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.

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. 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.