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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Franklin Institute Follow Up

A while back I wrote about an attempt to enjoy a sensory friendly day at the Franklin Institute, and how it turned out Very Badly. To sum it up, since it was over a month ago now, I went to what was billed a “sensory friendly Sunday” at the Franklin Institute. However, it turned out that “sensory friendly day” actually means “sensory friendly morning,” but this information is not necessarily readily available. It isn’t even listed on their website’s page about the event. When I had gone into the electronics exhibit, a large tesla coil went off and, well, that was that. It was painful and horrible and completely without warning.

However, a while after I wrote that post, I actually heard from the Assistant Director of Museum Programs from the Franklin Institute! I wrote back asking permission to share her email in my blog but never did hear back, so I guess I’ll just try to sum it up. Her email covered three basic points.

  1. I had complained in my post that there was only one sensory friendly day every two months, which is not much. She pointed out that there is a lot of demand and competition for different programs and events, and they are happy that they can offer as much as they can. And… point taken. Not exactly delightful to hear (it can sound a bit like “take what you can get and be grateful!”) but honestly, that is sorta where I am at the moment anyway. And it IS nice that they are making an effort – not everyone out there is.
  2. She agreed that the electricity exhibit is a problem. “It is an extremely sensory-unfriendly experience, and based on your feedback, we can begin a conversation internally of how to better inform guests of what they will experience.” That’s pretty awesome, and I hope eventually they are able to make improvements. Heck, I’d be happy to contribute to that conversation, assuming I’d even have anything to add or would be welcome.
  3. The next sensory friendly day (morning) is September 13th, which is only two weekends away. She expressed a hope that I would try again, and if so, email her so she could meet me in person!

That last point is the one that I am most bouncy about. Meet an official museum person? To maybe talk about museum stuff? And sensory stuff? just… wow! I haven’t solidly decided to do so yet, but I think I should. Going on my own is still really hard, but if I can find someone to haul along with me, I think I would really like to try.

I’m writing this for two reasons.

  1. This is pretty cool, and I wanted to share. Yay for hearing from a museum person!
  2. I want your thoughts. What do you think of the points raised? Do you think I should try to meet her? If I do, what sorts of things would you like me to remember or keep in mind or mention?

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Can we please have a conversation on this?

Ok, this is getting written just minutes before I am posting it, so this will probably be pretty rough. Let’s see how this goes.

I follow a woman named Caitlyn Doughty on youtube and on her blog. She is a mortician who talks about death, and grief, and burial practices, etc. She wants people to become more connected to death and grief and such, and is generally not in favor of how our current society generally tries to avoid such things. This is a really rough explanation, but I hope I’m getting the idea across. I really like her youtube series Ask A Mortician and generally support her ideals.

Now, there’s one thing in particular I want to focus on here. On her blog, she is talking about an “End of Life Option Act” currently in debate in California. She is strongly in favor of it, believing that people who are terminally ill should have the option to request medication to peacefully end their lives. Honestly, I can see her point. I would even go so far as to say I support the idea.

Only there’s another side to this. A disability side. A side where doctors (and others) will take it upon themselves to decide whether or not a severely disabled person’s life is worth living. This is a very dangerous and Not OK thing (and there are links out there about it; I’m sorry I don’t have any on hand right now). So in disability communities, often people are absolutely against Death With Dignity legislation, because of how it could easily be abused.

What I think needs to happen is for these two groups to have a conversation. Those who are in favor of things like the End of Life Option Act need to sit down and listen to the concerns of disabled individuals and find ways to address them. The concerns of the disability community are serious and entirely valid, and deserve to be heard.

Which is why, way back in February, I decided to give it a try. I went ahead and emailed Caitlyn via the email address given for Ask A Mortician on her website. This is what I emailed:

Hello. I am a big fan of your work, your book, your youtube channel, and your message of death positivity in general.
You recently posted a link to your facebook page talking about a landmark decision in Canada to allow two women to “die with dignity.” I support such legislation and am a big believer in people being able to take charge of their own deaths.
However, I also run in some circles that are strongly against such legislation. As such, I have a serious question for you. I know you cannot answer individual mail anymore, but I hope it is at least something you are keeping in mind as you do your work.
I am autistic, and am at least somewhat aware of disability issues. One of those issues is the extremely serious problem of doctors believing that disabled lives are not worth living, and doing things like pushing disabled people to not undergo life-saving treatment, or deliberately giving needed treatment so slowly that it does not do any good. One of the responses to this problem is to be against “death with dignity” legislation, under the idea that there is absolutely no way to enact this without leaving it open for abuse by doctors and caregivers of the severely disabled.
I like to believe that there is a way to cover both of these issues. So what I want to know is – as a proponent of death with dignity and such, how are you taking into account the other side of the coin, with the current and horrific problem of people in positions of power already concluding that disabled lives are not worth living, despite the fact that many of those disabled people feel very much so that their lives ARE worth living? What do you think is the best way to prevent abuse of “death with dignity” laws or rulings in the future?
Thank you
Andraya
Now, I knew getting a reply was unlikely. I’m sure she’s very busy with her projects and what’s going on in her life. However, I still found myself hoping that she would see this as a significant enough issue to address. That there would be some acknowledgement from her on how important it is to never decide for someone else whether or not their life is worth living. But, I suppose unsurprisingly, there has been nothing at all. And now she’s seeking support for this End of Life Option Act in California, and all I feel is sadness that the death with dignity people won’t bother to have a conversation with us.
As it is, I don’t think I can fully support death with dignity anymore. At least not until we can have this conversation that we really need to have, addressing the very real concerns regarding possible abuse by doctors. Being heard is important, and it hurts when it seems the concerns of disability activists are seen as irrelevant.
UPDATE: Not long after putting this post up, Order of the Good Death contacted me by email! It was mostly informational, adding some details that weren’t in the blog post about safeguards and such that exist to hopefully prevent abuse. Apparently that is also why they want to send it through the legislature rather than have it go by a ballot – those safeguards would probably be dropped if it went to a ballot measure. So these are the points that Order of the Good Death made regarding safeguards:
  • It allows only qualified, terminally ill and mentally competent adults to request and obtain a prescription from their physician for medication that the patient can self-administer to bring about a peaceful and humane death.  Two physicians must confirm the prognosis is terminal.
  • It requires two witnesses to attest that the request is voluntary.
  • It protects physicians from civil or criminal liability, and from professional disciplinary action, if they fulfill an eligible  individual’s request. Participation by doctors is fully voluntary.
  • It provides safeguards against any coercion of patients: It establishes felony penalties for coercing or forging a request; and it honors a patient’s right to rescind the request.

