Monday, June 29, 2015

Person-first vs Identity-first language

I'm told I'm rude, as I request my own language. "Don't be rude to me", as if not allowing someone call me whatever they want, not listening to my preferences, is rude. As if they are not the one being rude, overriding me; coming into my space to tell me I'm wrong; speaking out over and over about how it doesn't matter what an autistic person says, you aren't allowed to say Autistic, it is such a bad word.

Don't be rude. Because it is rude for me to request you not to tell me to call myself a person with autism, but it is not rude for you to tell me I must do so. Because it is rude for me to request for you to call me autistic, but not for you to tell me how to speak about myself.

It is my say how I speak about myself. It is also my say how I wish to be spoken about. If I ask you to call me autistic, and you refuse, then that is rejecting my requests for my own identity. If the community asks you to call us autistic, and you reject it, then that is rejecting ours.

It is not the decision of the parent, therapist, teacher, or general neurotypical community, how I should view myself. It is my decision about if I see myself as autistic, a person with autism. I say I'm autistic. You should listen to that.

In particular, I extend that even. I view it as, if you make a request like "not autistic, person with autism" or call me a "person with autism" when you know I prefer autistic, I find it insulting. I find it not "person first", but demeaning. For, we don't speak about a person with baldness - we speak about bald people. We speak about Americans, females, tall people. The only times we bring out the "with Foo" are when we want to separate it from the person because we view it as negative.

I'm autistic. I've been autistic my entire life. No matter what I do, I am still autistic. It is an intrinsic part of me; a part with impairments, a part that is disabling, but a part of me that cannot be removed. And when you are changing the language from how you usually speak, when you are invoking the "with Foo", that is against the normal usage, and is only invoked when something is so negative we need to change how we speak, you're doing that with something that is part of me. You're saying it is bad.

And by doing so you are saying part of me is bad.

I'm impaired, but I'm not lesser. I'm not wrong. I'm not bad because I'm autistic.

And when you override my language preferences, you are saying, even more, I'm not a person first. Because I'm not a person who gets the ability to choose the ability how to speak about themselves; I'm someone who doesn't have that ability, only those who are "normal" get to do that.

Thursday, June 18, 2015

I am proud

I am proud. Not because of thinking I'm better than you, but because I've seen what some of us have gone through.

I've seen the struggles of autistic people because of being autistic, fighting not themselves, not their bodies, but the world, and society, and winning. Making progress, making it better and doing it despite the fact that society is telling them they can't.

So I have to be proud for them. They're doing drastic things, hard things.

I only really became part of the community four years ago, and in these four years, I've seen changes happening. I've seen progress being made, things getting better. And it's not getting better because of time; it's getting better because of lots of hard work by autistic people fighting in many cases even when their disability would "get in the way". It's people going out in situations where they are facing sensory overload in order to talk to people about changing laws. It's people finding ways to be listened to when their voices are being denied because they're computerized voices. It's people doing thing, even when it's hard. And it's progress happening.

We need to be proud of how much has happened. And of what people have done.

And yet, we need to think of those who are being denied these chances. We need to think of those who are hiding who they are, being told they're someone else. We need to help them.

We need to be able to be proud of who we are just for who we are. We need to say "I can be me, I am me". Because not everyone can say that yet.

We need to show them we can and see what we can do to make their lives easier. Whether that just means living openly, speaking out, or seeing what we can do in our own small fields, we need to help make it better for everyone else.

I need to look at the children being told in schools they can't stim. The children having their hands held down. The children being told they need to look people in the eyes and that eye contact is more important than learning academic material.

I need to speak up for them; work on changing academic environments, and do what I can to work with them, stimming, and just speaking to individuals, showing, that I'm an effective adult who's gone to college, and yet, is visibly autistic while I'm working with them. That hiding my symptoms isn't what makes me "functional"; that being able to teach children is far more "functional" than "I can look you in the eyes".

