Masking and “Autism” – A Narrative?

🇬🇷 Ελληνικά

The concept of “masking” or “camouflaging” is shaped within a framework of ideas surrounding dominant notions of the linear spectrum of functioning and the denial of difference in functioning, which influence the interpretation of our lived experience.

The term “autistic” originates within the medical model and was first used as a differentiated diagnosis by Sukhareva, while earlier Bleuler had used it to describe a condition that did not constitute a separate diagnosis in itself.

Until 1994, the DSM included “Autistic Disorder” as a diagnosis (along with several related diagnoses that were later removed), which according to their criteria identified very few cases. In 1994, “Asperger’s Syndrome” was included in the DSM as a distinct diagnosis. In 2013, the diagnosis was removed, and it was recognized that — together with the other related diagnoses — it referred to the same “condition” within the medical model, leading to the current diagnosis of Autism Spectrum Disorder.

The DSM appears to modify the diagnosis as perceptions of Autism shift. At the same time, symptoms of distress and traumatization are included as diagnostic criteria for “autism,” understood as a “disorder.” Misconceptions about Autistic being lead to contradictions that do not hold together conceptually, and to categorizations that cannot be coherently made.

Dominant perspectives that have shaped the interpretation of our lived experience

• Denial of difference in functioning 

• A linear spectrum of “functioning”

Within the same framework, the contradictions are not resolved; on the contrary, they are cynically revealed in their true dimension. The contradictions exist within a framework that denies a simple fact — the difference in functioning — and instead constructs “autism” as an entity. Anything that does not begin by acknowledging this difference cannot resolve them.

Despite the progress that has been made in our visibility, these notions of a linear spectrum lie at the basis of the medical model and of diagnosis. These dominant perceptions are still there—perceptions that we too have indirectly accepted (masking as ability/functioning, denial of difference in functioning).

Ideas embedded in this framework, shaping and reinforcing a coherent narrative

• “Autism” as an entity: a) nosological and b) behavioral. 

• Pathologization of Autistic existence. Anything an Autistic person struggles with is attributed to the pathology of “autism,” without any benefit. 

• Projection of every situation onto an inherent pathologization, and dismissal of the impact of external conditions, which are therefore not seen as needing any adjustment to support the individual. 

• A goal of eliminating or rendering invisible the nosological or behavioral entity, rather than providing support. 

• Negative stereotypes projected onto the nosological or behavioral entity. 

• Division into levels of “functioning” based on “high intelligence” or “normal behavior,” romanticized stereotypes, or denial of difference and of any systemic issues in access and support. Normalization and enabling of social and systemic exclusion.

At the foundation of the entire medical model framework of perception, we can identify an initial construction of “autism” as an entity: a) nosological and b) behavioral.

The goal of elimination or invisibility rather than support — which the construction of “autism” facilitates — becomes evident in the direction toward behavioral normalization, the search for cause and cure, and the dissemination of negative stereotypes and narratives.

The problem with “autism levels”

From the lack of recognition and the existence of an “invisible level” to the direction toward behavioral normalization and indifference to support, the existing system and prevailing model is full of gaps and superficiality. It is officially left to the behaviorist subsystem, to which it grants authority, while the gap is also filled by other “alternative” subsystems that exploit parents’ sense of helplessness and the real lack of support (pseudo-therapies, even dangerous ones).

The categorization of the diagnosis into “levels” refers to support, but there are perceptions associated with these levels that need to be disentangled. These perceptions concern, more broadly, the framework of “diagnosis” (viewing autism as a “disorder,” and therefore a nosological entity, with levels translated as “mild” or “severe”), its historical context, and the dominant ideas and stereotypes that spread socially through the prevalence and authority of medical model approaches. They concern ideas of “high intelligence” or “normal behavior” that have prevailed as the basis for the division into levels.

Τhe word “autistic” is being redefined today within a different framework. In this framework, we speak of a mode of functioning; there are no gradations or levels within it. This does not negate any support that an Autistic person may need.

