The Exhaustion of Autism

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.

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Will autism be the death of me?

Will autism be the death of me? is a tiny bit sensational for the headline, but not far off from what I'm going to write about.

There is this article here that says this:

Now, a major Swedish study provides a wider perspective on premature mortality among people with autism. Neuropsychologist Tatja Hirvikoski and colleagues at the Karolinska Institute compared mortality rates of people with autism with the general population over two decades. Speaking from Stockholm, Dr Hirvikoski says that she was “shocked and horrified” at the results. Her team found that the mean age of death of somebody with autism was 54 – compared with 70 for the general population. For people with autism and a learning disability, life expectancy was a mere 40 years.

Why do people with autism die so young? For those with an associated learning disability, the leading cause is epilepsy: this kills people with autism at a rate 40 times that of the general population. For people with autism who do not have a learning disability, the key factor is suicide, for which the rate is nine times greater.

Think this is sad? I do -- and I've lived it.

The KEY factor is suicide in people like me.

And the fact is, I have attempted suicide twice in my life -- once at age 14, and again at age 20.

Yes, some of the thought is, well, I'm turning 31 this year. That's 11 years without an attempt...that's good, right? Obviously I haven't tried again...

But, it doesn't mean I haven't been tempted. It doesn't mean that in my darkest moments, in those times when I'm emotionally exhausted and devastated from trying to make it through another day, and everything has piled up to the point of excruciating pain in my head. Just because you don't see it or hear us talking about it, doesn't mean we aren't thinking it or haven't thought about it in the depths of our weakest points when surviving seems the most painful option.

I spent most of my life not knowing what was "wrong" with me and when I finally knew, it was relief. But the relief didn't last long because it turned a problem I thought could be fixed with therapy and medications into something I would have to find ways to COPE with for the rest of my life.

My post about exhaustion? Just the beginning of an issue that permeates every inch of my existence.

Most days, simply breathing is enough to keep me "in bed" all day. Doing anything beyond the normal daily basic activities end up being all I can manage, and the same joblessness that gives me the freedom to have my terribly bad days, is the same situation that compounds my problems. And other days, I get 2 hours of sleep in 24 hours and go and go for days on end with 2 hours of sleep each night, and of course, BOTH of these take an impact on your health and not in a good way.

I am going to disclaim anything beyond this point with this simple statement: just because this is what I've experienced doesn't mean everyone is like this, so this isn't personal...it's merely what I've gone through. Keep that in mind as you read.

First, we live in a society where anything that makes you different automatically puts you further down on a list of what someone wishes to employ for a job. Most of my life I worked fast food and retail - physically and mentally demanding work (contrary to what people think, it's not an "easy" job for 8 to 10 hours a day) for someone like me - and we won't even go into the fact that the wages were so poor that I practically starved to death trying to live on my own, because I could only afford to eat once a day. Then, when I could no longer physically handle it due to a car accident, I had nowhere to turn to.

No college degree (even though I attempted six times and technically have junior level amount of credits because I ran out of funding before I knew what the problem was and couldn't afford to change my degree into one I could actually finish) -- I was attempting to become an accountant, because I actually enjoy bookkeeping and taxes, but couldn't pass the calculus and stats classes -- math at that level is beyond my comprehension even with extensive tutoring I received. Basically, I had no others "on paper" skills, and slowly but surely following my accident in 2007, my ability to get another job dwindled to where it's at now -- pretty much impossible.

Second - there aren't enough jobs for everyone (contrary to the "just get a job or two or three if you want to eat" people)...so the jobs that ARE available are either jobs people desire to have filled by those with at least a Bachelors, or the physically demanding jobs I can no longer perform. I have been turned down by job after job, entry level jobs, including call centers that train you! A job I applied for even though I struggle with being on the telephone with people, because the government told me "my hands still worked" and therefore, I wasn't eligible for disability! That's right -- they consider me basically disabled except for my hands...which is why I turned to publishing my writing, but even my hands struggle with working as I want them to sometimes.

