Thursday, April 24, 2014

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.

Wednesday, April 23, 2014


"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.

Friday, April 11, 2014

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)

  • 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

Tuesday, April 8, 2014

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.

Monday, April 7, 2014


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.