Category Archives: personal

The Gruen Effect

I just recently read something about the Gruen Effect (or Gruen Transfer) that got me thinking about how I seem to work, and wondering if the Gruen Effect operates differently with autistic people.

So before I go any further, I want to ask you – what is it like when you go shopping? How well do you stick to your plan?

Ok, onwards to the post. First of all, let’s talk about this Gruen Effect thing. I actually remember learning about it (or, well, an aspect of it) in school back in the 90’s, but I guess until I was reminded of it I didn’t really think about it since. Basically, apparently when shopping, a fairly common thing to happen is to lose track of what one is shopping for, and grabbing extra things that one sees around. Stores now are often designed to encourage this and take advantage of it. When in school, the thing that my teachers talked about was specifically grocery stores – how they are designed in many different ways to manipulate your shopping experience and encourage impulse purchases. I don’t actually know how common it is for people to grab lots of extra things, but various things I’ve read seem to indicate that it happens a lot.

What I do know, though, is how I shop. And this Gruen thing does not seem to apply to me at all. AT ALL. When I go grocery shopping, I do need to bring a written list with me. However, this is because if I don’t, I just won’t get anything, or I’ll only get a very small number of things that I can remember we need, but anything I don’t remember I don’t get. And I don’t get extras.

When I do go in with a list, I ONLY get what’s on that list. I will, maybe, get some things not written that I simply know need to be gotten every week, so I feel less need to rely on the written list to get it. But otherwise, if we need something and I didn’t write it down, I don’t get it. This has actually happened to a fair extreme a few times. Sometimes we need milk, but I forgot to write it down. When going into the store, I might remember that I need to get milk, and make a mental note to get it. If I don’t write it down immediately, though, I ultimately won’t get milk. I will walk right past the huge, impossible to miss dairy display because I am so focused on my written list that I can’t remember anything else that I might need.

What’s really telling to me, though, is what happens when Nee and I go grocery shopping together, as opposed to me going on my own. When we go together, we wind up getting a LOT more than what was on the list. Nee will see things and go “hey, that looks good!” or “we could use this!” or “hey, let’s make a dinner out of that” or whatever else. Also of note, when I am alone I never, ever, grab myself impulse candy in the checkout aisle. When Nee is with me, I sometimes will, but generally only after Nee suggests it, or I watch Nee grab candy for themself.

Oh, and we do this in defiance of typical stereotypes, as I am female and Nee is male.

So that got me wondering if there’s something about me that means I operate differently. Maybe it’s an autistic thing. I couldn’t actually find anything in my initial googling, so I’m left to wonder. Which is why I’m asking you – how does shopping work for you?

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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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Autism changed my religion

I occasionally talk about autism and religion, but not very often. I tend to believe that religion is incredibly personal – my beliefs are mine alone, and I have no interest in convincing other people to believe what I believe. So while my diagnosis of Asperger’s Syndrome had a profound impact on my beliefs about self and soul, it kind of feels awkward to talk about it here. Nonetheless, I think I’m going to anyway.

So to go over the beginning – it all started with my diagnosis, then with my reading, as I do. I learned that autism is neurological – it’s in my brain. I read about a number of studies showing structural differences between autistic brains and neurotypical brains. To put it simply – autism is physical. It’s right there in the structure of the brain.

Then, not long after, I heard someone in my religious group talking about the (fairly typical, in my experience) religious belief of, basically, “you are your soul, you have a body.”

Suddenly I realized that this common belief, one I grew up with and did not really question, did not fit me anymore. I do not see my autism as something simply attached to me, like a body that a soul happens to be sitting in at the moment. Autism is intrinsic to who I am. Which means my body is intrinsic to who I am. I cannot separate the two anymore.

At first this just caused confusion and some level of angst. I looked for opinions from other people, but I was still struggling to put the concept into words. Also, I was friends with many atheists who simply didn’t believe in souls at all and took the questions as a “nature vs nurture” thing. That was not what I was trying to get at at all.

