Category Archives: personal

Autism Questions

Since this is a post in which I talk about myself, have a selfie! I don’t actually take very many of these, so I am feeling very self-conscious.

Ok, so I THINK I found this list of #ActuallyAutistic questions around 4-5 years ago on tumblr, but I seriously do not remember any more details of where I found it or who may have created it. I am really at a loss here. In any case, I thought it might make a decent way to ooze back into this blogging thing, and if any of the questions really strike me I can always note them down to make a proper post about them some other time. If anyone knows where they came from or who wrote them, PLEASE let me know so I can properly cite them.

Anyway, let’s go. A bunch of questions about how I experience my autism. Woo!

1: Did you discover that you are autistic early or later in life? How do you think it affected you?

So at the time of writing this I am 39 and rapidly heading towards 40, just to give my answer some context. I got my first inkling that I might be on the autism spectrum when I was 18. I was officially diagnosed when I was 30. I spend the 12 years in-between pondering, wondering, thinking, analyzing, and having random people occasionally say “do you think you might have aspergers?” to me. I think it affected me in MANY ways, which I know I’ve written about in the past but might be worth writing about more. In brief, I was spared ABA but also no one knew what was wrong with me and it was basically all chalked up to personal failings on my part. 

2: Which terms and words do you prefer when talking about autism?

I am so very identity-first. English puts adjectives before nouns, so “autistic person” just makes linguistic sense.

3: Do you advocate for yourself and other autistic people?

Well, I used to have a blog I posted to weekly that I’m trying to get going again in some form. That’s about it, honestly. I mean, I guess I advocate for myself in my personal life (see: getting diagnosed as an adult, being trans, transitioning, etc) but that’s about it.

4: How did you find out about autism?

Honestly, I don’t remember. I think I first heard of it somewhere in the vicinity of 2000, pretty close to the same time the first person asked me if I might “have Aspergers.”

5: Do you have any autistic family members or autistic friends in real life?

Family members – not that I know of that are officially diagnosed, but it would not surprise me if certain family members were on the spectrum. Friends – yes. 

6: What, in your opinion, is your best autism-related quality?

My capacity to see and focus on details.

7: Which autistic trait gives you the most problems?

Sensory overload.

8: If you could get rid of one and only one autistic trait, would you do it and which would you choose?

See above.

9: Any autistic traits that you don’t have but wish you had?

I’m honestly not sure. The past few questions have already been difficult because I’m not used to breaking down being autistic for myself into specific traits. That said, it’s something I’ve done in the past so I had something to draw on. This one, though… I really don’t know.

10: What do you think about support labels as an alternative to functioning labels?

Ok, so I definitely am against functioning labels. I could go on a rant about “what IS functioning, really?” but I’m pretty confident I know the answer at this point: “functioning” is simply a measure of how well a person passes for NT. This might be worth elaborating on in the future, but yeah. People who look at me see someone who is high functioning because I pass for NT in brief interactions, but I can’t hold down a job, conversation is ridiculously complicated, group interactions with as few as three total people feel hopelessly complicated, I get overloaded in public spaces ridiculously easily, I could go on. 

ANYWAY. Support labels certainly do better at identifying something more concrete and practical than this idea of “functioning” but I worry about them also being used to separate autistic people into “respectable” or “not respectable” categories. I suppose that’s true for any label like that, though.

11: What, in your opinion, is the most ridiculous social protocol rule?

Ooh, this reminds me – I want to write a post about why small talk is actually useful and functional (oh no. now you can see that I don’t post in the same order that I write. In any case, I made that small talk post). I generally take the view that all social protocols are useful in some way, and my lack of understanding doesn’t say anything about the protocol itself. I know this sounds like I’m feeding into the deficit model of autism, so I want to be clear – I truly, sincerely wish that this was a stance that everyone took about just about everything. I am VERY TIRED of people using their lack of understanding something as a reason to state that the thing they don’t understand is wrong or bad. Like, you don’t have to understand why or how I’m trans or transness in general in order to accept that I am. 

12: What are your hypo- and hyper-sensitivities?

I’m hypersensitive to sounds and food textures. And clothing tags. And clothing texture. And smells. 

My sense of proprioception (the ability to tell where my body is in space) and my interoception (the sense of the internal state of my body – for instance, am I thirsty? Do I need to pee? etc) are definitely impaired.

13: What is/are your current special interest(s)?