I have zero help with every day living. Last year I made less than $7500 for the year from my writing and had food stamps; this year, I no longer qualify and it's not because I'm making a shit ton of money.

My writing is all the money I make and all I have to feed my son and I with, and I am lucky I can live with others so I don't have as many costs.

I am not living on the system; the system has abandoned me because I learned to cope the best I could growing up and now people treat me as if I'm normal even when I'm not. Because even with ALL my challenges, the fact I can COMMUNICATE works against me. I was told it's not the job of the government to help me get a job, they just say I CAN get one...somewhere, doing something with my hands, y'know. They don't care if nobody will hire you!

This is the future of autistic adults because services for adults is SHIT, and I will tell you, directly contributes to the desire to kill ourselves, in my opinion. There isn't enough housing or assistance to go around and when you can't hold down a job, when your inability to deal with certain things leads to job loss, when people think you're a loser because you aren't a productive member of society as an adult no matter how hard you try, why in the world would you think we wouldn't be suicidal?

Nobody wants someone to take care of them forever. None of us want to feel so helpless that we're trying and trying but just can't manage to 'do it the right way' and none of certainly want to be a burden to our friends and family because we 'fail to launch.'

People forget that autistic children turn into autistic adults...and nothing will get better until everyone understands that and do what they can to make life better for ALL of us. We aren't normal. Just because we develop coping skills doesn't mean we can keep up with this rat race called life. So so so so many of us can't go, go, go without eventually burning out and making things worse than they were before. We don't deserve to go hungry because all we can handle is part-time jobs, or one full-time job, just because many people think a person who didn't finish college is lazy or a bum or doesn't want to work hard. NOBODY deserves that.

You can't see our struggles on the outside. Much of it is internal and we're hiding from you, because it hurts to be judged constantly by how much we lack, instead of cherished for what we CAN do.

And yeah, sometimes...sometimes I want to die when I'm trying and trying and getting nowhere. When I've spent 30 years of my life SURVIVING and getting little to no joy out of struggling to put food on the table and keep a roof over my head, making bad decisions because I didn't know any better and didn't have the emotional capacity to understand, all while trying to live up to the worlds expectations of the adult they wanted me to be even though I wasn't anywhere fucking close.

And truthfully, if it weren't for my son, I can honestly say I might not be alive today. It's hard though, even with him in the forefront of my mind, not to struggle with how much I just want my life to stop hurting.

People can tell someone like me to buck up, to get over it, to work harder, but it doesn't work that way no matter how much they wish it.

And if you haven't been there, you don't get it, but it doesn't mean you can't learn.

We're not selfish for those suicidal thoughts, either. Because we're human, and we want to have lives filled with love and success just like anybody else!!

Want us to not commit suicide or even think about it? Want us to live, to thrive, to have fulfilling lives?

Don't we want that FOR ALL CHILDREN AND ADULTS who are doing the best they can? Isn't every single person worth helping to make their life the best we can?

Support us, and others. Help us and others in any way you can, even if it is the simplest thing such as listening even when we're crying our eyes out and feeling hopeless. Understand we're not like you, understand that just because you can't see a problem doesn't mean it isn't there, and fight for the ones you love.

We all have the power to save someone's life today with a kind word and a helping hand.

Until next time,

<3 Violet

The Danger of the "I did it, why can't you?" Attitude

There's a lot of good in being positive and uplifting when it comes to other people in your life. Hard work is something which should always be celebrated, but the question is when you see someone's 'hard work' as 'not trying hard enough.' You may think this because you were always told as a child 'you can do anything as long as you work your ass off' but that isn't true. There's no use arguing it, because it is simply not true for many, many people.

And it's not a universal truth, if the fact is it's not true for everyone.

My strengths and weaknesses belong to me and nobody else.

Same goes for you.

And all the people you know who you may or may not use as 'proof' that the person saying they can't do it is just 'making excuses.'

