actuallydd

I have access to speech at least 85% of the time, but that doesn’t mean that during those times I am as verbal as a person without autism. Here are some examples of having access to speech while having speech trouble:

I have access to automatic speech, but not conscious speech.

For example I might see a dog and say, “Puppy!”, but by the time I’ve gone through I want to pat the dog, to pat the dog you have to ask the owner, the owner is over there, I should say please, I want to say to the person over there “Can I pet your dog please?” I can’t figure out how to get the words to come out of my mouth.

I have access to prompted speech, but not unprompted speech.

For example, if you ask me what book I am reading, I might be able to tell you it's Bridge to Terabithia, and it’s good, but if I see you sitting across the room and want to tell you what I’m reading about I will not be able to initiate the conversation.

I have access to planned out speech, but not spontaneous speech.

I have to memorize what I’m going to say and how my mouth is going to move to say it, before I say it.

I have access to speech but it’s mentally exhausting. 

OR

I have access to speech but it’s physically exhausting.

OR

I have access to speech but it’s physically painful.

OR

I have access to speech but I have to attempt talking many times before the words actually come out of my mouth.

I have access to speech, but only scripted speech.

This can be because I don’t have access to new words, or because I don’t have time to create new words and log them and run them through filters (not even necessarily filters of “is this polite” but filters of “is this actually true”) while carrying on a conversation, or because other people’s words are more comfortable then my own.

Most of what I say is a patchwork quilt of scripts pulled out of the scrap bag of my brain and hemmed together, actually.

Scripted speech isn’t necessarily bad or noncommunicative, and there are different levels of scriptedness from “kneejerk response” (“How are you? Fine”) to “looking for scripts that fit what I’m trying to say and splicing them together”. (I sometimes create scripts in advance specially for specific conversations with specific people. That is definitely not noncommunicative.)

I have access to speech, but not the words I want to say.

“Make no because the thing is curtaining” I say, unable to do grammar entirely, hoping someone will turn off the light. When I looked for pictures of light in my brain, I found a picture of light filtering through curtains, and “make no” means “make not exist”. Communicative, but damn hard to understand. 

A side note: it is cruel to make someone in this state use proper grammar or polite phrasing before you acknowledge what they have said.

I have access to speech, but not communication.

This can contain some or none of things above, and it’s hard to talk well about. What I can say is:

-A lot of it was taught to me by therapy

-For a long time, and still now sometimes, people labled uncommunication as real communication and real communication as uncommunication

-Just because someone does things that look communicative that aren’t, doesn’t mean they don’t do things that are communicative, and doesn’t mean you shouldn’t try to figure out how they communicate, and listen.

Outrageously Accessible #01

“Who says being accessible can’t be glamorous!” 

a stylish accessible theme! the goal was to make an accessible theme that looked like a regular theme and could be customized like one.

live preview + code

special thanks to @espoirthemes for helping me with some troubleshooting

features:

  • 500px/400px posts
  • left or right sidebar
  • left or right side images
  • optional bold/italics + color
  • custom favicon
  • optional borders, and choice over what does and doesn’t have them!
  • choice between arial and verdana
  • 14px/15px font! everything changes size not just the body. except for one thing, the three top links due to a thing with 15px verdana
  • optional link underline
  • optional custom nav title
  • up to 5 links in the dropdown menu!
  • sidebar image title, plus works as a home button

please, let me know if there are any bugs, you can shoot me an ask.

id also really appreciate it if you liked this or reblogged if you’re considering using.

if you’re interested, here’s what base i used!

edit: here’s the 2nd theme that i’ve made, it’s a stripped down version of this one if you don’t need as many features, check it out. #02

“We were talking about you moving to the institution.”


“Yes, I remember.”


“Tell me what you remember about going there.”


“I remember one part of it very well.  I don’t remember walking in there.  I was just a little girl and i’m not sure I knew what was happening until I was in the admission office.  I was standing in front of the desk beside a social worker that I didn’t know very well and they were talking about how I was going to live there.  The social worker had given a form to the woman behind the desk who read it very carefully. She ketpt looking at me and shaking her head.  I knew that she was reading about me breaking plates.  I wanted to tell her that it wasn’t my fault.  But I knew better.  I knew that I should just stand there.  Then it happened…” She stopped as if considering going on.  I knew better than to prod.  "A man came in.  He worked in an office there.  He stopped at the desk and sai dto the woman, `What’s its name?’  The woman told him that my name was Ella.  He told her that Ela was too pretty a name for someone like me.  He looked at me and then said, ‘Call it Noreen.’  That has been my name ever since.

