Let’s talk about my masking, since it’s been a topic I’ve been avoiding talking about.
I’m medium masking. I can mask SOME. I used to be low masking due to my autism catatonia, but thanks to the medication I’m on, I was SLOWLY gaining masking skills back. But now starting to lose it again. It’s one of the few things I was getting back. And this is also your reminder. IF YOU BELIEVE YOU HAVE AUTISM CATATONIA, REACH OUT TO A DOCTOR. Plain text: if you believe you have autism catatonia, reach out to a doctor.
Why? Because Autism Catatonia IS treatable.
I used to be VERY visibly autistic. Stimming constantly, running around, just having that *look* to me. It caused harassment ALL the time. Like literally all the time.
Now, I can mask some. Stimming being the biggest thing that I could mask. However, it did, and still caused me to be constantly overwhelmed, and constantly on the brink of a meltdown. The constant suppression of stims is and was harmful to me, and I am slowly letting go of my masking ability that I have gained back because it’s harmful to me, and I’m just causing myself more harm by doing so. And I’m losing it already and just causing myself more harm by pretending I’m not and trying to hold onto it. I don’t think people realize just how heartbreaking it was to not be able to mask much at all, to being able to mask some, and then realizing that even the small amount of masking you are doing is being extremely harmful to yourself. I’ve also noticed that it’s been detrimental on my mental health, and even physical health as it is causing me to have more catatonic episodes. Why? I don’t know. But I cannot deny that my catatonic episodes, constantly being on the brink of a meltdown or having multiple meltdowns a week, and being constantly overwhelmed, didn’t happen until I started suppressing some of my stims and autistic behaviors.
I am EXTREMELY privileged to even be able to suppress some of my stims. Does this mean I’m not perceived as autistic? Absolutely not. I’m still autistic, and very much perceived as being autistic because of the fact that I’m nonverbal, constantly not alone and with people assumed to be my caregivers, constantly chewing on things, wearing ear defenders, in a wheelchair, and so on.
However, I’ve noticed a drastic change between me as someone who once stimmed very outwardly, then someone who did stim more passively. I haven’t talked about my masking in a HOT minute, because I was like “great! Finally getting some masking abilities back, let’s see where this goes” and then the second I started gaining it back, it started going down the drain again.
Today, I’m laying in my bed. Under a weighted blanket, feeling my skin crawl and having to kick my partner out because I felt like I was going to have a meltdown because I didn’t wear my ear defenders all week even though I needed them. And knew I needed them.
I’ve been so focused on how others perceive me, how they look at me, how they treat me, that I’ve completely forgot about what is best for ME. What is best for MY health. Yes, for awhile I was gaining some masking skills back, and even now, I’m more masked than I was, but I’m losing that again, and it is the most terrifying feeling. The feeling of losing your masking skills AGAIN is terrifying. Because the last time I did, I was struck with so much catatonia that I couldn’t get out of bed and needed help with almost every bADL and lost my speech completely. Now, I know that this hopefully won’t be the case, and the more I accept that I’m losing my masking skills and try not to force it, I will be ok hopefully and not fall back into that.
Autism Catatonia has taken everything from me before, and it’s continuing to take so much from me again. However, I cannot justify continuing to put myself through the literal torture of masking, putting my health at risk with more catatonic episodes, and the like. I know, it’s an extreme privilege to even start unmasking, yet I don’t feel like I have a choice, or even a say in the matter. The more days that go by, I’m losing the ability whether I like it or not. I’m not going through my “silly little unmasking journey”, I’m losing a vital skill that is made to protect autistic people against my will. And the more I fight against it, the more I’ll just cause myself harm. I cannot risk falling back into more catatonic episodes. I’m in college. I cannot risk that.
For all my autism catatonia baddies out there losing their ability to mask and in a complicated relationship with it, I see you, and you aren’t alone in this.
Autism Catatonia is so complicated, and I feel like the more I try and fit myself into the box that I used to be, the more harm I’m causing myself. So, here’s to a new chapter. A new chapter of accepting that I shouldn’t mask so I don’t have catatonia. A new chapter of accepting that I’m losing my masking skills again. A new chapter of being my autistic self again, and not worrying what other people think of me.
