Playing Roles

I have always been a pretty big nerd. Looking back over my life, I’ve got Star Wars: check, Anime: check, Comic Books: check check check. This year, I decided to add another scoop of geek cred to my pile by doing something I’ve always wanted to try. Enter Dungeons and Dragons. It worked out that some friends of mine had been wanting to start a new game, and what better way to learn than with friends? I spent hours making my character. Seriously, his backstory is pages long. Since the best way I know how to do something new is to absorb all the information I can find on it, whir it up in my brain blender, and then make it my own by reassembling it, I took advantage of the almost 45 years worth of character building literature out there. I know his alignment (true neutral), I know his race (Tengu), I know about his family, I know how fast he is, I know his motivations. I also know that his name translates into ‘Garbage’ (his parents were clearly very cruel). I know so many things about him that I’m starting to feel really comfortable playing him. But I had a thought recently and I’m still mulling over it. If I’m playing Taaka, does that mean he’s autistic too?

 

One of the great things about Role Playing Games is that you get to be someone who is entirely unlike you. And I’ve found that to be really freeing. In real life, I’m definitely a rule follower. Granted the rules I follow are my own, and not always those accepted by society, but still, I usually follow rules regardless of what I want to do personally. This character is not like that. His short life has been hard, and he has no qualms about doing whatever is necessary to survive. So in that way, I can reconcile him being different from me; we have totally different backgrounds. I can imagine his past well enough to guess what he would do in a given situation. But what I’m not sure I can do is imagine what a neurotypical person would do. Life experience has proven that I’m not very good at predicting what a non-autistic person will think or do or say. So does that mean that my autism is coloring how my character experiences the world?

 

I think it comes down to the issue that often comes up when neurotypical writers try to write autistic characters: that even if they get past the stereotypes, they are still trying to understand the world in a way that is entirely foreign to them. It’s hard to teach someone to think in a different way. It’s why ABA doesn’t actually work. People can be taught to imitate the thoughts of others, but it’s sort of like learning a second language as an adult, you may get fluent, but you’ll never be a native speaker. So can I treat neurotypical as a second language of sorts? I spend most of my life scripting, and people learning languages rely heavily on that as well. I fake nonverbal communication, and language-learners fake accents.  In the beginning, they can probably only order coffee, find a train station, and count to twenty, and on bad days, that’s about all I can do too. So the major question is, are my neurotypical ‘skills’ enough to let my character be neurotypical? If I’m faking it, is he faking it? Is his big picture colored by my autistic lens?

 

I’m asking a lot of questions because this is the sort of philosophical thing that really gets stuck in my head. Mostly because I’ve spent such a large chunk of my life trying to observe and imitate other people. I’ve gotten good enough that sometimes, I can pass. Sometimes I can even understand the thought process behind what I’m doing (which let me tell you is so cool!). But neither of these things makes my brain any less autistic. It’s just like a native language, I think in autism, I dream in autism, and I communicate most organically in autism. Which has led me to the following conclusion: I can never truly play a neurotypical character because I’ve never lived a neurotypical life. I can research it, I can understand it, but in the end, my character will never be able to interact with his world in a truly neurotypical was because I can’t. It’s easy to play a character with a different alignment than you, with a different temperament than you, with a different religion than you. People play dragons and elves and gargoyles all the time. Hell, my character is a giant bird-man, and I manage that ok. I can pretend to have feathers and a beak, but I don’t think I’ll ever be able to pretend that the way my brain interprets the world can be anything less than autistic. So Taaka will have a small trace of my autism, and I think he’ll be better for it. Maybe my next character will actually be autistic. Or whatever they call autistic in Golarian. There are things about me that I can stop from translating to my fictional role, but I think it’s ok that autism isn’t one of them. I’m playing him as an Autistic Tengu Magus, and all three of those parts of him are important. Maybe not as important as him getting his hands on a bag of holding, but we all have priorities.

6 Word Stories pt.9

So basically the biggest thing I learned about myself this week is that I am now officially Old™. We went to a concert (on a Wednesday night. What sort of concert is on a Wednesday?), and doors opened at 7, so I figure, opening act is done by 8 at the latest, it’s a small venue, so we’re probably out of there by 10:30, right? Not right. The main act didn’t come on until after 10. I am usually very sleepy by 10. Luckily, it was a punk show, so between the dancing and singing and screaming, I stayed awake. Also, the show was definitely worth it, but I still hold my ground that going to bed at a reasonable hour is totally Punk Rock!

