Category Archives: issue

How do I handle change?

Short answer: not very well.

Ok, ok, that’s no good for a blog post. This is actually a really old idea on my possible blog topics list. Sufficiently old that I actually don’t remember what inspired the idea. Probably a facebook comment I saw somewhere, or maybe a comment on a blog or article I read. In any case, someone was asking about autistic people and handling change.

Now, not to be a stereotype or anything, but I really don’t like change. Sameness is happiness. Ok, it’s not that simple, but still. I like predictability, I like routines, I like knowing what’s happening. Not that I’m alone in this. I mean, it’s pretty much a cliche that if a website changes its layout, everyone will immediately hollar and complain about how horrible the change is and how much better it was before, even if it turns out that the change was for the better. I really suspect that no one likes change.

However, difficulty handling change does seem to be considered an “autistic thing.” Honestly, given that I think it’s an “everyone thing” I suspect that it’s less about change specifically, and more about other things on the autism spectrum. Maybe sensory stuff, maybe differences in how we express displeasure or stress, and honestly, maybe we really do have a harder time with change than NTs. I wouldn’t know, since I would need to experience the world as a NT in order to compare and actually see if there are substantial differences.

Anyway.

I do have a hard time with change, and yeah, it’s a thing for everyone, to a greater or lesser degree. So the question was about how we make it easier (it may have been directed at other parents, because lots of parents don’t seem to direct their autism questions to, you know, autistic people, but that’s another rant entirely and it doesn’t really matter for the substance of this post). In that vein, what do I do to deal with change? I don’t feel like I know enough about this to officially make it part of my How Do I Adult series, but here are some things kinda in that vein.

A big thing is that I really try to avoid being surprised by change. People who know me generally know to give me a heads up if a change is coming up so that I have time to adjust. A while back I changed riding instructors. My original instructor let me know several months in advance that at a certain point she wasn’t going to be able to teach me anymore so I had lots of time to get used to the idea. Changes to my routine are always thought out in advance and usually discussed with Nee, even if they don’t actually impact him in any way. I do the same thing with changes in plans.

Speaking of plans (this is kind of related to this topic) – I don’t do spontaneous. It’s just too stressful. I know that “normal” people seem to think that spontaneous socialization = better socialization, but this just isn’t the case for me. With a lot of personal work over a long period of time (we’re talking years here), I’ve managed to whittle down the amount of advance time I need to be comfortable with a socialization plan to be only three days. Still, I prefer more advance notice if I can get it.

Changes to previously laid plans also generally call for advance notice if possible. The theme here is giving me time to adjust. I just need processing time.

That said, sometimes shit happens and advance notice just isn’t going to happen. Plans get cancelled, weather happens, people or animals get sick. What then?

Well, I have a few things I do to make this easier on me. A BIG one is to remove myself from the situation that is stressing me. I mean, if a plan is cancelled I can’t suddenly make it happen. But if I find myself somewhere I didn’t expect to be, allowing myself to leave, even if it’s just to go outside by myself to breathe, is huge. Part of this is that I cannot handle feeling trapped (seriously. cannot), and part of this is that if I’m in an unexpected situation I might not be processing everything very well and I just need a time-out to let my brain catch up.

Another, more recent, this is to let myself be grumpy. Now, this one is much more viable now that I am on the antidepressant and random negative feels are much less likely to trigger a horrible crash and depression episode. So now I can just let myself be grumpy about, say, riding being cancelled because of extreme cold.

Before the meds, grumpiness had to be handled much more carefully because as mentioned, there was a not-insignificant risk that it would trigger a nasty crash. However, I can’t force myself to cheer up, nor can I force feelings I don’t want to go away. So mostly I tried to keep an equilibrium (breathe… breathe… breathe…) and brace myself against any icky feelings that came from plans being changed.

I also try to structure my life to maximize my ability to handle changes or the unexpected. I have a certain level of regular, weekly routine that I always follow. If that routine gets messed up for some reason, I get REALLY stressed. However, if I can keep to that basic routine, I have a lot of room around it for various things. I mean, ok, not impromptu socializing, but I can handle short-term decisions to, say, go grocery shopping or do other low-level evening things with Nee. A big thing, though, is that having a certain amount of my weeks always look the same makes it easier to have other parts of my weeks not look the same. Maybe THIS saturday I plan to visit a friend, and THAT saturday I go to a religious function, and THIS wednesday I plan to go to a movie. These week-to-week changes, even planned in advance, are largely possible because of the predictability I keep in my life.

I have no idea if any of this will help anyone else, and I think I got a little rambly, but there it is. Change. Change is serious business. Srsly.

