masking Archives - Essy Knopf

Neurodivergents mask to survive systemic ableism—but at what cost?

Reading time: 6 minutes

Autistic/ADHD individuals learn early on that if they want to survive in a society shaped by systemic ableism, they have to mask their true selves.

But over time, masking damages our self-worth. And it may fuel internalized ableism. So why then do we persist in doing it?

While accommodations are sometimes made for people with disabilities/who are neurodivergent (ND), they are by far the exception to the rule.

In the case of autism and ADHD, accommodations can be even less likely, due to what clinicians call “disguised presentation”. That is, neurodivergence isn’t always that obvious, in some cases because the autistic/ADHDer is working very hard to keep their struggles hidden.

Neurotypicals (NTs) as a result may expect NDs to meet the same standards as people just like them, setting the bar for acceptance impossibly high.

When NTs expect ND folk to think and behave as they do, the moment the ND individual drops their mask—for example, by being overly direct or failing to read social cues—the NT will attribute that lapse to another cause, such as them being “selfish” or “rude”.

They may even respond by criticizing, judging, punishing, and excluding the ND.

Systemic ableism & microaggressions

The issue here is not merely that NTs are intolerant of neurodiversity and the differences it presents. It’s that NTs, in general, operate from baseline expectations that are ableist.

Most are oblivious to the extent to which this ableism informs their thinking, resulting in microaggressions: the “commonplace daily verbal, behavioral or environmental slights, whether intentional or unintentional, that communicate hostile, derogatory, or negative attitudes toward stigmatized or culturally marginalized groups” (see Microaggressions in Everyday Life).

Microaggressions can happen even within the families of ND folk. For instance, I remember my own parents calling me “antisocial” for my tendency to choose the company of books and computers over that of other human beings.

They also play out at school, with kids slapping all kinds of hurtful labels upon their ND peers.

I recall even teachers telling me that I lacked “common sense”, and that my handwriting was “poor” and “sloppy”. Turns out, all of these traits were part and parcel of my being ND.

But even having a diagnosis doesn’t necessarily guarantee understanding and compassion.

Shortly after I was told I was autistic, I had a friend suddenly touch me from behind. When I reacted with shock and explained my reasons, this friend responded by cussing out my “Asperger syndrome”. (Note: This was my diagnosis at the time. It is now considered to be an outdated term and no longer exists in the Diagnostic and Statistical Manual of Mental Disorders).

Rather than apologizing for having startled me, this friend did what so many NTs did and called out my autism as being the problem.

Miscommunications & Theory of Mind

These misunderstandings are compounded by issues related to a skill called “Theory of Mind”.

Theory of Mind (ToM) has been defined as: “the ability to recognize and understand thoughts, beliefs, desires and intentions of other people in order to make sense of their behaviour and predict what they are going to do next”.

Researchers have claimed many ND folks have impaired ToM. What I’ve noticed however is that our unusual thinking style and behavior can also general a kind of temporary ToM impairment among NTs.

That is, NTs tend to ascribe NT motives to everyone, but doing this to ND folk can lead to confusion and misunderstanding. Turns on, there’s a name for this: the double empathy problem.

To give an example: when I got into trouble as a child, I would usually be upfront about the truth, believing that my confession would be taken at face value.

But protesting my innocence or admitting to my naivety would rarely win me favors. In one case, an adult suggested I was “stupid” for expecting them to believe my story.

What happened here was that this individual couldn’t fathom my intentions, and thus concluded my being honest had to be an act of deception.

Another example of this misattribution occurred during a visit to my parents. My mother told me she was going to fetch a can of tomatoes to make pasta sauce. With her fingers, she indicated that the can would be about the size of a bucket.

Knowing my mother had a tendency to bulk-buy, I assumed she indeed meant the can would be the size she suggested. Because of my impaired ToM, I interpreted her gesture literally.

When I expressed my confusion over why she wanted to use such a big can, it didn’t occur to my parents that I was genuinely confused. Instead, they accused me of being a smart aleck.

We mask because authenticity is risky

As I’ve mentioned, this tendency of NTs to not adjust expectations when dealing with an ND individual can sometimes be the result of the disguised presentation.

Specifically, when NDs present themselves as NT. In some cases, this camouflaging is deliberate, with the ND trying to mask their struggles for fear of being judged, attacked, or marginalized.

Like NTs, autistics want above all to be accepted for their authentic selves. But when ND authenticity collides with ableist expectations, as in the situations I’ve described, disaster can result.

