Mask On, Mask Off - AuDHD, Neurodivergence & Masking
I’ve always been a keen observer of other people. In real life, those on screen, and even characters in books. Beyond the superficial things like clothes, accessories, and hairstyle, I also note body language and facial expressions, and the micro-changes that happen during conversations or social exchanges. I track hand gestures, accent, tone of voice, shifts in the energy. An eyebrow twitch, a sideways glance, a slight hesitation, a sudden palpable tension that wasn’t there a minute ago.
I don’t often publicize this manifestation of my attention to detail because believe it or not, I’ve learned tact and try to be sensitive to people’s feelings. I’ve learned that white lies are commonplace, especially among neurotypicals. This is why I’ll sometimes fib when asked if I noticed certain things. Yes, I noticed. There’s just no point in intentionally making someone uncomfortable over trivial things like (what I perceive to be) a bad haircut or mediocre lasagna. Also, maybe you love your new fuchsia and green striped bathroom walls. Who am I to comment? I don’t have to look at them every day. You do you.
Sidenote: According to stereotypes and bad, outdated research, Autistics are allegedly clueless when it comes to social cues, empathy and tact. *Insert exaggerated eye roll*
Anyhow, to those who don’t share this experience of noticing/absorbing ALL the things, it may sound a bit odd. I don’t know what to tell you. It’s just who I am. This Sherlock Holmes type observation is an ability that myself, and lots of other folks who share my neurotype, are born with. It’s also a skill that many of us master over time.
This careful observation of others, along with an ability to mirror their (let’s call it, vibe) back to them, is a kind of coping strategy that has allowed me (and other folks like me) to fit in and be accepted in neuro-normative society. Giving the people what they want, and allowing them to feel seen, is a surefire way to be welcomed into the fold.
At this point, I feel the need to make it crystal clear that this isn’t entirely (or even mostly) a conscious process. It’s like a survival strategy/mechanism – something that’s a sort of entanglement of natural tendency, gut instinct, and honed skill. Let me explain…
As I wrote about in my diagnosis story, many Autistic/AuDHD folks have this sense of being alien among the humans. We know there’s something different about us, even when we don’t know why. Other (neurotypical) people know it, too. We know that they know, even if they don’t vocalize it, because we’re perceptive like that.
So, we learn to hide our ‘true’ selves to fit in, to assimilate, and to feel safe in a world where differences are not really welcomed, understood, or tolerated. We observe how other (neurotypical) humans behave, and we get the message that this is the way to do life if you want to be accepted. We abandon our true selves (to varying degrees) because we know that is what’s expected and required of us, if we’re to be received by the world. This whole elaborate process is called, masking.
In her article on masking, Dr. Megan Anna Neff provides the following list of common masking experiences among autistics. All of these are very familiar to me, and this is by no means an exhaustive list.
“Signs you are Masking Autism: Common Experiences
☑ Constantly preoccupied with how others perceive you and striving to meet their expectations
☑ Diligently adjusting your body language to appear interested and engaged in conversations
☑ Heightened awareness of the impression you make on others, leading to self-consciousness
☑ Continuous monitoring and adaptation of your body language and facial expressions to fit social norms
☑ Overly focused on managing your own facial expressions and body language in social situations
☑ Feeling compelled to make eye contact, even if it feels uncomfortable or overwhelming
☑ Persistent vigilance in monitoring and adjusting your body language to project a relaxed demeanor “
For most of my life, pre-discovery/diagnosis, I had no frame of reference for this experience. I didn’t know that most other people weren’t also carefully observing and mirroring others, and endlessly adapting, correcting, and contorting themselves, as a way to connect, to not offend, and to be accepted and appreciated as one of the gang.
I mean, I’ve always been aware that despite my efforts to be ‘normal,’ I’m somehow always slightly out of frame. People have either implied or outright told me as much, countless times. Sometimes they intend it as a sort of compliment. Sometimes not.
From a very young age, I sensed I was doing life differently than most people, but I didn’t understand the mechanics or the why. I had no real way of knowing and understanding that my internal experience differed/diverged in significant ways, from that of the neuro-normative majority.
As I’ve alluded to, the conscious and unconscious covering up of our neurodivergent traits/natural way of being, is referred to in the literature, and in Autistic and Neurodivergent circles, as masking or camouflaging. Masking is the more current and accurate/all-encompassing term, but some people use the two in different contexts.
If we want to drill down, masking is the suppressing of, or compensating for, anything about us that may reveal our neurodivergence. While camouflaging, is generally considered a masking strategy that refers to not drawing attention to oneself, so as to blend in/not to be noticed.
To date, the research on masking, is almost entirely specific to autism. However, there is beginning to be more talk of masking in the ADHD community as well. I eagerly await further research on this. We also know that code-switching (a type of masking) happens in Black, Queer, and other marginalized communities, too.
For the record, yes, everyone masks sometimes. Even neurotypical folks. You might dress more business-like, tone down your potty-mouth, and keep your messy home life to yourself when you’re at work, but let it all hang out when you’re at home or with your friends. Or, you might tell a white lie to your elderly aunt about how often you wear the toque she knitted you.