Now, just so I will hopefully not be too confusing – my beliefs are fluid. They have been ever since I went away from christianity and towards paganism. I have notice that many people find the fluidity of my beliefs confusing, as well as the peace I have made with the fact that what I believe now will change over time, not always in predictable ways. For me, a change in my beliefs is not painful, it is simply part of life.

One of the first major changes was moving from a transcendent view of reality – where the physical and the divine are separate, towards an immanent view of reality – where the physical and divine are together as one. Since I cannot separate myself from my body, perhaps I cannot actually separate my soul from my body either. Maybe that’s not how it works. Maybe I’m not some coherent soul going from body to body through rebirths, or into some kind of afterlife with a deity. But then, what am I?

Well, my body is almost like a wave of matter through time. I am made up of the matter and molecules that I consume (and convert), and those atoms and molecules and cells of my body are constantly rotating through. I am always losing molecules (for instance, the outer layer of skin flaking off, as it does, and my body generating new skin beneath, as it does), and I am always gaining new molecules through my food and drink. Yet while the matter itself is constantly coming and going, the structure of myself remains much, though not entirely, the same. My brain continues it’s autistic structure, my skeleton stays the way it is, my basic layout does not change.

So now I seem to believe that my “soul” (however much I believe in a soul) is much the same. It is simply the current iteration of “me,” made up of… well, I don’t know yet. The current collection of some small portion of all that is sacred and divine. What are souls made of anyway? I also seem to have some version of panentheism going on. Everything is god – including the gods (so yes, I am still a polytheist as well). Everything is sacred, everything carries a portion of the divine. The portion of me that is divine is, basically, my “soul.” And perhaps when I die, my soul will disperse into the greater universe the same way my body will decompose and return to the earth it came from.

All that change, from one little (huge) diagnosis.

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There is no wind in my sails

It’s about the Franklin Institute again.

As a quick refresher, a while back I went to the Franklin Institute on their Sensory Friendly Day. Long story short, it went badly. VERY badly. So I wrote about my bad experience and went on with my life.

Until, that is, Adrienne Kimball, listed on the website, emailed me about my blog post. You can read about that email over here. Basically, she addressed some points about the day, and invited me to go back to meet with her and talk about ways to improve the exhibits and better warn people about sensory-unfriendly areas. I thought this was pretty awesome, and decided to take her up on it.

But then… she ignored me. I tried to email her and set things up, and got absolutely nothing in reply. Since then I’ve felt… embarrassed, honestly. Like she lied to me and I was naive enough to believe the lies. I got my hopes up and thought that maybe, FINALLY, someone actually wanted to listen to autistic adults and hear what we have to say, but then it all turned to dust.

Now I feel like I’ve run out of gas. I’m just a foolish, naive aspie who has delusions of actually Doing Something Good. I’ve been trying to remind myself of the times when y’all have told me about how my writing has helped you, which is honestly WONDERFUL to hear, but I still feel really foolish about this whole museum thing. I’m trying to take a deep breath and keep going, but this feeling of being stalled isn’t going away. So I am doing what I do best, and writing about it.

What do you do when you hit something like this?

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When obsessing goes overboard

The image above is of my latchhooking project. It’s the biggest one I’ve ever done – I’ve been working on it for a month, and have at least another month of solid work to go. The day the image was taken, I had done 7,921 stitches and had 8,010 stitches to go. It’s HUGE.

I tend to obsess over my crafting projects. I know that I do this; I am prone to obsessing and I find it very pleasant to get consumed by a project for a month or two until I finish it. That said, until yesterday I did not know just how obsessed I get.

I actually haven’t written much for my blog in that time. I have either written off-the-cuff posts about things that were pressing right then or relied on pre-written posts in my slowly dwindling pending folder. The reason for this is that I’ve been latchhooking. All my “creating stuff” time is spent on that project.

Yesterday* was supposed to be different, though. See, my hands have been hurting. Constantly. For days. I had decided that it would be prudent to take a day off to give my hands a chance to heal.

It didn’t work.

I fidgeted, I flailed, I twitched, I browsed the internet, I watched TV, and eventually I picked up my project and started working. Over 400 stitches later I realized that I had done the opposite of taking a day off. I realized that my obsession seemed to be a wee bit out of my control. I had even kept putting it down, talking about how I meant to take the day off from it, and then picking it back up again.

