Updated JULY 17, 2017
One of the hardest things for me to deal with as an autistic person is people not understanding what life is like on a daily basis. Nobody has any idea how much energy goes into ensuring I don't mess up too badly or that I "get things done" when they need doing. Well, they might, but many people in my life didn't until I received my diagnosis, and even then, it's hard for them to understand sometimes.
In 2016, I wrote a blog post called The Exhaustion of Autism, and today, I'm sharing the post again (with some slight edits to make it more general audience appropriate!) because this is one piece that really means a lot to me. I've also added a bit to the end. This expands on what being autistic can be like for someone. I hope you enjoy and thanks for reading.
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 everyday 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 darn 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 noises and listen to music because I can’t handle silence but I can’t do this while driving.
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 like to joke that I’m walking air conditioning. At bed time, I have to sleep with a comforter on me, even in the summer time, and need to sleep a certain way in a certain position — this is a quirk that was exacerbated by my leg injury.
Clothing is a big one. Shirts must be v-neck in order for me to wear them because otherwise, I feel as if I'm choking. No lace or itchy fabrics can touch my skin 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. Tennis shoes are my go-to footwear although I will wear dress shoes if I have to...but only for a short period of time and if they are too awful, I'll take them off no matter where I am at the time!
Ugh, eating. Taste and texture issues are plenty. 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. This has become a problem at random times when people judge me for refusing to eat something. Here's the thing...if I don't like the smell, I won't eat it. This is hard to explain but...my body KNOWS it will make me ill and protect me. Why is that so hard to believe? I don't know.
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. Written communication is better than verbal and I 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 is bad when it comes to working, 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 sixteen-year-old and often react before thinking because of my inability to “see the potential consequences of my actions," which continues to elude me to this day. I am thirty-two!
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 who are autistic as monsters or brats that just need their butts 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 type of learning environment. Every job I've ever had, they 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 gives me verbal 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 ticked cuz they don’t “get what you're saying" after the first or second time? 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 things 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! Silly right? If I could do that, though, I would, 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 crap 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 for way too long and in many ways, that's still true. I have more support but nobody wants to tell a grown adult what to do all the time. I "get" it.
But you know what? That saying is true... the one about meeting someone who is autistic, and you’ve met ONE person who is autistic. 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. Maybe I can't despite what everyone "believes" I'm capable of. I’m not stupid because I don’t get it. Explain it to me differently. Figure out how to make something clearer if I'm not understanding.
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. All of these things are part of me, are how I deal with the world around me so I can be an adult, just like you.
This is just who I am. And all this, coupled with dealing with the 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 probably never will. If you don’t know what to do, ASK, and be specific, please.
Realize how difficult it is not to "be normal" in this world. People tout those of us unable to "be normal" as failing to take "personal responsibility" when things aren't going well and accuse us of "making excuses" because so-and-so did it, so, therefore, everybody else can too. This is an unsound argument — how many things can't you do that somebody else can? Tell me, are you not a football player simply because you aren't trying hard enough to become one? What about a doctor? Is the reason you're not "doing it all" simply because you're too lazy to try? None of these things take skill, right, just "try hard enough" and that's all it takes.
Of course not. That's ABSURD, right?
That's how the world sees me though, especially when I haven't managed to become the “productive adult” I'm expected to be. Why?
Because it’s easier to believe we're failures, to see our quirks as impediments to the workplace, and our emotional outbursts as negativity that must be squashed. Except you know what we actually are?
We’re true to ourselves. When we finally realize there is nothing wrong with us other than in the eyes of society, that’s when we’ll truly realize our potential. When we’re allowed to twirl and jump and speak our minds no matter where we are, when we’re free from the limits of a day job that forces us to sustain an unsustainable sleeping schedule for our bodies, that’s when we’ll excel.
And all the good intentions in the world to help us fit in aren’t helping because, in order to do that, we have to lock away the things that make us beautiful. Society is so focused on WHAT causes autism and HOW to fix us, they don’t see the destruction they are causing, how they are trying to erode and obliterate us instead of understanding us.