An informal separation of functioning is made on the basis of “behavior,” with one level of pathologized “autism” and the invisible level interpreted as a “personality type.” “Behavior” is separated, while we can perceive a primary construct of “autism” as a behavioral entity.

In contradiction to this, we can discern the informal separation of functioning on the basis of “high intelligence,” which reflects the historical context of diagnosis.

Is “masking” really the cause of the invisibility of Autistic women?

The eugenic and sexist origins of the “functioning” divide, linked to ideas of “high intelligence,” the “male brain,” and views of disability as a measure of the value of human life. From this emerged the notion of “levels” as two extremes — “high-functioning” and “low-functioning.” These ideas have influenced the medical model throughout its historical continuity and have shaped perceptions and stereotypes that continue to permeate society.

Eliminationist views regarding so-called “low functioning” are still expressed today. Temple Grandin, a highly privileged Autistic with access to Harvard, has expressed such views and considers that only “high-functioning” Autistics should be born.

“Intelligence” as a comparative measure and criterion of value.

Ideas of “productivity”, “usefulness” of people in society, and of “sociality”, as defined (also) in National Socialism as an inherent characteristic and its deficit (Gemüt).

The origins of diagnosis within the historical context of National Socialism and the child psychiatry that prevailed as its continuation. The impact is evident in the predominance of diagnosis in boys and socially in the stereotype of the white Autistic boy with “high intelligence”.

Perception of functionality as behavior based on allistic functioning, reflected in ideas about “camouflage”. It involves the erasure and denial of the real difference in functioning. From this emerges the idea of “levels” as, on the one hand, pathologized “autism”, and on the other, the non-recognition of difference (and what that entails), reframed instead as a “personality type”. The behavioralization and psychologization of difference in functioning.

This is also expressed in the idea of “therapy”, behaviorism, and the behavioral practice “ABA,” aiming to change “behavior” and eliminate so-called “Autistic behavior”. If the person themselves “achieves” camouflage, they supposedly do not need anything; they are normal. Or they have mental health issues, trauma, personality disorders, and other diagnoses for which they must seek therapy or “manage” individually.

This point, too, is intertwined with and deeply rooted in the historical context of diagnosis — as are ABA, its ties to “conversion therapies,” and its founder, Ivar Lovaas.

Projection of traumatic, antisocial, hostile, and inaccessible environments and systems as inherent deficits in “sociality” and “empathy”, as pathologized or negative “traits,” and as “behavior problems.”

Victim-blaming. Mechanisms of rationalization and enabling of exclusion and abuse.

The concept of “masking” or “camouflaging” is formed within this dominant framework

• Masking as an ability/functionality and a capacity to overcome Autistic functioning. 

• Construction of an invisible level of functioning, which becomes the target of behavioral interventions. 

• Our lack of recognition is attributed to “camouflage” as an act of invisibility on our part. 

• Camouflaging as a social skill or art. 

• The assumption that behavior can be separated and shaped as an independent entity. A direction toward normalization of behavior rather than support. Camouflaging as the hiding of “autistic traits.” 

• Perceiving masking as a matter of “personality,” which does not align with our experience. 

• Behavioral, psychological, and moral characteristics are projected onto the difference in functioning. 

• Camouflaging is seen as providing some kind of magical access or success, as if it exists on a scale of cost and benefit. 

• Camouflaging as a psychological problem. The idea that our oppression comes from “camouflaging” itself, framed as a form of distress.

“Camouflage” is conveniently charged to us as something we do — a personal act of invisibility that some of us are supposedly “capable” of. A false status that maintains our lack of access and our oppression. And those who are seen as “not capable” are expected to try harder — or to achieve it through conversion therapies. A massive industry and system built on the promise of this false status, with long, exhausting conversion therapies that are traumatic and destructive. These practices can cause PTSD, while also making people — especially the children targeted — vulnerable to abuse and unable to assert their own will. This exposes children to numerous dangers and undermines their boundaries and self-respect.

Internalized ableism

As Autistic identity becomes destigmatized, more and more people who consider themselves “high-functioning” realize and accept that they are Autistic. However, they separate themselves from the pathologized stereotype, which they reject as part of their own identity.

