Category Archives: Uncategorized

How functional am I?

I’m told I’m high functioning.

As far as I can tell, mostly this means that for short periods of time I pass for normal. When I’ve saved up my spoons and I’m not overloaded, if a random stranger glances at me they don’t see anything unusual. So, to the people who use phrases like “high functioning” and “low functioning,” I’m high functioning.

Now, intellectually, I know that’s full of bunk. I know that “high functioning” means “we’ll ignore any help you need” and “low functioning” means “we’ll ignore any strengths you have.” I’ve seen it in practice many times, and I’ve had people deny my difficulties or insist that I’m just “quirky” based on nothing more than their idea that I’m “high functioning.”

But turns out that as much as I know this way of thinking is incorrect, as much as I understand that functioning is not linear, it turns out that it has burrowed into my brain deeper than I ever realized. It pops out at me and leaves me struggling with… I’m not even sure what.

A little backstory – I was diagnosed as an adult. People can make some very inaccurate assumptions about my childhood when they hear that, though. Basically, by the time I got into kindergarten, it was unmistakable that something was wrong with me. However, no one knew what. Long story short, things tended to jump between trying to figure out what was going on, and just treating me as though my failings were my fault and I’m just weak. I know now what was going on and why, but those messages don’t go away so easily.

Now, a little while back, after a lot of work and many incremental steps, I reached the point of being able to go grocery shopping on my own. It was a huge accomplishment for me and I’m glad I’m able to do it. This involved a lot of working both on driving independently (very difficult both in terms of sensory input and real-time processing) and on being able to handle the intensity of the grocery store on my own long enough to get the groceries.

This is where it gets rather shameful. Where my rather treacherous brain betrays me. The grocery store I go to employs some people who seem to have intellectual disabilities. They are definitely not the kind of people who can pass for normal the way I can. If someone who rates people by functioning came on by, they would surely say that I am higher functioning than some of those employees.

Yet those “lower functioning” employees are holding down jobs that would send me into screaming meltdowns within a matter of days if I tried to do them. And sometimes, when my brain is being uncooperative, when all that inspiration porn I’ve been exposed to and all those messages of moral weakness I grew up with are echoing loudly in my ears, I wonder why they can do it and I can’t. I think I must just be weak or lazy the way people insist people like me must be. I’m failing to “overcome” my disability the way we’re supposed to in order to be worthwhile.

I know that this is wrong. I know that there are many, MANY errors in my thinking. I know that functioning is neither linear nor one dimensional. I know it’s only reasonable for people who are weak in ways that I am strong, to also be strong in ways that I am weak. I know that this is how it works. But sometimes, on a gut level, it seems I forget.

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What’s the Difference?

Image is of a woman with her hand up to her head, with a confused facial expression. Creative commons image by CollegeDegrees360 on flickr.

How about another “the world from Andraya’s perspective” post? Or maybe a “things that confuse me” post. Those posts have a lot of overlap.

So there are two concepts that I gather have very serious differences between them that I find I really struggle to understand. People have even explained the differences to me that made sense to me at the time, but somehow I just lost the thread of it or something.

Basically – what is the difference between privacy and secrets?

I mean, I get that there’s kind of a different tone to the two words. People seem to see privacy as a matter of respect, but “secrets” are dirty and icky and bad. But on a personal, things-in-my-life level, I don’t really know which is which. If I have a thing that I am only willing to share with a small number of people, and it is important to me that they not tell others, is that a desire for privacy or is it a secret?

In the past I figured the difference didn’t really matter and didn’t bother myself with it, but then I started running into people who took it as a matter of pride that they do not keep secrets. Not their own, and not anyone else’s. Suddenly, the difference became SUPER important to me. If they don’t keep secrets, does that mean they won’t respect my privacy? That I cannot share private things with them because they won’t keep my “secrets”? My response to those people is that I cannot get close to them, because I cannot ever share private things, because they will not respect that I do not want these things to be spread around.