And yet, I am not a puzzle to be solved. I’m not something that needs dissecting and examined.
I am a person with neurological differences, but under all that, I am a human who deserves respect. A human who wants love and a family and a fulfilling life as much as many others do.
We are beautiful and exceptional and loving. We are your friends, your siblings, your partners, your co-workers, and more.
And underneath that, we’re all different. Some will excel at living a “normal” looking life and they are happy with that, but there are many who won’t reach that level, that have limits they cannot exceed.
Ask yourself honestly, what is so wrong with being different? And if you find yourself saying that you don’t think there is anything wrong with being different, really ask yourself if that is true.
Do you rush to judgment?
Do you look at a kid screaming or throwing a fit in the store and think how that person needs to shut their kid up, or take parenting classes, or about how you could get that kid to behave if you were the parent? Do you get annoyed when someone fidgets or moves their body in an awkward way that doesn’t fit with the public place you’re in, or if you see a grown person twirling or jumping or doing something “odd” in a public place?
When someone doesn’t automatically act in a way you find appropriate, do you believe them stupid or lacking manners? If you try to explain something verbally once or twice or even three times, do you start to believe the person is incompetent or shouldn’t be working at their job, instead of thinking that you are upset because they aren’t working to your standards even if they are trying their hardest at their own level?
If you ask a person a question and they simply stare at you, perhaps blinking rapidly but not speaking, would you assume they didn’t hear you? Would you speak slower as if you thought this would suddenly make them respond to you? Do you find a person dumb when you ask them a question and the way they answer isn’t exactly what you are expecting from the question?
Is there someone in your life who, when you ask a simple question, goes into a spiel about something that seems completely unrelated after giving you a short answer to what you’ve asked? Are you frustrated by telling someone to do something and feeling as if they are ignoring you because they didn’t do it? Ever get annoyed with someone who you give instructions to find something, only to have to find it yourself because they couldn’t find it even though you only told them where it was, but not to them, you weren't specific enough?
These are all things I’ve personally experienced and let me tell you, most of them are embarrassing for both me and the person perpetuating them against me.
Of course, someone doesn’t have to be autistic to do any of these things, but can you imagine this sort of behavior on a daily basis? Not on the receiving end, but to actually be this way your whole life and unable to do anything about it? How many adults out there are just like me, but haven't been diagnosed? Can you imagine how hard life is for these people who don't know they are autistic, and the kind of ignorance they have to put up with on a daily basis?
The same kind of crap I had to deal with for years from people who simply thought me stupid and useless?
How many people are hurting from those who treat them badly over something they can't help...and why are we okay with treating others like they are less just because they don't perform like a 'normal' person does?
You know why there needs to be autism acceptance and not simply awareness?
Because awareness is standing there next to an autistic person and knowing we are autistic…and that’s it. Awareness is pointing at a group of autistic people and saying, “they are autistic!” and thinking that’s all it takes for change to arrive in how we’re treated. Like acknowledging us makes our lives better instantly.
But it isn't. It's not helping us get a job, or live better lives, or assisting us with those things we can't do on our own. It's not getting rid of the idea that the only reason people don't succeed is because they must have a character flaw, or an inability to take 'personal responsibility' for their lives, a belief that is patently false and disingenuous.
"Failure" in the eyes of society has many more factors than just one person's individual behavior.
So, we need more than your awareness. And until people accept autism, accommodate those who are autistic, and help autistics build lives with what strengths they have instead of focusing on everything they can't do, things won't get better for us overall.
Isn't it time things change for the better, for everyone...autistic or not?
And lastly, you'll notice I refer to myself as autistic. There is this “autistic person” or “person with autism” debate… I am both. Some people want it one way, others want it another…the point is, we (the ones who are autistic or have autism) are the ones who should 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, of course, loving us as we are is the most important.
Once again, thanks for reading!