 

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We don’t need no conversation

A reader recently sent me a really great idea for a blog post regarding forming connections without conversation. I have so many thoughts about this that I’m not sure how to join together into a single blog post, but I’m going to do my best.

Much of this comes from the fact that allistic people really do seem to rely so heavily on conversation as a means to connect to people. It’s often simply a default assumption that we will all find conversation as easy as they do and that highly interactive social connection is simply the best way to socialize and spend time with other people.

So first of all, let’s talk about conversation. It isn’t nearly as simple as just knowing words, knowing how to speak, or being able to make sentences. Oh no, it really isn’t. I mean, I know lots of people seem to think that conversation just naturally follows being able to speak, and we put all sorts of effort into teaching children how to talk and just assume they’ll figure out conversing on their own. So let’s just look a bit at that, shall we?

Conversation involves lots (and lots and lots) of real-time processing. Processing the words people say, trying to figure out if anything may have been behind the words and if so, what that was, processing tone and facial expression and posture and body language and everything else that goes with conversations. While conversing I honestly find it rather unpleasant that we are expected to do all of that, just given how hard it can be for me to process visual information and auditory information at the same time. Even purely text-based conversations, when done in real-time, can be challenging with all the rapid processing that is necessary. Now, I personally do enjoy conversing, don’t get me wrong, but I do think that there needs to be more general knowledge out there about just how tricky conversations can be.

While I find conversations sometimes tricky and can only do them within certain limitations, other people find them nearly or entirely impossible. However, difficulty in conversation does not mean that we have no need for human connection. I sometimes see people claim that autistic people do not need or desire human connection, or that said desire is what separates autism from Aspergers and honestly, I increasingly find that a load of twaddle. The more I read books from the perspective of autistic people, the more I read blogs like A Diary of a Mom, the more I believe that yes, autistic people totally want connection too. I know I certainly do. However, we find it difficult. Allistic people want us to interact they way they interact, to look the way they look, to be the way they are, and that’s a very difficult and unreasonable thing to ask of us. So many people just don’t see the need to find a shared language to allow for connection, and when they think in terms of assisting us, it’s just ways to try to make us like them rather than trying to meet in the middle. This is bothersome to me, in so many ways.

BUT, this post is supposed to be about connecting to others without needing to rely on conversation. As a brief note staying within the realm of conversation for a bit – even just allowing for more time to process (potentially LOTS of time to process for some of us) in silence is huge. Don’t try to fill up space with words, don’t bombard us with more and more words if we aren’t answering right away. Don’t try to force us to do everything as rapidly as you do. Allow for time to process what you said, time to think about our response, time to translate that into words that we hope will make sense to you, and time to get those words out our mouths. That might take a while. It might not feel like a conversation anymore. That’s ok – it’s communicating and connecting. Importantly, it’s connecting with who we are rather than who you want us to be, and that is incredibly important.

Imagine if I tried to force my way of conversing onto everyone who talked to me. You may not look at me when you speak to me. You must outright say what you would otherwise rely on body language to convey. You must wait for a very long period of time before you answer a question or reply to me. No one would take that well! Yet the inverse is demanded from us All. The. Time.

Anyway. I really must get back to the topic at hand here. One of my favorite ways to connect to people is something I’ve talked about before – Parallel Play. Allistic people often demand, or at least prefer, conversation happen with it, but that is actually not at all necessary. There is also the related associative play – where we are doing similar things and interacting in some way, such as sharing materials. I find that allistic people seem to rank interactions as better or worse depending on how much it forces us to closely interact with the people we are with. Cooperative play is seen as “better” than associative play, which is better than parallel play, which is better than solitary play. Only maybe these are simply different, rather than better or worse. Maybe they are all entirely valid, and maybe a parallel play connection is actually just as real as a cooperative play connection. (hint: I don’t actually mean “maybe” in the previous sentence. They really are just as real and valid as each other)

Possum, the individual who originally proposed this topic, also posted a comment to my Parallel Play post describing just such a non-conversational connection she experienced once. With her permission, I am sharing it here:

One of the high points of my life socially was casually dropping by an acquaintance’s porch one summer longer ago than I’m going to admit to. She was in the middle of some woodworking project. As a woman with NVLD as well as Aspergers (both undiagnosed at the time), I couldn’t help a lot. We just “be”ed there together in companionable silence, me handing her the tools she needed. I considered that moment in time magic and was never able to replicate it, but the way you just articulated it and normalized it gives me what I need to create more of that in my life (in conjunction with an awesome therapist).

