Masking

Most people do some version of masking. Most people call it "Reading the room."

But for many people, particularly those with autism, masking isn't a social skill. It's a survival strategy that starts in childhood, runs on autopilot for decades, and costs far more than anyone on the outside can see.

In this episode, we break down Miller et al.'s 2021 paper from Autism in Adulthood, which is a qualitative study of 461 participants across three groups: people with autism, neurotypical adults, and neurodivergent adults without an autism diagnosis. We get into what masking actually involves, what it does to your sense of identity over time, why it gets harder the longer it runs, and why the people who are best at it are often the least believed when they say they're struggling.

This one is for anyone who has ever held themselves together in public and fallen apart in private, and wondered why nobody ever noticed.

Transcript

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I want you to imagine the last time you walked into a room and immediately started adjusting. Maybe you changed the way that you were standing. Maybe you softened your voice a little or straightened up a bit. Maybe you clocked who was in the room and did a quick calculation or analysis and immediately swapped out that version of you. Most people do some version of this. We call it reading the room. It's so automatic that you barely notice it. But I want you to imagine that for you, it was never automatic. That every single social situation required the same deliberate, exhausting, fully conscious work. Decoding what to expect, translating it into a language that your brain can understand, and then performing it in real time while also trying to just be a person in the room. And imagine you've been doing this since you were a child, before you even had a language for what this was, before you knew that not everyone was working this hard just to be normal. And then imagine someone tells you to just be yourself, and you realize that you don't actually know what that means anymore. Because this performance has been running for so long that you can't tell the line between the performer and your skin. I'm your host, Nafisa Golwala. I'm not a clinician, I'm someone who believes that good research deserves a wider audience, and that most people, given clear and honest information, are capable of doing something meaningful with it. If you've been following along, you know we've spent a lot of time on the autism spectrum disorder. We talked about it in episode one as walking through an airport, going deep into the neuroscience in episode two and three, and then took a detour into maladaptive daydreaming in episode four and five. And now we're back and we're finally here. Masking. I've been waiting for this episode. Today's paper is Miller et al. Masking is Life: Experiences of Masking in Autistic and Non-Autistic Adults, published in Autism in Adulthood 2021. Let's get into it. If you listen to episode one, you'll remember the airport. We used it to understand what the diagnostic process looks like for people with autism. The structure, the journey, who gets checked, who gets stopped, who slips through. I want to come back to the airport now, but we're going to a different part of it. We're going to where it's a scanner. Everyone has to go through the scanner. That's just social life. Everyone walks through, but the scanner is calibrated to detect differences, things that fall outside a narrow definition of what's expected. And if it goes off, there are consequences. You get pulled aside, questioned, dismissed, excluded, sometimes even targeted. So you learn early to put things in the tray before you walk through. In this case, for people on the spectrum, their stems, your sensory responses, the way you actually communicate, the parts of you that set off the alarm, you strip them down, put them in the tray and walk through. And it works. You get through. Nobody stops you. But every time you go through, you put a little more in the tray. And you get so good at knowing what sets the alarm off that eventually you've left almost everything behind. And one day someone says, just be yourself. And you look back at the tray and genuinely don't know what was yours anymore. Some people can never get through the scanner no matter what they put in the tray. It goes off anyway. And they become targets. Not because there's more wrong with them, but because the scanner found them and the people watching made a decision. The scanner isn't looking for danger, it's looking for a difference. And it was built by people who never had to think about what they were carrying. That's masking. The paper defines it as the suppression of aspects of self and identity in order to, and I'm quoting directly, fly under the radar or appear normal. It can be conscious, like deliberately forcing eye contact or scripting what you're going to say before a conversation, or it can even be unconscious, something you've been doing so long it doesn't even feel like effort anymore. You just do it. The paper uses masking as an umbrella term, covering camouflaging, compensation, and adaptive morphing. Different words, same thing, which is essentially just performing a version of yourself that is more legible, more acceptable, and more palatable to the world around you. Masking has been studied mostly as something people with autism do, and there are real reasons for that. It's been proposed as a key explanation for why women and girls with autism are diagnosed so late, or not at all, because they're often better at hiding the traits clinicians are looking for. It's been linked to mental health difficulties, burnout, and suicidality. These are not small findings, but here's what this paper is specifically asking. Is