  • They like my special interest project!!!
  • Relieved to find a useful doctor.
  • Seeing bands is worth the overload.
  • Getting enough sleep is totally punk
  • Rainbow sprinkles make all things better
  • I handled unexpected guests surprisingly well
  • Too bad solving puzzles isn’t employable

What Do We Want? Language!

I was in my 20’s the first time I heard the word autism. I thought-hm, that sounds awful. And I didn’t really think about it again. It wasn’t until much later, when I learned about autism symptoms that I thought-that sounds like college, when I hid under my bed all the time and had to drop a class because I couldn’t find it. When I lost it every time someone burned popcorn and the alarm went off at 2 am and I couldn’t get back to sleep. Group projects were hell because I couldn’t figure out what my classmates wanted from me. All of these situations happened to me. I failed out of college. I knew my experiences weren’t typical, but without the words to describe what was happening to me, I didn’t know how to ask for help. I didn’t even know that I needed help. I didn’t get diagnosed with Autism Spectrum Disorder until I was 28. Lots of factors went into me being diagnosed so late in life. I am very book smart, which meant a lot of my social deficits were given a pass, especially since I have a strange knack for making people want to be friends with me. I also dropped out of school at the ripe old age of six, and was homeschooled until I went back to public school in the 6th grade. Homeschooling was great for my little autistic self, but not having teachers or guidance counselors around meant that no one realized that my quirks might be a part of something more. I knew I was weird. I knew I was different. So how did it take another twenty years for anything to be done?

The human race is obsessed with language. More precisely, they’re obsessed with communication. We teach gorillas and babies sign language so they can talk to us more easily. We’ve coded bots to learn language and communicate in ways that seems eerily close to Artificial Intelligence. So here’s the question. What happens when you give people language? And even more, what happens when you give people the language to talk about what’s happening to them? For me, the first step was not one of relief, or understanding, but one of confusion. How had I never encountered this before? How had not a single person in my life looked at me and saw these words? And lastly, and most importantly, how did these new words describe me so well?

From the professionals: sensory, sympathy/empathy, high functioning, theory of mind, ABA. From the brand new community I found online: stim, neurodiversity, ableism, samefood, hyper-empathy, Red Instead, identity first language.

My whole life,, I would all of a sudden seem to lose my words, especially when I was stressed. My wife and I tried to find the humor in what would otherwise be anxiety producing, so we turned it into charades. There’s a word for that you know: it’s nonverbal.

Another word I quickly learned was proprioceptive. Although it took me a bit longer to learn how to spell it. Proprioceptive is a sense, like sight or smell, and it measures where your body is in space. And since I’m heavily proprioceptive seeking, it’s really just a big word for I like roller coasters. And swings, and rolling down hills and spinning around in circles. So you see, all of these things already existed in my life. Everyone in my life knew about them. Meesh has quirks, and rules, and routines. That’s just who she is as a person. And I’m not saying that isn’t true. I’m a member of the ‘you can’t separate me from my autism’ camp, so yes, I believe all of my behaviors are because of who I am as a person. But I also believe that that makes it even more important for me to have the language to describe and discuss who I am and what I experience.

Of course I don’t mean just me. I don’t even mean just autistic people. Everyone deserves access to language that allows them to communicate effectively. Just like access to medical and clean water, it is a human right. Put simply, if the vocabulary exists for a person’s experience, than they should have access to it. And if one doesn’t exist, I’m all for making it up. I’m learning American Sign Language, and while I have the vocabulary of a preschooler, I’ve already encountered some words that are important to my life that don’t have signs. So, I made a few up. And honestly, in marginalized communities, this is how it works. An individual or a small group comes up with words that fill a space, and usually nothing happens. But sometimes. SOMETIMES. Something magic happens and the words spread and grow like a beanstalk and sometimes they change. But. The magic can’t happen if no one’s planting the seeds. So let’s all remember: We all need language to describe our experiences. Sometimes the words don’t exist yet, but it’s ok; making things up is how we grow. Vocabulary gives us power, and because of that, it is a human right. And lastly, I hope you use your preferred method of communication to empower yourself, and your community.

Autism is Me

“Can you tell me something about yourself?” If you got scared that this was a job interview, don’t worry. I just wanted to get you thinking about the things that make you, you. Go ahead, take your time. While you’re busy, I’ll tell you some things about me. I like to knit. My favorite animals are llamas. I hate bananas. I love playground swings. I’m very sarcastic. Ok, I’m done. Do you have a list sort of like mine? Now I want you to think of your list…and throw half of it away. That’s it. Half of who you are, all gone. How are you feeling? Hold that feeling in your heart while I tell you that that’s how I feel every time someone suggests that it would be better if I cured my Autism.