I need to show the children that it's okay to be me, so that they can be less afraid growing up of being who they are. If just speaking out to them about who I am, changes the lives of those near me. I need to do it, loudly, proudly, because they aren't ready yet to be like I am.

I need to work on changing the world in my own way. So that we don't need to say "I am proud" just for being who I am.

But we're not there yet. So, right now. Yes, I am proud to be autistic.

Tuesday, June 16, 2015

My voice not responding

I'm afraid
I sit here, my voice not responding, knowing I'm at work
Knowing that I have the choice
Attempt to continue
Or take care of myself

Yet taking care of myself won't make a difference
I'll still be in pain
There's not even a way to sleep
I have to push on either way

So why not, step up
Pick up a my cane
Push up, hold myself up, wobbling
But stepping
One step
Two step
Step by step, until I make it down the hall

Why not go on to the next class, no matter my pain?
No matter my balance issues
My senses throwing abnormal information
My nausea
And fighting to stay awake
No matter what ever is happening today
Why not?

I'm afraid
As I sit here, my voice not responding
People walking in, trying to speak to me, and me not being able to reply

Staring down at my phone, looking at my app, knowing its usefulness
And knowing here, I'm already disbelieved, looked down on, and supposed to be a "professional adult"

I have my solution
I can go, I can type, I like my app
But, will they respect me if I do?

Will I be treated as a person?
Will my knowledge be ignored?
Will what I've accomplished already be discarded because of my disability?

Is acknowledging who I am
Allowing myself to show
And allowing myself to take care of myself
Professionally safe?

I don't know.

I sit, not replying
Not knowing whether or not to click the saved phrase
Saying to those speaking to me "I have a migraine"

Until eventually I decide to go to class
And there, sit, not speaking
And not saying anything with my phone.

I feel like I did something wrong.

My survival kit

People have wondered, what are your tools for getting through the day? I carry things with me always, with more at home, so that I can cope. What I use varies on my situation, what I need varies on my situation, but I always make sure to have things available, because need frequently occurs.

I carry my backpack with me almost always. This is because its filled with tools that I need to assume I'll need except in unusual situations, and can be really awkward to swap stuff around for carrying things in alternate ways. When I need to assume I need everything, carrying a backpack is basically a necessity. When I'm not carrying my backpack its because I've pulled some of these things out, and also have a human there to assist me who knows how to if it is necessary to. I don't want to rely on my boyfriend if it is not necessary to though, so unless it is a minimal risk situation and he is there, I'm bringing my backpack.

Backpack's default set of items:

  • Medication: prescription meds and supplements organized in a 4x a day weekly pill box, OTC things in my keychain, migraine abortatives, medication is necessary to always have available with me, and organized where it is needed rather than just thrown into my backpack and expected for me to figure it out when its necessary

  • Earplugs: Noises are too loud and overwhelming. Earplugs are itchy and problematic, but laying hearing protection is sometimes necessary to survive without feeling like I'll explode. Also, I carry them on my keychain, so if I need to just pull my keys and wallet, I'll still have something to help reduce sensory input.
  • Earmuffs/Ear defenders/whatever you want to call them: Primary hearing protection, I use earmuffs despite them being more visible, because they don't itch inside my ears. Sounds are too loud, too painful, mess with my balance...No matter how much hearing protection I use they're still easily understandable, but sometimes its no so overwhelming when I'm using it, and worth the discomfort of wearing things that do something like squeeze my head.
  • (Folding) Long cane (also referred to as a white cane, though mine isn't white): Being able to always process vision isn't something I can do. How well I can understand what I see varies drastically, and how much it costs to go through that process of decoding what it means varies drastically. When it is more costly, or when no matter what I do I either am running on a few seconds delay for vision, extreme tunnel vision, or simply seeing but not understanding, I implement (more) strategies used by blind people. It allows me to use my mental power for things other than attempting to navigate the world by sight when sight isn't working with me.
  • Folding balance cane: My migraines come with bad vertigo at times. I vary from being able not being able to walk with my cane, to running up mountains which require awkward navigation. I plan for both. Sensory overload, migraines, vertigo setting in, my body might feel itself or the world moving, my leg might spasm and tense up, not wanting to work without being in pain. Whatever it is, I'll not be limited, so I'll move with things that I carry instead.