The reason I am writing this post instead of working on my latchhook more is that last night Nee took it away from me,** because seriously my hands need some time off. Even typing hurts. I washed the dishes today, and that was downright painful. Yet still, it’s challenging for me to think about doing anything else. Even the act of writing this post is kind of a cheat – I’m writing about doing latchhooking, and about thinking of latchhooking.

All of which is to say, apparently I will obsess to the point that it will become an actual detriment to my health. I am 34 years old, and I still sometimes need someone to help me take care of myself, because overcoming an obsession to do something is incredibly challenging. My desire to work on my project is greater than my desire to not be in pain.

This is really quite an interesting learning experience here. I guess at some point I’m going to need to think up some strategies for balancing an obsession to do a craft, and taking care of myself.

Follow up: Ok, today is Wednesday. I am still not latchhooking. My hands are mostly better, but there is still one specific spot on one finger that continues to be painful. I’m thinking I’ll start back up again tomorrow, and anticipate getting consumed by the project once again. Hopefully my hands won’t complain too much.

* I wrote this post on Monday, but am posting it today.

** consensually. Nee does not try to dictate what I do with myself.

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The Dunning-Kruger Effect

So I do a lot of thinking about my social skills. I think about where they are now, I think about where they were in the past, I think about what I want to learn and where I hope I’ll be in the future.

One thing I notice when I look back is that I seem to have been subject to the Dunning-Kruger effect rather a lot.

So before I go further, let’s talk a little bit about what that actually is. Basically, it’s a form of cognitive bias where a person is both really terrible at something, while simultaneously being unaware of how terrible they are at that thing, even to the point of thinking they are good at it.

Apparently there are four main points in play here. Basically, someone who is really incompetent at something will often:

  1. fail to recognize their own lack of skill
  2. fail to recognize genuine skill in others
  3. fail to recognize the extremity of their inadequacy
  4. recognize and acknowledge their own lack of skill, IF they have been exposed to training for that skill

And… yep. That’s me in a nutshell, at least when it comes to social skills. In the past, I honestly had no idea I was so clueless in my ability to socialize, related to others, make conversation, etc. I even, at times, thought I was good at it (I wasn’t. oh gods, I really really wasn’t). I am increasingly finding that the more I learn, the more aware I become of being so utterly clueless, at least of anything beyond the basics.

I am sufficiently clueless that I don’t even know what good social skills actually look like. I mean, I can see some people are obviously socially successful, but I don’t know how to learn from their example or apply whatever they are doing to my own life. I cannot differentiate between good advice and bad advice. Socially speaking, I am extremely vulnerable and I always have been, just because of how much I don’t know. Sometimes I worry about being taken advantage of, because as soon as I am criticized in a social arena I will back off and apologize, no matter what. Because often, I did fuck up somehow and I just don’t know how. But it means that there could be times where I don’t fuck up, where someone else fucked up, and they can blame me anyways because I don’t know the difference. This is something that worries me, because I cannot make myself any less vulnerable than I am.

That it is so possible, so probable, so be so clueless of my own lack of skill really does worry me. So now I try to offset this effect by being as aware as possible of my own incompetence. It’s a lot easier to learn when I know I have a lot to learn and can remain open to said learning.

I’m honestly hoping at least a few of you will be able to relate to all this. And if you can’t, remember that this Dunning-Kruger effect is actually a thing. Which is to say, try to be patient with me, and maybe with others who are like me. I am trying, but it’s super hard.

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Processing

I am going to talk about processing speed YET AGAIN because things have happened in my life YET AGAIN to bring it up, though I suspect they will always happen for the rest of my life.