But then I remember that people say that privacy and secrets are different. And I get confused. What if I say something if private, but they decide that it’s a secret and that they don’t keep secrets? How do we classify which is which? Is it just “this is icky, therefore it’s a secret; that is ok, therefore it is private”? But sometimes good things are secrets, right? Like surprise parties, or the present you are getting someone. And if someone refuses to keep any secrets, period, does that mean you can never share surprise parties with them, or tell them the present you are getting for someone else? If not, why not? Why would refusing to keep secrets be a good thing in that context?

So basically, I don’t get it. I don’t have a good conclusion for this post, because it’s just me flailing around trying to figure out nebulous concepts. I have such a terrible time with nebulous concepts.

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Quick Question

Hey folks! I have a question. How would you feel about it if I went back to posting twice a week, but my thursday posts were more personal, what’s-going-on-in-my-life or whatever I feel like thinking or writing about posts, rather than things specifically related to my blog?

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Spoon Theory

all spoons

Spoon theory is a topic that’s been bouncing around in my head for a while. First I thought I wanted to write about it, then I thought that was pointless because surely everyone knows about spoon theory by now, and then I learned that NOT everyone knows about spoon theory so I decided to write about it.

So first, the basics. What is spoon theory?

Spoon Theory was dreamed up by Christine Miserandino and you can read the whole thing over here . If you’ve never read it or you are unfamiliar with spoon theory, I definitely recommend giving it a read. I will, however, try to sum it up here.

Basically, Christine, who lives with chronic illness and pain, was trying to explain to a friend of hers what it is like to be sick, and why she cannot do things sometimes. Even things her friend thinks should be easy and low-cost, like going out for dinner. Since they happened to be at a restaurant at the time, she chose spoons. Spoons are really just a token stand-in for our ability to do things. Our energy, our abilities, that sort of thing. Just to be clear here, spoon theory itself is a metaphor, and spoons are a metaphor for what we can do.

As she explained it, when you live with chronic illness every day you start off with a limited number of metaphorical spoons. Everything you do costs a spoon. Getting dressed costs a spoon. Taking a shower costs two spoons. Washing your hair costs and extra spoon. Once you’re out of spoons, that’s it. Your body simply cannot do anything more. You might be able to borrow from the next day’s spoons, but it will leave you short tomorrow so needs to be considered carefully. It means that everything you do needs to be carefully thought about. Every choice becomes laden. Being able to do one thing but not another isn’t just about the amount of time in a day, it’s about how much your body can actually accomplish. If you run out of spoons at 3 in the afternoon, then you’re done for the day at 3 in the afternoon and you’d better hope that there are no emergencies after that.

Why I like it

Personally, I think a big reason why spoon theory took off so much is because it is so adaptable. The theory itself has gone far past its initial roots and can be helpful to a wide variety of people.

If you do not live with an illness or condition that limits your spoons, having a basic understanding of spoon theory can help you understand why a friend may not be able to do things very often. It can provide a framework to help you grasp a thing that is entirely outside your experience, which can be very useful for developing compassion and patience for a person who needs help.

And if you do live with something that limits your spoons, this can be both a way to explain to others why some things are difficult or impossible, and be a way to help self-regulate. It’s a way to think about your own energy levels and to figure out what you may or may not be able to do in any given day.

As for me, I do not have chronic pain or any chronic condition that impacts me physically. My body is quite sound. Nevertheless, I still think in terms of spoons. This is because for me, it is my mental energy that needs to be watched. I need to think about how and when I interact with people, what kind of sensory input I am going to be dealing with, how quickly I may need to switch between tasks, etc.

For me, when I am out of spoons that means either a meltdown or a shutdown. These are things beyond my control – all I can do is be careful to not spend all my spoons and hope nothing terribly disastrous happens that takes more spoons than I have. I can, at times, borrow spoons from tomorrow, but I need to pay them back with interest. It is only a thing I do on rare occasions, if I need to or if I consider it worth it somehow. Learning how to manage my spoons is probably the biggest thing that has made meltdowns rare for me at this point. I understand the cost of things much better than I used to, and I can make informed choices.

