Masking and ASD
“Be who you are and say what you feel, because in the end those who matter don't mind and those who mind don't matter.” - Dr. Seuss
One of the more notable and intriguing aspects of coming to terms with an ASD diagnosis is educating yourself on the terms and language that accompanies the disorder. Also telling people about my condition has proven to be very interesting, particularly the variety of responses. The reactions generally make me smile and none have offended me thus far. “Congratulations! Welcome to the club!” is one of my favourites. “I’m sorry” made me want to hug the person who uttered the words. Even with autism, I knew they felt uncomfortable and unsure of how to respond to my disclosure.
I have no issues with being autistic and having this disorder, I think it fits me perfectly. It makes sense to me and I welcome this label as I want to use it to help me and my family live better lives and access support. However, I do know that stigma is a huge issue when it comes to labels. I am aware that prejudice and ignorance will no doubt impact me and my family at some point in the future. That is why the condolences are understood and accepted, with the same generosity of spirit and kindness as the joyous, congratulatory exclamations.
When I discover who I am, I’ll be free.
- Ralph Ellison
Since my recent diagnosis, I have found myself thrown into a convoluted procedure of reframing, reflecting and understanding a lot of things that have happened in my past. Whilst I immerse myself in literature and research and endless conversations on my condition, new terms and concepts have been finding their way into my lexicon. Words such as ‘stimming’ and ‘masking’ are sprinting through my disordered and miraculous mind and stimulating my dysfunctional yet remarkable brain. I want to explore the idea of ‘masking’ in this article.
Masking is a word used to describe a common behaviour associated with many misdiagnosed or undiagnosed females. It argues that many girls/women on the spectrum camouflage their autistic traits to fit in so they can pass as non-autistic or “normal’. The idea of masking asserts that those with ASD often observe and then mimic behaviours to be accepted by those who are not on the spectrum i.e. peers and family members. The inference being this behaviour is an attempt to hide the socially unacceptable and often deviant behaviours associated with autism.
I have been wrestling with this concept for a while now and I have concluded I do not like the connotations and insinuations of the word ‘masking’. Nor do I feel it adequately describes how I have been behaving socially for the past four decades. It begins to explain a few things for me, but the word seems to be lacking truth and clarity about the behaviours and tactics used by many to fit in when in social situations.
One of the greatest tragedies in life is to lose your own sense of self and accept the version of you that is expected by everyone else.
- K. L. Toth
To me ‘masking’ insinuates a deception, a conscious decision and a process where we behave against our nature. It is implying that many of us are misleading people with a false persona or an attempt to falsely represent ourselves. I find this unfair, particularly as I value honesty and integrity so highly. I find that people on the spectrum often have an abundance of honesty and integrity and many have spoken to me about how lies and lying are painful to them. To connect with a behaviour which could be construed as dishonest, feels unjust to me.
I believe autism is connected to authenticity and a struggle to perform socially and communicate effectively. For many autistics, it is our honesty and frankness that can make our behaviour socially awkward or hard for others to accept. Many of us may adjust and change ourselves to avoid pain, distress and bullying. Some may refer to these adjustments as ‘masking’, I think surviving, shielding or avoiding abuse would be much more accurate describers. Masking will happen when it is not safe for many of us to be authentic. Masking will more often be a coping strategy and self-preservation attempt.
I have been expending a lot of time, energy, thought, reflection and observation skills in attempting to navigate relationships and situations in a manner that will avoid pain, discomfort and be in accordance with my values. Is that masking?
I had a conversation with an advocate recently. At one point in the conversation, I remember describing how scared I was in a scenario. I said to them “I had no idea how I was supposed to behave in that situation.” Immediately he said “Just be yourself” and before I knew it I had replied “But it isn’t always safe for me to be myself.” And there it was, proof that I had been masking and not aware. It was a survival strategy and something that I had normalised and had been doing for goodness knows how long.
To me autism is when you don’t know the rules that many people know effortlessly. In a world of rules, not knowing the rules can place you in danger of consequences, punishments and abuse. By trial and error many people with ASD adopt coping strategies and techniques to get by, to make it through the day and to pass as ‘normal’.
The reason so many people in society want to pass as normal, to pass as acceptable, to pass as worthy is connected to survival and our environments. When we make society safer for autistic people, maybe less will feel compelled to ‘mask’ and more will feel safe to be themselves freely. Here’s hoping.
What we know matters but who we are matters more.
- Brene Brown
Maybe ‘shielding’ is a better word, as it illustrates a desire for safety. Maybe hiding our disabled parts because of bullying, intolerance and discrimination is how we should discuss this phenomenon. Maybe surviving, because ultimately that is what masking truthfully is. We mask because not masking is not safe for many of us in society.
Masking infers hiding and I believe I have been hiding in plain sight.
Since my diagnosis I have become increasingly aware of how I have masked or hidden my autism historically. I am slowly but surely learning how to accept myself and my condition, completely and unapologetically. With the right people, no mask, camouflaging or hiding is needed. In the right circumstances masking has no place and in the right society we would all be free to be seen as our true selves. I hope that society is coming soon.