All things considered, I actually suspect this was a form of cooperative play (yes, I am using the word “play” here very broadly), just given the cooperative nature of what they were doing. Yet it was done in “companionable silence” (what a fantastic phrase that is!); it was interaction and connection done without needing to fill the space between each other with words and sounds that, for some of us, can actually just create more distance. See, when I talk about “filling space with words,” that’s actually what it feels like for me. Like words take up space and if you put a whole lot of them out there in a short period of time, they push on me, and they can actually push me away from you because there are just so many. Instead of connecting us, they’re just this cloud of bugs, separating us.

Autistic people need meaningful connection as well. It’s just that we can’t always do it on allistic terms, and all too often I see autistic people speak of simply giving up due to the extreme difficulty of connecting in a world that is all too hostile to autism. So, allistic people, please respect silent connection, and please allow us that as well. We work so hard to interact with you on your terms; maybe you could interact with us on our terms as well. Let’s find ways to create connections based on companionable silences; on long, thoughtful pauses; on closeness that does not need constant verbal validation.

That would be awesome.

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Radio Sensory

So there’s this guy, by the name of Matthew Morgan. I don’t personally know him, though he did graciously answer a few questions I sent him regarding a project of his.

That project being, Radio Sensory. To put it briefly, it’s a radio station that you can play in your media player on your computer (and possibly smart device, though I cannot personally vouch for that), that plays various sounds meant to be soothing. It is specifically for those of us on the autism spectrum who may at times desire or need repetitive, soft auditory input. He himself is on the autism spectrum (mild autism disorder, specifically), and uses his radio station around once a week or so.

Honestly, I think it’s a pretty neat project. He says he originally got the idea from reading posts in places like wrongplanet and yahoo answers, and seeing people talk about autistic children having a difficult time getting to sleep. In response, he made an internet radio station! That’s so cool! Heck, all I would do is blog about sleep.

Apparently there is a website where he can find sounds that are in the public domain, and tries to add around an hour of new content every two weeks or so. As far as I know it’s still a fairly young project and while he does actively work on it, it is not a high priority for him as not many people use it.

The main downsides are:

1. You need to download something (I don’t really understand what) and then play it through your media player. Browser-based listening should happen eventually, but is not currently possible.

2. You have no control over what sort of sounds you get, as it is a radio station. I find myself hoping that at some point in the future, if it gets more popular, there will be a variety of channels with different types of sounds so people can choose what they find most soothing. As it is, you turn it on and you get what you get.

Personally, I have found that if I am feeling wound up, turning Radio Sensory on for a little while can help a lot in finding my equilibrium. And that’s pretty nifty right there.

(and after having just shoveled around a foot of snow, some nice, soothing noises sounds really good right about now)

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Bound by my word

I’ve noticed that there are some ways that I seem to use my words differently than other people. I am literal, I am absolute, I tend to take things seriously. This impacts my life in an incredibly large number of ways, and one of those ways is in words and language and how I treat what I say.

Specifically, I am bound by my word in a way that I’ve noticed other people are not. I was having some goofy conversation with a friend of mine a while back, and he was doing something physically goofy as well. It was all very silly. At one point he said that he was done doing the goofy thing for the night, but then he did it more a few minutes later. And my first response was to think that he lied. It was not a big deal or anything, but still. A lie. But then he said that no no, it was not a lie. He had simply changed his mind, which is apparently a totally valid thing to do. I am trying very hard to respect that, and acknowledge that language is apparently fuzzy for other people.

However, it does not work that way for me. Language is rarely fuzzy (though sometimes language is unclear, and it bothers me when it is), and I mean what I say. Or at least, I had bloody well better mean what I say, because I am bound by it. I don’t need to say “I promise” or “I give you my word” in order to set my word more firmly and make it solid. It is simply always like that, by default. If I say that I am done with something for the night, then I am bound by that. My options are to be done for the night, or to make myself a liar. Changing my mind simply is not an option.

I mean, it could be an option. But it has to be put into the words I say. I would have to say “I think I am done with Thing” or “I am probably done with Thing” or maybe “unless something changes, I am done with Thing.” If I wrap my language around my decision not being certain, then I get to change my mind and my decision can be less-than-solid. If I don’t do that, though, then that’s it. If I do not make my words say there is an option to change my mind, then the option is not there. If I do not put an end-time on Thing, then there is no end-time. If I say “I am done with Thing” then I am done forever, because I did not give myself the option to change my mind, nor did I stipulate end conditions. Therefore there are no end conditions and instead it lasts forever.

