How Masking My Autism Led to Burnout
Posted on 11/13/19 in Health by Nera Birch
Masking or camouflaging is something just about everybody does on a daily basis. Depending on where you are or who you are with, you act a certain way. People with autism have to do this on a much deeper level. We live in a world that was not designed for us, so we learn to “hide” the things that make us seem different.
I learned how to keep my autism hidden in public, even before I was diagnosed. In fact, one of the reasons it took so long to diagnose me was because in school, at least until middle school when I was diagnosed, I was able to camouflage exceedingly well. I could go through an entire day without displaying autistic or different behavior.
Home was another story. By the time I got home from school, I would be exhausted, physically and mentally, from masking all day. Bear in mind, I was not able to verbalize these feelings when I was a child. I would have intense meltdowns that affected my entire family very negatively. But home was the only place I felt safe enough to unmask and let out all the emotions and feelings I had bottled up during the day.
Up until very recently, I forced myself to mask completely in public and even somewhat at home, if there were people around me. I refused to stim and got very embarrassed to be caught doing it. When out in the world, my goal was to look as though I was neurotypical. It got to the point where I would have a panic attack if I said the wrong thing or made the wrong facial expression.
I became so self-aware when I was camouflaging. I could literally feel the weight of holding in my emotions and meltdowns. My body hurts and I have trouble breathing. My body feels heavy and underwater. When I’m masking to this degree, I feel like I’m on auto-pilot. I feel so close to snapping. I’m just being stretched and stretched and I’ve managed to bounce back every time, but a rubber band can only stay intact through so much stretching and pulling. It’s a scary to think what might happen if the rubber band actually breaks.
That is called autistic burnout and it is a very scary state of mind. For me, autistic burnout occurs when I just can’t stand being autistic anymore. The thought of messing up socially, even something minuscule that nobody else will notice, makes me hate myself during burnout phases. I feel worthless and small. I have even felt suicidal. Masking is important and useful in small doses, but when you mask constantly, it can cause severe mental turmoil.
Burnout will come and go. I feel wonderful today, but that could change tomorrow. Having a plan of action before you reach a burnout phase is very important, especially because you can’t always think straight when burnout occurs. I have a list of people I can call and talk to and a list of activities to try out when I feel this way.
Letting myself act more autistic has been absolutely freeing. I feel comfortable enough in my own self to act the way that feels best to me. I embrace my echolalia and now I feel free to sing and repeat phrases that sound pleasant to me. I flap way more now, pretty much in every conversation. And the more awkward I feel, the harder I flap. But I don’t feel self-conscious about it anymore. In fact, I think it’s kind of endearing. I have sensory toys everywhere and I am not afraid to use them. If someone wants to stare, let them.
It has taken me 25 long years to be this comfortable with displaying my autism and I still have a ways to go. But I’ll do it with my mask off and my hands flapping.
ABOUT THE WRITER
Nera Birch is a self-advocate with a passion for bringing awareness and advocacy to the Cleveland area. She comes to Milestones as a former volunteer and speaker, with a long history of public speaking alongside the Milestones coaching team about topics important to the autism community.
This article was written by a self-advocate for Milestones Autism Resources. Views and opinions expressed in this article are the writer’s own. Milestones strives to create conversation around important topics in the autism community and to provide members of the community with a platform to share their honest perspective. In addition, while Milestones Autism Resources’ policy is to practice person-first language, we encourage all self-advocates to identify themselves as they wish, so you may see language throughout the blog that does not align with Milestones’ internal person-first language policy.