4 Feelings That Suck

Sometimes you just feel like crap. Such is the human experience. I think that the goal of life should be making sure that good things are the majority, and the crappy things are the minority. But even if your life is mostly good, even if your feelings are largely positive- some of them still suck.

This post isn’t about changing these feeling. That’s a totally different post. This is just acknowledging that feeling like this are real, they exist, and that they are universal.

Plus, I find screaming into the void to be very therapeutic sometimes.

1. Getting lost: Realizing that you’re lost immediately turns you back into a 5 year old. All of a sudden, everything around you is 10 times taller and you’ve shrunk like Alice after she drank that potion. I get lost a lot. I’m not ashamed to admit it. Between having a terrible internal compass and stopping every 5 feet to touch something shiny, I’m a pain to shop with- just ask my wife. She always finds me eventually, but not before the panic that I’ll never see her, my home, or anything familiar, ever again sets in.

Honorable Mention for being lost in a more existential way as well. That also sucks.

2. Losing a special interest- I don’t know about you, but I’ve had special interests for as long as I can remember. And with the exception of Star Wars, none of them have lasted. And sometimes that’s ok. When a special interest gently fades to the back of your brain, it’s like it’s lived a good life, and now it’s time for it to go. Especially if it’s making way for something new. But there are other times. Times when you realize that something you love is being pulled away from you, and while you desperately try to hold on, all you can do is watch as it slips away. For me, I spend so much time with my special interest, that losing them is like losing a constant companion.

Honorable Mention for accidently gaining a special interest that you didn’t want. That also sucks.

3. Everyone understanding something but you: Smile and nod, just smile and nod. Because in situations where for whatever reason everyone knows what to do except you, you’ve got to fake it. How do the public collectively know what to do in these situations anyway? I find being in social situations like this comparable to everyone in the room doing a dance that you don’t know- usually I compare it to the Macarena- and they’re all having too much fun dancing to explain to you what’s going on. So instead you mentally beating yourself up for being too dumb to do something that everyone else can easily do, you tell yourself over and over that you don’t belong, and you’ll never to try again, because this feeling isn’t worth it.

Honorable Mention for spelling something wrong for years. That also sucks.

4. Being Misunderstood: Communication is hard for everyone, but I know that since I sometimes communicate in a somewhat non-standard way, I seem to run into misunderstandings more often than most. There’s nothing worse than getting halfway through an interaction, and then realizing that you’re having two different conversations, or realizing that you’re not being understood at all. Besides being really frustrating, it’s often guilt inducing, knowing that you’re bringing your best communication game, and it’s still not working. It’s like you’re grabbing at a possibility to connect, and you’re just missing it.

Honorable Mention for having your tone of voice be misinterpreted. That also sucks.

So this one was a bit of a…downer. Sorry.

I hope you know that I’m not trying to imply that these feeling are always present, or that wallowing or over-analyzing is the way to go.

I know that I’ve found it therapeutically useful to recognize when I feel like this, and acknowledge it, so it can pass. I also know that when I can share them with people who might have similar experiences, it can turn feels that suck into feelings of connection.

So go! Watch your favorite show, hang out with your favorite people, pet a puppy! Hell, pet 10 puppies.

Take good care of yourselves.

Judgeypants

Anyone who knows me well will tell you that I’m a bit judgey. Not in a bad way, I don’t judge peoples’ character- just their actions. These days at least. I will fully admit that as a child, I was pretty terrible. And it all comes down to one thing: Theory of mind.

This topic is one that that comes up a lot in the Autism discussion, and tends to be highly debated. Some professionals believe that Autistic people don’t have it at all, while others argue that it, like many other autism symptoms, exists on a spectrum. This is what I’m inclined to believe as well.

The way Theory of Mind is explained is when someone has Theory of Mind, they know that other people have thoughts and feeling different than their own. So, just because I’m feeling sad, doesn’t mean the person next to me is also sad. Neurotypical children develop this skill at about four years old, and oh boy can I tell you, I definitely did not know anything like this when I was four. Or five. Or ten or twenty.