I’ve started idly speculating where this might be coming from. Some of it might be my Christian upbringing and that bit from the Sermon on the Mount when Jesus says “But I say to you, make no oath at all, either by heaven, for it is the throne of God, or by the earth, for it is the footstool of His feet, or by Jerusalem, for it is THE CITY OF THE GREAT KING. Nor shall you make an oath by your head, for you cannot make one hair white or black. But let your statement be, ‘Yes, yes’ or ‘No, no’; anything beyond these is of evil.” (Matthew 5: 34-37) That was one of the verses I distinctly remember from growing up, and despite my dramatically changed beliefs, it may have stuck with me.

It also might be due to Aspergers and how it reflects in my thinking. As I mentioned before, I am literal. I am absolute. I do not think in shades of gray and I never have. So viewing what I say in absolute, inflexible terms is really only natural. There is also the fact that I have a history of learning to be very careful with what I say simply due to necessity. People who do not have this history may not regularly watch their words particularly closely. Or perhaps the Christian upbringing and my aspie self and history collided, causing some extreme reactions in some of what I say and do.

It is hard for me to remember that not everyone works this way. That people can made a declarative statement with no explicitly stated way out, and still change their minds. That this does not make them liars. I am trying, though, and working on respecting other people’s fuzzy use of language.

Nonetheless, that effort to understand fuzzy language does not extend to myself. Trying to understand that other people are not bound by their word the way I am does not actually change the fact that I am bound by what I say. I wonder if someday this will change, but right now it seems unlikely.

 

Update: Ok, so I wrote this back in August and am only now posting it. That’s sort of how it goes with this blog. However, in that time frame, something changed! Specifically,  I’d added a “not in my right mind” clause for if I make a bad decision at a time when I can reasonably say that my brain is malfunctioning. Then, I’m not bound by it. I haven’t actually managed to test this yet, but it seems to have wormed it’s way into my thinking.

I am also finding myself confronting the fact that in this case, my rigidity is not doing me any favors, and there are probably more circumstances where I need to be able to change my mind. On a side note, it feels really weird to type the phrase “change my mind.”

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Meltdowns

I want to talk some about meltdowns. There seems to be an increasing acknowledgement that meltdowns are not the same thing as tantrums, and as such cannot be judged or treated the same way. This is good to see and I’m glad people are taking it seriously. I remember growing up people assuming my meltdowns were actually tantrums (and apparently I melted down a *lot*) and telling my mom that I was just trying to manipulate her and such things. I was so confused by those statements. Meltdowns were terrible and I couldn’t imagine having one on purpose. No one seemed to be aware of the intense emotional overload that was behind them.

Something I see some people talk about but that seems to get less attention is meltdowns in adults. The autism spectrum is still treated as a childhood thing more than anything else, and people sometimes seem to forget that children on the spectrum grow up into adults on the spectrum, and we still have difficulties and challenges. Those difficulties and challenges include meltdowns.

So I’ll admit it. I still have meltdowns sometimes. They happen with far less frequency, but they do  happen. I overload, get upset, and start screaming. The biggest way for me to avoid that happening is to learn to avoid my triggers.

But here’s the thing about triggers – when it comes to a meltdown, it’s pretty much never one specific thing that does it. It’s when too many things happen at once and I cannot process or handle it anymore. Fixing onto the last thing that happened that pushed me over the edge would be missing the whole point, and would simply result in a ridiculously long list of things to avoid. If you’re trying to figure out meltdowns in another person, remember this bit. It is NOT just one thing. Do NOT try to find “the trigger” and then add it to the list of things to avoid entirely.

Instead, it’s about staying aware of my capacity, and how near to my limit I am. It’s about learning to remove myself from a situation before I reach that point so I can calm down or recharge or just get some breathing room. Which also means – stop accusing me of sulking if I do that. Don’t go after me for whatever reason it is that people follow someone who left. Removing myself from a situation I cannot handle is a totally reasonable thing for me to do, and it actually took me quite a while before I learned to read myself well enough to know when to do that, and to get over my “don’t sulk” training enough to allow myself to do that. Speaking of which, that “don’t sulk” training can be harmful and counterproductive. Sometimes just going off alone to be upset is absolutely and completely the best possible thing to do.

This part is harder to talk about because it isn’t very socially acceptable, but sometimes I also really need to hit things. However, I do have control over what I hit and if someone’s meltdowns involve flailing fists, I think it’s ok to demand a certain amount of attention over where those fists are going. It’s ok to punch a punching bag, or a pillow, or my mattress. It is not ok to punch a person or an animal or the TV or my own head.

I doubt I will ever “grow out” of meltdowns. I hope my ability to cope with stressors increases, and my ability to handle it and do something when I see my edge approaching increases, and my ability to see that edge coming ahead of time also increases. I imagine that my meltdowns will continue to get less and less frequent as I continue to work on these things, but they will never stop being a risk. Adulthood does not make these things go away.

