The reason that the mindset of “just power through it!” Is so dangerous to me is that Autistic Regression is a very real and constant danger.
Autistic regression has eaten away large chunks of my life. I remember having one in elementary school when the bullying got bad. I started crying when people touched me and couldn’t swallow pills. All my meds had to be liquid for a few years.
I need to take my meltdowns (and shut downs) seriously. It’s not a temper tantrum, though it may look like that on the outside. I know some people even think it’s funny, and trigger them intentionally. I can imagine it looks ridiculous that a grown woman gets worked up so easily.
But this behavior is very dangerous. Maybe they don’t know or maybe they don’t care. But allow me to explain why this is so harmful:
Meltdowns fucking hurt. My vision becomes grainy and pixelates. Noise goes in and out. My skin itches. Afterwards, For the next week Or so, my head throbs, everything is louder, I sleep constantly, and I can’t function.
Shut downs look less dramatic– usually me sitting down or going to sleep at the most inopportune times. I still have the week or so of heightened sensitivity afterwards, and it’s like my whole body is in molasses.
And that’s not the very worst part.
If I have too many episodes in a row, I lose brain power and forget stuff. Like how to act in social situations, or how to enjoy music. No joke. My last regression killed my ability to enjoy almost all music for several years. I’m slowly getting it back. I can have it playing in the background at parties now. Music is always painful, and always has been, but when I’m strongest it’s a tiny, minor annoyance, and I can see the beauty. I can enjoy it socially.
And having one shutdown or meltdown makes it easier to have more.
I had to work very hard to get back to where I was six years ago. I had to listen to books on tape constantly. It was hard. It was painful, and every second hurt. I’m still doing it, though, because I don’t want to be an invalid. I don’t want to be damaged irreparably.
And part of that is making sure I avoid meltdowns and shutdowns.
I hate that I have to monitor my stress levels and opt out of so many things I want to do. There have been so many times I wanted to go out with my husband and forced myself to stay home because I didn’t want to go over my limit. I have to be careful around minor injuries or allergens because these little inconveniences make having a meltdown so much easier.
I have to be selfish quite often, and I hate that. I have to insist on sitting in certain places, or deal with minor annoyances when everyone else rolls their eyes. If I don’t, and I get stressed, I could hurt myself. I have to ask the people around me to cater to my insane needs,
Worst of all, I’ve had to permanently remove people from my life–people I love sometimes!– because they either did not care to or could not understand how to not trigger meltdowns.
Dude, I can understand if dealing with me is more effort than you think I’m worth. I’m honestly surprised that anybody is willing to. I imagine that it feels like all the effort I have to go through daily to interact with you.
I am CONSTANTLY walking on egg shells. I am constantly apologizing.
I understand, if you haven’t ever had to live like this, that modifying your normal behavior for another person seems like an insane request.
So I try not to insist upon it. It’s frustrating when it’s a family member because cutting them off involves collateral damage. But it’s still a choice, on our part, to have a relationship. I just need to remember that they are the ones hurting my loved one, not me.
When it’s a co worker I have to insist on the accommodations. Dude, I have no choice but to be here, just like you. Suck it up and deal with it. We all have to work. I’ll try not to ask for more than I need, but you bet your ass when I ask for a certain computer, or that you not eat a food around me, I am dead fucking serious. You will hurt me. You have no idea how bad the consequences are.
Because my rudeness may sting sometimes, but it’s not actually giving you brain damage.
Your refusal to work with me is actually damaging me. It’s definitely is making it hard for me to be a productive member of society. And it’s making the rudeness you complain about so much worse, because one of the first things to suffer is social skills.
I refuse to have another long term period where I spend years at home, use a cane for my aches and pains, forget how to have a polite conversation, and cry constantly, or whatever random skill I forget in my next regression.
So I will coddle myself like a baby. I will exercise and stretch myself when I can, in controlled situations where I can call a halt to it before I have a meltdown or shutdown. I will test and extend my boundaries whenever I can, so I’m less and less at risk.
And if there are people who think I’m a spoiled, whiney person who just wants to feel sorry for herself…. well… fine.
I need to make myself be fine with it, There is a reason the number one cause of death for autistic women is suicide. I refuse to be that statistic. I refuse be useless.
I will make myself strong enough to stand on my own. I will stretch myself every day. I will avoid breaking even if it means being rude,
Because I have value, and the me I am when I’m not recovering?
She’s an effing super hero.
I like being her.