masking really an autism thing? Or is it something that happens across neurotypes, including people with no neurodevelopmental diagnosis at all? And if it is, what does that tell us about what's actually driving it? That's the question. And that answer is complicated, but in my opinion, in a very useful way. The researchers ran an online survey and recruited 461 participants through social media. Three groups, 250 people with autism, 120 neurotypical adults, and no neurodevelopmental or mental health diagnosis, and 81 neurodivergent adults without an autism diagnosis, but people with things like ADHD, dyslexia, depression, or anxiety. Out of those 461, 238 provided written responses about their experiences of masking. That's 144 people with autism, 25 neurotypical participants, and 49 neurodivergent participants without autism. Those text responses are what the paper analyzes. The method used is called thematic analysis, which is a qualitative approach where researchers look for patterns and shared ideas across responses. Two of the authors, one with an autism diagnosis and one who was going through diagnostic assessments at the time, independently coded the data and then worked together to build themes. The fact that researchers with lived experience were involved matters, and the paper is upfront about it. They found seven themes. Most were shared across all three groups, but one came exclusively from the people with autism. The first theme is about the external layer of the mask, what it looks like from the outside. And this one is consistent across all three groups. People described copying phrases, dress sense, body language, studying facial expressions as children so they could mimic them more accurately, and then practicing in front of a mirror. One participant with autism said, I copy people's phrases and dress sense too. A person from the neurodivergent group said, Growing up, I studied facial features, behaviors, and body language to mimic more accurately. And from the neurotypical group said, I used to copy friends and practice in front of the mirror as a child. That's three different groups saying the same thing. The external strategy watch, decode, imitate is not specific to autism. It's something a wide range of people do when they feel like they don't naturally fit the social template around them. The paper makes an important distinction here though. Adjusting how you present yourself in different contexts isn't the issue. The issue is when those adjustments are based on social communication styles that's not native to you. When you're shifting between a genuine version of yourself, you're performing a version that was never yours to begin with. The next theme, and this is the theme I want to spend a little bit of time on because I think it's the most important and the hardest to explain, is about what masking does to your internal sense of identity. The paper names it after a direct quote from a participant. They said, Life is masking. Masking is life. That's a 35-year-old woman with autism. One sentence, it kind of says everything. When you've been masking for so long, the mask doesn't feel like something you put on. It starts to feel like you. And the question of who you are, what you actually want, how you actually communicate, what you actually feel becomes genuinely harder to answer. One participant from the neurotypical group wrote, I feel foreign to myself because all the behaviors I've adopted to mask have been to keep myself safe, but they've also boxed me into a corner and stifled me. And then there's one, a neurotypical woman, 48, she compared the experience to grief. She says, I feel that I am grieving for the little girl who just wanted her own space and peace to read and play with dolls. She was forced to be someone else. I feel as though I am wearing a different person. I don't know where I went or who I could have become if I hadn't been forced to be someone else. I want to sit with that. Grieving for who you could have been. Not just the exhaustion of performing, but the loss of something that never got the chance to exist. The paper frames this as a fundamental tension. The mask offers protection from external harm, but creates internal fractures. It keeps you safe, but you're slowly disconnecting from yourself, from who you are, from what you believe. And the longer it runs, the harder it becomes to even know what you lost. Going back to the airport, you learned about what you put in the tray to get through the scanner. And you got so good at it that one day you're standing on the other side and the tray is full, and you're not sure any of it was yours to begin with. That's really heavy, and it's and it's also something that a lot of people go through on a daily basis, which is why it becomes so hard to explain this to people because there's so many people out there that are doing this from all different walks of life that people don't see it as an issue anymore. But it is, because why aren't people allowed to be the way that they want to be just because society expects something different of them? It's so emotionally exhausting and taxing physically as well, where people can't even function when they come home at night. And that's what the next theme is: the sheer resource strain of masking. And then again, all three groups said this: people with autism, neurodivergent people without autism, and neurotypical people all described exhaustion and burnout as part of it. One person with autism said, I can manage to exist in a neurotypical world as long as I'm okay mentally. If I'm stressed, it all turns into jelly. And so do I. From the neurodivergent group, they said, almost spinning like a top mentally, it can take a day or two to recover. But but here's where the paper starts to distinguish the autism experience specifically. People with autism were the only group who connected the exhaustion of masking to suicidality. One wrote, I didn't learn that I only get suicidal during meltdowns until I removed all masking obligations. I spent 13 years in burnout. 