That kind of masking is something we all do in order to be part of a functional society. Although, I feel like the jury’s out on just how ‘functional’ current society is. In any case, a certain amount/type of masking is standard procedure for just about all of us – regardless of neurotype. But this garden variety masking, is not equivalent to the intricate, complicated, hyper-vigilant, self-renouncing process that is masking when you’re Autistic/AuDHD/Neurodivergent.
“Autistic masking is more than a brief or inconvenient change or suppression of certain behaviours. The reality is that Autistic masking is a form of erasure of one’s core identity…” (Neuroclastic on FB, April 2023)
Let’s pause for a second and take that statement in. It’s heavy.
Masking as a Neurodivergent person, (even when done unconsciously) requires HUGE amounts of mental, emotional and physical energy, just to meet the expectations of daily life. This massive output of internal (and sometimes external) resources, slowly but surely sucks the life out of you, and contributes to burnout in a big way. This isn’t just my anecdotal experience; we know this is a fact, because research. (See references at the end of this article and my previous blog posts on burnout).
“Since autistic people are a stigmatized minority in many neurotypical dominated societies, passing as nonautistic through autistic masking may be an attempt to avoid autism stigma and a reaction to previous interpersonal trauma. Increased autistic masking behaviors are associated with reports of increased depression, anxiety, burnout, and exhaustion in autistic people, and thus, exploring the roots and impact of autistic masking is an important mental health topic.” (Evans et al., 2024)
For those of us who are very late-discovered/diagnosed, the impact of a lifetime of masking can ultimately be destabilizing, disabling, devastating, at a time in life when ideally, we should be on more solid ground, hitting our stride, or feeling like there’s a light at the end of the tunnel, after decades of working our asses off in all the ways.
This experience of finally hitting the wall (mental/emotional/physical/financial destabilization, chronic burnout, the emergence of new, or exacerbation of latent, health issues, etc.), can be especially intense for those who have somehow (over 40, 50+ years) managed to cobble together the appearance of being somewhat successful in life.
Maybe we got a good education, have a spouse or significant other, a social life, some kids, are homeowners, and have achieved some level of career recognition or other accolades. Maybe along with all that, we’ve even managed to help others, contribute to the greater good, and navigate a slew of difficult life events, etc. (It’s important to openly acknowledge here, that all of this requires a certain level of privilege, whether you’re neurodivergent or not).
In any case, when we’ve done some or all of those things for a good portion of our lives, and then find ourselves not able to keep all the balls in the air anymore, despite putting in the same amount of effort we always have, it’s a hard reality-pill to swallow. When life’s demands finally exceed our capacity, it can be an incredibly confusing, disruptive and dysregulating experience – for ourselves and potentially for the people around us.
When we have inadvertently (and sometimes intentionally) given the outward impression that we’ve managed quite well up till now, it can be difficult for folks to accept that we no longer have the ability to do all the things. It doesn’t make sense to the people around us (and sometimes to ourselves) when we ‘suddenly’ seem to be struggling for no apparent/warranted/acceptable reason.
What neurotypical people don’t/can’t understand, is the disproportionate effort it takes us neurodivergent folks to achieve the things we do/have. It’s inevitable, that the relentless drive to ram our square peg selves into this round hole world, will eventually deplete all of our reserves. At some point, the well runs dry. The battery dies. The goose is (over)cooked. In my experience, people seem to have a hard time accepting that.
To quote my buddy Mike (also a late-diagnosed autistic) who made this comment on a FB post, “…the longer you go in life before your challenges are acknowledged the more you become a victim of your own success. Even when exhausted and showing battle scars that should be obvious to anyone who gives a damn, you are told to celebrate your “resilience” and shut up.”
He is so correct. When you do well, people expect more of the same, or better, and you grow to expect that of yourself, too. When you’ve always been viewed as capable, people (and sometimes your inner critic) are especially harsh when you falter, show signs of weakness, and/or when you don’t meet expectations, or the narrative folks have crafted about you.
To be fair, when you give the impression that you have your shit together and are in control of your life, you can’t blame people for thinking that’s just who you are. High-masking Autistics/AuDHDers/ADHDers become masters at embodying the role of strong and competent. We cultivate internalized ableism, like it’s our job.
When we start to feel like we’re losing our footing and not able to keep up, we panic and double down. We may even pivot and act like/convince ourselves that the pivot was the plan all along. Deep down, we feel the insecurity, the uncertainty, the incongruence, the dis-ease, the disembodiment of playing neurotypical, when we aren’t. But we don’t show it. We don’t take the mask off or let it slip. That is, until we’re left with no other options.
“Autistic masking often looks like distancing from anything that looks like sensitivity, disability, or weakness to such a degree that person can’t even be honest about how they exist in the world, all while they feel shame for their differences as if they are a moral failure...Autistic masking often comes in the form of adopting toxic positivity and toxic industriousness as existential masks..." (From Neuroclastic on FB, April 11, 2023)
Hello. It’s me. Ugh.