An Addition

There is one important point that I think should be added to spoon theory (beyond the “it’s not just about one’s body” thing), and that is that it is sometimes possible to increase one’s store of spoons. Sometimes you can get more without borrowing against tomorrow. How this happens differs for everyone, though. For me, my horseback riding gives me more spoons for the whole week. Also, if I feel myself getting low on spoons, I try to isolate myself where there are no people and there is very little sensory input. This can quiet my brain and if I take the time to breathe and center myself, I can gain a few spoons back that can at least help me through whatever situation I am in. Though it should also be noted that this activity does cost me a spoon to do – I cannot do it if I am entirely out, so I need to watch for when I’m getting low.

Finally, real life is not always this linear. Some mornings a person may have lots of spoons, and other mornings very few. Sometimes you may seem to have lots of spoons on hand, and suddenly find that number halved for no visible reason. Or maybe your spoons will suddenly increase, also for no visible reason. Real life can be annoying that way. Even so, many people still find it incredibly useful to think in terms of spoons.

And if you’ve ever wondered what a friend was talking about when they were nattering on about spoons, well hopefully now you know.

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My Biases

Recent events have gotten me thinking about some of my biases. I do have them. Some of them are really quite strong. I am not here to apologize for them – quite the opposite, I like the biases I am about to talk about. My writing tends to be heavily influenced by them. However, it is clear that there are people out there who think these types of predispositions are absolutely horrible, so I figured I would just make what I believe utterly clear. This is my perspective.

1. I am heavily (though not completely) into the social model of disability. I do not say this to simply disregard the medical model, but to say that the medical model is, by itself, woefully incomplete. The social model is absolutely vital.

Basically, this means that I think that the problem is not so much the physical or mental differences (which is not to say we don’t have challenges. we do. See my contradictions post), but the way society treats those of us who have physical or mental differences.

I do not say that it is we who are broken and have to be fixed or cured. I say the world needs to learn to accept us, embrace us, and accommodate our needs. This is a very huge deal, especially as it seems that some people who strongly prefer the medical model of disability can be quite vitriolic about it.

Further reading:
http://en.wikipedia.org/wiki/Social_model_of_disability
http://www.scope.org.uk/about-us/our-brand/social-model-of-disability

2. Disabled adults need to lead the conversation about disability – not the parents of disabled children. This… this is a contentious point. Just to be clear, I am not saying that there is no room for parents at the table. Quite the contrary, parent’s voices are important too. However, non-disabled parents need to take a few steps back to make sure the voices of disabled adults are heard first, and need to be willing to listen to and take seriously the messages coming from disabled adults.

If parents of disabled children decide that the adults within their particular disability niche should not be listened to, I will be incensed. Would they want their own children to be ignored that way, when their children become adults? Somehow I doubt it.

If said parents disregard the social model of disability and are firmly within the medical model of disability and refuse anything else, my reaction of displeasure will only increase.

3. This one is more recent and less entrenched than the other two, but more and more I’d like to see the various diverse disability movements come together. I would like to see autistic adults do more talking to adults with other disabilities. I would like us to talk about how our issues overlap, and how we all might be able to help each other. Because there IS overlap, and surely we could come together to combat the problems. So often our communities seem so insular. Maybe there’s a way to change that.

This post needs a conclusion or wrap up. To be honest, I can’t particularly think of one. I suspect I have more biases, but these are the big ones. These are my beliefs, and I care about them, and knowing what they are probably helps shed light on where I’m coming from.

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So…

My latest post has generated an incredible amount of vitriol, much of it seeming to accuse me of saying things I never intended nor wanted to say. It is officially more than I can deal with. I thought about addressing some of the comments – to try to clarify what I had intended to say vs. what it seemed people think I am saying, but I honestly believe the effort would be futile.

Regardless, this has taken a significant toll on me and I think that I will be closing up shop for at least a few weeks. I plan to be back eventually, but right now this is very much a dangerous place for me.

I’m not really sure what happened here, but apparently people who do not value civility hate me.