— 

Dave Hingsburger, I Witness: History and a Person with a Developmental Disability

This is how much of an unperson you are when people stick you under the umbrella of retard.  I frequently try to get across how people think of you when they call you that but this gets it across better than anything I’ve ever said: You don’t even necessarily get to keep the most basic marker of your identity in our culture – your name.

Also if you can get your hands on this book it contains a lot of important information.  Both from Noreen’s perspective, and Dave’s – Dave describes things like how he used to write behavior programs involving skin shock so severe it left burn marks on people’s skin: JRC is not the only place that happens at.

Some people can’t bring themselves to accept or believe other peoples’ experiences when those experiences are different from their own. They will try to force you into a story that doesn’t fit you. There is nothing you can do to convince these people.  Don’t let anyone deny your experiences or your story. Turn away from the deniers and remind yourself, “My experience is real and valid. I own my stories. There are many ways to be. This is my way.”

Some people can’t bring themselves to accept or believe other peoples’ experiences when those experiences are different from their own. They will try to force you into a story that doesn’t fit you. There is nothing you can do to convince these people.

Don’t let anyone deny your experiences or your story. Turn away from the accusers and remind yourself, “My experience is real and valid. I own my stories. There are many ways to be. This is my way.”

Autistic Questions!!

1. What are your current special interests if any?

2. What have been some of your past special interests?

3. What is guaranteed to make you overload/shutdown?

4. What is guaranteed to make you happy stim?

5. What are some of your happy stims?

6. What are your favourite stims/things to stim with?

7. What are your favourite textures?

8. What are your favourite tastes?

9. What are your favourite sounds?

10. What are your favourite smells?

11. What are your favourite visuals/things to look at?

12. What are your favourite things about being autistic?

13. Is there anything you don’t like about being autistic?

14. When did you first figure out or learn you were autistic?

15. If you’re non verbal, what method of communication do you prefer?

"Violent Behavior"

They never call restraint “violent behavior”.
They call flicking a paper clip “violent behavior”. They call snapping a pencil “violent behavior”.
They don’t call throwing a kid to the floor “violent”.
Our breaking is less important than that of a pencil.
Because, you cannot hurt an unperson. You cannot be violent to someone who doesn’t exist.
Because, when you are crazy, autistic, disabled, to exist in space is violent. To exist in space becomes an act of war.

Listening to folks whose speech is unusual

This happens a lot, especially for autistic folks with a particular cognitive configuration:

  • An autistic person says something in the most straightforward way they can think of
  • But it’s far from the way most people say it
  • And it doesn’t occur to other people that they’re being direct
  • It’s seen as either the autistic person not understanding something, being presumptuous, or being hilarious

For instance:

  • Alice and Nancy walk into a cafeteria, which is overflowing with different food options
  • Alice (wanting a particular kind of food and not knowing how to find it): Where’s the food?
  • Nancy: Umm, everywhere?

In this example, Nancy thought Alice was just being annoying or funny and didn’t understand what she was trying to communicate. This would have been better:

  • Alice: Where’s the food?
  • Nancy: Which food do you mean?
  • Alice: Food!
  • Nancy: Are you looking for something in particular?
  • Alice: Food!
  • Nancy: Your favorite food?
  • Alice: My favorite food! Chocolate pie! Burger?
  • Nancy: They have both of those things. We will see them when we go through the line.

Or: 

  • Nathan is discussing politics with his son, Arthur
  • Nathan: What does the president do?
  • Arthur: Important stuff. Not like you do.
  • Nathan: You don’t think what I do is important?!
  • (Nathan, telling the story later, uses it as an example of how kids have no filter)
  • What Arthur actually meant was along the lines of “The president is a public figure with a lot of power, and everyone pays a lot of attention to what he says; that’s really different from how other people’s jobs work”.

This would have been better:

  • Arthur: Important stuff. Not like you do.
  • Nathan: What kind of important stuff?
  • Arthur: My fellow Americans…
  • Nathan: Important like speeches?
  • Arthur: Yes. Speeches on TV.
  • Nathan: I don’t make speeches on TV.
  • Arthur: You go to the office. 
  • etc etc

tl; dr: When autistic people communicate things, we often sound strange. Don’t assume that we’re joking or being dismissive or cute just because the way we phrase things is very different from what would feel natural to you. Listen to what we’re actually saying.

