a spoonful of autistic struggles

the struggle of being neurodiverse in a world that balances itself within the neurotypical thought process.

i may or may not be writing this post from a corner of a crowded coffee shop on the verge of autistic shutdown, so excuse my poor writing skills.

I have struggled my entire life with the idea of “normal” because it was pushed so strongly by everyone around me. I would constantly be told “stop acting like that.” “you’re being weird.” “you’re just embarrassing yourself.”  by family, friends, and peers.

so eventually, I conformed myself to fit societies idea of “normalcy”. causing myself constant breakdowns and plummeting into a deep valley of depression and suicidal  11:11 wishes. and for what? to still be bullied and insulted for being different but at least I was trying to hide myself right? thats what everyone else wanted.

well, I’ve stopped that. I’ve accepted myself, my autism diagnosis, my different mind, my limits, and my breaking points. And I am happy. I am proud of who I am, and hell yeah I embrace my autism.

But that doesn’t mean it isn’t a constant, daily struggle that others just don’t seem to understand. 

Since coming out and being honest about my diagnosis, I’ve had people say to me “You don’t seem autistic.” “You seem just fine to me.” As if thats some sort of twisted compliment. As if my years and years of hurting myself to conform to strangers ideas of “normal” paid off. But all these people that said those things haven’t seen my worst, my meltdowns, my “routine got changed so I will lay on the floor and refuse to move for hours” moments.

For the people that did see those, this diagnosis was the light and understanding at the end of the dark, confusing tunnel we have all walked down together.

So this blog post isn’t because I feel the need to justify myself to the people who don’t understand, but its to help the people that want to understand and know what life is actually like for a teenage autistic girl–not the mask I would wear to hide myself as if I was made to be hidden.

So heres some of the things that happen to me because of my autism (sidenote: this is just my experience, autism varies greatly for everyone.):