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Are vs. Have

This time I’m going to go ahead and beg – please share this! The more you share, the more responses I’ll get and the more awesome it will be. First give me ALL you answers, and then tell lots of people, please pretty please!

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Intersections. THEY MATTER

(link in title)

Longtime readers know a bit about my brother…that he is the older of my two older siblings and he has autism. He is aphasic, and he makes loud funky noises…he gets excited when he likes a song and he twirls and dances.  He looks “normal”…a lot younger than his 43 years, but still “normal” in presentation if not behavior.

So, I know that his behavior could get him beat up or shot.

He likes to look in car windows.

He doesn’t understand “the rules.”

He likes people…and the smell of freshly washed hair or French fries on someone’s plate.

We work on it with him…we watch him closely.

Because we live in a country where black men get shot and killed for seeking help after a car accident…or refusing to turn down music…or walking home after going to the corner store.

This is why you still benefit from white privilege if you are autistic. This is why we need to talk about it. It matters. Seriously.

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February 16, 2014 · 2:27 pm

How do I adult: Showering

creative commons image by orkomedix on flickr

Elephants! Showering!

Preamble

I have noticed in a number of autism spaces that there are people out there who have reached adulthood but are having problems with basic self-care things that we were expected to learn in childhood. This can be an embarrassing thing to talk or ask about, especially with the level of detail sometimes needed. In that vein, I figured I would take a stab at occasionally posting “how do I adult” topics. Today’s topic is taking a shower, which I will try to break down into basic sections, with as much detail as possible.

Things you will need:

A washcloth
A bar of soap
Facial Soap
Shampoo
If your hair is 4 inches long or longer: Conditioner
If you don’t want to wash your hair: A Shower Cap
A towel to dry off with

Getting Started

To get your shower started, turn on the water all the way hot and let it run for a few minutes. Check it with your fingertips every minute or so, to see if the hot water is coming through.

Once it is, turn it cooler to get it to a temperature that is comfortable for you.

Get undressed. Remember to take off everything! Don’t forget underwear or socks or any necklace you might be wearing.

Decide ahead of time if you are going to be washing your hair or not. If not, put on the shower cap to keep your hair dry.

Step into the shower. If you’re worried about balancing, it can help to have a bathmat on the shower floor. Once you are in the shower make sure the shower curtain or door is closed.

Next up, get wet. Get ALL of yourself wet – your front, back, and sides. Lift up your arms to get your armpits wet too. If you are washing your hair, you will need to wet your hair as well. Stand with your back to the water and tilt your head back as far as it will go. Move back until you can feel the water hitting the very top of your forehead. Then slowly tilt your head forward so that water gets onto all of your hair. Also tilt your head to one side and then the other to get the sides of your head wet. If your hair is more than ~4” long, you will need to lift your hair up to help the water get all the way in. You want your hair quite thoroughly wet.

Summary of Getting Started:

1. Get the water started at the temperature you like.
2. Get undressed.
3. Step into the shower.
4. Get completely wet.

Next up, washing your hair!

If you are not going to wash your hair, you can go ahead and skip to page 4.

(ETA: whoa, the page links are way down low! scroll down to find them)

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I am having thoughts

I’m reblogging from Disability and Representation again (click on the title to see her post). Her blog frequently makes me think.

She makes a lot of good points here about homelessness, poverty, accessibility, and systemic problems.

However, the thing that I keep thinking about is what she’s doing. She’s written about it before and I’ve thought about it before, and I find I keep thinking about it more and more and more.

She, she has this thing where she makes simple bag lunches – a sandwich, a fruit, some cookies – and then goes around her city giving them to hungry people who maybe otherwise wouldn’t get a meal. It’s such a small thing but also such a huge thing and I find I want to do it too.

Only I don’t know Philadelphia all that well (at all, really). And I doubt I would feel safe. And transporting lunches from where I live down to the city would be possible, but logistically tricky. But I could do it with a partner! If I could find a partner.

So yeah. It’s on my mind. I want to do this. I can’t do big, impressive things but surely I can find a way to do small things.

Right?

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December 12, 2013 · 12:27 pm