  • Tangle Jr: Such a useful stim toy! I carry the one which is covered by a squishy rubbery material, I don't remember what its called. So many reasons to want to pull out a toy and such a useful one to have
  • Rite in the Rain notebooks: Because my hands hurt when touching normal paper. They feel like the sound of nails on a chalkboard. I can't handle it, and it makes me want to bite myself, though I rarely follow through with the urge. Having paper that is coated for waterproofing changes the texture enough that it doesn't hurt anymore! And they're waterproof paper too which is awesome.
  • Compression gloves: My hands are the most reactive to everything texture, and frequently hurt. Showers hurt them badly. Sometimes simply the air hurts them. Compression gloves help, though don't get rid of it completely, so I wear them when it gets bad. They make it harder to do things, and make me prone to losing my medical alert bracelet, so I try to limit it to necessity, but when necessary, its the difference between being able to concentrate at all, and all my focus being on "my hands hurt".
  • Altoids: PEPPERMINT
  • the heaviest drafting pencil the stationary store had: Heavier pencil makes my handwriting so much neater, and makes it so much more comfortable to write.
  • Kindle: Always have something to turn to! I always can go to any of my books. I don't need to read paper books. I can always turn to my books no matter where I am or what I'm doing!

Other tools:

  • Smartphone/tablet (7"): I use both my phone and tablet (both android) heavily. I have communication apps, stimming apps, executive functioning apps. I use alarms to help me organize my day, complete with different sounds for different things. Having a computer on me always has been a thing I've relied on, but with smartphones I've been capable of swapping to just having my phone, though my laptop is very important to me.
  • Tinted lenses: I wear greyish blue tinted lenses in order to help with visual processing. They help with having fewer visual distortions, fewer headaches, better depth perception, and generally, better visual processing.
  • Medical alert bracelet: I'm always wearing a medical alert bracelet that tells people about my migraines, autism, and medication allergies. I've needed to use it before to communicate to people on my behalf.
  • Compression shirts: Compression shirts are very useful for deep pressure that you wear on your body and carry with you always. Wearing them under whatever you'd wear that day for clothing, just works well. For extra compression, breast binders work well but some people would prefer not to use such a thing.
  • Weighted blanket: I spend most my time at home under my weighted blanket, despite some people saying this is a bad idea. Without my weighted blanket I struggle with understanding where I am in space. With it, I can think clearer, and am more aware of how things are supposed to be, rather than the weird feelings of wrongness that exist in my limbs.
  • Weighted vest: While the weighted vest doesn't work as well as the weighted blanket, it is a useful tool to add when going in public along with the compression shirts.
  • Vibram Five Fingers: We have a theme here on the propioception impairments...Using minimalist shoes means that despite propioception impairments, I don't have issues with things like constantly spraining my ankle anymore! I'm able to use touch - feeling the ground beneath my feet - in order to adapt for the fact that my propioception is impaired.
  • Peppermint oil mixture: I carry this in my backpack if I have a choice, but at the moment its in a bottle where the lid might get broken :(. A mixture of 50% peppermint oil/50% everclear, its useful for so many things! Topically its a good muscle relaxant. It's a strong peppermint oil, so it can be added to drinks, for peppermint flavoring, dealing with the fact that I can't drink water straight. The fact that I seek peppermint also has great benefits with such a mixture...
  • My swing: I have a swing in my bedroom! It's awesome. It's an egg-swing I describe it as. Whether I'm actively swinging, just sitting in it hanging from it rather than sitting on something stationary, it is calming, and gives me a different sort of sensory input than not being in my swing does.
  • My cat: She does so much for me. She's my ESA, my migraine alert cat, just my cat. She could easily be a service cat if I lived somewhere where I could have a public access service cat. I can't read my own emotions, but she can, and I can read hers, reading them off of her. She leads me away from situations when I'm getting overwhelmed. She helps with meltdowns. She alerts to migraines. She is too smart of a cat, and the perfect cat for me, doing so much for me.
  • My cloak: In the winter, or fall or spring really, I wear a cloak for a coat. It's like a portable blanket! As well as all the other benefits of wearing a cloak (really, they're just better in so many ways), I get the feeling of wrapped up like I do in a blanket, and can use it like a blanket in public. When I prefer to wrap up in a blanket so strongly, this is so useful.
  • Cefaly: This is an incredibly useful and incredibly interesting device. It's frequently referred to on the internet as a space crown or a space tiara. It's a device you wear on your forehead, have do electrotherapy for 20 minutes a day, and it reduces the number of migraines you have. Also, if you wear it during a migraine it can reduce the severity or even get rid of the migraine! It's really awesome, and my favorite part of my migraine treatment.

