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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I am not perfect...

These past couple of weeks have personally been hell for me.

I don't tell you any of this for your sympathy or pity. In fact, I write this blog for me and share it because if something I write helps even one person, I'm glad. Overall, though, this is where my feelings about things go, and yes, it's about my writing and my personal life and anything else I feel like including at the time I make a post.

But, back to the hell.

For the most part, I spent the week following my emergency surgery lying in bed. Okay, I kind of had to for some of it, but otherwise, I didn't get out of bed unless it was to go to the bathroom or shove something resembling food down my throat. I cried, I raged internally, and I even probably picked fights with my husband. (I did.)

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The Death of a Dream

Today I'm writing with grief...and a despair so deep, there's a nasty taste in my mouth.

On June 18th, just a little over a month after my wedding, I got a positive pregnancy test. I was ecstatic, but also absolutely and utterly terrified. We weren't trying and after the last six years, I thought I would never get pregnant again. After two ectopics back in 2011, with one resulting in the partial loss of my left tube, my chances of having another tubal pregnancy was really high and these results left me in a state of shock and worry.

And after two weeks of ups and downs - bleeding, hCG slowly rising, dropping, only to rise again, with no sign of an ectopic - I spent most of this past Saturday with extreme shoulder pain. I went to the ER, where my hCG should've been high enough to see a sac with an internal u/s, but there wasn't anything. And still, no sign of an ectopic. They sent me home, merely telling me to "wait it out" as I had an appointment with my regular ob-gyn on Thursday.

But yesterday morning, I lay in bed trying to take it easy until we got answers when I suddenly couldn't move. All I could do was whimper and cry, the pain in my abdomen so sharp and instant, I knew this wasn't a good thing. I managed to crawl up the steps, where I begged my mother and father-in-law to "help me" as my husband was at work. It hurt so bad, I couldn't stop crying. My MIL called my husband, who met us at the hospital, and after everything, they did another u/s... where it's discovered I was having another tubal pregnancy.

I was rushed to surgery, in the worst pain I've ever experienced in my life, where I lost my right tube, and therefore, any chances of another natural pregnancy. Of ever having another baby of my own without assistance I'll never be able to afford.

And right now, I'm devastated. Broken.

Right now, I can't see beyond today, because there's nothing except darkness. The death of a dream I've had for so many years... a child with the man I love. A biological sibling for my son.

And in my grief, I don't care if he got two step siblings when I married. I don't care that I have a living, breathing, and mostly healthy child already when some people don't even have one. Because I'm sad and extremely pissed off.

PIssed off at having something I've wanted for years taken from me when I haven't done anything to deserve it. Pissed off at my shitty body, that's never done me any good and caused me more grief than anything else; a body that is fucking stupid, can't handle most medications, allergic to way too many things, and aging me well beyond my years day by day. Pissed off at having to resign from my seasonal job at a time when I need the money now more than ever because of all this crap and probably going to have to file bankruptcy despite all my hard work these last 4 years at building myself back up.

And sad. Sad for having this taken from me, on top of every other way the world has let me down over the years, no matter how hard I've tried to work to fix it for myself. Sad for my husband who has a grieving wife he can't do anything for because there's nothing he can do to make it better. Sad for my son who spent all day yesterday terrified after seeing me crawl up the steps and is seeing me cry over and over and doesn't understand, in a situation I hope he never has to experience.

Sure, I'll get better. Sure, I'll get on and live with it, because what other fucking choices do I have? But I'll never, ever get over it. I never wanted just one child, and this hole in my heart, the one that I've been carrying around since the first time I had a tubal pregnancy... it's never going to go away, because I was so screwed up when pregnant with my son that I never got to experience the joy of carrying him inside me or having the support of the man I loved beside me, helping me through the rough times with our child.

I don't care if I'm oversharing right now. I had to write it down, somewhere, because I know someone else shares my pain and I know I'm not alone. It doesn't make it better, it doesn't fix it, but just know, there's another person out there right now crying their eyes out and wondering what they did so wrong for this to happen to them.

And hoping it's just a horrible nightmare they'll wake up from soon.

Education & Autism

If there's one thing I've loved my whole life, without fail, it's education. In school or on my own, I love to learn new things, especially when those things are my interests. I will hyper-focus on whatever I'm wanting to acquire knowledge in or about, and I will gather information until I'm satisfied with it.

Then, I'm on the to next thing.

I'm a sponge. And I'd rather learn something to do it for myself than have someone else do it for me...that is, as long as I'm interested in what I'm doing, of course.

It won't surprise you, then, to know all through elementary and middle school my grades were mostly A's with an occasional B. The B's were usually the result of something I found relatively boring, but either grade I received was from absolutely zero studying. In 6th grade, I never had to take a spelling test on Friday because I would get them all correct by mid-week. I was even in the talented & gifted program.

Through this, I went to three different elementary schools and one middle school...

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