Becoming Visible

“Masking” in Clinical Literature

The concept of “Masking” or “Camoflauging” autism in order to “fit in” has begun to show up in clinical literature in recent years. But we as autistic people have been aware of and writing about the phenomenon of masking for a very long time. Both of masks shaped by brutal training, as described by Kassiane Asasumasu’s Indistinguishability Series, and of masking as survival – like Pretty Eyes Ellis writes in “All the Weight of Our Dreams: on living racialized autism” “…looking for where the autism was bleeding out, searching for places and ways to stuff it back in.” Judy Endow wrote about the Burnout we endure after years of building masks, layer after layer. Melanie Yergeau describes the Demirhetor – the way we are always tensored step by step, inching toward zeno’s paradox. Never able to escape the uncanny valley.

Images from headlines of journalistic outlets covering autism research. The top image shows a person with long red hair smiling on one side, and frowning on the other. The middle image shows the caption "There's such a thing as 'autism camouflaging' and it might explain why some people are diagnosed so late.' The bottom image shows a person of color with their hair pulled back looking blank with a mask pulled away from their face that is expressive.
“Masking” in Clinical Work * Victim Blaming * Absolves Clinicians of responsibility for Diagnosis Disparities * Disturbing imagery insists that our “true selves” are “sad-selves” * Reductive Gender-essentialism hurts trans and intersex people * No critical analysis of Masking x Race

I am really worried about the new clinical rhetoric of masking. These images featured in stories about masking all present the mask as expressive and lively, and the true-self as vacant or sad. I am very concerned about clinical masking rhetoric becoming the new empty fortress, or empty shell rhetoric.

So, clinicians are talking about masking now. And they want it to be an answer for them. They want it to explain late diagnosis. And gender disparity. So they make it a “girl thing” and they blame late diagnosed or undiagnosed autistic people for their own lack of supports! But masking isn’t a girl thing. The gender disparity is still a clinician bias. And clinicians aren’t even *talking* about masking and race. But racialized autistic people sure as shit are.

Masking in the Margins

If you read “All the Weight of Our Dreams: on living racialized autism” you will find numerous essays and poems that speak to the unique experiences and necessities of masking as a racialized autistic person. (ATWOOD is not the only source of accessing the work of Autistic people of color. It is, however, a very large collection of work. Access this page for a list of blogs and contributors.) I am going to present an excerpt of Eliora Smith’s Passing Strange. For the white autistic people reading, like myself, I invite us to reflect on what resonates with us, but also acknowledge the intensity which is truly beyond our experience. For the autistic people of color reading, I hope Eliora’s words hold power for you.

“Sunlight is
I smile differently in public and
Do not let them capture it on film.

Fear will keep me safe in the end,
Like it kept my grandmother grandmother mother safe.
Keep me running. Keep me careful.
Fear will keep me quiet, so they don’t see.
There is fear in my blood and in my books and on my walls
A history of hatred taught me how to be afraid

There is no group for what I am.
I am not white, I am afraid of them.

I will realize this was always there and I was always me.
As I struggle to breathe behind my mask.
But I am invisible
Or else they do not care to look.”

– Excerpt from Eliora Smith’s Passing Strange

“The Cost of Masking”

As I said earlier I am really worried about the clinical rhetoric of masking becoming the new empty fortress rhetoric. I’m really worried about the new studies which link masking to suicidality. I’m worried about these studies not because they aren’t true I think they are. (I think some of you know, viscerally, how true they may be.) But I worry about how they get construed and constructed. I’m terrified that they will begin to blame us for our own suicidality. “Just stop masking.” “Stop being a shell.” “Show us your authentic self.” “Let me hear your voice.” “I promise I won’t get mad.” Suddenly, after decades of “indistinguishability programming” they’re going to start blaming our survival instincts, rather than ever examine the ways that they create the environment in which we must “suit up” for survival in the first place.

“The Cost of Masking” Narratives further pathologize autistic self-preservation – as if we willfully choose to normalize, as if we genuinely exchange tokens for belonging, as if our money is even good in this economy. They don’t want our currency. They are not fooled by our masks. But they demand we wear them anyway. This is not a fair-trade. So I’m not here to tell you to shed your masks. As if you can just choose to stop. As if you know the difference between their expectations and your self. You do whatever you need to do whenever you need to do it. But you, your self and your personhood – You are not a mask. Even if you ARE aware of how you *TRY* – You are NOT a mask. You are a whole person. Just as you are. You don’t have to change a damn thing that you don’t want to.