[Image description: A purple, burgundy, and cream coloured watercolor background with a pinky cream coloured ribbon. Type inside the ribbon matches the background and reads, “In a world dark with pity, fear, and hatred for people with disabilities, celebrations gets people’s attention. Celebration is radical. Amythest Schaber.]

People liked this bit from my Celebration of Autism piece, so I made it a thing.

what "auditory and visual processing problems" means

When you hear “auditory and visual processing problems” you may think of sensory overload, of sensory sensitivities, of everything being seen as extra loud and extra bright. This can be a part of it, but it is not all it is. Here are other things that can also be part of auditory and visual processing problems:

- everything seeming to go in slow motion

- everything seeming to go in fast-forward

- everything seeming surreal, unreal, distorted

- instead of seeing people and objects, seeing shapes and colors and patterns of motion and having to piece them together, which can take time and energy and be hard or impossible

- people talking sounding like the adults in Charlie Brown

- everything being blurry and confused, as if far away or underwater

- being unable to tell where sounds are coming from, which can, among other things, make it very hard to tell who is speaking

- sounds and people’s voices fading in and out

- having trouble telling sounds from voices

- processing delay: you accidentally knock a book off a shelf and don’t hear the sound of it hitting the ground until five seconds or twenty seconds or three minutes later

All of these things can vary day to day, hour to hour, minute to minute. They can present as someone seeming confused and disoriented and can be misinterpreted as someone being drunk or high or sleep deprived, shy and hesitant to speak, scared or defiant and reluctant to follow instructions, rude, unable to understand the wording of instructions, or “off in their own little world” and not paying attention.

Feel free to add more!

Stress makes everything harder

Autistic people are autistic all the time. Sometimes some difficulties fade into the background, then come back out again when someone is particularly stressed out. This is true across the board for sensory issues, communication issues, movement, and all kinds of other things. (This is also true for people with any other kind of disability).

The intermittent nature of some apparent difficulties can sometimes lead to them being misinterpreted as psychosomatic. They’re not. Everyone, autistic or not, has more trouble doing things that are hard for them when they’re experiencing significant stress. Some things are particularly hard for autistic people, and those things also get harder with stress.

This is how it actually works:

  • Doing the thing always takes a lot of effort
  • Putting in all that effort has become second nature
  • When you’re not exceptionally stressed, you might not notice the effort it takes consciously
  • When you *are* really stressed, you don’t have energy to do the thing in the ways you normally can
  • So you end up having more trouble than usual, and probably looking a lot more conspicuously disabled than usual

For instance, with motor issues:

  • For those of us with motor difficulties, moving smoothly and accurately takes more effort than it does for most people
  • This can become second nature, to the point that we don’t consciously notice how difficult it is
  • But it’s still there
  • And when you’re really stressed or overwhelmed, you may not have the energy to make yourself move accurately
  • So things you can normally do (eg: handwriting, not walking into walls, picking up objects, pouring water) might become awkward or impossible
  • That doesn’t mean you’re faking or somehow doing it on purpose
  • It just means that things are harder when you’re stressed

Or with sensory issues:

  • Living with sensory sensitivities means that a lot of things hurt
  • For the sake of doing things anyway, a lot of us build up a high pain tolerance
  • To the point that we may no longer consciously process things as pain even though they hurt
  • Ignoring pain takes a lot of energy
  • When we’re really stressed, we may not have the energy to ignore pain
  • And things we normally tolerate can be experienced as overloading or intolerably painful
  • That doesn’t mean we’re faking the pain to avoid something stressful, or that we’re somehow bringing it on ourselves.
  • It just means that everything is harder under stress, including tolerating pain

Or with communication:

  • Communication can be hard for a lot of us in varying ways
  • For some of us, being able to speak requires juggling a lot of things that are automatic for most people
  • Or being able to use words at all, including typing
  • For some of us, that’s true of understanding people when they talk to us
  • Or of knowing what words are at all
  • If someone can’t talk, understand or use words under stress, it doesn’t mean that they’re somehow faking it to avoid a difficult situation
  • It means that communication is hard, and stress makes everything harder

tl;dr Stress makes everything harder. For people with disabilities, that includes disability-related things, including things that we don’t normally seem to have trouble with. Sometimes we’re wrongly assumed to be doing on purpose or faking to avoid a difficult situation; it should actually be seen as an involuntary, normal, and expected physiological response to stress.