There are certain groups of people who are very vocal about how autism is some terrible ailment that needs to be cured. And oftentimes I’ve noticed, that these people are rarely autistic themselves. Family, friends, partners, I won’t deny that these people have a stake in what happens to autism. And autistic people like me are often told that they need to empathize with these people, recognize their struggles; even validate their experiences. Which sounds reasonable. Until you realize that their struggles and experiences have resulted in them wanting you dead.

Ok, maybe not DEAD dead. Not physically dead. But in ‘curing’ Autism, they’re removing every part of me that’s autistic. Take that away, and I’m not me anymore! My autism affects every part of who I am. It colors all my experiences. Look up at the things about me in the first paragraph. If you remove every trace of my autistic self, the only thing left is the llama bit. The llama bit is just hard wired into my brain. So the llama part survives. What then, am I losing? Knitting is gone, because I use the soft yarn and the rhythmic needle clicking as a stim. And bananas? The worst texture you could ever imagine. The smell is pretty offensive too. Swings engage my proprioceptive senses. And my sense of sarcasm? I rely heavily on scripting and mimicry to get by socially, and my dad is the most sarcastic guy you’ll ever meet.

I am proud to be autistic, so I try to embrace my strengths, and raise up my community. But I don’t want to give some idealistic impression of what goes on in my brain or my life. I can be proud of who I am. Autism or not. Embracing myself as a whole doesn’t mean that everything is perfect. Some things about autism suck. It sucks that to be accepted, I have to change the way I communicate, every time. It sucks that I have spend mental energy managing my sensory input. And it really sucks that sometimes I lose my words. I get stressed and all of a sudden the words in my head won’t come out of my mouth. These are all very legitimately terrible things. And while, when asked if I would take a magical Autism-B-Gone pill, my answer is an adamant NO, if given the choice to temporarily dull, or block some of these symptoms, I may, depending on the day, say yes. Just think, if I got to be the one to set the communication tone. If I could go see bright fireworks or loud concerts. If maybe my words could come out 100% of the time…

A lot of this is hypothetical. There is no magical autism erasing pill. Nor is there a symptom reduction/eradication pill. And as much as I hate speaking in hypotheticals, I’m doing it because this is an important topic, and it needs to be discussed. Not just by doctors or therapists or parents. Autistic people need to be a part of this conversation, because the future is coming. Magic pills are coming. And if we’re not actively discussing the morality of things like this, they’re going to become a reality before we know what to do with them. So please, neurodivergant types, make your voices heard; make people listen. And parents, partners, professionals. Just listen.

6 Word Stories pt. 6

If last week was a week of changes, this is a week of new things. New physical therapist, new volunteer opportunities, and new projects. I took a few days off from writing, partially because I didn’t have much ambition, and partially because I had some other stuff to do. Luckily, I had enough posts queued here so that taking a writing break wasn’t so bad. These stories are the only writing I do some days, and while I’m not in love with all of them, they’re still a record of my days, which is good enough.

  • Phone’s ringing. Ignore! Guilt. Sigh. Accept.
  • New physical therapist understands everything. Score!
  • Using person first language is uncomfortable.
  • Of course inanimate objects have feelings!
  • Doing self care requires self care.
  • Matching another person’s energy is exhausting.
  • Saturdays are for cartoons and crafts.

Signing off. Stay tuned next week for another episode of 6 Word Stories!

6 Word Stories pt. 5

Hello Internet, and welcome to the 5th edition of 6 word stories! I feel like this week has been full of changes. The weather’s getting colder (well, colder by St. Louis terms, which means mid 80’s), I’m getting a new class of Pre-K and Kindergartners in my Religious Education class at church, and I am getting more organized! This is a miracle in itself, but with a bullet journal, and a lot of help from Jess, I’m actually really starting to enjoy this being an organized adult thing. Maybe that’s why I’m on my 5th weeks straight of stories. And on that note, here they are!

  • Slimy lotion, slimy body, slimy feelings
  • Ideas stuck. Need a brain jump.
  • So excited I lost my words!
  • Giving me instructions? BE MORE SPECIFIC
  • I find peace in busy hands.
  • Need to learn to slow down.
  • On roller coasters, sensory issues drop.

(note: I’m unnecessarily proud of the pun it that last one. Because roller coasters drop, and so do issues! I swear I’m funny…)

Daily Prompt: Disobey

This is Disobeying 

To disobey is to go against an agreed upon rule and

Social rules make up most of our lives

So when I don’t make eye contact with you when we talk

This is disobeying.