Before I get into that, though, I want to side track a little bit. I have gathered that one thing people like to read about is autistic perspective. Not only on specific issues and the life (though yes, that is important) but just how we see the world and what just existing is like for us. Which is kind of cool and I like sharing perspective, but is also challenging. I have lived in my own head for my whole life. I have spent exactly 0 years, 0 months, 0 days, 0 hours, 0 minutes, and 0 seconds living in anyone else’s head. So yes, I know all about my own perspective, but what I know much less about is how that is different from neurotypical perspective. There are some things I can figure out are different for me just by looking at behaviors and the like, but there are lots more that I only seem to know about when other people point them out. Sometimes they are expecting something from me that I consider absurd and in discussing it we both learn that it is easy for neurotypicals but difficult for me, or we’ll be having a conversation and I’ll just casually mention something in my head and they’ll respond “wow, that’s totally weird!” or whatever else.

When that happens, I write about it. This helps me to work through it since I do a lot of my processing via writing, and apparently it is useful for other people to read about in order to understand more about autistic perspective. Yay understanding!

So anyway, this is a thing that I have found happens fairly regularly. Sometimes with the same person, over and over and over again. I’ll explain what things are like for me and why I do things the way I do them and they’ll be all “oh, ok, I see” and then a few weeks or months later, it will come up AGAIN. And AGAIN and AGAIN and AGAIN. Yes, it has gotten a little tiresome for me.

It usually goes like this: someone says something that hits a button or a trigger or something, and I feel hurt. Then I process that for what is, apparently, a Very Long Time (it is not unusual for this process to take weeks). Eventually I bring it up and ask to talk about it, sometimes needing to refresh their memory on the matter since to them it is often ancient history already.

There are usually two phases of response to this, one which varies wildly and the other which is pretty consistent. The first is just their response to me saying I am hurt or upset about the thing. Ideally they will be willing to sit down and talk with me and listen to my perspective about why and how it was icky to me and we work it out (happily, that is what happened the most recent time. sometimes people get very resistant to working it out or hearing me out which is a problem in and of itself).

The next part is always, ALWAYS, about the fact that I “waited” so long to talk about it. Sometimes people get upset with me or accuse me or “bottling things up” or being stubborn or something, and other times people just request that I bring things up right away when something hurts or bothers me.

And then it’s all kinds of uncomfortable, because honestly, I cannot do that. I rather wish I could, it sounds like people would respond much better if I did. But that just really, seriously, is not how I work and I cannot make myself work that way.

Instead I have to process. First, I have to notice that I am upset. This is usually pretty quick, but when I was younger it could take a while. Then I have to connect that emotion to it’s cause – the thing someone said or did. Usually it starts off fairly broad (“something about that makes me feel icky”) and then I have to work through exactly what it is that tweaked me (“oh, this word hit this trigger so when they said these words I actually heard that message which may or may not actually be what they meant”). Then there is a period of working through what I feel and whether or not I can work through the upsetness on my own. If I can, I don’t bother to bring it up because it just doesn’t seem worth it. If I can’t, then yes, I’ll bring it up as a thing to talk about. This is not a quick process. If there is something going on in my life that is demanding my processing power, then it can take even longer.

To make it more specific – the most recent example of this was with my psychiatrist. We were talking about ativan and how I was sometimes tempted to take it while I was dealing with my cat Genzi’s cancer because of how overwhelming and stressful and awful it all was. In that conversation (which happened over email), at one point she mentioned that dealing with stuff like that builds resilience. This happened to hit a trigger of mine and tweaked me kinda hard. Weeks later, when we were meeting in person, I finally brought it up, saying:

In an email convo about ativan we had several weeks ago, you said “the act of coping through tough periods builds resilience.” Only I heard “you are weak and need to be stronger so that you can stop being weak!” I really hope that’s not what you meant and I know this is a trigger point for me, but I’m hoping you can give me more words to clarify and reassure me that’s not what you meant. Unless it is what you meant. In which case, maybe nevermind.

Then we talked about it. Yay! Turns out that weak thing was totally not what she meant, and I talked a little bit about how I have a very sensitive trigger there and how it hit that trigger. THEN she brought up the thing about how she wants me to just bring things up right away instead of “waiting.” *sigh*

I know I’m saying this over and over and over again. Autistic people in general are often saying this over and over and over again. But seriously – we need time to process. I often go more slowly than other people in conversations. I take more time to think through things, and I need more time to find my words. Sometimes a LOT more time. Sometimes weeks. It’s not because I’m “waiting” or “hiding things” or whatever else. It’s because it takes me a while.