Let’s just call me what I was- a judgeypants. I judged everything everyone did, mostly because they were doing things that I didn’t like. Let’s just pop in to my kindergarten aged brain for a moment. At that age, I despised bananas. I still do, but that’s not the point. So if someone’s eating a banana next to me, I’m disgusted. I can see the texture, I can smell that pungent banana smell, and I feel one thing. Hate. My heart is bursting with banana hate, but my brain however, is beginning to judge. Bananas are terrible. Why would this person eat something that they hated so much? This was a question that I couldn’t answer, and it brought forth the judgements.

Do you see where I went wrong? It’s pretty obvious now, but back then, it never crossed my mind that someone could have different opinions than me. So what was I supposed to think? The way I was observing the world, people kept doing things they hated, eating things they hated, and the worst part, they didn’t even have the gall to act like they hated it! Or so I felt. That was all intertwined at that point.

Embarrassingly, no one challenged me on the difference between My feelings and Their feelings until I was in my twenties. I use the word challenged because the idea had been mentioned before, but I had elected to ignore it, because it confused me. Which is pretty much how I dealt with things up through my mid-twenties. I don’t suggest it.

For me, even thinking about Theory of Mind related things kind of hurts my brain. Logically, I know that everyone’s brain’s work differently, and that my thoughts are unique to me, but it takes me that extra step to get to that knowledge. I regularly have to remind myself to remember what the other person might be thinking. And at first, I had to do this every time I talked to someone. Anytime one of us expressed a feeling or an opinion, I had to say “Self, don’t forget that they’re their own person.” Every. Single. Time. Thank goodness, if you do this long enough, it becomes pretty automatic, and on top of that, you start being able to recognize that feeling, that internal judgeypants feeling bubbling up and you’re able to respond to it before it becomes an external judgeypants situation.

There’s an activity that tests for Theory of Mind, called the Sally-Ann Test, if you want to look it up, and it is the most frustrating thing in the world for me. I’ve taken it on my own, and with a psychologist, and even though I know what the right answer is, I can’t stop my brain from picking the wrong one. I know the answer! How dare my brain make me wrong! I suppose that shows the strength of Theory of Mind; even when you’re right, you’re wrong.

I feel like most professionals looks at Theory of Mind as an interesting tidbit of Autism, and they don’t acknowledge the huge effect that it has on social abilities. Children especially use play to practice social skills, and knowing that other people think and feel differently than you is like the number one social skill. It’s a skill that gets more important the older you get, at least in my experience. One thing I’ve realized about myself is that I am very intolerant people feeling differently than me. Not so much in a difference of opinion, but if I’m angry and no one else around me is, it makes me almost irrationally upset, because I spent the first twenty-some-odd years of my life assuming that everyone felt like I did.

While it’s hard to keep myself from having that immediate reaction, I’ve gotten much better at not letting it alter my actions. I do this by drawing on my innately curious nature, and challenge myself every time to tell myself a story about what they might be thinking. Of why they might be thinking that. Using one of my favorite autism coping skills, “Turn It Into A Puzzle”, I not only get to practice thinking about other peoples’ internal processes, but I also get to explore why I’m feeling what I’m feeling.

So, am I still a judgeypants? It could be said that since I’m able to recognize and quickly shut down my judgments, that I have shed my judgey ways. But I think I would argue otherwise. My argument would that judgment is not inherently harmful, and that used correctly, can even be a positive. I see my judgeypants status as making a good thing out of a not so good thing. Which in my experience, is what being autistic is all about. So I’ll shout it from a mountain top. I’m Curious. I’m Autistic. And I. Am. JUDGEYPANTS.

4 Autism Stereotypes I fit and 4 I don’t 

So if you missed my Monday post, let me fill you in. In a one sentence summary, I talked about the harmful effects of stereotypes, and the importance of positive representation. I’m a little biased I suppose, but I think it was a pretty good essay. In writing it, it got me thinking about which autism stereotypes I fit, and which ones are definitely not me. It was actually really interesting. If you’re up for a session of introspective self awareness, I highly suggest it!