Crafting. It’s always been crafting. I have other, more minor interests as well – for instance, I REALLY like bags. Hip bags, backpacks, purses, duffle bags, all sorts of bags, and I have very strong opinions on what makes a good bag. But mostly crafting.

14: What is your daily routine like?

Get up. Do hygiene things. Take care of the cats. Read stuff. Eat lunch. Do working stuff (this has meant different things at different times. Sometimes it’s crafting, sometimes it’s writing, I spent several years transcribing for the National Archives). Feed cats. Eat dinner. Craft while watching TV and hanging out with my nesting partner. Have alone wind-down time. Go to bed.

15: How do you stim?

I do some of the stereotypical ones like hand flapping and rocking. Sometimes I like to sorta snap my foot back and forth because I like how it makes my ankle feel. Other times I make popping or other noises in my mouth or throat. 

16: Is there any media with canon autistic character(s) you like and would recommend to other autistic people?

OK, so there was this TV show called “Miss Fisher’s Murder Mysteries” which is a murder mystery (obviously) show which takes place in 1920’s Australia. Episode 8 of Season 2 was called “The Blood of Juana the Mad” and featured a one-off autistic woman character who was VERY well-done. I mean VERY. She is never explicitly stated to be autistic in the episode itself, possibly because they are staying true to the time and autism hadn’t been identified as a thing at the time, but it is made extremely clear in the episode itself. Seriously, it was fabulous. Now I want to re-watch it.

17: Which characters do you headcanon as autistic and why?

I recently wrote a post about the general idea of headcanoning fictional characters as autistic and now I feel weird answering this question. In any case, Tina Belcher from Bob’s Burgers, for sure.

18: If you could make one accommodation universally available and 100% accepted, which would you choose?

Specifically an autism accommodation? I’d make public TV’s less prevalent. 

19: What, in your opinion, is the most ridiculous autism myth or stereotype?

Hrm. This is tough. Fair warning – I’m mostly answer these questions off the cuff, but some of them definitely deserve more thought than I’m giving them. In my defense – there are a lot of questions! Anyway, the first answer that comes to mind is the tendency of people to reduce all autistic people to a flat, 2D object. Now, that is not a myth or stereotype, and it is a thing that people do to any and all groups that are othered in society. Still, it’s the answer that came to mind first, so I’m going with it.

20: How would you describe autism to someone who knows nothing about it?

It’s like having a different operating system.

21: Do you have any happy autistic childhood memories?

I really enjoyed lining up my toys. Since no one pegged it as an autism thing, no one tried to stop me. It was just me being weird.

22: What, in your opinion, is the best thing about being autistic?

Even though I’m answering these totally off the cuff, I still skipped this one and am coming back to it. For some reason, the question itself is weirding me out and I really don’t know why. 

In any case, I guess it’s the fact that I have a unique perspective that people close to me have come to really value. I think differently, which gives me my own, atypical viewpoint, and that in and of itself has value. 

23: Do you think autism influences your identity, like your gender, sexuality, religious and political views or personality?

Just to nitpick part of this question – autism is absolutely part of my identity, along with my gender, sexuality, religious views, etc. Anyway, does autism influence those things? Absolutely, in that they are all enmeshed together into the entity that is Me. Also, there is a good chance that I will write posts in the future about the intersection of being trans and autistic, and see my old post about the intersection of being autistic and polyamorous.

24: Are there any internalized ableist ideas that you struggle with?

The idea that generating an income is what gives a person worth. (ooh, maybe this would make another blog topic)

25: Do you think we will achieve autism acceptance soon?

No. 

Maybe this could be another thing to elaborate on in a future post, but short answer? No, I really don’t.

26: Are you a no eye contact autistic or excessive eye contact autistic?

No eye contact.

27: Are you a “no food touching” autistic or “mesh all food up” autistic?

No food touching. One of the regular meals my family would make while I was growing up was a simple stew, and I always insisted on separating all the bits into their own piles, and then I would eat each pile one at a time. Once again, my family just saw it as me being really weird.

28: Are you a pretty rock collection autistic or soft stuffed animals collection autistic?

Stuffies collection. Can autistic people really be divided into this kind of binary? I like pretty rocks too, though admittedly I don’t really collect them.

29: Are you a get along with kids autistic or slightly afraid of kids autistic?

These binaries are getting weird. Also, I’m a ‘slightly afraid of kids’ autistic.

30: Are you a soft, gentle touches autistic or a deep pressure autistic?

LAST QUESTION! Oh boy, it’s another binary. 

Deep pressure. I seriously cannot handle soft touch. It hurts.