Social rules are so deeply ingrained in society that

Most people aren’t even conscious of them

So when I have to ask what to do in a social situation

This is disobeying

It is a radical idea to suggest that

There is more than one way to communicate

So when my body language is made of up of stims

This is disobeying

To disobey is to challenge people’s perspectives

To disobey is to feel uncomfortable but keep going

To disobey is to celebrate your experiences

To disobey is to be okay with who you are

 

6 Word Stories pt. 4

It’s been a month! These stories are becoming part of my routine, which is really nice. I’ve always liked the idea of daily journaling, but have had trouble keeping up with one, mostly because I don’t have the time, but also because if it’s been a dull day and I have nothing to write, I feel pressured to fill the space anyway. This format is much more doable. Even if I stayed on the couch in my pajamas all day (everyone does that sometimes, right?), I could come up with 6 word about that.

In other exciting news, I’ve had a couple of submissions to my 6 Word Tumblr blog! It’s really exciting to know that people are reading and trying this on their own! If you want to check it out or submit your own, head over there! I hope people keep sharing- I think the whole thing is more diverse if it’s not just me rambling. Speaking of rambling, here are this week’s 6 Word Stories!

  • She He They. Pronouns are…complicated.
  • Look, I’m not stubborn, I’m autistic!
  • Break my routine, I’ll break you.
  • My piercing. My favorite stim. Gone.
  • Sent ableist article-Rant and ignore.
  • Recharge at home is way overdue.
  • Reorganizing is exciting, but everything’s wrong.

 

 

Stream of Consciousness

So WordPress does a Writing 101 in their “Blogging University” thing. Have you seen it? I tried out their first prompt, which challenged me to write nonstop for 20 minutes, creating a stream of consciousness piece. And then they suggested that I publish it. Which I immediately called BS on. No way was I going to let the world see something straight out of my brain. But after letting the idea sit (and consulting Jess to make sure it was readable) I decided to put it out there. So I present to you today, with only spell checking and structural edits (you’ll appreciate the paragraph breaks), here it is: My Brain on Writing.

This is a prompt to make me a better writer. I don’t need to be a better writer I think? I write like I talk, and that usually works out for me. But I need to write in a way people will like. Jess likes the way I write. She thinks I’m funny. And my therapist thinks that I explain things well. Autism things. She thinks that that is something that is unique to me, but I know a lot of wonderful autistic writers who explain things at least as well, if not better than me. And I wonder, that with all the great autistic writers, why most of the books out there about autism suck. Some of them suck because it’s a neurotypical person trying to explain autism for the masses. That’s an understandable reason for it to be bad. But I’ve also read books by autistic authors that are almost unreadable. At least that’s what I think. Neurotypical people seem to love them. I wonder where the editing moral line is there. You want these books to be reasonable to read, but you don’t want to get in the way of a neurodivergant writer.

I think I want to be published someday. I’d love to help explain autism to parents and researchers and educators in a way that they understand. Because if they don’t understand, things aren’t going to get better. So for the sake of autistic people to come, I’ve got to find a way. People like when you explain things to them in a personal way. So I add stories to my writing. I talk about my favorite blue bowl, and my love of roller coasters, and it makes people more comfortable, more relaxed, and more willing to listen to what I have to say. It makes they realize that I’m person. Which when you think about it is kind of terrible. If I was to stand in front of them, and just start talking, maybe hand them a flow chart, they’d be in the mindset of “wow, look at this girl with autism, she sure has a lot to say. It’s such a shame that what she’s saying is being distorted by her autism. If only she had the ability to present something that came from a more normal mindset.” Blah blah blah, white noise.

Eventually they’d stop listening. They’d shred up my flow chart with their bored hands. And nothing I had to say would get through. All they’d remember about me was autism. And I’m more than that. I have things to share. I am going to do everything I can to be an advocate for myself. Hopefully for other people too. Here’s my promise to myself. I’m going to write. I’m going to communicate with people in my community. I’m going to find a way to talk to professionals, and maybe even parents. I can volunteer with kids with disabilities. I can make stim toys, and coping skills tools. Maybe even find myself in a career. Prove that I don’t have to be more than my autism. That I AM my autism.