Do Fit:

1. Autistic people can’t live independently: The last time I lived alone was my first semester of college, all the way back in 2005. To say that it went badly was an understatement. I spend most of my time hiding under my bed, I forgot to eat, and I had to drop a class because I just plain couldn’t find it. Thank goodness I met my wife that first semester. Even when we were just dating, she had an innate talent for recognizing how she could assist me. She’s been called my interpreter to the world, and I think that’s one hundred percent accurate. But still, my caseworker has advised her not to leave me alone for more than 24 hours. If everything went exactly to plan, I’d be fine, but if something went wrong, if my routine was messed with, we can could end up in a position where I forget to eat or go to the bathroom. I’m working on independence in Occupational Therapy, but right now, it’s not my strong suit.

2. Autistic people sit in corners and rock: Ok, so it’s not always in a corner, but I am totally a rocker. Interestingly, I have different rocks for different things. If I’m rocking side to side, there’s no need to worry, because it usually means I’m just bored. If I’m rocking front to back though, that’s problematic. It means I’m overstimulated or that I’m about to melt down. Luckily, there’s are several people who can interpret my rocks and intervene if necessary.

3. Autistic people connect more to animals/object than people: Ask my wife to tell you the story of the time she threw away my shoe-box. It was early in our relationship, and she hadn’t yet experienced all of the autistic quirks that I come with. She threw away the box from my new shoes, and I sobbed. For two hours. I felt so guilty that they might think that I didn’t believe they could live up to their potential. So clearly, I experience hyper empathy with inanimate objects. And it’s not just your standard ‘my stuffed animals have feelings ‘ (they do!), even statues and cardboard boxes have feelings. My favorite street sign’s name is Oliver and I say hi every time I pass him!

4. Autistic people don’t make eye contact: So there are a lot of people who would say that this answer isn’t accurate. That I do make eye contact. In fact, they saw me do it last week, and am I sure I’m really autistic? I know I’d break their tiny little neurotypical hearts if I told them that every time they think I’m making eye contact with them, I’m just staring at the bridge of their nose. This knowledge might destroy their fragile little minds. All this being said, I can make eye contact. But it’s not intuitive, and reminding myself to do it every 10 seconds takes up a lot of energy. It’s also a bit uncomfortable for me, so I only really do it with people I know really well. Since they know me as well as I know them, they don’t find the sporadic eye contact weird. They’re just happy that it’s genuine.

Don’t fit:

1. Autistic people don’t have friends: I considered myself very lucky because I’ve never experienced bullying. Or if I have, I didn’t realize that’s what it was. This is a viable option, I’m not the most observant when it comes to social stuff. But as unaware as I am about socializing, I have always had friends. Granted, I’ve never been the one to start the friendship. The pattern in my life has been, an outgoing and extroverted person decides they want to be friends with me, and initiated contact frequently enough that eventually it becomes part of my routine, and a friendship forms. On top of being extroverted, many of these people have a talent that I wish more people had- the ability to accept that my social skills are atypical and my connections hard won, but they are still good. It may be difficult to be my friend sometimes, but there are upsides too.

2. Autistic people are savants/intellectually disabled: For whatever reason, people have a tendency to think that autistic people have either very high IQs, or very low IQs. The idea of an average autistic is almost as much of a white whale as the idea of an autistic adult. This sort of makes sense to me. Autistic people are only of interest if there’s something different about them. Which is totally unfair to those of who haven’t been given the Hollywood treatment. Autistic savants are rare, and are not even a little bit like the one’s shown in movies like Rain Man. And intellectual disabilities have been separated from developmental ones for decades now. Essentially, some people do have both, but a majority only have one or the other. I test well (the tests are mostly puzzles, and I love puzzles!), but my IQ doesn’t measure my social abilities, my ability to live independently, or my mental health. This is a problem that diagnostic professional are still working on, but since we won’t get any new changes until the DSM-6 comes out, we’ll just have to advocate for ourselves.

