Masking

Someone recently asked me what masking meant in relation to Autism, I gave the example of chronic pain because I find it is the easiest way to understand. I have Rheumatoid Arthritis and Fibromyalgia, every single day I am in pain. I experience different types of pain sometimes all at once, on my best day there is some kind of discomfort. People don’t see that I am suffering; I have been in pain so long I’ve gotten really good at hiding it. Who wants to listen to someone complain all the time? Not me. There is intentional masking, and then there is masking that comes naturally because you’re so use to the suffering you have learned to carry it in a way that doesn’t set off any alarm bells.

You can mask some physical disabilities the same as you can mask a disorder like Autism. With Autism what happens a lot of the time is people do not realize they’re masking, they might just be trying to fit in, or they’re mirroring the behaviour of their neurotypical peers, this can go as far as developing “scripts” for social situations. Masking is essentially suppressing the signature characteristics of a disorder. You’re hiding your authentic self as an effort to gain greater social acceptance; this can also happen unintentionally. Through more understanding of ASD many adults like myself are realizing they have had characteristics of Autism their whole life. This can feel like putting together the pieces of a puzzle and everything finally clicking. Struggling socially, eye contact being uncomfortable, feeling different and alone, easily overwhelmed, extreme burn out and fixation on special interests are just some characteristics that one can mask and brush off as being quirky or introverted; I assure you there is a difference. I’m not saying having some social awkwardness or any of the associated characteristics mean someone is Autistic; however, when you resonate will the majority of them and have significant struggles that only improve with some form of a support system or coping mechanism, it doesn’t hurt to explore the possibility. If you do find out you’re Autistic, I encourage you to remove the mask if in doing so, you feel better.

People don’t see my disabilities, they don’t see how much pain I’m in, or how uncomfortable I feel in social situations, how eye contact makes my skin crawl, or how loud noises and bright lights give me migraines. They don’t see the shut down, subtle stimming, or the regulation struggles. They’re not here for the insomnia or OCD tendencies I grew up hiding. My texture issues are considered picky eating, the way I overexplain myself comes off argumentative. Rarely do I meet people who really try to understand me and don’t brush me off.
When it is not obvious that you’re autistic because you speak fluently or don’t have certain well-known traits of ASD, it can go undiagnosed forever, especially if you’ve been masking your whole life. Even if you do manage to receive a diagnosis later in life, there will always be those ignorant people who will brush you off because you don’t meet their criteria for someone who is genuinely Autistic. If you don’t flap your hands and have trouble communicating or have meltdowns due to loud noises, they’ll never believe you belong on the spectrum – because they don’t understand what a spectrum is. My advice to people in this boat: do not let others invalidate your experience, live as authentically as you can. If you pray, pray for the ignorant and hard hearts around us.

My daughter masks at school, so while I am happy that she is adjusting well and liking school, I know it is partly because she is suppressing a part of herself to gain acceptance. She may not know how to just be, so she looks to her peers to mimic what they’re doing. In one way I see it as we all do this on some level, and in another way, I see how masking presents certain challenges. For example, we see attention and focus issues outside of the school, but because my daughter is high masking at school, she is somewhat performing and they are unable to witness characteristics that may lead to an accurate diagnosis like ADHD. Testing for ADHD can be more focused on how much of a burden you are to others over the individual’s experience, this prevents adults from seeing the signs.

Masking can be helpful in the sense it helps you get through, but it is incredibly exhausting. It drains you and forces you to water yourself down to please others. It prevents people from truly knowing and understanding you. Maybe that’s the point for some, maybe that’s the way some people feel truly safe.
When my daughter comes home, she unleashes everything she’s been dealing with all day. She doesn’t have much left in her, which sometimes results in aggressive behaviours, or she goes into shut down, where she cannot speak or be around anyone. Her teachers don’t see what the school day does to her. Last year she was doing half-days because that is all she could handle, and even then, 4 hours or so would exhaust her. She’s grown some resilience with the help of her care team, but at the end of each day it takes several hours to decompress. Rinse and repeat tomorrow. Maybe you can resonate with that, I know I certainly do. There are days when socializing has taken so much from me it is physically painful to open my mouth and speak. I cannot engage in conversation any further, I struggle to make eye contact or do any tasks until I’ve had some time alone to rest. When I am experiencing shut down, touch can be uncomfortable, and I become ultra sensitive to lights and sounds. Sometimes, I have mini moments where I am quietly processing a social interaction, and someone thinks I’m sad. It is easier to say “I spaced out” over “I disassociated for a moment because the social interactions I’ve experienced caught up to me and I need a minute to process” – amiright?

In a sense, we are all capable of masking aren’t we?