That the medication is to be self-administered is, I think, the point that I find the most important. I do not believe even these measures completely prevent possible abuse, but it does drastically reduce it.

Plus, I am both surprised and pleased that I was contacted at all. That’s pretty cool.

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“If you know you’re crazy, you aren’t”

I’ve heard that line a lot in my life. I grew up with it, I’ve heard it from all sides. When I questioned it, I learned that there are a lot of people out there who take that idea very seriously, and consider it some sort of absolute truth.

If you haven’t guessed already, I disagree.

Of course, a lot of this is about how you choose to define “crazy.” This is YET ANOTHER strange, nebulous term that’s difficult to pin down. There are so many.

See, I think a lot of people see crazy as some sort of absolute. You’re either *all the way* crazy and every tiny bit of sanity is utterly gone, or you’re sane. It’s one or the other, there are no in-betweens. I do not see it that way at all. Not one little bit.

So first of all, what is “crazy” anyway? The dictionary mentioned “insane” and “mentally deranged.” “Insane” is basically “not sane.” “Mentally deranged” is a little more interesting. It sounds really ominous (at least, it does to me), but then when I do to “deranged” it simply means “disordered, disarranged.” So crazy means being, in some way, not sane, or having some sort of mental disorder.

Now, “crazy” is definitely a word with some baggage on it (and by “some” I mean “a whole lot”). So I get that some people think they are being nice by trying to say that I’m not crazy, but actually they are totally invalidating me. See, I, along with a number of others dealing with mental health issues, want to reclaim this word. Crazy is a thing I get to call myself.

As for why… well, let’s look at depression. Depression lies. It lies really loudly. It lies with all the wit and intelligence you have, and will turn your own brain against you. My depression tells me that I’m worthless, that I’m horrible, that everyone hates me, that everything I do is pointless, that I’m a failure, and on and on and on. When I am seeing the world and myself through said depression, I am not seeing an accurate representation of reality. I am instead seeing the lies that depression is telling me. When my connection to reality gets damaged like that, I am crazy – I am not sane.

Now, I did once ask for an explanation of why we can’t be crazy if we know we’re crazy. The answer was “well if you know you’re crazy, you’ll stop.” This is just… I think it’s a really common thing people believe about mental illness, but that’s really not the way it works. REALLY REALLY REALLY. Changing a behavior, even if it’s really really obvious that the behavior is a problem, is actually incredibly hard. It’s why there’s a special branch of therapy all about changing behaviors. Changing thoughts is even more difficult. It takes work and focus and dedication to make even small changes to disordered thinking.

It is entirely possible for me to know that I am depressed and know that I am not seeing the world as it really is. That knowledge does not magically make the depression go away, nor does it magically make me see the world the way it really is. The knowledge does not fix mental illness anymore than knowledge that one’s leg is broken fixes the leg. All it does is let you know what you need help with. Once you know your leg is broken, you can go to a hospital, get it set and put in a cast, and then heal over time. If you don’t, your leg will certainly heal wrong, and if you don’t take good care of yourself during the healing process, that will also cause you problems. And with the broken leg being all out there, obviously broken, there’s a high probability that friends or family will help you if you need it.

Mental illness similarly needs help. You can’t just say “oh, I’m going to be better now” and have it happen. You need to see a professional. You need to get treatment. You need to take care of yourself. The fact that the problem is contained within your skull absolutely does not change this! If anything, help is even harder to get. People will tell you that you should be able to just get better on your own. People will calls medications a “crutch” (as though a crutch is a bad thing. aren’t crutches good when we have a broken leg?). Depression will tell you that you aren’t worth helping. Mania will tell you that you don’t need help. Anxiety will tell you that help is too scary. And seriously, when the lies are coming from inside your own head, they are really hard to ignore.

So basically – yes, you can know you’re crazy and have it be true. The basic knowledge that something is wrong does not suddenly make it better. So people, please stop saying this. It’s not really helping.

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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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Filed under personal, social skills