Autistic Masking: Why Mask and What is the Ultimate Price You Pay

Autistic Masking: Why Mask and What is the Cost?

Let me begin by stating I’m an expert masker – stealth-mode, ninja master level masking. The phrase “you don’t look autistic” could have been invented for me (what does that even mean? Anyone? I’m genuinely asking and also please stop saying it now, it’s invalidating and ableist). I sometimes feel like responding “thanks, it’s taken me years of trauma” but I fear that would come across as rude

I’ve masked long, and I’ve masked hard, and considering my stimming is mostly vigorous hand-flapping it’s been quite the achievement. That excited Kermit the Frog meme has been mentioned to me more times than I care to count, but to be fair it’s not far off (he’s not excited enough).

Image of Kermit the frong
CC BY-SA 2.0

I’m so good at masking that I’m worried that when I start my diagnostic assessment shortly I won’t be able to drop it enough to get diagnosed.

I don’t know exactly when I started masking but I was very young. I think it was shortly after I started school at age four. I realised that people (both children and adults) didn’t like the way I was, the way I moved and the way I interacted; so I actively tried to change. I do remember this was a conscious decision, for many neurodivergent people it isn’t. The message that we are somehow broken is one society teaches us very early. It’s hard not to internalise it and form your core self-beliefs around it. Up until then I’d been a chatty, mischievous child at home (I didn’t go to creche or playgroup and was quiet in social situations). I was known for exploits such as the “Vaseline on the windshield incident” (a science experiment that went awry), or the “jumping out my bedroom window kerfuffle” (it was the first floor, but I escaped with only a bruised ankle and perhaps ego).

A Mask of Invisibility

But I couldn’t do both – I couldn’t suppress my body’s natural movements and perform socially so I became withdrawn, the shy, quiet child that you wouldn’t even know was in the room. The child who was a pleasure to teach because I did everything I could not to get noticed – “head down, mouth shut” became my internal mantra. The child who would go on to be called sly and sneaky by relatives because I spoke so seldomly. 

There were signs if you knew where to look. I wasn’t very successful at hiding everything. I could never figure out social cues and interactions. I always spent lots of time watching others, to try to learn this secret script that everyone else seemed to have been given. I would go to relative’s houses, grab a book and disappear with no idea why this was considered rude. I gravitated towards the dominant figures, certain they’d figured it all out, but they generally belittled or mocked me.

The Mask Becomes a Mirror

I don’t recall any particular friends from primary school at all. I spent most of my lunch breaks alone walking the parameter of the playground humming the Smurfs theme tune. I did play with my brother when he started school but mostly I was ostracised and excluded. Children seem to have an innate ability to sense difference (research into thin slice judgements of autistic people backs this up). All my people watching did teach me some skills. I now know that these ‘skills’ are called mirroring or mimicking. 

My mother could always tell which children were playing outside because I would come in using their mannerisms, hand gestures, intonation and accents. I still do it today and then worry people think I’m mocking them – actually it’s normally only people I admire so really it’s a compliment. Imitation being the highest form of flattery and all that. My latest one was David Rose from Schitt’s Creek much to the amusement of my partner.

But Doesn’t Everybody Mask?

It is important to note that everyone masks to some extent. You’re not the same version of yourself at the interview as you are at the Christmas party (or maybe you are and more power to you). The difference is the toll it takes. Research has shown that masking has a detrimental effect on Autistic people’s mental, emotional and physical health (see attached articles, with a trigger warning for talk of mental health difficulties). Spending all your time

– suppressing your body’s sensory overwhelm

– not being able to naturally regulate (stim)

– watching how you’re interacting

– replaying that interaction to see where you went wrong

– replaying it again

– scripting conversations;

– Not letting the façade slip

is exhausting. Deep down to the bones exhausting. It’s one of the reasons a lot of neurodivergent people suffer from fatigue. Wenn B. Lawson calls it ‘adaptive morphing’ as a trauma response to a threat – much like freeze, fight, flight and fawn, done from necessity to protect oneself not to deceive. And people can maintain it for a while, perhaps even years, but it eventually catches up.  The body does keep score after all.

The Price of a Mask

And so we come to a phenomenon known as ‘autistic burnout’. You may not have heard of it but so many neurodivergent people have experienced it, even if they didn’t (or don’t) have the vocabulary for it. Kieran Rose (aka the Autistic Advocate) defines burnout in two types:

– social burnout which is frequent and results from the day-to-day costs of masking during a normal day

– Autistic burnout which is the shutting down of mind or body (see linked resources from more)

I have experienced both. I regularly experience social burnout and will need days to recuperate after social events even if I enjoyed them. My daughter’s the exact same. Every activity must have a cost and risk assessment done to make sure we’re not wiped and have a ‘nothing’ day planned to recover. The latter I’ve experienced less frequently but as Kieran says “you crash and you keep crashing”. The first time it happened to me I couldn’t even feed myself – my body just stopped working and I had no idea why. It was terrifying. I was diagnosed with extreme physical exhaustion by my college doctor and sent on my (slow, painful) merry way.

