This is part 2 of a series on the cost of autistic masking. Click here to read part 1.
After my autism diagnosis, I started living life with open eyes…or, at least I thought that’s what I was doing. I began socializing more and spending time with friends and family that I hadn’t spent time with in years.
I learned and grew, but something was still wrong. At first, it was the little comments people would make. “You sure bounced back quickly.” “Well, you’re doing alright now.” Then it was the way certain family members would treat me. The looks they would give me, the disbelief in something I was confused about, the reaction to my not being able to understand how to play a card game or comprehend something they were trying to tell me.
“Wait,” I thought. “This has been resolved. What’s happening?” I knew they knew I’m a diagnosed autistic with PTSD and OCD as well as physical health problems like celiac disease, joint hypermobility, and diverticulosis.
The Mask Was Still There
I’m very open about being autistic on my social media, but for some reason, the fact that my brain is neurologically wired differently missed those who spent only short amounts of time with me with months of intervals between.
The mask was still there, only this time, I was consciously using it– not to hide, but to make people feel more comfortable around me.
I’d toned down my bluntness, adjusted my body language, learned to look at the bridge of people’s noses when they talked, and steeled myself against sensory experiences that triggered me in an effort to avoid triggering others. I stopped myself from doing any stimming (self-stimulatory behavior for emotional regulation) around them. I felt like this was a fair compromise to make, and it made interactions smoother and more enjoyable.
Well, for them, anyway.
For me, it was only when I got into my car to leave that I could breathe and be myself again. I thought they knew that. I really thought they knew what an effort it was for me to adjust my behavior so as not to offend or call unnecessary attention to myself, but they did not. They were FOOLED by the mask. They thought that was the REAL ME.
“You’re Not Autistic.”
About four months ago, I was asked to go to a few parties for certain family members. I told the person who invited me that I had to bow out of at least one of them because going to three parties in such a short amount of time would “destroy” me. This person became incredibly offended and told me that I really had problems and not to bother coming because they didn’t want to DESTROY me.
When I tried to explain to the person what I meant by “destroy” (worsening of OCD and PTSD symptoms, plus sensory overload due to my being autistic), they shot back with “You’re not autistic.”
I haven’t been that hurt, enraged, or out of control for a very long time since my recovery began. I was terrified of myself in that moment. I started shaking and crying and even laughing like a lunatic.
I had to call the crisis center where I go for therapy, and they spent 30 minutes talking me down. I was hyperventilating and seeing red, and I was genuinely scared I was going to have to check myself back into the hospital.
I Will No Longer Wear a Mask
A few weeks after this incident (and after considering many others that have happened over the past four years that have been dangerous for my mental health), I decided to distance myself completely from these specific family members. As much as it hurts me to do it, I will no longer be seeing them.
I really didn’t think anybody was “fooled” by my mask. I thought it was understood that I was toning myself down a bit in order to make everyone else comfortable. This was my gift to them. It was not meant to be taken as my actual personality.
I accept responsibility for my role in this misunderstanding. I wore the mask so expertly that even my professional diagnosis wasn’t taken seriously by these particular individuals.
I mistakenly believed people knew exactly how much it took out of me to be at social events. I had no idea that these individuals believed I was a fully-recovered human with no discernible symptoms or problems just because I managed to morph into a neurotypical-passing human for a few hours.
Well, that’s the painfully high price of autistic masking. Eventually, you become so good at it that people who may have doubted your struggles in the first place eventually don’t believe you at all.
It’s Time to Say Goodbye
So, I’m done. That isn’t to say that I won’t use what I believe to be appropriate social behavior when around others, but I will not stop myself from stimming, staring into thin air when I need a sensory break, crying, taking some space, etc., because I will be damned if another person in my life actually believes that I’m “fine” just because I’ve learned to pass for a couple of hours.
That is not only dangerous for my mental health, but it does nothing to foster genuine connections with other human beings.
This is the lesson I have learned. No more mask. Just me. I am an autistic woman, and I live with all the struggles and strengths any neurodivergent person does. If you do not believe me, find the door, leave, and don’t ever look back. Because I did not claw my way this far out of the pit for anybody to throw me back into it again.
Want to know more about life on the spectrum for a late-diagnosed person? Click here to watch my video series, “Why Autistic People Do That”.
- Could Student-Focused Learning Help Neurodivergent Learners Get a Better Education? - January 19, 2020
- Don’t Confront Your Autistic Loved One About Concerning Behavior… Investigate Instead - December 9, 2019
- Why We Need to Start Treating “Autistic” As Another Language Instead of a Condition - November 16, 2019
(((Jaime))) (hugs but not really) Thank you so much for your profound story, and I so respect your solutions!
Oh, I’m OK with hugs. I’m one of those “touchy-feely” autistics. lol! Thank you. 🙂
Everything you just so beautifully articulated resonated with me so much! I’ve masked for so long, that I don’t even know where that mask ends and I begin anymore. I grew up with a narcissistic mother, for whom appearances were everything, so I was severely punished for “socially unacceptable ” behavior at a very young age. I am in my early forties and was diagnosed 3 years ago, so still trying to understand myself and heal.
Thank you for sharing, it really helps!
I’m so glad it has helped you! 🙂
Thank you for sharing your experience. I was just diagnosed and it has been honestly an earth-shattering experience for me- I am connecting so many dots and a lot of the stuff you talk about is resonating heavily with me. I grew up in a very unstable environment and learned social masking very young but never truly understood the toll it took on my mental state and my body. I am beginning to unlearn now. It helps to know I’m not alone. Much love to you on your journey. x
Thank you so much, Amy! Congratulations on your diagnosis.
I LOVED THIS ARTICLE!! 🌈🌈❤️❤️❤️