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Polyamory and autism

I am polyamorous.

I don’t really talk about it on this blog because it’s not really part of its overall scope. However, the intersection of polyamory and autism is within the scope of my blog, so I am going to talk about it here. When it comes right down to it, there really don’t seem to be any spaces out there for talking about this particular intersection, so I need to make my own. I don’t claim that my experiences are universal – this is simply how autism and polyamory intersect for me.

So I got featured in the tumblr Poly Role Models and you can read my answers to the questions here. I was specifically chosen because someone was asking about being poly while autistic and a friend nominated me for that, as I am both poly and autistic.

Now I am attempting to write a follow-up, so I can get more into the intersection of poly and autism. Honestly, though, this is kind of tough for me. While I know the two do interact and being autistic impacts how I am polyamorous, sometimes it’s hard to see exactly how when I am in the middle of living it.

First of all, forming connections is hard for me. Really hard. I know that the usual response to this is to explain to me that everyone finds it challenging to make connections, but that is an awfully dismissive thing to say. A major (arguably *the* major) point of autism is that it is a social development delay. I am 34 years old, but I do not have the social development of a 34 year old. Socially speak, my skills are significantly behind my age. They always have been, and they always will be.

Poly, on the other hand, often demands significant emotional and social skills. Above and beyond simply making connections, there is managing how multiple intimate relationships will interact with each other, all sorts of emotional entanglements and responses and consequences, figuring out boundaries and making relationships without the typical benefit of pre-made relationship templates that most people learn in childhood.

Some of these are easier for me due to autism, and others are more difficult. Far more difficult. As I mention in my answers to the poly role model questions, the social templates for relationships have been easy for me to move away from. Or at least, easier than what I see in other people. For instance, many people (including poly people) seem to have an assumption that being in a relationship means sleeping in the same bed with your significant other. It’s so much a default that no one questions it. Yet in my (11 years and counting) relationship with Nee, we do not sleep in the same bed. We do not even sleep in the same bedroom. It is an unconventional way to do relationships, but it works for us so we do it.

Part of the reason for this is that I have a very strong need for a safe space that I can retreat to, that is mine and only mine. Even within my own home I need this. As such, I have my bedroom, and even Nee does not enter it without my explicit permission.

Now let’s talk about communication. In the poly world, there is a social norm of communicating all thoughts, feelings, desires, etc to the Nth degree. There is an expectation that things will be brought up immediately and processed via conversation. While I am poly in that I desire and multiple intimate relationships, this is a part of the overall poly culture that I fit in with very poorly.

In a recent post on my blog entitled “Disconnect and Effort” I speak some of my difficulty in having conversations.

“Simple” things like conversation also take intense effort. I constantly run things through in my head, trying to detect codes or metaphors, decode those codes or metaphors, figure out replies, and how to take the concept of the reply and turn it into words, and how to arrange those words so that they make sense, and how to arrange my facial expression in an appropriate way, and I have to do it all fast enough that the conversation seems normal to them. It’s HARD. Even when I can manage it, it is exhausting and sometimes downright painful.

Doing my emotional processing in the context of a conversation has always been disastrous. I simply cannot do it. Instead, I must defy the polyamorous social norms and do my processing internally, quietly, away from other people. I also must take time to do it – days or weeks or even months is my normal. It is only after I fully process that I can go ahead and talk about whatever it is that needed processing.

Sometimes people get upset with me under the idea that I kept things from them. The fact is, though, that when an issue is complex or difficult, I am often entirely unable to voice it until after I work through it for a while. Moving thoughts from their typical abstract form into a word-form can always be tricky, and in some situations it can take a good long time.

I also want to talk about the rest of the world a little bit. Now, it is very normal for your typical monogamous person to be very confused about polyamory, and I’m sure all polyamorous people have gotten icky comments from people who definitely Do Not Get It (several of which can be seen on this polyamory bingo card). Being both poly and autistic, with all the associated difficulty in developing any relationships at all, can get me my own kind of comments, on top of all the usual ones.