They themselves may previously have described themselves as “highly sensitive,” and might never have accepted things otherwise if depathologization had not taken place. At the same time, they may not experience certain difficulties, or may not have certain experiences due to their condition—which is a determining factor—leading them to pathologize these as inherent to others, much like allistic people do.

In some cases, it may also be dissociation, and they may not have fully understood their own lived experience, or they may interpret it through other dominant frameworks—whether negative or romanticized views of Autistic experience. Of course, that is valid, as long as it is not projected onto others or onto an imagined, personal “Paradigm of Neurodiversity.”

Yet depathologization does not mean “levels,” with one level being pathological and another being a “personality type.” In reality, they have not accepted it. They have accepted something else about themselves. Then the impression of a “trend” is created, and all of this is recycled without resolution, offering itself up as a show and for exploitation.

This is one of the reasons I engage with the concept of “masking” and “high-masking,” to which some seem to attribute almost magical properties. As if we could present an entirely different self—one that conveys the image we choose and somehow overcomes every barrier and lack of accessibility in a magical way.

The prevailing perception is that camouflage provides some kind of magical access. This is the point that needs to be disconnected. Camouflage or masking is not linked to any kind of access or success, as if on a scale of gain and cost. The performance of allistic functioning is a prerequisite for anything, without any gain, to which we are forced. And while, by suppressing our natural functioning, it reduces or even entirely cancels out our performance and the development of our potential.

Does our oppression truly come from “camouflage” itself? Or is it the way we try to respond to the demands of social and systemic environments that obstruct our natural development and functioning? We call “masking” or “camouflage” every experience of oppression we live through our overall interaction with allistic environments and systems.

Μy most significant oppression did not come from within as “camouflage,” despite the immeasurable cost it had for me and for my environment. My most significant oppression remains the external conditions that block the development of my potential and my social existence—access, and every hostile social and systemic environment. These things do not magically change with “camouflage.” It is not a balance of cost and gain. We gain nothing.

When we focus on “masking,” we deal with how our mechanism tries to respond, rather than the condition causing the problem. We deal with how the individual copes with issues such as systemic inaccessibility, exclusion, and being forced into this performance. With the performance itself rather than the coercion into it.

For us, it can function as an “analogy” (mask), but for allistics, it refers to a different experience, which is not truly shared among us. They do not fully understand it. The masks they are asked to wear and the roles they are asked to perform in their lives concern different experiences and do not have the same consequences. They do not involve a real suppression of their potential or lack of access. That is why they only see a “psychological” dimension. They may feel discomfort to some extent, but they are not obstructed. Up to the point of discomfort, some—not even all—understand. Nothing more. We are talking about a different performance that they do not know and cannot comprehend based on their own experience. The analogies we offer them do not work.

We are not talking about “cost.” We are talking about something impossible for us. If they believe that some of us “are able,” that is the end of the matter for them, “we are able” = “we are able.” They do not care.

We adopt perceptions and interpretations that are “approximate,” but not accurate, and this is a point of divergence and misunderstanding with allistics, because one does not understand what the other is saying. In a rough way we subsume under “masking” an overall lived experience of oppression that exists in every interaction with the allistic environment. For them, however, it is a general category, and they are not even interested in the experience itself. What interests them is this meaning: “we hide our personality.” Full stop. In this way they think we gain access and success (the balance I mentioned above). 

They do not understand what all this means. They do not understand the suppression of our potential, our being ignored, our social and systemic exclusion, or that “camouflage” in reality has no effect on these things. They are not connected. It refers to a more immediate situation; it does not confer any magical property, and it is not sustainable over time.

It does not work, first of all because we do not control what our “behavior” conveys. Not even a professional actor can do that.

Finally, this classification, as a system of perception and communication, contains the fundamental primary misunderstanding of “autism” as an entity—here a behavioral one. “Autistic behavior” is separated out; it can be shaped or eliminated, while we can perform another “behavior.” And it is considered a social skill that we can learn.

In their perception above, this translates as: “we put on an act and everything is fine.”