3. Autistic people have no sense of humor: In my opinion, very few autistic people fit this stereotype. Even if someone’s humor isn’t exactly your standard fair, it’s still considered humor! That people said, some types of humor are more accessible than others. Sarcasm can be hard for some people, not just autistic people either! It require tracking and recognizing a lot of different communication queues, which takes time. There’s definitely been times where I realized something was sarcasm 15 minutes after the fact; it took me that long to put it all together. I definitely use humor in my day to day communication. It often makes more sense to me than small talk and other types of interaction. Not to mention, making someone laugh is a really good feeling! Especially with people I know really well, being able to target their sense of humor makes me feel connected.

4. Autistic people are suffering- I am not suffering. No matter what certain organizations would lead you to believe. Are that parts of autism that are painful? Yes. Frustrating? Double Yes. Confusing? Triple Yes. But those aren’t autism things, those are life things. And when I say these things, there are always people who will pop and and say “Well you don’t count. You’re not one of THOSE people with autism (note the use of person first language. Ugh.) You’re not one of those poor souls who can’t speak or communicate of wipe their ass or love their poor suffering parents. They think this because they’re not looking at this from a neurodiverse viewpoint. Speaking is not the only way of communicating, and I can only speak from my own experience, but when I need assistance with things, it doesn’t feel like suffering. It’s just the way things are. Some autistic people may feel like they’re suffering. And that is their experience, and it’s a thousand percent valid. But I’ve been the way I am for 29 years, and my life is my life. It has its ups and downs. And downs don’t necessarily mean suffering. At least not for me.

 

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.

A Cloak of Many Layers

A Cloak of Many Layers

Everyone wears a cloak. It is a necessary skill to survive in our society. ‘What do you mean I’m cloaked?’ you say. ‘I’m the most genuine person I know!’ I’m sure that’s true, but tell me honestly, last week at the grocery store, when the cashier asked how you were doing, did you tell her that you were running on 3 hours on sleep and had run out of coffee, or did you say you were fine? I understand why people do this sort of thing. They say they’re just being polite, but the real answer is that they’re more concerned about society running smoothly than they are about making connections. I have very little patience for this. If someone asks how I’m doing, I tell them. I have to pee. I’m too hot. I’m exhausted, thank you for asking. This is partially because my brain compels me to take words at face value, instead of how they’re intended. The other part of it is that cloaking myself requires huge amounts of energy, so I only do if for things that I deem important. And trying to figure out if the receptionist at my doctor’s office ACTUALLY wants to know how I am, or if they’re just being polite, is not important.

I also think that we all have different levels of cloaking. The difference between telling someone you’re fine when you’re not, telling your neighbor how much you loved his cookies, even though they were burned, these are minor level cloaking. They may fall under what people call a white lie. Doing this doesn’t take much energy for most people, and there’s very little chance anyone is going to get hurt. Then you move up to mid-level cloaking, pretending you know how to do something at work when you don’t. You forgot a baggie and you dog poops in the neighbor’s yard, and you ignore it even though you’re a good person. These sorts of cloaks could get you in some trouble, but people do them every day anyway. They hide parts of their personalities to make their day smoother, even if they might be consequences. These things are common, and potentially harmful, but they’re nothing like the ultimate cloak. These are the blackout curtains of cloaks. Pretending your drink is a rum and coke instead of just a coke because none of your work friends know you’re sober. Convincing a friend to go with you as your ‘date’ to the family Thanksgiving with you so Aunt Susan won’t tease you about being a lesbian, especially because she doesn’t know that you are one. This sort of cloak is incredibly harmful. It damages your relationships and it makes your life a lie. There are reasons for these cloaks. We wouldn’t use them if they weren’t helpful. But helpful doesn’t mean healthy.