There's an inherent and often overlooked trouble with saying, "I did it and so can you" or "you're just not trying hard enough" to someone you personally know -- and even worse to one you don't well or at all. This danger comes in the form of how you end up making them feel as a person, because you're seeing their reasons as excuses, no matter how legitimate the reasons are.

It's here I am going to tell you something I would like you to truly take the time and consider.

I have a lot of reasons why I can do something or why I can't. Pushing me to do something before I can handle it doesn't make me appreciate you or your efforts to help; it makes me resent you and get angry and push you back harder than you're pushing me.

Behavior of this sort will set me back; it will not help me grow or move forward. It is harmful to someone who truly can't move at a pace the world requires. I am incapable of moving at the pace others think I should. It's not that I won't, it's that I physically and emotionally can't.

Nobody, and I do mean nobody, knows me better than I know myself. And no matter how much I know you or how well you think you know a person, you should reconsider whether you have the right to sit in judgment of another for not living their life how you think they should.

Face it, the facts are that your strengths and weaknesses are not those of another person. Just because you can climb a mountain doesn't mean I can or even want to. Run a marathon, exercise, work yourself to death in an ever growing effort to make sure you're not seen as a loser...that's good on you. But nobody has the right to tell someone else they 'aren't trying hard enough' because you don't know everything about them, even when you think you do.

Physically, I look fine. By looking at me you don't know I have autism, but you also don't know that a car accident years ago took my ability to stand for more than 30 minutes without my left leg going numb and my body collapsing beneath me, after which I will limp for a week. So no, I can't just 'get a job doing what I used to' and yes, people have suggested just those types of unhelpful things.

Emotionally, I'm half my age. Physically, I'm older in many ways and younger in others. Logically/mentally, I'm about on par, and all this causes trouble for me. Logically I know that texting someone I like all day is not a good idea; emotionally, I can't help myself. When I try to stop myself from doing it, other things start to affect my ability to process and handle the things around me, until I say everything I want or need to say. When I get angry or upset and am trying to hold back, I will start to shake and my hands will freeze, my whole body will cool down instantly because all my heat is racing to my heart, and I can't hide it. I go silent because I'm fuming and I'm trying to control it, and the fact is, I can't. Telling me to stop or quit is a waste of time.

Everyone in the world can tell me I just need to take a few deep breaths, but it doesn't work that way, and nobody has any right to say otherwise. And if someone is annoyed by my behavior, can you imagine how I feel? Over and over, I tell my brain, I can't act like this. This isn't adult behavior. Be good, be good, be good.

Yet it still keeps happening because parts of my brain are not lined up in their growth and development with other sections.

I 'self-stimulate' in many ways. Tap my feet, shake my legs, lick and nip at people I'm close to, rub my face against soft things, can't sleep without a blanket over me and covering my feet, need firm touch and hate when things softly brush any part of my body, 'typing' words my brain gets stuck on with my fingers during a conversation, play with my hair (up and down out of it's bun), chew on my hair (although less than I used to), rub and twist my hands together, twirl like a ballerina while walking, walk on my tip toes, jump over cracks in the sidewalk, listen to the same new song over and over for hours on repeat...all stims, all impulses, all things I can't control without feeling even more out of control than I already do.

So many times once I became an 'adult' thanks to my age of eighteen, all I heard was how I was failing because I wasn't trying hard enough. But, truth was, I was trying as hard as I knew how, but I wasn't coping. I didn't know how; I had so much growing up to do thanks to something I was unaware of it, and the world in its inherent unfairness didn't notice.

And before anyone suggest I think life is fair, no. I am aware, with every fiber of my being, that life isn't fair.

But people can be. People can be kind and compassionate and realize we are all fighting our own battles. People can realize we don't all come from the same environments, and we're all fighting our own demons, and we're not all the same, so therefore we cannot all DO the same.

So, the next time you see someone struggling, ask yourself:

Are they coping? Are they truly not trying, or do they just not know any better?

Or perhaps, are they not capable of doing what I did?

Do I have something I can give them, other than criticism? A kind word, a kind gesture, a smile given without expecting one in return, a moment in which they will remember someone didn't look down on them even though they could?