This can happen to children, even very young autistic children, and parents often describe it as a ‘regression’, which is an awful term and completely misses what’s going on. They are advised to push their children more. More therapies, more interventions, and all the while the child is struggling more and more. Imagine if parents knew that really their child has reached their limit, that what they/we need is less, not more. Less forced interactions, less sensory stimulation, just less everything, just an opportunity to recharge and recuperate. Autistic people have very high levels of depression and anxiety, and more often than not it could be linked to burnout. I was diagnosed with depression after the birth of my second child but I now know that it was most probably exacerbated by burnout – two under two would do that I suppose. 

For More Resources and Information

I’ve included links to articles, blogs and research about masking, camouflaging, burnout and the impacts. Fortunately, of late lots of autistic researchers have been writing papers on these topics to raise awareness and hopefully make some meaningful change to help autistic people and those who care about them recognise what’s going on. I’ll not lie much of the research makes for stark reading – the impacts on autistic (and otherwise neurodivergent) people’s lives can be devastating. But it is only through raising this awareness and listening to autistic voices that change will come about.

Reading List

https://theautisticadvocate.com/2018/05/an-autistic-burnout/

https://theautisticadvocate.com/autistic-masking/

Botha, M., & Frost, D. M. (2020). Extending the minority stress model to understand mental health problems experienced by the autistic population. Society and Mental Health, 10(1), 20-34. https://doi.org/10.1177/2156869318804297

Cage, E., & Troxell-White, Z. (2019). Understanding the reasons, contexts and costs of camouflaging for autistic adults. Journal of Autism and Developmental Disorders, 49(5), 1899-1911. https://doi.org/10.1007/s10803-018-03878-x

Cassidy, S. A., Gould, K., Thompson, E., Pelton, M., Robertson, A. E., & Rogers, J. (2020). Is camouflaging autistic traits associated with suicidal thoughts and behaviours? Expanding the interpersonal psychological theory of suicide in an undergraduate student sample. Journal of Autism and Developmental Disorders, 50(10), 3638-3648. https://doi.org/10.1007/s10803-019-04323-3.

Cooper, R., Cooper, K., Russell, A. J., & Smith, L. G. E., (2021) “I’m proud to be a little bit different”: The effects of autistic individual’s perceptions of autism and autism social identity on their collective self-esteem. Journal of Autism and Developmental Disorders, 51, 704-714. https://doi.org/10.1007/s10803-020-04575-4

Lawson, W. B., (2020). Adaptive morphing and coping with social threat in autism: An autistic perspective. Journal of Intellectual Disability – Diagnosis and Treatment, 8, 519-526.

Leedham, A., Thompson, A.R., Smith, R., & Freeth, M., (2020) “I was exhausted trying to figure it out”: The experiences of females receiving an autism diagnosis in middle to late adulthood. Autism, 24(1), 135-146

Pearson, A. & Rose, K. (2021). A conceptual analysis of autistic masking: Understanding the narrative of stigma and the illusion of choice. Autism in Adulthood. https://doi.org/10.1089/aut.2020.0043

Perry, E., Mandy, W., Hull, L., & Cage, E. (2021) Understanding camouflaging as a response to autism-related stigma: A social identity approach. Journal of Autism and Developmental Disorders.  https://doi.org/10.1007/s10803-021-04987-w

Raymaker, D., Teo, R. A., Steckler, N. A., Lentz, B., Scharer, M., BS, Delos Santos, A., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). “Having all of your internal resources exhausted beyond measure and being left with no clean-up crew”: Defining autistic burnout. Autism in  Adulthood, 2(2). https://doi.org/10.1089/aut.2019.0079

Sasson, N. J., Faso, D. J., Nugent, J., Lovell, S., Kennedy, D. P., & Grossman, R. B. (2017). Neurotypical peers are less willing to interact with those with autism    based on thin slice judgements. Nature. Retrieved February 22, 2021, from   https://doi.org/10.1038/srep40700 and www.nature.com/scientificreports

https://osf.io/t6vp2/?fbclid=IwAR1DftJblNGW6_iGf1XWYeYDELJMrptcf81vAATMjJK2bcR9lmP8Kb9kXaU

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Avatar image of Jonks, who has a red bob hairstyle and aviator sunglasses.
Jonks

Jonks (she/they) is an self-identified autistic person (with a side order of ADHD) and parent to two wonderfully neurodivergent children. Her interests flit but at the moment are autism, child development and attachment parenting, politics and democratic learning.

Jonks

Jonks (she/they) is an self-identified autistic person (with a side order of ADHD) and parent to two wonderfully neurodivergent children. Her interests flit but at the moment are autism, child development and attachment parenting, politics and democratic learning.

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