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.