Other sensory things that I'm not currently using as much

  • Brush for Wilbarger's brushing protocol: This protocol has been very useful! I still have brushes for "tune ups", though I don't do so frequently, just because of being out of habit. It's useful to have for when I need and remember, even if being out of habit makes it hard to use every time I'd prefer to. And the protocol was drastically useful when I went through the protocol.
  • CDs and Headphones for Therapeutic Listening: Similar to Wilbarger's Brushing Protocol, I went through this program, and use these for tune ups now when I'm most sensorily in need. In these one's case it has more to do with when I have the time to be spending 20 minutes no doing anything mentally stimulating, and not moving (because while you're allowed to move around during the program, my body cannot handle moving at all).
  • Theraputty: Great stim toy, even better for strengthening wrists when you've injured yourself stimming. I have the set of 6 different colors and will work my way up to the second to strongest from usually the second to weakest if I've done something like bothered my wrist. Otherwise, I like the second or third to strongest to play with.
  • More stim toys: Description unnecessary in my opinion.
  • Noise cancelling headphones: Really useful to have some proper noise cancelling headphones, but it requires having good noise to play with them. Wrong noises and I can't focus on what I want to focus on.
  • Respro Mask: I have an activated charcoal/HEPA combo filter mask, for dealing with smells, how toxic the air is, etc. It used to be one of my commonly used items and always in my backpack. The issue is that my face is too small for it now :( and in order to get a smaller one I need to buy both a more expensive mask and a filter that isn't the filter it originally comes with so I keep forgetting to order it.

Plus, on top of my tools, I have many coping strategies that are internal. I have taught myself how to use sensory information that isn't the "expected" one for a situation. I will visibly stim. I will use things like walking following lines, with my hand on the wall, or feeling where the grass is and where the sidewalk is. I've taught myself how to turn off processing for senses at will, allowing me to not be overloaded by them, or to be more easily able to process other senses, or other ability (such as speech). I've taught myself how to alternate necessary skills, in order to get through a situation, when I should need all of them, but can't do all of them simultaneously, by turning off everything that isn't completely necessary; keeping myself balancing, walking, seeing, speaking, in turn.

I have lots of skills, lots of tools, and use them. Because I know I am impaired, but I want to do things anyways. If that means doing them in odd ways, where I end up exhausted, dependent, and in pain, I'll do them anyways, because I'm going to choose at times its worth it and know how to do it when it is worth it.

Wednesday, June 10, 2015

Functioning Labels

When you use functioning labels what are you trying to get across?

How impaired someone is? What needs someone has? Or is it simply "How different are they from me?"

It's talked about how there aren't other ways to succinctly - and even correctly - identify strengths and needs; yet, is that what you're doing when you are using functioning labels? Is it what you are even trying to do when you really think about it? Are you thinking about which strengths people have, or what needs they have? Or are you only thinking of othering them - how odd are they? How well can they fit in if we're comparing to someone like me? Could they pretend? Do they do things I consider necessary for a normal life, because they're things I want to do; things I think everyone should do? Are you thinking about what they can do? Are you thinking about how much help they should have?