I’m not claiming that I don’t use cloaks. Scripting is a cloak, I’m saying what I’ve memorized instead of what I mean. So is mirroring. Instead of using my own flappy, rocky, twirly body language, I just mimic someone else’s. I look at the bridge of someone’s nose approximately once every 12 seconds, so they think I’m making eye contact. And I follow their topic of conversation, even though I’ve been bored since the first minute. Once someone goes from acquaintance to friend, I drop off a layer of cloaks. There are benefits and disadvantages for both of us. I get harder for them to read, because my body language and facial expressions and eye contacts aren’t natural for them anymore. But they gain my enthusiasm when we talk about things that interest me. I get more energy since I’m not busy cloaking, and I actually get to connect with people that I like. Downside for me is since they’re having trouble reading me, their responses are less predictable. Which is an acceptable consequence. I think at least parts of this experience are universal, just like cloaks. People act differently with their family than their friends, their friends from their coworkers, their coworkers from strangers. And I’m not trying to convince anyone that cloaks are bad. They’re necessary. But what I do think is that being aware of the cloaks that you wear, and maybe being willing to step outside of your comfort cloaks, may lead you to experiences and connects that positively affect your life. Why not, right?

5 Things I Wish I Knew Were Autism Things

So I’ve been getting the urge to branch out from my twice a week posting schedule. Not that I don’t enjoy writing essay or putting together my 6 Word Stories from the week, but I guess I’ve been wanted something a little more…fun. I always enjoy when people make lists. It’s kind of a cool way to get to know them. And I think I’m going to give it a try. So going forward, I declare Wednesdays List Days! I’m aiming for a mix of Autism and non Autism stuff, although to be honest, most of the things I write end up with a tinge of Autism anyway. I plan on opening the comments up so people can add their own stuff to the list. It seems like it’ll be more fun if it’s not just me talking out into the void. But please don’t feel any pressure! Also, if you have ideas for topics, bring ’em! I figure I’ll run out of topics eventually anyway. So here they are:

5 Things I Wish I Knew Were Autism Things

-Getting Lost: I am terrible with directions. I once managed to get myself lost in the monkey house at the zoo for 45 minutes. Not even GPS can help me. My first semester of college, I had to drop a class because I couldn’t reliably find it. From what I can tell, no one’s really sure why Autistic people have a tendency to get lost, but it’s very common in our community.

-Not Being Able to Make Lists: My wife has a super power. She can take any situation, any task, any problem, and make a plan to solve it. No matter how big, no matter how steps it takes, give her a pen, paper, and 10 minutes, and she’s ready to approach it. I however, cannot figure out how to make cereal. The process of breaking a task down into steps is so foreign, that I don’t even know where to start. This is a common experience with Executive Dysfunction, and for me it involves post-it notes all of the place in hopes that one day they’ll be useful.

-Being a Picky Eater: I fought this for a very long time. ‘I love Indian food!’ I thought. ‘But I put hot sauce on everything!’, I can’t be a picky eater! But looking deep into my heart, I know that I’m incredibly texture sensitive, I make other people taste new dishes so they can describe them to me, and I will argue to the death that real Cheerios are NOT the same as the store brand ones. There is a word for this: ARFID. It’s listed as a type of eating disorder. And my therapist is ok with not pushing me as long as my diet stays varied and healthy.

-Touching EVERYTHING: I am very slow when shopping. It’s partially because of medical issues, partially because I’m slightly overwhelmed, and partially because I have to touch all the new and exciting things. I love walking through the towel section at Target, and the yarn aisle at Michael’s. This makes sense, as I am hypo-sensitive to touch. I crave spiky pine cones and microfiber cloths and pulling dried glue off my fingers.

-Repeating Things: I am not the best communicator. If I don’t have a script for it, I’m usually anxious about what to say. I am also a pop culture junkie. This totally works for me, because between movies and tv shows, I have a wealth of scripts! On bad communication days, I can go hours only reciting lines from various sources of media. Besides using these things as scripts, it’s also a form of echolalia. So not only is the repeating satisfying, it also helps me connect. I’d call that a win win!

So that’s it! I’d love to here if anyone else has any of these too!

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.