that you're fast, but at the same time, you need to be careful not to fall over with the nausea, lightheadedness, and vertigo, that has set in. Rinse. The pressure is more noticeable the longer you're in here. You need to get out, but if you're not clean the entire thing has been a waste. You're almost done. Make sure to get through it. Face, okay, clean your face. Because washing your face in the sink is even harder than this. Any water from the shower falling on your face feels like an attack, so carefully control it with your hands. Get your face wet, wash your face with something carefully unscented. Go to rinse, and accidentally put your face in the stream, it hurts, it feels like your eyes are being attacked. It's okay, it's okay. Make sure your hands are rinsed, and splash your face with your hands, over and over and over again. And after your are sure its clean of any of the soap-stuff another three time. Eyes still won't open because they don't trust it. Just carefully clear the eyes with water and your hands, show them its okay. Open your eyes. It's fine.

By this time you're wobbling, you don't trust yourself to stand. Are you clean yet? Finish quickly if not. Get out as fast as you can. Grab your robe and put it on. Trying to actively dry would be like ripping your skin off, so instead you have to make due with drying with a robe and time.

Go to walk upstairs, but now you've lost the ability to see. It's been too much. You managed to get out without jumping out in order to vomit this time. That's not always been the case. But that doesn't mean you got out without other...challenges? Okay, you want to get up to your bed, because you feel like you're going to vomit, you can barely understand what ground is, and now you can't see. So...feel around in front of you, you know your house. Find the railing to the stairs. Hold careful as you walk up the stairs. The railing changes most of the way up the stairs. Try to figure out how to deal, and just crawl the way up the stairs then. You make it. Get back up, and feel the way to your room. Find your bed, and fall onto it. Head pounding, you feel safe now.

You have somewhere you can just dry now. You can wait it out. You can let your head stop spinning, and stop pounding and go back to normal. You can let your stomach calm down. You can let your sight return to normal. Pull your blanket over you, despite the risk of it getting wet. Now, its just the time to get over all of this. Now its just recovery.

Vision comes back reasonably quickly. The others, take a while. If you try to rush drying then it feels like you're attacking yourself. If you try to get dressed before you're done drying, then your clothes don't stop attacking you even after you're done drying. But its better within the hour.

Except, there are still aftermaths. Your skin still feels wrong. It feels almost disconnected and overconnected at the same time. It feels too rough. Every touch that is made you feel for so long after its made that you don't even realize when its stops because it just keeps going and going and going. And its not pleasant touch, its that creepy crawly this is a bug crawling on your skin and its wrong, except multiplied. It's the feeling the bad part of tickling with out any of the parts that make you laugh, and it doesn't stop, it just keeps going and going and going, no matter what is touched. And then there's pain, pain from touching simple objects. Pain from touching something as simple as paper. Discomfort from touching the air. The only way to keep is under control at all is constant motion. Then those pains and discomforts and the creepy crawlies of every last hair, and cloth, and misguided object, and thing you bumped into, are overwhelmed to some degree.

Things aren't always easy. But, its what's needed.

Being articulate...

You're so articulate. You communicate so well.

People see these as compliments. They are compliments. They don't see the other side of them though, the struggle, the fact that, while being articulate, that's not always there, its only about what can be communicated about. They don't see that they only see what gets out, not what stays in.

People can realize that someone who's nonverbal has a challenge communicating to the world. They at least frequently don't understand what it is, or how it feels like, but that there is one. People tend to be very sight-centric and voice-centric, and push everything around those two things, so when you cannot speak, you are not communicating. In truth, someone who isn't speaking might be communicating, and someone who is speaking, also struggles.

You read my posts explaining how I am, I'm articulate. I communicate well. That's what people keep telling me.

But what about when people keep asking what I want to do, and even if I know something, its such an undefined concept in my mind, I can't figure out how to speak it. And I try to, and it gets confused and scrambled, and I get unable to understand what's going on. And people around me start getting impatient, wanting an answer, because I'm taking a long time to answer a simple question. But its not a simple question, its something that takes figuring out an answer, sorting through the details, converting it into words, filtering the words to speech, and talking. And its confusing to go through that when its forced instead of natural. And then eventually, I probably say "I don't know", because at that point I have no clue, even if I had an idea in the first place. And it likely is quiet, because my voice won't let me speak very loud.

That's fine. That's just not knowing what I want to do. But its going through and trying to deal with this mental stages of communication, that I have to go through in order to communicate when its not natural. I deal with both, natural, when I just know what to do, and unnatural, where I have to concentrate and figure out how to convert thoughts into words, and it takes time.

People usually only see the former. They don't believe the latter exists.

They don't see me crying in bed, trying to explain things, but it just being so difficult to deal with that I'm withdrawing, and crying, because crying makes it easier to cope.

They don't see week after week of trying to get the same idea across, and the problem being me, not being able to get the ideas that make so much sense in my head, to come out in words that make sense.

They don't see me explaining how to do things to people, and leaving out half the explanation as I'm mentally sorting through everything.

They don't see, that every time I go to a doctor, I end up with not having the doctor understand some of my symptoms, because I can't get them explained in words.

Words are hard. Using them, converting to them, struggling to get ideas out, when only a small fraction of the idea is coming every time you speak.

But then, it is enough. You're called articulate. Praised on how well you communicate. Told you can't understand what its like to struggle with communicating with speech.

And you go back, and try again. Maybe eventually, ideas will get through enough for others to understand. Maybe eventually, words will find their way, and it won't be stuck with needing to cling instead of use words because words are too confusing and too overwhelming. Maybe eventually, the words that come out will be ones that are understood by those around you. Maybe eventually.

Until then, its time to just keep trying to figure out ways to get thoughts onto the page, if its repeating the ideas, if its writing them, or if its clinging when needed.

And hoping, that maybe people will understand, that you can both be articulate, and struggle at the same time.