As I’ve mentioned, I came to my own discovery/diagnosis like a lot of late-diagnosed folks do, because I/life began to unravel in ways I could not seem to remedy – no matter how industrious, brave, positive, and well-intentioned I was. The mask was slipping, and I had finally run out of spoons (capacity) to keep consistently role-playing high-achieving neurotypical.
To be clear, I do still mask some, because at this point, it’s become an ingrained default strategy to navigate daily life. But my capacity for masking is now limited. I just can’t (and don’t really desire to) be as social or out and about as I used to be. It’s hard to justify or explain to people that being in situations where I’m required/expected to mask, is far too depleting, takes forever to bounce back from, and generally requires more alcohol than I care to consume these days, because after-effects. Over and above this, I have fibromyalgia - which is exacerbated by stress and over-doing it.
I’ve heard other late-diagnosed folks say they don’t even know who they are without the mask. I can relate to this, but I’m working on recognizing ‘myself’ and leaning into to that – even though it’s not always comfortable. Since I’ve unlocked this next level of self-awareness, I sometimes catch/observe myself masking (very meta). It can be revelatory, jarring, cringey, or laughable.
It’s been hard to come to terms with the fact that my unmasked self is not the self that a lot of people would prefer me to be. They find it uncomfortable, confusing, a bummer, too-much.
My unmasked self is intense, highly sensitive in all the ways, hyper-empathetic, blunt, super observant, demand avoidant, ever-curious, autonomy-driven, hyper-vigilant, hierarchy-averse, comfort-seeking but often uncomfortable, wildly (often stifled) creative, uninterested in superficiality, cares deeply about people but/and is often hurt, confused, and disappointed by them, believes in science and trusts the intelligence of nature, is obsessed with justice, expects us all to do better when I/we know better, sees flaws and overwhelming beauty everywhere, craves understanding and to be understood, has a hard time tolerating disingenuity, and is generally highly agitated/impacted by a lot of things most people seem unphased by.
In short, my unmasked self is a complicated messy mix; a dash of hippie, a dash of hood, a good dose of geeky intellectual, a heaping spoon of hedge witch, and zero percent ladder climbing corporate stooge.
It’s who I am, and looking back on 55 years, it’s who I‘ve always been. Although some of these qualities may not be news to people who know me, few realize or understand that for the most part, I’ve been forced to subjugate (mask) a lot of my core-self in order to assimilate, feel accepted and included, and even to get needs met.
These days, I’m less and less inclined or able to hide/suppress/subdue these qualities – because as we’ve established, masking sucks a lot of energy and resources that I no longer have.
Sources and Resources (not an exhaustive list):
Amy Pearson & Keiran Rose, “Autistic Masking: Understanding Identity Management and the Role of Stigma,” West Sussex, Pavilion Publishing & Media, 2023.
Devon Price, PhD, “Unmasking Autism,” Harmony Books, 2022.
Article on Unmasking in Autistic Burnout by Dr. Alice Nichols:
https://www.dralicenicholls.com/unmasking-with-the-people-we-are-closest-to/
Article on Autistic Masking by Dr. Megan Anna Neff:
https://neurodivergentinsights.com/blog/what-is-masking-in-autism
Article on Internalized Ableism and Neurodivergence by Sophia Kaur at Neurodiverging:
https://www.neurodiverging.com/what-is-internalized-ableism-neurodivergent-people-need-to-know/
Research Article:
What You Are Hiding Could Be Hurting You: Autistic Masking in Relation to Mental Health, Interpersonal Trauma, Authenticity, and Self-Esteem (Joshua A. Evans, Elizabeth J. Krumrei-Mancuso, and Steven V. Rouse). Autism in Adulthood 2024 6:2, 229-240
Facebook Posts:
On Autistic Masking, by Neruoclastic, April 2023
https://www.facebook.com/share/p/17zvPEdiPQ/
On Chronic Illness by Dear Fibromyalgia – This is the post I shared on my Audhd Lara page where Mike of Mike’s Neurodivergent Toolbox left a wise and insightful comment I referenced above:
https://www.facebook.com/share/p/1Kgo2k8QVd/
Podcast Episode:
Autistic Masking: The Impact on Mental Health, Identity, Safety, and Privilege on Divergent Conversations Podcast
https://www.divergentpod.com/blog/ep-14
YouTube Videos:
Autistic Masking is NOT What you Think, by I’m Autistic, Now What?:
https://youtu.be/Rjk2EtQVhHc?si=Kp-1Vzzc4EvIvJCD
Discovering your Neurodivergent Masks, by The Thought Spot:
https://youtu.be/HiU1WRPJa-4?si=Dvp1JkH_A_JVapa2
How To Spot High-Masking Autism: 13 Signs, by Dr. Kim Sage:
https://youtu.be/IqxTLPv0ox0?si=vbRdMc8_6wGSU6G6
Autistic Masking REALLY – Kieran Rose & Dr. Chloe Farahar on Aucademy:
https://www.youtube.com/watch?v=NVItB4UZbDY&t=1s
‘Am I disabled?’: Confronting your internalised ableism | Jo Copson | TedX Talk (*Jo is diagnosed with Ehlers Danlos Syndrome – which exists at higher rates among Autistics):