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Where are my arms?

So since writing my post about compression clothing ages ago, I’ve had lots of time to think about proprioception and how it impacts me.

Ok, first a quick refresher. Proprioception is the ability to tell where our body is in space without looking at it. You know how if you hold your arm off to the side, you can feel where your arm is? That feeling is called proprioception. If you have your arm sticking out to the side, and you decide you want to bend your elbow 90 degrees, so your hand is up in the air, proprioception is what lets you do that accurately, without necessarily needing to look at your hand to make sure it’s where you want it to be.

So first of all, when I wrote my compression clothing post, I really had no idea why compression or weight would impact proprioception. Since then I’ve learned that this feeling comes from our body’s ability to detect and interpret pressure on the various ligaments/tendons/whatnot in our joints (actually, I think it’s more complex than that, but anyway). So it makes sense that external pressure on a joint might make it easier to feel that, and thus make it easier to know where exactly our body is. So yeah, I could easily see compression or weighted clothing having an impact.

Now, as far as I can tell, I have some minor proprioceptive impairment. Mostly in terms of my hands frequently being a few inches off from where I thought they were, which I find out because I crashed them into something that I was trying to go around (if the faucet on my kitchen sink could think, it would probably believe I didn’t like it very much). I’ve more less gotten used to it, but it can still be a little odd to realize that my hands were not where I thought they were, even when it’s only by a few inches.

Story time! Once (and as far as I know, *only* once) I lost my feet in a more significant way. I was outside running in my barefeet and for some reason (I don’t know why) I lost my feet. By which I mean, they stopped being where I thought they were. I was able to keep running due to, I don’t know, muscle memory of how to run or something, but I was no longer able to have control over where my feet were landing. I mean, I have to know where my feet ARE before I can deliberately choose where they’re going to land. So I saw I was heading towards a manhole cover that had a rather nasty raised metal rim, and I tried to make it so my feet landed either in front of or behind it.

I missed.

WHAM! My foot landing squarely on that metal rim, which luckily was wide enough to not break the skin, but it left a nasty, painful bruise.

All because I lost my feet. And because I was stupid enough to keep running even though I didn’t know where my feet where. Learned my lesson on that one. Don’t do that, seriously.

Anyway. I wasn’t able to find my feet again until I stopped and kicked my legs around a little.

Another story! When I was growing up, this actually happened to my arms on a regular basis. Specifically, when I woke up in the morning – every morning – I would have no idea where my arms were. None. Before I could get up, I had to find them. There was a slow way and a fast way to do that. The slow way was just twitching – twitch my fingers, my bicep, the muscles around my shoulder, that sort of thing. It took a minute or two, but it would let me locate my arms so that I could use them again. The fast way was basically really big twitching – you know, a flail. Definitely not the right choice if anyone was within arm’s length, but luckily I had a room to myself. I considered this entirely normal. It never occurred to me to question it until I read Lord of the Rings and got to the scene where one of the hobbits wakes up tied up in some bushes, and is able to figure out how he is positioned without moving. People can do that? That’s a thing? And an author would write about it as if it’s normal? REALLY? I asked my parents and learned that actually, I’m the weird one, losing my arms every morning.

I’ve been thinking about those times, how they felt, and what it took to get back “in” my body. And I’ve wondered… what would it be like if that happened to me a lot? What if instead of being off by a few inches, I regularly lost my hands by a few feet at various times during the day? What if it was really difficult for me to tell where my body was? What if twitching wasn’t good enough to find myself?

Well, I’d probably feel really disconnected from myself. Like my legs and arms were these things attached to me that I didn’t have proper control of, rather than limbs that I inhabit. And I’d probably flail my arms around a lot, just trying to find them. And in that flailing, they’d probably go off in unintended directions, maybe accidentally hitting people around me even though I really didn’t mean to, because I couldn’t tell where they were well enough to direct where they should go.

And what if I couldn’t communicate that to the people around me? What if I had so much trouble telling where my arms were, and people told me to put my arms somewhere but I couldn’t do that until I could find them. So I flail around to find my arms, but I can’t right away control quite where they’re going, so I’m a hazard to people around me. And they don’t know why I’m flailing, only that I am, and that I might hit them, and that I’m apparently refusing to put my arms somewhere safe. That would be frustrating. That would be scary.

I might feel like I had been set up to fail. If a teacher tells me to rest my arms on my desk, I might even be happy to do so, but I have to find them first. Only then I get in trouble for trying to find them. If I had no way to voice this to the people around me, I would almost certainly get so frustrated that I’d scream. If people pushed without understanding, it could easily move into a full-blown meltdown. And that would risk that people would believe that I am screaming or melting down because I don’t *want* to put my arms down, rather than because I am trying but not being given the opportunity to do so. Or trying but being punished because of what I have to do to try.