13 years? That's not a crisis. That's a baseline. Someone who spent 13 years in a state of such constant depletion that removing the source of it felt like discovering that they were allowed to breathe. Participants with autism also specifically mentioned what the paper calls dangerous coping mechanisms such as restricted eating, substance abuse that other groups didn't necessarily raise. One person developed anorexia as a way to try to fit in somewhere. Another talked about using alcohol to help with masking and how giving it up made masking more difficult. The paper is careful here. It doesn't say masking directly causes these outcomes. It says that the data suggests there may be something specific to autism experience of masking that makes it particularly harmful and that this needs more investigation. But the signal is there and it's not subtle. The fourth theme that was discussed in the paper was only one that appeared exclusively in responses from people with autism. The research called it neurotype nuances, and it's about the way that having autism specifically shapes what masking actually involves. So two things came up consistently. First, sensory suppression. People with autism describe masking responses to sensory discomfort, such as sound, touch, light. That was actually painful or overwhelming. One wrote, I frequently mask sensory differences such as pain due to sounds with too high pitch, too low pitch, or too high volume. Another said, sensory processing difficulties, particularly auditory, make masking tougher. This is significant. It means masking for many people with autism isn't just about social behavior. It's about physically suppressing a pain response in public. Sitting in a room that hurts and not letting anyone see that hurt because the cost of showing is higher than the cost of hiding it. Going back to the scanner, some of what goes into the tray isn't a habit or mannerism. It's a pain response. And you're just meant to leave it there. The second thing that the study found was stimming. Several participants wrote about suppressing stims, their repetitive movements or sensory behaviors that for many people with autism serves as a real self-regulatory function. One wrote, Many of us hide stimming by choosing discrete stims. Another, the worst part is not being able to stim when I need to. Stimming isn't a quirk or a habit. I want to make that very clear. For many people, it's a coping mechanism, a way of managing the nervous system. When you suppress it to appear normal, you're not just performing a social behavior, you're removing a tool you actually need. And when that tool is gone, the system that depends on it has to find another way. That's one of the proposed mechanisms behind why masking in people with autism specifically leads to the kinds of severe outcomes we just talked about. There are also quieter details in this theme. One participant mentioned using memory as a tool, memorizing facts about people so she'd always have something to ask them, something to keep the conversation going, a workaround that looks effortless from the outside, but costs so much from the inside. The next theme that the research talked about, which is the fifth theme, is the external consequences of masking. And the name the paper gives, it comes from a participant's quote. No one believes me. Here's the catch: masking works. That's the whole point. You present a version of yourself that reads as fine, normal, functioning. And then when you try to tell someone that you're not fine, that things are hard, that you're exhausted, they look at you and say, but you seem okay. Participants wrote about how masking prevents real connection. One from the autism group said, The only person in the world that even begins to know the real me is my husband. Others wrote about the confusion of people who knew them before they started unmasking. Friends who didn't recognize this version. Someone said, My ex told me that I was faking being autistic. Someone said, I have struggles to be myself, yet doctors claim there is nothing wrong with me. I have chronic pain. People look at me and say, I know, but you look fine. The paper calls this a double bind. If you mask, you're believed and supported, but invisible in your actual distress. If you don't mask, you're visibly different and at higher risk of being excluded or targeted. One participant said, I have never been able to mask, which is why I have always been a target for bullying and abuse. This is actually ridiculous. It's like a double-ended sword. You can't win either way. If it goes off, there are consequences. If it doesn't go off, nobody knows what you left behind. And either way, something is lost. The paper's conclusion on this is direct and worth repeating. The problem is not with the person, the problem is with society and the external world and whoever built these bullshit rules. The sixth theme is about what drives masking. Short answer, stigma. People across all groups described learning to mask as a response to the threat of negative social consequences. Not because they chose to perform, but because they learned early that certain parts of themselves were targets. One from a neurodivergent group said, I grew up believing that my love for science, nature, and mechanics was for nerds. And I learned that nerds were harassed. So I learned to study, analyze, and mimic the popular kids like I was preparing to survive something intense. Social interactions. Another participant with autism offered what I think is the most useful framing