Are you invisible?

l have heard so much about invisible disability recently. And I think it’s bullshit. Not just for Autism, but for all so-called “invisible” disabilities.

We move different

We communicate different

We experience different

Chronic Illness, Anxiety, Depression… makes us absent – absence is conspicuous

From Passing Strange again:

“Years later I will know there were
A thousand signs
A thousand fears barely known that make me
Not like them.
l will realize this was always there
and I was always me
As I struggle to breathe behind my mask.
But I am invisible

Or else they do not care to look.”

So who makes us invisible?

Being invisible is about passing. And none of us pass for NT. Even when we are trying. Neurotypical People choose to “pass” us, to erase us, for their own comfort, for their own purposes.

For Eliora, being invisible is also about passing for white, which Eliora does not. But white people like me are often relieved to erase PoC, like Eliora, when it is convenient for us.

I do not actually pass for cisgender. I am not femme enough in attitude, in expression, or in sociality. The sexism that I experience is always coded by how ‘unwomanly’ I am, how ‘too much like a man’ I have been caught acting, and how uncannily at ease I am with never being either.

Caption reads "Masking Fallacies and Realities" Left image reads "Whose Mask?" And shows a person holding a mask in front of someone emotively flapping. Right image reads "Double Mask" And shows a person wearing a blank mask and standing still while someone holds an additional mask up to them.
Being invisible is about passing, and passing isn’t up to us. It is a violent and conscious erasure done unto us by others. Becoming visible is about disclosure. Disclosure as advocacy, activism, and resistance.

As clinicians co-opt the concept of the mask, they are missing essential nuances and multiplicities of our diverse experiences with masking and passing. I am not consciously aware of masking mechanisms that I may or may not engage in. But I am very aware of the passing mask held up and withheld by the people I interact with. I have friends that ARE very aware of their masking mechanisms. They have explicit memories of recording the social convention to memory – of rehearsing the pantomime – of constructing an amenable affect that will be treated with at least some… Passing tolerance. But they too feel the violent burn of the passing mask. The reason why passing hurts, whether the other person chooses to pass us or decides to unmask us, is because the very power over our interpretation is a violent disruption of our autonomy. Passing is not up to us. We are at the mercy of our oppressor.

Becoming Visible

So I said that I wasn’t here to tell you to shed your masks. And I meant it. When I talk about becoming visible, l am not talking about masking or not masking. I am talking about disclosure. People will need to get used to us in all our many diverse embodiments, including our masked ones.

Disclosure as Self-Care

Sometimes, we are not in control of whether or not we disclose at school or at work, or even with friends. Sometimes we don’t feel safe, or sometimes we are forced to disclose in order to have access to safety or support. So talking about disclosure as self-care can be really problematic.

I want you to understand that when I talk about disclosure, I am talking about both announcing that you are autistic and also NOT doing so. So that entire process of navigating disclosure, is an act of self-care, and of self-Iove. It is up to you to decide what is right for you.

Sometimes I don’t disclose everything, but, for example, when someone tells me they want to have a phone call, I tell them we have to do a video chat with a text-chat window, so that I can type if I need to, and I don’t always explain why. This sort of ambiguous disclosure is a way to navigate whether or not deeper disclosures are appropriate or necessary or safe.

Disclosure as Advocacy

Know that whenever you do disclose being autistic or otherwise disabled, you are performing an act of advocacy.

You are claiming your right to be in that space, and the right of other autistic people to be in that space with you. So when you think about whether or not to disclose, think about who might come after you, think about whether or not they will have the same choices you do, and how your choices might impact them.

Disclosure as Activism

By disclosing even when it isn’t “necessary” for me, I can create space for others to be autistic in this space in the future. But I can also take that space away if I am not careful about my impact. It’s not activism to declare that “This is what autism looks like” because autism doesn’t always look like a little white left-of-femme that shakes when they talk. But it is activism to say “Yall have no idea what an autistic person can be, we’re everywhere and we’re coming and here’s one of many ways to be welcoming to people like me.”

This post adapted from my portion of our panel at Autistics Present: The Social and Political Implications of Disclosure

Original slides for Becoming Visible Presentation at Autistics Present 2018

Disclosure is Political is Cultural by Dr. Sara María Acevedo at Autistics Present 2018

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