I feel lucky that I generally only lose myself by a few inches at a time. That twitching my wrists or fingers is often enough for me to keep a handle on where exactly I am in relation to myself. That the worst I have to deal with is being careful and watching my feet when I walk on uneven surfaces, and just sometimes tripping or banging my hands into things. I am able to communicate this to the people around me so that they are less likely to think I am simply being difficult when I can’t go quickly on the stairs or I keep banging into things on accident. Not everyone is as lucky as I am.

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Awkward!

Let’s talk about awkward moments.

They happen to everyone, as far as I know. (wait, that’s an assumption on my part. If you or anyone you know never has awkward moments, I want to get to know you! How do you do it?) Ok, aside from possibly-mythical, never awkward people, everyone has awkward moments. Some of us are lucky enough to have LOTS of awkward moments, or to even feel awkward all the bleeping time in certain social contexts.

In the first half of my life, awkwardness permeated more or less all of my social interactions. Good ones, bad ones, indifferent ones, all had SO MUCH of the awkward. Fixing my social skills to the point of not having so much awkwardness was a never-ending journey (still is, really), so eventually I went and found a way to deal with the awkward directly. It goes something like this:

*awkward moment happens*

“Boy, that was awkward!”

*move on to something else*

Simple as that.

I think ending here might make for an awkwardly short blog post. I know! I’ll make more words!

Ok, you know what is NOT in my script? Dwelling on how awkward that awkward moment was. My old script used to be more like this:

*awkward moment happens*

“Boy, that was awkward!”

*fidgeting*

“So… uhh…”

*awkward face*

Ack, what do I do now?! This is so awkward!

Ad infinitum.

Let me tell you, from way more experience than I’d like to have, that doesn’t work. Not at all. Now I think that awkwardness is some kind of cannibalistic monster that feeds on itself. Dwelling on the awkward just feeds that monster and makes it grow to ridiculous proportions. But a small awkward monster can even be cute, provided we make sure it stays small.

Thing is, awkwardness does not have to be horrible. Feeling shame about feeling awkward does not actually help me learn to not be awkward. It just helps me to feel SO AWKWARD in ways that get progressively more difficult to deal with.

So basically I have decided that:

1. awkwardness is ok and

2. it does not actually need very much of my attention

So far this method is working really well for me.

How do you deal with those moments of awkwardness?

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Boundaries (again)

creative commons image by amiruddin on flickr

I want to talk about boundaries again. Boundaries are important. Finding ways to express boundaries is important. Responding properly when someone has expressed a boundary – VERY important.

So here is a thing about me – I have trouble explicitly stating my boundaries. I think there are a couple reasons why.

I was raised as a female. In my experience, people who were raised with the expectation that they would become women are raised (at least in the US) to not be clear about their boundaries. Women (or people perceived as women) are typically punished for defending their own boundaries, which leads women (or people perceived or raised as women) to finding other ways to state their needs or desires or boundaries. It leads to being indirect, to phrasing requests as offers, to saying “hey, why don’t you do x?” when they mean “you are doing y and it’s causing me discomfort or worse, please do something else” and expecting the listener to understand that a thing phrased as an offer or a suggestion was actually a request. As I’ve written about before I have an intensely huge problem with this sort of behavior. I find it rude, though for some reason many people seem to believe that it qualifies as “nice” or “polite.” Anyway, regardless of how I view that sort of behavior, I was raised as a woman. I was taught that it’s wrong for me to explicitly state my boundaries.

On top of that, I was on the autism spectrum but undiagnosed. No one knew. There were things that caused me pain that people could not understand how it did, so they did not believe me. I was expected to do the things everyone else did, regardless of the impact it had on me. Sensory overload and can’t cope? Doesn’t matter, I still need to go along with everyone else, smile as though I’m having fun, act the way I’m expected to act. Failure to do so would result in scolding, judgement, and/or punishment, and this continued well into my adult life. Actually, it still continues, though far less so and mostly from people who are convinced that if I just try harder, I could be like them. Happily, I am now at a point in my life where I can mostly ignore those people.

The end result of these two things is that I really have a hard time simply stating my boundaries. However, it’s something I’m working really hard on as I want to be able to do so, and I think it’s wrong to expect people perceived as women to always be passive and indirect about their own needs. Also, I really want people to be direct with me about their boundaries. I HATE having to constantly reinterpret what people say and figure out what they really mean because they’re being indirect. I have actually been actively working on ways to deal with that that don’t leave me angry or resentful for indefinite periods of time (potential script I have yet to use but think might work: “That was phrased as an offer/suggestion. Was it actually an offer/suggestion, or was it really a request?”) Anyway, because I want people to be courteous enough to be direct with me, I’m trying to learn to be direct as well.