Because in the end, words and actions have the power to impact others, whether we want them to or not. And we all have the power to make someone feel good even if we don't agree with our perception of their decisions and choices and behavior.

And you're going to get farther with kind words and actions than you are with vitriol and contempt for those who are different than yourself.

Every single person you come across who struggles will appreciate it, I promise.

With love,

<3 Violet

Yes, I am autistic.

Yes, I am autistic.

I am not ashamed of this fact.

It does NOT define me.

I would like to thank you for reading -- both this blog post, and my stories!

I had this really long post written up, but really, I'm going to make this post as simple as possible.

Two years ago, at age 27, I was diagnosed with mild autism (aka Aspergers or high-functioning autism) after years of misdiagnosis' that mostly tried to pin me as "crazy."

It wasn't something I was sure I wanted to be public about. I wanted my writing to stand on it's own, but the truth is, it can...and it cannot.

The way I see the world, the way I feel things both inside and out, and the way I describe things are my own, but they also colored by my autism. I feel, and quite deeply I might add, but in some ways, I also lack.

I am a well-spoken woman who has lots of empathy and no shortage of compassion, but experience relationships differently than others. I'm highly literal, majorly "black-white" in my thinking, and my initial instinct is to help someone fix their problems when they come to me with them, even though I can't manage to solve my own.

The way I react to things would be seen as "hysterical" and "immature" to many people not on the spectrum, but if I write my characters as reacting with what I think would be a mature reaction, I sometimes feel as if the person is not reacting strongly enough. Imagine feeling this way in real life, as I am often unsure of how one is supposed to react to such things.

I'm not good with describing places whether I've been there or not. I don't use location in most of my stories because I refuse to make stuff up about real places, and even with lots of info, nothing catches a location like actually having been there. I am often blind to the world around me and while I can describe colors and shapes, the wind to me is painful and often noises are blocked out by my brain so I won't freak out.

When it comes to characters & their stories, I am very focused on them. To me, unless something is important to what is going on, I don't feel it necessary to describe it. I mainly write in first person, and find myself telling a story as I would see it, and for this reason, little character details are sprinkled throughout the story as they become relevant. Many times, if something is left out, it's simply because I'm unaware people think in such a way.

Why am I telling you this now? Because chances are I will be at a signing one day, and I want my readers to know I appreciate every single one of them. Online when I interact, I am a completely different person.  Here, I am free to write, edit, and change what I want to say until I say it in the way I intend. In person, I will be bound to say something wrong. I am not able to converse normally, I am soft-spoken and often slow to react. I won't look in your eyes, I may mumble, and unless you ask me a specific question, I am often unable to know what to say. To many on the outside, I can come across as rude and unappreciative because I am not what they expect. Physically, I'm unable to stand long and hover on the line of disabled. I need my personal space and don't like to be touched. I am not able to fake a smile, nor am I energetic and outgoing. I am a shy, introverted person who loves and craves social interaction as much as the next person although in a rather limited amount.

This matters to me. I don't want to not do signings because of my fears that I will offend someone or someone will think I don't want to be there. I do, I am simply not capable of expressing it, and my face isn't able to show you. I may come for a short time but not be able to stay the whole time. I may need to walk away or take a break, and in the end, may have a sign indicating this very thing.

I'm not ashamed of my autism. I'm proud of what I've accomplished and of my writing, and I stand by it even if sometimes I wonder if my writing isn't deep enough or detailed enough. Believe it or not, while I cannot read between the lines of other's work, I often am surprised at my own writing when people see the things I wanted them to see but wasn't sure I conveyed.

I've changed my author bio's to reflect this. I never intended to hide it, but I have realized perhaps doing so hasn't done me any favors. I have a unique perspective of the world and I want to share it.

You may love all of my writing, or you may hate some or all of it, and that's okay. Just know, if you ever meet me, that I am just as happy to meet you as you are to meet me, even if I can't smile physically in a way that shows you how happy I truly feel on the inside.