The Exhaustion of Autism

Ever been so tired after a busy day that you sit down and before you know it, you're waking up out of nowhere and it's the next day already, when you weren't even finished with the day before? This has been my reality since I was young. A few hours of an activity that didn't involve being at home, and for the next day or even two, I'm so tired I can't do anything except lay around and sleep. The exhaustion of autism is real and tangible in my every day life.

Each day it takes every single bit of energy I have to focus on tasks for the day. If I don't focus, my mind wanders and before I know it, hours have passed and I haven't done a damn thing that's important. I can't sit and do nothing (literally, do nothing) because if I do, I fall asleep. I must be doing something - writing, reading, on the computer - that is engaging my brain or that's lights out for me. I can't sit on the couch without falling asleep, ever, unless I'm doing something. And no, watching TV doesn't count. It's easy to oversleep this way, which makes me more tired, and harder to recover from. Some days I sleep 12 hours, others I get 8 hours split into two for days on end and I'm fine. I don't "crash" except after I've been out into the world.

If I don't focus on walking up the steps, I will trip. If I don't watch very, very carefully when I'm pushing a cart in the store, I will misjudge distance and run into someone or something. I am hyper vigilant while driving to avoid misjudging and by the time I get home, I'm exhausted. Just majorly fatigued, from being out in the world with its sound and smells and all around environment surrounding me, assaulting my ears and eyes and skin from every direction. I wear headphones as much as I can to block out noise and listen to music because I can't handle silence.

I'm almost always cold. It can be 80 degrees out and I'm wearing a sweater because that's how my body is. I must sleep with a comforter on me, even in the summer time, and I have to sleep a certain way in a certain position -- this is a quirk that was exacerbated by my leg injury. I like to joke that I'm walking air conditioning.

I can't wear shirts that touch my neck, so they must be v-neck in order for me to wear them. No lace, no itchy fabrics, and I can't stand to be lightly touched. I've been known to smack at myself when something lightly brushes against me because I can't handle the feeling. I prefer long sleeves nearly all the time and pants because I hate having my legs uncovered. I'm unable to go barefoot unless it's to get in the shower and that's only because wet socks is an even WORSE feeling than bare feet in the shower. I prefer tennis shoes and rarely wear anything else, although I will wear dress shoes if I must dress up.

I have taste and texture issues. I rarely try new food in public places because chances are I won't like it or am unable to eat it and I will have wasted money. I eat the same foods over and over on a daily/weekly basis with slight variations among what I can eat, and other than salt and pepper, my system is unable to handle the majority of spices. It's not that I won't eat food, I can't, and yes, I do try again occasionally.

I take everything literally. I don't take as much personally as I used to, but that also requires a mental effort to keep my brain from freaking out in that area. I am able to 'give' sarcasm, but most often do not understand when I'm receiving it unless I know the person really well. I am better at written communication than verbal and cannot effectively engage in verbal arguments because my brain can't keep up. I can't recall how many times I was asked "did you hear me?" because when someone talks to me, I will stare blankly for a few moments processing what they've said before I can respond, and it's often not fast enough to please the person talking to me. This was bad in jobs, for obvious reasons.

When I'm upset, I have to 'verbally vomit' all the negative feelings in order to get over them, otherwise I will start shaking and become physically ill from the overwhelming emotions. This often makes people think I'm being a 'negative nancy' and sometimes even gets me called pathetic. I have the emotional development of a teenager and often react before thinking because my ability to "see the potential consequences of my actions" continues to elude me to this day.

For a long time, I hated myself because of all this, and others picking me apart because of it made it worse. And unfortunately, people can still get to me, especially when I see people referring to those with autism as monsters or brats that just need their asses kicked.

Let's get something straight. You can't beat or smack or discipline the autism out of anyone.

It's a neurological issue, not a discipline issue. Period.

Know how I learn? Repetition. That was the problem with college with me. It wasn't my learning environment. Every job I ever had, you showed me two or three times, made me do it, and I got it forever! Over and over, I learned by seeing and doing, not by someone telling me what to do. No matter how many times someone VERBALLY gives me directions, I will never, ever remember them. I need to SEE them. It's this way with everything! Ever experienced having to tell someone something over and over, only to get pissed cuz they don't "get it"? Yeah, nothing like being on the receiving end of someone's anger over that sort of thing, especially when you're intelligent like I am. I felt stupid for so many years, it did a number on my self-esteem.

I will never "figure it out on my own" because I just can't. Not don't want to, can't. I know this, because I've tried. I always did better in jobs where there were rules and directions and things to do in a certain order because that made sense to me. I could learn that, no problem, which is often why I stuck with fast food or retail because anything that left things up to me to decide was a bad idea.

The fact I know what's wrong with me and how I react to things doesn't mean I can stop those reactions! That's like knowing you are allergic to peanut butter and saying, hey, body, stop doing what you're wired to do because I said so! If only I could do that because nobody enjoys being out of control! I've changed and grown, and continue to change and grow, but it's a terribly long process that unfortunately required a lot of time and effort and pain because unfortunately, I learn by doing and sometimes, that meant doing the same shit over and over again until I "got it right." ...By the way, that's not very effective in life, and people aren't very forgiving of what they see as you repeating the same stupid mistakes over and over again. But hey, I was left to figure it out on my own.

But you know what? You see one person who is autistic, and you've met ONE person with autism. Generalizing is bad in this arena as it is in many others. I am speaking for myself here, although I'm sure many will be able to relate.

I'm not lazy because I don't want to do something. I'm not stupid because I don't get it. I'm not worthless or useless or anything because I can't function like you do, or I need more sleep, or after a day out I need two or three days to recover, nor am I spoiled because I have to have things a certain way to function, or I won't try a new food out in a public place where I'm likely to get sick.

This is just who I am.

And all this, coupled with dealing with a world that doesn't quite know how to deal with it, is exhausting.

And chances are, it's how someone you love is, and what people like me need are the understanding and acceptance of others. Want to help? Figure out a way to help instead of sitting there making judgments about something you are incapable of understanding. Because if you aren't autistic, you don't get it and you never will. If you don't know what to do, ASK, and be specific, please. :)

And lastly, I don't want people telling me how I, the actual person with autism, should feel about something. I'm not offended by the word 'retard,' for example. Some people are, some people aren't, but it's up to ME to decide if I'm bothered by something and if I'm not, then that's that. 'Retard' means slow or delayed, and you know what, sometimes I'm retarded, and I even refer to myself that way, and it's nobody's business but mine. Because I CAN be slow, and I AM delayed in some areas, AND THAT IS OKAY. This is also the issue with "autistic person" or "person with autism" debate... I am BOTH. Some people want it one way, others want it another...the point is, we are the ones who decide that sort of thing or what to call ourselves...not somebody who has no idea what it's like and isn't autistic.

So if you know someone like me, or someone with a disability, ask that person what THEY want and what THEY feel and what THEY need in regard to their issues. Support is always appreciated, and thank you for reading all this.

<3 Violet