So. Let’s say I actually manage to direct state a boundary. Or really, let’s say anyone directly states a boundary. Or even indirectly (arg) states a boundary but you’re lucky enough to know what they mean. What do you do next?

Happily, the thing to do next is the same in ALL instances! It’s a lovely area that does not force me to have a lot of different answers based on small differences in context. The thing to do next is respect the boundary.

So simple! Someone says “here is my boundary.” Then you say “ok! I respect that boundary!” And then, you know, you don’t cross that line, whatever it happens to be. Now, maybe you don’t understand why that’s a boundary. Maybe it seems weird and pointless to you. The right answer is still to respect the boundary. DO NOT demand that the boundary be explained to you first. DO NOT choose to reject the boundary just because you don’t get it. DO NOT say that the boundary is wrong or should be changed.

Sometimes there will be a tricky situation is two people’s boundaries/needs/whatever conflict with each other. I don’t have a pat answer for that situation. All I can say is to negotiate. Respect each other’s needs, believe each other when they express their needs and/or boundaries, and try to work out the best way to accommodate both of you.

It should not be hard to just accept and respect the boundaries people state, but so often it seems that people don’t do that. It’s hard enough for me to just directly say “here is my boundary.” Coming back with “no, your boundary should be something else” is rude, entitled, and personally painful. Don’t do that crap, seriously.

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Being Proactive

In short: DO something.

 

An area of personal change that I have been slowly working on and changing my views about is in regards to being proactive with socializing.

My own tendency, for years now, has been to be extremely passive with how and when I socialize with people. My rationalization for this has been, roughly, if someone wants to say something to me, they will; if they want to know something, they’ll ask. Therefore, I should keep my mouth shut and wait for them to come to me. This made a whole lot of sense to me and I firmly maintained this justification, and my own passivity, for years.

Before I get into why this is terribly wrong, I want to explore a bit why this came about in the first place. I don’t think I was always like this. I used to talk to people much more freely, much more proactively, but eventually I stopped. I don’t really remember the change or any internal thoughts that happened along with it, but I imagine it was mostly due to messing up a lot, driving people away without understanding why, and eventually deciding that it would be a better idea to follow other people’s lead.

And in as much as it is, it made sense. I mean, it sort of worked. I spoke to far fewer people and my isolation continued to increase, but it involved a lot less of people getting angry with me and my not understanding why. It was just the usual story of getting ignored by all but those who were willing to get to know the shy person who didn’t talk much. And in a sense, it worked.

Unfortunately, this level of passivity is deeply problematic. I can justify it all I want by assuming that anyone who doesn’t talk to me must not want to talk to me, but in the end all I’m doing is refusing to take on any responsibility in my own social life. Instead, I put all the responsibility on everyone around me. That is not actually ok. It’s less scary, it hurts less when I don’t talk to people, but it isn’t fair to everyone else to make them responsible for my own social success. Nor is it fair to myself.

So I have been trying to change this. To be more proactive in talking to people and socializing and hanging out. And it is incredibly difficult, like wow.

One simple thing I have been working on is being able to walk up to people and talk to them. The main place I work on this is the barn on Tuesday nights, when I have my horseback riding lessons. I have slowly worked on making myself ask people questions and say things and not just stay in the metaphorical shadows. Because when it comes down to it, whether it’s right or not, most people will ignore someone in the shadows. Possibly because they might assume that if I keep to myself all the time, I must not want to talk to them. Which really, I must admit, is a reasonable assumption.

What’s sad is just how difficult and scary this is for me to do. I took weeks planning and working my way up to briefly talking to just one person (in my defense, that person is awesome but intimidating). Even after I decided that I was really going to work on it, it took me months and months to even be able to exchange a few sentences here and there with some people. And with other people, I try and get nothing. I say something, and they turn their back to me and talk to someone else. It hurts when that happens, and leads me to not want to try at all anymore. So I’m working on not talking to the people who clearly don’t want to talk to me, but still being proactive with the people who are positively responsive.

But that’s just talking when we’re all in the same place. The other main area that I need to work on is suggesting hanging out with friends. I pretty much never do this. I hate doing it, it terrifies me, and I tend to believe it’s presumptuous of me to bring it up. So instead I don’t bring it up. Instead I (once again) foist all the responsibility onto the other people involved and expect them to bring it up when they want to socialize with me.