When people find out that I am both poly and autistic, particularly when they find out that I deeply struggle to form relationships, they tend to inform me that I should just be happy that I even managed one relationship because even that is more than many autistic people manage to do. They basically tell me that because I am autistic, I should not be poly. When they do, it tends to seem like they are simply telling me to know my place. That my place as an autistic person bars me from more involved forms of relating, and I shouldn’t even try. This is so hurtful, but I have yet to find any neurotypical spaces where I can be safe from this kind of commentary. Any time I out myself as both poly and autistic, this is the sort of comment I fear.

Returning to poly social norms, there is also the issue of poly social spaces. I used to try to be active in poly communities, both online and IRL. What I found was a community that was extremely unwelcoming, and at times outright hostile, to mental illness and neurological differences. The general concept that people like me should know our place existed there too, with the idea that people who struggle with mental issues just shouldn’t be poly. With so much speaking out in favor of getting away from monogamous norms and getting off the relationship escalator and whatnot, I was sometimes shocked at their narrow acceptance of neurology. I often felt hurt at things I saw and how some individuals treated me and the overall attitudes I saw towards neurodiversity, and eventually I just gave up. I no longer go into poly spaces, as they are decidedly unsafe for me. (of course, there is also the point that the poly community often has issues with otherness in general, being largely white, middle aged, middle class, and abled, but that is getting outside the scope of this post)

I know that autism makes things about being polyamorous more difficult for me. Sometimes in inherent ways (like communication and connection) and sometimes in social ways (the ways people treat this intersection). The fact of the matter is that intimate relationships are important to me. Real, deep, human connection, however difficult it is for me to form, is important to me. I am poly because it is the best description for how I approach love and relationships.

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Disconnect and Effort

Sometimes (a lot of times) (all the time) I feel like there is a vast gulf between me and the rest of humanity. Or at least neurotypical humanity, which seems to be most of them. I’m sure there are many reasons I feel such a disconnect – I am not silly enough to try to claim there is only one “real” reason that is the cause of it all. That said, I think I have figured out one of the reasons I feel such a disconnect.

That reason lies in the effort it takes me to socialize. When it comes down to it, very nearly all human interaction requires HUGE effort on my part. It is extremely normal for me to spend all of my resources managing social interaction to the point of complete and utter exhaustion that requires over 24 hours to recover from. This is the life I live, and it will never change. Going to a religious observance or a LARP takes literally everything I have.

“Simple” things like conversation also take intense effort. I constantly run things through in my head, trying to detect codes or metaphors, decode those codes or metaphors, figure out replies, and how to take the concept of the reply and turn it into words, and how to arrange those words so that they make sense, and how to arrange my facial expression in an appropriate way, and I have to do it all fast enough that the conversation seems normal to them. It’s HARD. Even when I can manage it, it is exhausting and sometimes downright painful.

While I like to socialize one-on-one, even that is often extremely draining. The demands of conversation, of facial expression, of managing the constant bombardment of PERSONNESS that is right there all wears on me. It’s a lot of effort. It’s work.

But the primary point I am trying to make here is that putting lots of effort into socialization and friendship and even just acquaintanceship is normal to me. It’s standard. It’s just what I need to do if I’m going to interact with people.

And here’s the important part – it’s NOT normal to neurotypicals. I think in much of my past I kinda knew that, but it didn’t really sink in. I would ask for a level of effort from other people that was really only a fraction of the effort I put in all the time, and the response would be anger! How dare I ask so much from them! Nor has this been a one-off occurrence. While the response is not always anger, I have definitely gathered over the years that asking people to put in even some of the effort I put in is just asking too much. It’s being unreasonable and demanding.

Sometimes people will speak of putting in lots of effort. And I get confused, because at the very least, what I see is still less, or maybe equivalent to, my standard effort in socialization. I’ll wind up thinking something like “that is a special effort? but I do more work every time we interact.”

I know that socialization isn’t necessarily easy for neurotypicals. “We all find it hard” would be a very predictable but extremely horrible response to this post. Yes, we all find it hard. What I hope you can take from this is that I find it *much harder* than your average neurotypical. I have learned to no longer be shocked when a neurotypical can go to a LARP, and then go do a thing the next day. I cannot. I probably never will.