 

Crude but Effective

The ability to use language is deeply embedded in the history of autism. When the general public pictures an autistic person, they generally think of someone who is nonverbal. Or, thanks to popular culture, someone who is 100% literal 100% of the time, or someone who has no concept of sarcasm. Now don’t get me wrong, there are lots of people who experience one or more of these types of communication divergences, but to say that all autistic people experience all of these at the same time, or in the same way, is to have a very narrow view of an incredibly varied picture.

Communication is something your average person doesn’t think much about. They spend their days talking and writing and making subtle movements to their body, not even realizing that they’re doing it. And because they’re able to do all of this without thinking about it, they assume everyone else has the same experience. Which clearly is not the case. When you start communicating with autistic people, one thing becomes clear. There are lots of types of communication, and that everyone experiences them differently.

Let’s take a walk in my communication shoes. I tend to divide up my communication skills into categories. Which sounds complicated, but it’s not. (In case you were worrying.) Here’s the exhaustive list: verbal- the physical act of talking, nonverbal- facial expressions and body language, autistic nonverbal- flapping, bouncing, spinning, social- being polite and active in a conversation. Ok, so maybe I lied; it is a little complicated. But here’s the thing, if I wasn’t able to break down communication like this, the weight of trying to figure things out on the fly would ruin me. Because the act of communication is a profound drain on my energy sources.

I didn’t really think much about communication until I was a teenager. Somehow I lucked out and most of the people who I interacted with didn’t really mind that I socially awkward. It was nice. I didn’t really know about things like empathy or tone of voice, so I wasn’t trying to emulate it. Which meant I wasn’t exhausting myself every day. Ah childhood. I can chalk some of this up to poor theory of mind. Most people develop this when they’re very young. They seem to have an innate knowledge that other people think and feel and experience things differently than they do. I don’t have this. The idea that other people weren’t thinking exactly what I was thinking never even occurred to me until I was a teenager. And even then, the concept felt very foreign. It was bafflingly uncomfortable, and it forced me to accept that things between me and others were different. It forced me to realize that I was different. I processed this the way I process everything; through observation and analysis. And the more information I absorbed, the more the sheer amount of content began to pull me down. I felt the need to use this information to change how I interacted with people, and not for good reasons.

I know now that there are some types of communication that are worth me investing in, but it wasn’t always like this. At first, when I was learning about communication, I felt incredibly guilty. I felt like I was letting people down by not conforming to a standard form of communication. I reasoned that by not communicating in a “normal” way, I was lessening their experiences with me. I thought that it was my duty to put all my energy in to appearing like someone who was neurotypical, to ensure that other people would be more comfortable. I know now that that belief was unhelpful. I shouldn’t have to put all my energy into maintaining communication styles that aren’t natural for me. Now while making sure I’m polite is important (my autism isn’t an excuse for me to be mean), it isn’t my job to fake it 24/7. So what do I do now?

I’ve finally developed a system that works for me. It is at times crude, but effective. It reserves energy when needed, while still allowing me to communicate. My very logical brain has sorted communication skills into what I call programs. Sort of like a computer, communication skills are sorted into groups, with sort of loose guidelines for when I use them. My base programs are me naturally. They run intuitively, and I don’t even have to think about them. Its outputs are minimal. I’m often not very verbal, and when I do, my voice doesn’t modulate much. My only body language is stimming, and I don’t even try to fake body language. This is what I default to during a meltdown. It’s natural and low energy, but not very useful outside of the house. My politeness program is running most of the time. Being nice to others is important to me, and this program run in the background, and once I get it going, I don’t have to worry about it, unless a crisis occurs (in which case it drops, because I need its energy to deal with other things.) The upper level programs are more complicated. They’re more situation oriented, and take a lot of planning and energy to keep going. Not only do I have to suppress most of my natural communication, I have to replace it with things that I don’t really understand. I know they’re appropriate, but I’m not usually sure why. And everyone does this, to an extent. If you’re going into a job interview, you’ll use your most impressive vocabulary, and refrain from cursing. The difference is, in your case, that your base communication skills are mostly socially acceptable. My base communication involves a lot of repeating words and sign language, and jumping and spinning and flapping, and not looking at someone when they’re talking to me. And I’m pretty comfortable with this now. As long as I’m being polite, I let the rest of my individual communication shine through. And this has proven my teenage-self wrong. The majority of people I interact with regularly don’t really care. And even if they think it’s a bit weird at first, they quickly accept that this is just how I interact with people. This makes me incredibly lucky, I know, but I hope that the more types of communication people see, the more open they’ll be to normalizing all types. Verbal speech, nonverbal communication, sign language, stimming, AACs, all of these bring people together and they us share our experiences and our world. And how can that be a bad thing?