  1. Sitting in a cafe, as I am right now, is not an easy task although I love the atmosphere. Now if I was with friends, I’d sit where they wanted, did what they did, and use a lot of my energy to not be a trouble. This would result in me having to rest and recharge after a few hours of socializing. But when I’m alone, I don’t have that energy to spare. I need to make my shortened amount of energy last an entire day of tasks and things to be done. So here I am, walking in, I need to scan the entire place. Which seat is away from the most people? A corner is preferable. Which one has the least amount of light shining on it? Are any of the bulbs flickering? Everything is at the same volume so its all equally too loud. Headphones? Put them on, NOW. About to order? Script your response 10 times, no 20 in your head. Repeat Repeat Repeat. As I’m ordering, I avoid eye contact (costs too much…energy), messes up my script, orders the wrong thing, can’t ask for something different, noise is getting too loud, lights flashing, my hand starts shaking. If I don’t sit down now, I’m gonna go nonverbal. All this just to go to a coffee shop and work on an essay. This time, I was sitting peacefully in the corner, my corner. A group of loud teenage girls comes next to me. “Its okay, Its Okay, Its OKAY.” I repeat to my heightened flight or fight response. Then, one of the girls moves her chair into my table, blocking me into the corner. I can’t get out, I can’t say anything as I’ve gone nonverbal. I start rocking gently, a coping mechanism also known as stimming. I need to get out of this corner. But how? I start to panic and shake more. Then, I suddenly get up, try jumping over the slight crack between the table and the chair, falling and becoming more overwhelmed. They laugh. My brain does not understand why it was funny. My eyes start hurting, my chest hurts and I think I’m about to throw up the coffee I just drank. My brain yells: Sensory overload. My energy for the day, gone. All from a seemingly simple task. Now, everything else I do today will push me farther into a soon to be and certain autistic shutdown.
  2.  Autistic Shutdown. A behavior an autistic brain does in order to cope and calm down from being overstimulated or overwhelmed. These happen to me every day I leave my home and venture into a world that wasn’t made for me. What does it look like? Sometimes its laying in bed for hours, forgetting to eat, drink or go to the bathroom. Sometimes its me sitting on the ground after a shower because getting up AND dressed seems impossible. Sometimes its me seeming fine until someone asks me something and I hear them, but I can’t respond. And when they keep talking, I cover my ears and bury myself into the couch.
  3. Long strings of information I wasn’t ready for make pinprick feelings in my chest. You say four things at once, I heard them all but none of them made sense. My mind got foggy trying to remember it all and I put all my focus into paying attention that I couldn’t listen to the actual words. Keep talking, do it. I’ll look like I’m paying attention but you’re really making my chest feel sharp and this conversation is getting us nowhere.
  4. Conversations are more confusing and stressful than algebraic equations, and trust me I’m bad at math. Don’t get me wrong, I love talking to people and making friends. But that doesn’t mean its not very challenging until I’m completely comfortable with you. My mind scripts everything I’m going to say, I rehearse and collect conversation starters, questions, and ideas in my mind like a billion and one cue cards. So when someone says something simple like, “Hi.” This is what goes on in my mind: “Social interaction detected. What do I say? HI. Hey. Hello. Heya. Which one, which one…” I speak, “Uhhhh, hi.” Them: “Hows it going?” Me: “Hows it going…responses for hows it going….where is it going and what is it….its me, me is fine. I am okay. Am I Okay? I had a rough morning, spilled my juice so is that okay or fine? DO they really wanna know that? Or is it a social rule to say good. Retrieving database of past conversations. People say good. Okay.” Ten seconds passed and I say, “Good.” You, I was supposed to ask them. Five seconds later, I blurt out, “You?” And conversations either go on in this stressful, awkward cycle or I get too nervous and mess up responding and it ends as soon as it began. Its real….fun.
  5. My body is a machine I am still learning to navigate. Meaning, I struggle with motor skills and coordination. My posture is pretty bad because I am always slumped over, which is a mix of disliking the feeling of the back of chairs and forgetting to position myself comfortably. When I walk, I often run into things and trip a lot. And half the time, I have myself in really uncomfortable positions that I don’t realize are hurting me until I move and feel my back ache.
  6. I wear the same clothes every day. I have about 4 good, sensory friends outfits I mismatch and switch between every week. I have one pair of jeans I can stand the feeling of. Everything else makes my body itch. And I mean body because its not just my skin that feels the yucky textures, it absorbs into my body too. Sometimes I wear other clothes because they look cute but they feel anything BUT cute. So I often end up changing or scratching at my legs all day.
  7. ROUTINE. The most important thing that determines how well my autistic brain is going to handle my day. For a lot of people with autism, their routines are strict schedules that make things difficult when they get derailed. My idea of routine is a little different. The times of things happening doesnt need to be the same everyday, I don’t need to do the same thing every day. But if I am told something is happening at a certain time, my brain is going to fixate on that time. So if that time magically comes and the thing I was supposed to be doing at this exact minute is no longer happening, taking longer than expected, or the worst….canceled. I am going to get aggravated. Because this thing I’ve been focusing on for days or weeks has been changed and that physically hurts. Especially if it was something I was looking forward to for a long time, my mind has been fixated on that thing since it was told to me. Now, its changed and my brain cannot wrap itself around that concept. This causes me to have meltdowns if I’m at home, which look a lot like childish screaming and head hitting. Or if I’m in public, looks a lot like someone crying and getting stuck in time. Another way routine is important to me is in familiarity. I like going to places I have been to before because they make sense and my brain knows what to expect. An example of this is when I hang out with one of my best friends. Every time we hang out, we go to target because I am comfortable with us always going there together–I know all the aisles, the steps in each one, the amount of lights on the ceiling…its all comforting because I know it. So, we go there to walk around and talk versus a new place that would cost me a lot of energy to get used to. Changes in routine can be very deliberating for myself mentally and physically when they are big–such as going to a new city, a new place, going to work where I don’t know who’s all going to be there or who ill be working with. It causes me a lot of stress, panic attacks, and breakdowns. So even if I’m excited to do something, be patient with me if it seems otherwise. I am adjusting.
  8. My brain is a camera that never turns off. I think in pictures, only pictures. And its one of the favorite things about my mind, but it does make certain things with others a little bit confusing. Because if you’re telling me something I can’t connect a picture to, its going to be lost on me. But, all the pictures help me think in a unique way which is awesome.
  9. Many little things cause big feelings of uncomfortable. hot drinks. nails on jeans. humming. seams. socks that have a hint of a different color on them. sweaters made of that painful, thick material. scarves that are too thick. turtlenecks. hair on my neck. water on one part of me but not all of me. food thats too chewy. the sound hard candy makes on your teeth. shoes on carpet. soft touches. water with the bad taste. one flickering light. escalators. whistling. certain tones of voices. tags on clothing. velvet. bright lights in stores. the smell of smoke on a cigarette smokers hands (from tables away). thick lotion. too many people talking in one place. seatbelts. and many, many more things that cause me severe sensory discomfort.
  10. Everything is always the same volume. So if someone is talking to me, I hear them just as loudly as I hear the shoes of a person 20 feet away scraping across the wood floors. The sound of the zipper on the girls jacket pocket clanging against the metal chair. The person taking someones order 10 feet away. The mans breathing behind me. And the running car outside. At the same volume of you talking to me. So yes, I am listening. And no, speaking louder won’t help. Just give me a little extra time to process all the input you’re giving me.

So, for now these are just a spoonful of things that I have been dealing with, especially today. I hope to continue adding later on to this post with more things that affect me but for now, I’m gonna go finish eating that bagel I bought an hour ago and forgot about. Now, I hope this post isnt seen in a negative light as I try to be all ’bout that positivity but in order to be positive, you have to understand the negatives too, so it even matters.


2 Replies to “a spoonful of autistic struggles”

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