6 Word Stories pt. 27

So it’s been awhile… And the worst part is, it’s not like I haven’t been writing my 6 word stories, it’s just that two weeks in a row, I bolted up out of a dead sleep at about 2am on Saturday morning realizing that I haven’t written a blog post. I then immediately fall back asleep, which is less than useful.

I’ve had a long couple of weeks. I started physical therapy, which makes my POTS flare, which means I’m ‘fall asleep sitting up’ exhausted. My heart rate is also in the 150’s which makes me feel like I’ve had 5 shots of espresso one after the other. Luckily, I found a glut of gardening shows on Netflix, so I can just lie on the couch and stare at the TV when necessary.

So with the whole ‘skipping two weeks of posts’ thing, I’m going to leave you with The Best Of March’s Stories. Thanks for reading!

  • I started today with negative spoons.
  • Oh where has my ambition gone?
  • So tired. I blame Daylight Savings.
  • A thousand earplugs are not enough.
  • After too much socializing, it’s naptime.
  • Just for today, I’m not overthinking.
  • It’s hard to describe my feelings.

Well there we go! My last few weeks in 42 words. Sorry for the missed week, but if you ever feel like you’re in 6 Word Story withdrawal, my Tumblr blog, 6 Word Autism is updated daily!

Hope you all have a great first week of Spring!

6 Word Stories pt.21

Surgery was successful! Do you know what this means? I’ll shut up about hospitals and doctors and incisions for a whole month!! Which is when my next surgery is…Anyway, I was able to predict most of the autism related surgery issues, like smelly funny from antibacterial soap, and the itchiness of the bandages, but the one thing I’ve struggled with most is that I’m exhausted and drugged, but my brain is bored. And bored autistic brain is the worst.

  • Betadine gives me Oompa Loompa skin
  • Which is worse, infection or showering?
  • I discovered a new favorite food!
  • You can’t write with no words
  • Too tired to read, what now?
  • Making good slime is so rewarding
  • Why are some relationships so complicated?

That’s all for today folks, I’m off to take another nap.

What I Talk About When I Talk About Hygiene

Let me be real here. Hygiene is not a topic that I like to talk about. I’m embarrassed; it’s one of the least talked about social skills, yet the one you’ll be judged most for not complying with. I have spent my entire life battling with hygiene, mostly because the barriers to success are twofold. One, what is considered hygienic is highly dependent on the society, and two, the majority of activities that are categorized as hygiene are very sensory heavy.

My current cleaning challenges are not new. Since I was very young, I’ve had an aversion to things that had, what I called, ‘slimy’ textures. There’s even proof! Home video exists of an adorably toddler me, fighting with my mom about sunscreen. It wasn’t a tantrum, no, in true me fashion, I slowly back away, grunting and flapping. Interestingly, that’s still my reaction to lotion.

The minute I was old enough to not require supervised bathing, I began looking for solutions limit my exposure to it. Baths made me feel slimy, and showering got my face wet, no matter how hard I tried to avoid it. I did learn quickly that if I turned on the shower and then sat in the bathroom reading for 20 minutes or so, no one really questioned whether I actually got IN the shower or not. On top of that, my biracial hair, while not as porous as my father’s, only needed to be washed every few weeks. Which was good, because when it was long, most of the way down my back, it took at least 24 hours to dry. If I was lucky. Since then I’ve perfected the ideal balance of waiting just long enough to shower. My hair is also very short, so it can remain unwashed almost indefinitely.

In high school I solved another hygiene problem- I hate wearing clean clothes. The smell of detergent, even scentless, is unpleasant, and while most people love putting on crisp clean clothes, I vastly prefer putting on something that I’ve worn for days. Or weeks. Turns out, everyone in their teens is going through their smelly puberty phase, no matter how much body spray they put on to cover it, and if you wear jeans and a hoodie every day, no one can really tell how often you’re changing them. Teenagers can be very self-centered. Thank goodness.

Becoming an adult brings new hygiene expectations, and I struggled to meet them. Working with kids meant that it was acceptable to wear comfortable clothes, but being socially acceptably hygienic was a puzzle. What was the maximum length of time between showers that I could get away with? Would my fuzzy curls give away the fact that they weren’t being washed? And worst of all, would the kids give me away by informing me at the top of their lungs that I was smelly?

 Autistic Burnout and mental health issues plagued my twenties. Which was bad for my career, but good for my hygiene preferences. When you never leave the house, showering, teeth brushing, and changing your clothes suddenly become unnecessary. Granted, having a very understanding spouse it in this situation is important too. While my wife definitely encouraged me, constantly, it seemed, she was very understanding of my reasons for not conforming to social cleaning standards. Plus, she was amazing at taking stubborn tags out of clothes. We also made deals, if I showered, I had to put on clean clothes (even socks!) and if we were leaving the house, deodorant was necessary. Even I couldn’t deny that it was reasonable.

An autism diagnosis changes a lot of thing. A lot. So many things start to make sense, and for me, hygiene was a big one. Framing my many issues as sensory problems suddenly made them more understandable. I don’t like water on my face because of how it makes my skin feel. I despise brushing my teeth not only because the toothpaste tastes terrible, but also because it makes the surface of my teeth feel different. Changing clothes had to do with things smelling different, and also with the texture of the cloth changing. Seeing it all this was made me feel less guilty about not caring about societal expectations.

Occupational Therapy did not begin pleasantly. There were so many things that I wanted to work on, and all my OT wanted to talk about was hygiene. We had sticker charts, we made routines and schedules, we even devised a reward system for when I made my hygiene goals. Most of these flopped. Luckily, my occupational therapist, who knows me so well at this point that its infuriating, realized that forcing these changes on me without delving into what the base issues were was useless. This is still a work in progress. Clearly.

I spend a lot of time explaining the way that I think. How autism affects who I am as a person, and how I live my life. That’s not what I’m talking about here. I’m putting my struggles out there, specifically because it’s not something I can really explain. Yes, I know that the issues are sensory based, but there’s no reason why enacting small changes should be so hard for me. These issues have existed my whole life. I’ve spent my whole life trying to minimize my contact with cleanliness. Even this doesn’t explain my problems. Two steps forward, one step back. Sometimes two steps back. Sometimes three. I fear that I will be fighting this thing for the rest of my life. I fear that no amount of stickers, or rewards, or distractions will decrease the stress I experience on my scheduled teeth brushing day. I fear that it’s not worth it. Is it worth it?

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?

6 Word Stories pt.8

When I wrote a lot of these stories, I was having a really terrible week. (I’m slightly ahead on these, so they’re coming to you about a week late). Navigating relationships are hard enough when you’re autistic, that when a disagreement turns into a fight, there are no scripts to use. Especially when you’re feeling angry and betrayed. I don’t know if this friendship can be saved or not, there’s no previous experience for me to pull from. I guess I’ll just have to wait and see.

  • Hanging out tomorrow, I’m already anxious
  • Plans cancelled. Change sucks, still relieved.
  • I wish I handled stress better.
  • Feeling so betrayed by ableist friend.
  • Why aren’t there guidelines for boundaries?
  • Marriage perks: really great pressure hugs!
  • Committee meetings make me feel dumb.

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.