So yeah. I feel a disconnect. I’m over here and y’all are so far away, sometimes I think it’s no wonder I can’t bridge that gap. And neurotypicals have so many people who are so near, I suppose it is not surprising that most of them have no interest in doing the work required to build a bridge and meet in the middle. (on a side note, neurotypicals have also told me that I should not try to connect with other autistic people, because autistic people would be too rigid and I need people who can flex to my autistic weirdnesses, or something like that. apparently I’m doomed)

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My Anxiety Metaphor

Creative commons image of window by Gary McNair on flickr

Image is of a window, looking out onto countryside.

I can’t remember if I’ve actually spelled out this particular metaphor I use for my anxiety before, but I thought I’d give a post to it. Now, anxiety can be described in a lot of different ways. This metaphor is not designed to cover ALL of it, but is a way for me to conceptualize what it’s like to try to do a thing that is triggering anxiety.

Basically, it’s like I have a wall in front of me, with a window in it. The window has some transparent material in it, but I have no idea what that material is. Nor do I have any way to find out, outside of just running straight at it and flinging myself at it. This is, of course, a risky activity, but for the most part it is the only method I have for doing things which make me nervous.

What happens next can generally be categorized in three different ways.

  1. I find out the window was made of shatter glass. When I fling myself at it I go straight through, with no more than a few little scratches. I can keep on running and do what I wanted to do. YAY! This is a victory! The obstacle was not a big deal, and I was able to run right through it!
  2. The window turns out to be made of regular glass. I still get through it, but I get very damaged in the process. Cuts, lacerations, bleeding, pain, overall badness. In this scenario, I can generally still suck it up at least for a little while to do whatever it was I was going to do, but I require a lot of recovery time and self-care afterwards.
  3. It’s plexiglass. Or transparent aluminum. Or something along those lines. Instead of getting through, I bounce off and get a concussion or broken bones in the process. Lots of damage, lots of care required after to recover, and no ability to keep going. In literal terms, this means I got a panic attack or had a meltdown.

The hard part is that the lead-up to all three of these outcomes feels the same, which is why I cannot predict which outcome I will get. At least, not from the lead-up. Deciding whether or not to fling myself at the window is a matter of weighing possibilities and risks. If I’ve done a thing several times before and it’s window has been consistent, I’ll be able to figure that the window will probably (though not definitely) be the same again. So, for instance, a window in front of me when I’m horseback riding is probably shatter glass and I can just go right through it. A window when I’m about to enter in some form of group socialization has a high probability of being plexiglass.

A lot of times, though, I really don’t know. I have to decide if it’s worth the risk to fling myself at it, and if I decide that it is, go for it. It’s also worth noting – waiting for the wall to go away so that I have an obstacle-free path ahead of me is not an option. The wall will never, ever go away. Choosing to wait until I “feel better” is just the same as choosing to not do the thing. As such, I do not have that particular option – I can either try to do the thing, or not do it at all (and if it is an option for you, then you are very fortunate).

My anxiety meds have changed the game, but not necessarily in the way I thought they would. I had thought that I wouldn’t get those walls anymore, but I guess my meds can’t fix me THAT much. I still get them. I still have to leap through windows, hoping they won’t hurt me. The major difference is that now, there is an extremely high probability that the window is made of shatter glass. And the more I leap through windows and find myself ok, the easier it is for me to keep leaping through windows. My chest still squeezes, my heart still thumps, my breath still speeds up, but then I’m ok.

Of course, I still hit plexiglass once in a while. I don’t think anything will take that out of my life completely. But for those instances, I have yet another med – a more hardcore anti-anxiety that is only to be used situationally, if I need it. The tricky part is that I gather I should take it before I actually hit the plexiglass, but it is very difficult for me to tell ahead of time what it’s going to be. But there are still some situations (hello, group socializing!) that are likely to have the worst of the obstacles in their way, so I try to remember to use it for that.

And that, dear readers, is what anxiety is like for me.

Do you use a metaphor for your anxiety? Or depression or other thing that impacts your life? I’d love to read about it if you do, please comment and share if you are comfortable doing so!

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