Of course, that is not sustainable. Sometimes my friends will want me to be the one to bring up an idea, or suggest a time to be sociable, and it’s something that I do believe I should be doing. Yet the idea of it has been really scaring me. When I get around to doing so is probably going to be less about when I decide I want to socialize and more about when I work up the courage to bring it up. I have so many years of avoiding exactly this kind of behavior that actively trying to engage in it is remarkably challenging.

And it doesn’t help that some of my recent attempts are getting mixed results. I, very tentatively, asked another friend about socializing in a very open-ended way. It was very difficult for me to do so, and part of getting myself up to doing it involved some round-about wording. Sadly, it resulted in a minor scolding for that wording. Said friend wanted me to be more direct, and do less of asking permission. Which I understand and definitely want to work in that direction, but it does not feel very nice when an initial, scary, and challenging attempt results in criticism rather than congratulations. I intend to keep trying, but the difficulty is significant and so far not decreasing at all.

Ultimately, what I really want to say is that being proactive in my own life is important. I also think we need to be careful as to if we are teaching autistic children to be passive and compliant, or teaching them that they can and should have an active role in their own lives. And while being passive seemed like the best idea for a long time, I cannot deny it’s flaws any longer.

Still, this is going to be a long journey.

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Anxiety

If only panic always had a convenient button.

 

Along with being on the autism spectrum, I deal with both depression and anxiety.

I have found that depression mostly feels like a void. Depression comes in different flavors (sads and nothings being the two I hear of most often), but regardless of which flavor I am feeling at the time, it always feels like a void. Like some part of myself has just quietly ceased to exist and now there’s just a sucking void where it used to be, trying to pull the rest of me in.

Anxiety, on the other hand, feels more like an attack. I feel it almost like a presence, lodged somewhere in my chest and causing trouble. When it gets bad I sort of liken it to a giant bird claw, wrapped around or embedded in my chest, squeezing and stabbing and making it so I can’t breathe.

I can’t really objectively rate how bad my anxiety is. I was going to say it’s not that bad, but then I realized that there’s a good chance that anxiety has been a huge barrier in keeping me not-so-terribly functional, in certain socially expected ways. Sometimes I wonder if it would be better if I got on proper meds to deal with it. Or, well, I’m sure it would be better. Maybe it’s more that I wonder how much better it could get, and what that would look like. Hard to say, really.

Anyway. One thing about anxiety that I want to talk about is that it does not always look the way people seem to think it should look. I have found that if I talk about panic attacks, people will immediately assume that means screaming and flailing and running mindlessly down the street or something. Of course, I don’t know much about what panic attacks look like in other people so maybe that assumption is often true and I just don’t know it. However, it is really not true for me. I have, on more than one occasion, had a panic attack whilst astride a horse, during a horseback riding lesson.

Now, panicking while on a horse is really not the best thing to be doing. Horses are very sensitive to their riders, and pick up on even a little bit of tension. This isn’t a huge thing on a therapy horse, or even a horse for beginners. Therapy horses are chosen for being very very calm, and really not caring a whole lot if their rider is tense or moving in odd ways.

However, I hardly ever ride therapy horses anymore. I ride horses that are supposed to be very sensitive to what you’re doing, so that they will respond to subtle commands. A panic attack on one of these horses can be maybe not such a good thing. However, I panic quietly. Sufficiently quietly that my riding instructor, who is a special ed teacher, will not know that I’m having a panic attack unless I tell her. The horses I have been on, while certainly knowing that something was up, were always willing to let me take a break without causing trouble.

Because my panic attacks don’t look the way people seem to think panic attacks should.

I have found that people interpret my anxiety in all sorts of interesting ways. It’s fairly well known that shyness can look like snobbiness to people who don’t know what’s going on. What seems to be less known is that anxiety can also look like anger. When I was young, there were occasional incidents where I was very very scared. Not of anything in particular, just of lights or noise or having trouble processing what was happening around me – that sort of thing. Sometimes afterwards, people would tell me that I was angry. I, apparently, looked angry, sounded angry, and acted angry. This was very frustrating for me, because if I tried to explain that no, I’m not angry, I’m scared, the people around me would simply dismiss what I was saying and insist that no, it was anger. Sometimes people assumed that I was lying for some reason, and sometimes people assumed that I must not be self-aware enough to know what I was feeling.

The general assumption was clearly that whatever it looks like I’m feeling must reflect what I am actually feeling. Except that what you see is not always what you get, and what you see on my face does not necessarily reflect what’s going on inside. And anxiety does not necessarily look the way people expect it to.

Do you get anxiety? Does it look like what you’d expect to see on TV?

 

 

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