“We hide our personality,” “we wear a mask,” in exchange for some magical benefit of access and success. That is how they understand it, according to their own experience, and they project such elements onto us, while it has nothing to do with the way we are oppressed and with the demands we are expected to meet. What do we expect them to understand when it is framed this way?

How can we expect something different when we ourselves equated the experience of oppression with ability and functionality? When we ourselves gave this experience magical properties of access? When we ourselves perceived it as a matter of personality or etiquette?

Perhaps we accepted it in order to recognize our experience of oppression.

In order to speak about what this oppression means and where it leads from our own perspective — an experience of oppression that can take infinite forms because it is not a specific act and concerns every interaction — to place it within our own framework. Not in order to accept the concept of “masking” or “camouflage” as functionality or magical access, nor as the hiding of negative or unfavorable elements of our personality for some benefit.

Doesn’t that sound a bit predatory and sneaky, by the way? Or opportunistic, as if we were social climbers trying to advance in an unethical way. We don’t do this, or it is not related to this experience—and such elements are projected onto us, morally-characterologically-psychologically-behaviorally, it is part of the misunderstanding.

There may also be a personality dimension, but it is only one dimension, and not the most important according to my experience. We have given this dimension more significance than it has. Or it is behavioralization, psychologization, and moralization of functioning.

The psychological dimension also exists, but even that is not shared; for us it reaches a core of existence that it does not reach for allistics.

Experiences we situate within the framework of “masking” or “camouflaging”

• The demand to perform allistic functioning as an image. 

• A traumatic response to external coercion; suppression of neurological responses and emotional expression; a freeze state within trauma theory. 

• More structured mechanisms that anticipate protection and social survival, with very serious consequences, affecting our very identity and personality. We find ourselves in a disoriented struggle to construct an identity and personality that distances us from ourselves. Dissociation. 

There is an experience that we place under “masking,” together with every experience of oppression that exists in our interaction with allistic environments and systems. It is a performance of allistic functioning as an image. Or a coercion into performing another kind of functioning that we cannot enact. This experience concerns autistic functioning; no allistic person can have it, and it leads to autistic burnout.

Even we ourselves sometimes say “everyone masks,” which is not the “masking” we mean. We perceive only superficially the part concerning “personality,” or treat it as if the issue were one of etiquette.

This is not playing a character, as an actor would. These are not characters. So what exactly is this neurotypical persona? And in terms of systemic access, what does it achieve—and how?

The perceptions that we ourselves often hold about “camouflage” reflect a view of “personality”, or the behavioralization and psychologization of functioning. This denial of difference is also reflected in the idea that “everyone masks”.

What we ourselves must also understand: they expect, or demand, this “theater” from us because for them it is not theater. It is simply how they function.

There is no comparison with the fact that an allistic person might pay a little more attention to what clothes they wear and to their expressions in a job interview. It is not the same thing. 

The lived experience of the suppression of our neurotype exists in every interaction; it does not depend on whether a situation is formal or informal or what demands it has, but on the fact that, first of all, the demands are not even known.

Personally, I don’t remember ever hiding. There was external coercion, which produced a kind of “camouflage” as a traumatic reaction (and not of “autistic traits”). In this way a series of reactions (neurological and physical) and emotions were suppressed (a freeze state in trauma theory), and there were more organized mechanisms that included copying patterns of behavior, trying to present an image of myself, trying to shape a “personality” according to the available tools and models for perceiving and interpreting my experience (which of course were insufficient, while the knowledge that I am Autistic was missing, and this misdirected me with very serious consequences for my life). I should also note dissociation, either immediate in certain situations or long-term, as a consequence of the above.

With “masking,” some of us may indeed recognize that experience as well, but its dimensions and the impact it has on our lives are reduced. 

Allistics see a separated “autistic behavior,” which can be eliminated or modified, and that is how they perceive “masking.”

We accepted the framework of “autistic traits.” But these are not “traits” that we hide; we can understand the convention we accepted and the fundamental misunderstanding it contains. It approaches experiences that we can recognize, but it does not truly correspond to our own experience.

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