Because how are functioning labels actually used?

There's the IQ > 70, IQ < 70 version which at least gives some information, but that's rarely used by common people. And even then it isn't telling you about strengths and needs. It's telling you whether there is co-morbid intellectual disability. This way isn't about othering... but how much is it common usage? Is it what you're meaning? And does it actually do that "identify strengths and needs" thing which you are referring to?

And there are many other ways that high functioning and low functioning are used.

Verbal vs Nonverbal is one; but then what about partially verbal? What about when someone only speaks using echolalia? What about being completely fluent in a non-speech but word-based communication method? People argue, label, and deny other labels, saying people are "high functioning" to deny need, and "low functioning" to deny strength. Neither actually says how well people communicate. Neither is even used consistently.

What about how much help people need in self-care? I've seen that one as well. Yet what qualifies as self-care isn't even considered the same every time. What qualifies as help isn't always the same. What is considered standard development of children isn't even standard between conversations!

Frequently I hear "high functioning" used if people can see strengths. And "low functioning" if they can see needs. But what about the needs of those who you can see the strengths of? And the strengths of those you can see the needs of? Neither of those are explained at all.

And that even doesn't take into account that no two verbal people have the same communication abilities, no two people who need help to eat need the same help, and no two people end up having the same strengths and needs in general.

It just doesn't tell us what people have for strengths or for needs. It just tells us which stereotypes are being applied today.

The stereotype of "you're just like me" so I expect everything of you, because you must have no challenges, you must never need help. Why? Because you're just like me. Because someone who could hold a job, or even simply speak, is someone who we know can't need aide. You must lie if you speak of your struggles, because impairments do not exist in people who look like me.

Or the stereotypes of "you're so different than me" so I pity you, look down, because you must struggle through life, must not have strengths. Why? Because you're not like me. Because someone who doesn't speak, spins, needs help with being fed, is someone who there's a question of whether their life is worth living, as if that question could be answered by someone besides the person themselves.

There are the stereotypes High Functioning and Low Functioning, not telling us anything about the strengths of the individuals, not telling us anything of needs. Not telling us if people are verbal or nonverbal (because definitions vary). Not telling us if people wander or not (because all sorts of people wander). Not telling us if people can cook, clean, live alone, hold a job, or manage money. Not telling us interests, things people thrive in, whether it is spinning tops, cameras, trains, or Dr. Who. Not telling us strengths, whether it is being able to picture what is being described, an ability to relate to animals, or writing poetry that makes people feel the way they should feel reading such a poem. The labels don't say that. The labels aren't people. And at the same time they aren't descriptors with meaning.

Autistic means something, it tells us things about who we are. It shares information. It lets us relate to ourselves, to each other. It lets others understand more about what sorts of things to expect from someone like us.

But functioning labels don't give that sort of meaning, it doesn't tell us anything, doesn't let us understand ourselves better, doesn't let others understand us better, doesn't let people communicate better about who we are; because there should be no expectation because both parties would have the same definitions.

All we get from functioning labels are "who's better than who?", "who deserves what?", neither of which ends up being true.

Wednesday, June 3, 2015


"We can't do anything for you" means "We don't care"
Or "you look normal"
Or "Any effort at all we will say is too much"

How many times have I heard this?
Refusal to help
Ignoring what I need

But that doesn't mean that I don't need my accommodations
It just means they get away with it easier

As once again my path in life changes because of the same refusal
To let someone possibly be capable of doing what they are capable of
I wonder if it is worth asking
Because every time I'm told the same things

"We can't do anything for you"
Whether it is sitting me in a room by myself
Or putting up signs saying not to spray perfumes

Actually doing your jobs is too hard
So instead you make my life harder
Push me away
And make it so that even when I'd help you, I can't

It's not even better for you this way
It's just so much harder for me.