The #TaketheMaskOff campaign was started by Kieran Rose (The Autistic Advocate) and Hanna Molesworth (Do I Look Autistic Yet?) to spread awareness and acceptance about Autism and masking. Masking, also known as camouflaging, is very common in the Autism community, and can lead to burnout. Women on the spectrum in particular tend to mask, which can lead them to slip under the radar when it comes to diagnosis.
What is masking?
Masking is when an individual conceals their identity and social struggles by picking up and learning, unconsciously and consciously, behaviours perceived as “normal” in others and acting that way. This is done by individuals in order to feel more accepted and to blend in, especially if they already struggle with expressing themselves and their emotions. Even friends and family members can be the recipients of masking behaviour. It differs depending on gender, and can depend on what the person perceives as societal norms. Females on the spectrum are often extremely good at masking in social situations, which contributes to the problems in diagnosing women on the spectrum.
Examples of masking include:
- Hiding discomfort of sensory issues (such as not covering ears in response to painful sounds)
- Concealing confusion or misunderstanding in social situations
- Suppressing stimming (self stimulatory) behaviour
However, masking comes at a cost – it cannot be sustained indefinitely. Hiding your very self is exhausting and takes a toll. It can be extremely anxiety inducing and cause chronic illness issues and other health issues, literally draining physical health.
What does it feel like to mask?
I personally found it felt like studying the human race, and adopting a persona that other people were more comfortable with. Autistic people are great actors. This created social issues for me, as it made me question whether people were drawn to my “masked” self or wanted to see the real me. I would disguise my discomforts in response to sensory issues and stress by perpetually saying “I am fine”. I would come home exhausted and would regularly have panic attacks and meltdowns. I would often escape to fantasy worlds where I could be totally immersed in another world, as a break from being often confused in the human world that we live in. A turning point for me was when I had a full panic attack at school in front of staff, and they knew exactly what to do and helped me through it. It made me realise that masking and risking my mental health was simply not worth it.
In the interest of mental health and acceptance, it is vital that Autistic individuals feel comfortable being themselves. This can be achieved through strong support systems, and mentors who are willing to listen and take the time to respect the issues that individuals on the spectrum face. Finding your tribe as someone on the neurodiverse spectrum is vital. Being around like minded people will greatly help all members of the community create an accepting and inclusive environment, where everyone’s perspective is respected and celebrated. Being around fellow Autistics may help in feeling less isolated and help individuals feel proud about their Autism. Luckily, there are many more Autistic-run social groups that give individuals the chance to socialise, make friends, and feel part of society.
“As a young child, I was totally and completely myself – through my stims, meltdowns, and moments of profound connection. As I grew up and was exposed to the teenage world, I became aware of social norms, and I felt a dissonance between my “Autistic self” and my “NT friendly self”. My NT friendly self would manifest in the outside world at school and in public, and then my Autistic persona would come out at home, often through meltdowns and stimming. This was my soul telling me I was missing something. Then I realised – I had it all wrong! My Autism wasn’t part of me – I am Autism. Autism is a way of being, of mind and heart. And my Autism was my unique, beautiful self, that is totally and truly me. Since then, I no longer feel a split. I am just me! Don’t wait until 17 to realise that. You see Autism as you like, it is your journey and that is truly special. Don’t let anyone tell you otherwise. If you are unsure, stand with an animal… they just are. Be just you.” – Shadia
Shadia Ibrahim, Autism Actually.