Posted in Adulting, Blogging, Condo, Mental Health, Pictures of things that make me happy, Random, Writing Challenges

NanoPoblano2020: Day 13

Posted on by Controlled Chaos

This gorgeous tile work is part of the backsplash above my bathroom sink. It is one of things that I fell in love with when we were first looking at our condo. I hope that you’ll bear with me as I use this photo as a backdrop for a little bit more serious of a post than what I’ve been doing for most of this month.

Ra Avis over at Rarasaur blog did a post a couple of days ago that got me thinking. She chronicled a few of the things that she deals with after having suffered a series of mini strokes about a year and a half ago.

I have not suffered any mini strokes, what I deal with is minor compared to what she deals with. But I was able relate on some extremely small level.

I am Autistic. I made this discovery (that I’ve always known on some level) a little more than a year ago. I am also on several medications for extreme anxiety. The medications help to keep the anxiety at bay (for the most part) but they also do not so great things to my memory, which in itself is anxiety inducing…

Anyway, to the point of this post.

I am a creature of habit.

Literally.

I figure out a routine for how to do something, and that’s how I do it forever and ever from then on… (Seriously, people will make fun of me for my routines and how precise they are) Until something forces me to change that routine.

Change throws me into chaos. I don’t know how to deal with it. Until I am able to establish a new routine I am the furthest thing from a happy camper.

If I am in the middle of a routine and someone decides to help me and things end up getting done “out of order” I become lost and angry with the person who helped me, even though I know that my anger is unfair.

If I am in the middle of a routine and I get interrupted, I can quite literally have no idea how to proceed.

Here’s a real life example that has happened to me more than once. I am in the process of getting ready to brush my teeth (that’s where the photo above ties in) and something distracts/interrupts me. I turn my attention back to trying to get the toothpaste from the tube to the toothbrush and I have no idea how to make it happen.

I brush my teeth twice a day, everyday. I know how to brush my teeth.

Except when I suddenly don’t anymore because I stopped in the middle of my routine and I don’t know how to proceed. I don’t know which hand does what, how to hold things.

I am lost, scared and confused.

I sometimes have to start over from the beginning so that muscle memory can kick in and I can proceed.

Most people don’t know that I’m Autistic. Some people would catagorize my Autism as “mild”. I hate those sort of labels. I have learned how to appear neurotypical by masking and routines, but how my Autism effects me is anything but mild.

My routines are how I pretend to be a fully functioning adult.

Without them, I am left holding a tube of toothpaste with no idea what to do next.

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19 thoughts on “NanoPoblano2020: Day 13”

  2. I feel like anything that is not neurotypical has only a binary classification- it’s either a yes or a no. Saying someone has “mild autism” is every bit as useful as saying someone is “mildly pregnant.” I have no medical training though, so this is strictly uninformed opinion.

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  3. Yeah it sucks when you are high functioning because no one has any empathy for what you are really going through because it isn’t obvious. In fact, I often get the opposite of care when I try to explain how difficult some things are for me, like a suck it up sort of attitude. 😦 I have never been formally diagnosed, but I am SO on the spectrum. The more I learn the more I understand.

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    1. Or considered “high functioning” anyway, because no one sees what it’s like when no one is around. The labels are really more about how our autism effects/impacts others, it has nothing to do with how it actually effects us.

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        1. I have sound and light sensitivities. Leaf blowers are one of the banes of my existence along with florescent lights. I actually use fairy lights as my main source of light in the main room of my condo. The main lights are nice and look pretty, but they are too harsh for me. My sense of touch is also heightened, so I have issues with certain textures. When helping my husband shop for new tee-shirts I can tell him which “softest fabric ever” is actually softer between brands. (Spoiler alert: none of them are actually all that soft though… LOL)

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          1. Funny, I too like low light, and natural light. Bright light also bothers me. I don’t think I have ever known anyone with the same sensitivities that I have. It’s nice to not feel so alone. 🙂

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            1. It took me until a little more than a year ago (when I realized I was Autistic) before I realized that I had actual sensitivities. Before that it was just kind of “We really don’t need this much light, do we?” Or “Lower light levels are better for being able to see the TV anyway.” But then I thought back and I’ve *always* been like this, I just never really realized it.

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  4. I get this. My routines are not just precious to me, they are necessary. On my post, where I talk about writing lists and how hard they are to manage given my current post-stroke state, the most common advice I get is to just stop writing lists. But I honestly have no idea how to live a day without one. I would just stay in bed. I write and re-write my lists every day because it’s part of my process.

    As to relative size of problems, well, hurt is hurt, pain is pain, confusion is confusion. Mine might be a more sparkly or odd-shaped obstacle, but an obstacle is an obstacle is an obstacle. 🙂

    There was some other thought I had but I keep going back over the post and can’t find it so just… *hugs* ❤

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    1. Yes, I absolutely need all of the lists and alarms and calendar appointments that I have on my phone. I need my day to have a certain rhythm to it or I become stuck. When someone takes away my next step in my routine because they’re trying to help, I get lost. It helps to know why someone stepping in to help can send me in a tailspin, because before I always thought that I was being too picky or that I was being irrational.

      I knew that you would understand that I wasn’t trying to compare our issues, or compete for who has the most confusion. (What a silly competition that would be!) That you would understand that your post sparked something in me and I needed to share it. Because I think that the more people that understand why routines are important and how having a routine interrupted can effect someone, the better everything will be.

      If the thought that’s currently hiding in some corner of your brain comes back to you at some point, you know multiple places to find me, until then *hugs* right back at you. ❤️

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  5. Wow, thanks for sharing something so personal. Being in education, and learning how autism affects you on a personal level puts my view of “mild” into perspective. How do you suppose we go about relabeling “mild,” “moderate,” and “severe” without probing personally into students’ lives?

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    1. Personally, I’m all for getting rid of the labels altogether. Autism is a spectrum, not a gradient. What I struggle with can change from day to day. My biggest recommendation would be to just listen to the people you know who are on the spectrum. Let them tell you what accomodations they need that particular day. Believe their lived experiences over whatever the “experts” are saying at the time. And most of all, don’t try to “fix” us or “cure” us. Our brains simply work differently, there’s nothing in need of curing.

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      1. Thank you for responding so quickly. I will take these recommendations to heart. After reading your recommendations, they sound like common sense that hasn’t been brought up in education. Now I wonder how many autistic professionals are in education to educate teachers.

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