of this whole paper. Masking is the language of neurotypicals. It is not a direct language, but an automatic one that autistics have to learn. It takes years, and even then, there's no perfection to it. That line deserves unpacking. Neurotypical social communication is the language. For native speakers, it's automatic. They're not thinking about it. Think about it in the sense of you learning a new language. You have to constantly be thinking about the words that you have to say, but if it's your language, you just know what you're gonna say next and you don't have to think much about it. But if you have to learn it deliberately, consciously from scratch, and then perform it fluently under pressure, that's not the same thing. It will never be the same thing, and the effort of doing it every day for years is invisible to the people who were born speaking it. The last theme is about time and it cuts across everything. Masking starts early. Many participants described learning to suppress aspects of themselves as young children before they had any language for what they were doing or why. One with autism said, I have used masking from a very young age because I thought I was broken. Over time it becomes automatic. And that's when it gets genuinely hard to undo. One participant said, I think I'm very good at masking. So good that I'm struggling to tell what's the mask and what's not. Another said, I have spent my whole life masking without knowing I was doing it. That second one is worth thinking about masking without knowing you're doing it. Not a performance you're consciously putting on, a way of being that formed so early and so completely that it became indistinguishable from your personality. One participant described what happens when you try to unpack it. It is very hard to pick apart what you have been masking as you don't know what's normal. You begin unraveling all the examples throughout your life, it takes a huge emotional and physical toll. I find it confusing how I have coped before and now I cannot. That's not someone falling apart, that's someone finding themselves. But the process is painful and disorienting, and there's no roadmap. The paper also makes a point that I find quietly devastating. Being more practiced at masking doesn't make it less costly. The longer you've done it, the more entrenched it is, the more it takes to maintain. And a neurotypical woman wrote this at the end of the study after going through all the questions about masking. I have just cried through the questions, realizing how hard things have been for me. She didn't go into the study knowing she'd relate to it, but the framework gave her something she never had. That's what naming does. It gives you a language that you can fall back on. Okay, that was a lot of information. Let me pull this all together. Because the findings are more useful than they might seem at first. Number one, masking is not specific to autism. People across all neurotypes describe hiding aspects of themselves, mirroring others, exhausting themselves in the process, and losing track of who they are underneath. That finding is about stigma and what it actually costs to exist in a world with a narrow definition of what normal is. But some aspects of masking do appear to be specific to people with autism, such as sensory suppression, stimming suppression, the removal of genuine coping mechanisms, and a link to suicidality and severe burnout that the other groups did not report. The paper is explicit that masking in people with autism may involve something distinct and something more severe, and this needs serious research attention. The paper also calls that matter. Understanding masking is important for improving diagnosis, particularly for women and children with autism who are being missed because they've learned to hide the traits clinicians are looking for. But understanding masking also has to go beyond diagnosis. It has to include the underlying experience of having spent years or decades feeling like you had to be someone else to survive. A label doesn't undo that, and any support that ignores it is going to be incomplete. The paper closes with masking is a multidimensional, interactive concept that develops across the lifespan and is driven by stigma, which means that if you want to address masking, you have to address what makes it necessary in the first place. The scanner doesn't get fixed by training people to hide more of themselves. It gets fixed by questioning who built it, what it was actually calibrated to find, and whether the world on the other side is one. That's worth getting through to. That was a lot. Let me leave you with what I think the paper actually built. It built a picture of something that most people experience in some form, but that lands hardest on people who are the furthest from assumed default. It built a case for why just be yourself isn't mutual advice. And that's mainly because people have been doing it for such a long time that they don't even, they don't even know that they're doing it. If you recognize yourself in any of this, if you heard the grief quote, or I don't know where I went, or I used to practice in front of the mirror as a child, this research is for you. You're not performing because you're weak. You're performing because you learned that not performing had consequences. And if you love someone who masks, if there is someone in your life who always seems fine, who never asks for help, who holds it together effortlessly, fine is what masking looks like from the outside. The cost being paid is something that people can't see. Next episode, we're going to move away from ASD and look into one of my favorite and most beloved topics, ADHD. Until then, remember, things can be redesigned. They just have to be built brick by brick.