When I was diagnosed at the beginning of this year, my assessor and I were discussing the key factors that led to my diagnosis. He had spoken to my mum about what I was like as a child and my mum had mentioned something I used to do that everyone called ‘Abby hands’. As an infant, when I was excited about something, I used to twist my wrists really quickly. My parents being first-time parents hadn’t seen anything like that before so they dubbed it ‘Abby hands’. My assessor then asked if Abby Hands were still around when I got excited and I told him that they weren’t and that I didn’t really express excitement anymore as I didn’t really know how to. He said something that stuck with me. He said “You’re Autistic. Be Autistic!”
Since then, I’ve been learning to allow myself to stim, to be emotional, to rest, and to ask for help/accommodations when I need to. It’s been liberating so far, being able to say “Now wait a minute. Why do I have to suppress myself? Why when I can just be me? I’m not hurting anyone!” which is unfortunately a luxury I didn’t have for 23 of my 24 years and a luxury so many Autistic people still have yet to experience. But why do we dilute ourselves into such a watered down version of ourselves? That is called Masking.
Masking
Masking – or camouflaging, social-camouflaging, compensatory strategies, or passing – is a sort of strategy that many Autistic people do, whether consciously or unconsciously, to blend into or be accepted by a non-Autistic/neurotypical society. Masking can occur in any situation where an Autistic person may not feel like they can truly be themselves whether that be in school or work, or in front of family and friends. It’s a protective mechanism to avoid bullying or shame at the hands of others. A way to appear ‘normal’.
Many Autists may copy others as a way to create their ‘mask’. We learn from observing, analysing, and mirroring the behaviours of others – even characters from books, TV shows, movies, etc. That’s why it may seem like a few of us have copied outfits or even dialogue from someone else!
Autistic people who mask (even if they’re unaware they’re masking or even Autistic!) are hyper-aware of people they’re surrounded by and are constantly adapting to those situations by tightly controlling themselves and how they’re perceived. This means we change or even dial down how we express ourselves – our personalities, appearance, mannerisms, opinions, interests, and even our needs or preferences – depending on the real, anticipated, or implied reactions of our peers. Both in the moment and over time.
Some examples of what masking may look like:
~ Monitoring how much eye-contact we make and even forcing ourselves to make eye-contact despite how uncomfortable it might make us feel.
~ Using facial expressions or phrases, sometimes mimicked from others, that may not come naturally to us.
~ Changing our speech; our tone, our accent, or our delivery. I.e. talking less bluntly, or being more/less animated.
~ Suppressing the urge to stim or hiding it. Sometimes even switching to less noticeable stims like skin-picking or pen-clicking. (Stimming: things like hand-flapping, leg-swinging, or echolalia)
~ Reducing or suppressing visible reactions to sensory overwhelm or stimuli. I.e. forcing ourselves to hug/shake hands when we don’t want to be touched, pretending not to be affected by loud ear-shattering noises.
~ Mirroring fashion style or aesthetic from others, even down to copying an exact outfit. I.e. suddenly dressing more grunge-y since we became friends with people who dress like that or dressing similar to our favourite character in a show (Alex Russo from Wizards of Waverly Place, 12 year old me put a stick in her boot to be just like you!)
~ ‘Scripting’ – planning in advance what we’re going to say to someone (i.e. rehearsing saying “Hi! Can I get a medium sized mocha in a to-go cup please?” when walking into a coffee shop). We may or may not be able to adapt when we receive an unexpected ‘off-script’ response.
~ We may ask more questions than what seems suitable as a means to keep a conversation going.
~ We may avoid sharing our interests out of concern that they’d be seen as childish or weird. (i.e. liking cartoons intended for kids despite being well into adulthood.)
Whilst there are many aspects to masking that non-autistic people may find relatable, such as adapting to formal situations, masking is so much deeper than that. It’s making strenuous efforts to manually act in ways that just comes naturally to non-autistic people. It’s pretending to know what’s written in a manual book you’ve never read. Masking is exhausting and can lead to mental health problems or Autistic Burnout.
But why do Autistic people mask? If it’s so exhausting to pretend to be something we’re not, why not be ourselves? The truth is, this world we live in wasn’t made with Autistic people in mind. We mask because we have to. Because we’re forced to. Even if it’s unintentional.