On assumptions of ability.

Don’t tell me what I can’t do. 

If I can’t do something I will tell you. 

Don’t tell me what I can do.

There are things that I can do with relative ease one day but struggle with immensely the next. My abilities fluctuate. This is true of all people. It is just more obvious in my case. 

I know my limits. 

Sometimes I push them because I’ve determined that the thing I am doing is worth the recovery time. This is okay. You don’t need to intervene or save me from myself. 

Don’t make assumptions. 

Don’t make decisions on my behalf without my permission. 

I make my own decisions. It may take me some more time to get there. I may ask you to phrase things more simply, or differently, or to offer only one option at a time, but I will decide for myself. 

If I decide to defer to someone else’s decision that is a decision in itself. 

Please do believe that I know myself, my limits, and my abilities best. 

Please do trust me to tell you when I need help. 

Please do respect my decisions.

A long, sad story about the attitudes that Autism Speaks propagates, and an encounter with a spokesperson "autism dad"

I’m still working on my post covering the Vancouver ASAN protest against the Autism Speaks walk, but here is the story of one of the “autism parents” we encountered. The interaction here was definitely the worst and most disheartening part of the day but I feel like it’s really important to talk about.

We were well into the morning, handing out flyers and pamphlets to the masses of families in “Team Aiden” and “Team Emily” shirts, answering questions and talking to anyone who stopped to look at our signage. A man and his adult son approached us and began chatting up our chapter leader, Alanna.

Marvin leaned down and quietly identified the man as the person who gave the fear/hope/cure speech on the stage prior to the walk. His motive was clear to Marvin and me from his hello— he was not there to listen. I was, though. I listened closely as I smiled and passed out flyers, and during breaks in the stream of people I watched the interaction between Alanna and the “autism dad” with growing distaste. Eventually I began taking notes.

Keep reading

I am quite like the desktop computer that lived in the sunroom when I was a kid.

It was slow. You had to press the power button a certain way to get it to turn on. Then you had to wait. To me it felt like waiting a million years. I had things to do on that computer! I couldn’t sit around waiting for it!

As soon as the desktop appeared on the screen, I would start clicking. Open a word document. Open Internet Explorer. Open Roller Coaster Tycoon. The computer would do none of those things. It would just hum and whir and get very hot. Then it would freeze. Time to reboot it and start over.

Later my dad explained to me that if I told the computer to do too many big things like that at the same time, it would just take longer. The computer wasn’t really ready to do things for at least a minute after the desktop appeared.

But I was impatient. I would click and click and click the symbol for Lego Harry Potter thinking if I told the computer enough times it would do it Later I learned that doing this just confuses the computer.

That’s me. I am that computer. Slow to start, slow to be ready to do things, incapable of processing too many commands at once. Stressed by being told to do the same thing over and over again before I even have the chance to attempt it.

The program is not responding.

ctrl+alt+del

Restart.

Try again later.

Stimming is not just a coping mechanism

I see this defense of stimming a lot:

  • It’s wrong to train autistic people not to stim
  • They use it to compensate for overload
  • Or to focus
  • Or to compensate for other problems
  • Or to express distress

All of this is true. But it also misses the point. Stimming isn’t just a coping mechanism. It’s much more than that. Stimming is a positive part of autistic experience, not an unfortunate-but-functionally-important thing we have to do.

Imagine if facial expressions and tones of voice were considered wrong, and someone defended them this way:

  • It is wrong to teach children to adopt a flat affect
  • Children need to be able to frown
  • Children need to be able to indicate through the tone of their voice that something is wrong
  • Children need to be able to cry. That’s a way of coping with pain and overload

All of those things are true. But if that’s all defenders of tone and facial expression said, it would be horribly misleading. Body language and tones are more than that, and they are good.

Stimming is like that too.

  • Stimming is not just necessary. It is also natural, and good
  • Flapping in response to a nice texture is not fundamentally different from smiling in response to the smell of a flower
  • Rocking in response to someone saying something offensive is not fundamentally different from frowning in response to a slur
  • It is ok for autistic people to have autistic body language
“Special education” is neither special nor education.