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The Power of Acceptance, OR I talk about my cat

This is Rye, having a breakthrough moment by being in my lap only a few days ago. There’s no way to know for sure, but it’s possible that this was the first time she has ever been in a lap at all.

I am a cat person. 

So just to explain more of where I’m coming from when I talk about my cats – I have four cats. My nesting partner and I prefer to adopt cats that are struggling to find homes, which means we do tend to gravitate towards cats who have, shall we say, emotional issues. One of those cats is Rye, a cat I initially adopted purely because nobody else wanted her because she was just too scared for anyone to want to deal with. She’s just not the kind of cat who’s a little shy at first but then you win over within an hour or two of being nice. She needed a home, I know how to deal with anxiety and I didn’t need her to be friends with me, so I provided her with a home.

Now onto the bragging part. In the years she’s been with me, she has absolutely blossomed. Her foster mom warned me that while she is sweet and lovely once she feels more comfortable, there are some things she would just never do. And I was ok with that! Well, as it turns out she is both sweet and loving, AND she has absolutely blown away all of my expectations of things she would never do. I mean, she sleeps on my bed at night, often choosing to sleep physically on top of me. I could fill a whole blog post about how she has come so far in her time with me but that’s not actually the point of this post so I’m going to try to move on.

Sometimes I brag about her on facebook to my friends because of how proud I am of her, and sometimes my friends will comment back about how patient I’ve been with her. I try to just accept the compliment that I’m sure they are intending, but it always feels weird to me. It recently struck me as to why that might be feeling so weird.

See, it seems to me that “being patient” implies that I’m waiting for something. Or, if we go by dictionary.com: “bearing provocation, annoyance, misfortune, delay, hardship, pain, etc., with fortitude and calm and without complaint, anger, or the like.”

Which is to say – I haven’t been patient with Rye at all. Even a little bit. I’m not waiting for anything from her, and I never was. I’m not bearing provocation, annoyance, misfortune, delay, hardship, pain, or whatever else AT ALL. Or at least, not from her (let’s be real, it’s been a rough time, just in general). 

Here’s the thing – I’ve never asked anything from her. I never wanted anything from her; not really. My goals for her, from the very beginning, were for her to feel safe and happy. That’s it. That’s all I wanted. I didn’t adopt her to be her bestie, I adopted her because I genuinely believed that I could provide her with a home in which she felt safe and happy. THAT’S IT. 

I knew that she was afraid, and I wanted her to be less afraid. But thing is, I can’t force that. So instead, I made the conscious and deliberate choice to follow her lead. She would tell me when she’s ready to try something new, and if she’s never ready, that’s ok too. I made the choice both to trust her, and to accept her for who she was AT THAT EXACT MOMENT IN TIME. Not an idea of what I wanted her to be – exactly who she was, as she presented herself to me. That’s it. No more, no less.

And you know what? IT WORKED. Better than I ever imagined.

When she first approached me to ask for pets, I was beyond astonished. I legitimately did not think that would ever happen. 

When I realized that she likes me, I was astonished again. 

This list could go on for a very long time, so let’s skip to the end. I’ve learned by now that I can never assume that she will never do something. She’s stomped on that assumption more than enough times by now that I’ve learned better. I mean, I can’t apply my own timeline to her – she will do things in her time and in her way. However, allowing her the freedom to choose her own timeline is what has given her the freedom and safety to expand her boundaries as much as she has. 

For years, I never asked ANYTHING of Rye. Literally nothing. Until recently, when she found a way to communicate to me that she likes me so much that she will do things purely because it makes me happy when she does them. (do you want me to go into what happened? I was about to write it out but then I remembered that this isn’t supposed to be a “brag about Rye” post) So now I will sometimes ask her for small things, specifically because it gives her the opportunity to show me that she cares.

She likes me. She trusts me. She feels safe and cared for with me. The reason for this is because I accepted her for who she is. I met her where she was, and I was willing and happy to stay with her there forever if that’s what was needed for her to feel safe. And because I met her where she was, because I didn’t need anything from her, because I trusted her to move at her own pace, she DID move. She has progressed so much more than I ever imagined, and I am absolutely certain that she never would have if I had demanded she be anything other than who and what she is. 

She doesn’t have to meet any timeline to be valid or for her progress to be real. She doesn’t have to conform to anyone’s idea of what a pet should be like to be a sweet and wonderful pet. My patience will never run out because in the end, the only goal is her safety and happiness, and we met that goal long ago. 

Everything else is just a bonus. And I love her for it. 

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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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