My earliest memory of being told to stop doing something Autistic was when I was about eight years old and my teacher told me to stop rocking side to side because I was making him ‘seasick’. It was a harmless comment and neither of us knew I was Autistic but from that day forth, I forced myself to sit still so I didn’t distract my teacher or my peers.
I was also bullied my entire school life. Kids are so intuitive so it shouldn’t come as a surprise when I say it took other kids within seconds of meeting me to know that there was something ‘odd’ about me, even if I didn’t notice it myself, and unfortunately a lot of kids reacted negatively to that. I started seniors as ‘little Abby’ the cute little pet that people allowed to follow them around and that they can draw on, say bad things to, embarrass online, and make fun of. I ended seniors as ‘Abby the weirdo’ because I finally tried to stand up for myself and was alienated for it. I became a misfit amongst misfits because even the other ‘weirdos’ didn’t think or act like me. All that masking, all that trying so hard, all those jokes I pretended to be in on and I was still the odd one out.
It wasn’t just school where I masked though. I had to mask at home too because I felt like I couldn’t be myself around my own family either. I shared a room with my younger sister who loved to call me things like ‘freak’ and point out when I did something she deemed as weird. “Why are you breathing so loud?” “Why are you talking like a scientist?” “You dress like a weirdo.” all of these things said in a nasty tone that told me I should be ashamed. Then I’d get berated for being ‘lazy’, ‘selfish’ and ‘making excuses’ by my parents. I never felt like I could just be even in my own home.
That’s why Autism Awareness is so important because, if Autists had more access to Autism-friendly spaces and accommodations (in work and education) and more people were aware of what Autism can actually look like especially for those of us with low-support needs, then a lot more Autistic people would feel safe enough to not have to mask.
As is common with people diagnosed a bit later in life, I masked for a vast majority of my existence and now I find myself asking “Who am I really?”. I’ve been so many different people, changed to fit into so many different boxes in an effort to fit in and be liked that I stand here now, over half a decade into adulthood, not knowing who I am. I find myself, even when I’m alone, doing something like stimming and saying to myself “Stop acting Autistic!” but the thing is, I am Autistic. I didn’t even think about stimming. It was just automatic! That self-criticism and hyperawareness of myself needs to be unlearned.
That’s what I’ve been doing since April. Since I got my diagnosis. Since my assessor said to just ‘be Autistic’. I’ve been unlearning to control my actions and the way I’m perceived. I’ve been unmasking! I allow myself to carry my fidget toys and my headphones, I’ve been allowing myself to have limits and do what works best for me, I’ve been allowing myself rest when I need it, and I’ve been allowing myself to express my emotions in any way that comes natural to me.
I’m proud to say that in July, when I saw the Liverpool Pride parade for the very first time in my life, Abby Hands made a long overdue come back in the form of Flappy Abby!
Important things to remember:
Unmasking takes time. Think of the mask as more of a prosthetic mask than a Halloween mask. It takes time to create it, and it takes time to remove it. Don’t be hard on yourself if unmasking doesn’t happen over night. It’s a process and a journey.
Autism-friendly spaces to unmask are essential. As much as I wish we could live in a world where anyone is free to be themselves authentically, we still have a very long way to go and prejudice still exists. Lots of people may not understand Autism and many of those may not want to understand. But Autistic people need to unmask sometimes even if it’s alone in a room we’re they’re safe to do so.
Self-care is not a luxury, it’s a need. Self-care isn’t always face-masks and bubble baths. It’s taking care of our own needs and resting when we need to. This is so important to remember if you are an Autistic person who masks.
Not every Autistic person masks. There are Autistic people who grew up fortunate enough to feel comfortable not masking and just being themselves. There are also Autistic people who don’t mask because they can’t (usually high-support needs). Do not force them to mask! That is not your decision to make. If them being Autistic makes you uncomfortable, walk away and check your ableism.
On the other hand, do not force someone to unmask. Again, that is not your decision to make. If someone feels they are comfortable to unmask around you, they will do so at their own pace.
If you’re Autistic, BE AUTISTIC! Even if it is just in the comfort of an empty room, within communities or inside a wardrobe, allow yourself to stim, to eat safe-foods, to wear ear-defenders or headphones, to regulate. Do what you feel is best for you.
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