Due to the double empathy problem, it can be hard to understand NTs and anticipate how they might react to our actions. So we become master imitators and concealers.

We mask, knowing that by hiding our neurodiversity, we are shielding ourselves against a perplexing and often hostile world.

Sometimes these compensations can be positive and adaptive, such as wearing headphones whenever out in public to compensate for sound sensitivities.

Other times, they are maladaptive. For example: avoiding talking about one’s interests, for fear of misreading social cues and rambling on.

But masking is self-defeating

NDs will often tell themselves that they need to change in order to fit NT expectations. But this really is an expression of internalized ableism.

Furthermore, ignoring your needs and hiding your differences as an ND is almost always self-defeating.

Years ago I had a friend who would invite me to the movies. Personally, I find sitting in a movie theater to be sensory torture, with people constantly rustling bags and crunching on popcorn.

Rather than explaining this to my friend, I went along with her invitations, usually at great discomfort to myself.

Feeling shame over my sensory problems, I refused to tell her about the issue. Eventually, I started making excuses for not being able to join my friend, who came to believe I was intentionally avoiding her.

Difficulties with executive function are common among ND folk. Personally, in the past, as a result of my ADHD, I have struggled with self-organizing, managing my time, and staying on track.

One time, a manager unloaded on me over this, accusing me of being self-absorbed and irresponsible.

Rather than reacting defensively, I admitted my mistakes and asked this manager how I could improve certain executive function skills. She replied by telling me that my request was “beyond the scope of her role”.

It was one thing to turn professional feedback into a personal attack, but to then deny me support was quite another.

This is, unfortunately, a common experience for NDs. Often we’re told that we have done wrong, without being told how to course correct.

Systemic ableism creates internalized ableism

Until I was diagnosed as autistic and ADHD, I didn’t have a framework by which to explain or defend my difference. Having long been challenged and attacked over my ND traits, defenses have usually felt necessary.

Of course, even without having fully understood the whys and hows of my challenges, I could have still spoken up and tried to negotiate accommodations.

What stopped me, however, was the belief that I was somehow choosing to be difficult. Having internalized ableism, I had come to feel inferior and ashamed of my differences.

My self-esteem consequently became conditional upon the approval of others. This led to me adopting a workaholic lifestyle in a bid to prove my worth to myself, and to others.

Personal boundaries blurred, to the point that I feared I was always somehow responsible when something went wrong.

Such was my shame that even after my diagnosis, I shied from the company of other NDs.

I convinced myself that the people who frequented autism and ADHD support groups weren’t like me, that I was somehow more “high functioning”—a term I’ve since realized is ableist.

What I feared—but dared not acknowledge—was that to be in their company might make me “one of them”.

Ableism creates so much stigma around disability/neurodivergence, that despite everything I knew, I still believed my autism and ADHD to be a kind of flaw or personal shortcoming.

Wrap up

Systemic ableism oppresses NDs by demanding we abandon our identities and silence our needs.

We can start countering it by leaning into authenticity, the practice Brené Brown defines as “letting go of who we think we’re supposed to be and embracing who we are”.

One immediate way we can embrace our authentic ND selves is by seeking out fellow NDs around whom masking isn’t necessary.

The ND community exists to normalize individual experiences and to combat the stigma that can make being disabled/neurodivergent such an isolating experience.

ND readers, how does ableism show up in your life? Do you recognize any of the forms of internalized ableism I’ve described here? Drop a comment below.

Essy Knopf

Essy Knopf is a therapist who likes to explore what it means to be neurodivergent and queer. Subscribe to get all new posts sent directly to your inbox.

www.essyknopf.com

Autism/ADHD

Why childhood autism and ADHD often go overlooked

Essy Knopf Leave a comment

Reading time: 5 minutes

Childhood autism and ADHD aren’t always obvious…except perhaps for the neurodivergent (ND) child themselves, who comes to the realization early on that they’re different.

It usually begins with other kids calling out our behaviors, telling us that we’re weird, or implying we’re inferior.

People clearly found me strange, but in my view, I was just unique and misunderstood. These two words perfectly summarized what it was like being an undiagnosed autistic and ADHDer in an ableist world.

They also describe why I often felt driven to mask my ND traits, and perhaps why many of them went overlooked.

But suppose I hadn’t masked. Suppose I made no attempt to conceal my supposed weirdness. Would I have received a diagnosis and received the necessary support sooner than I actually did?

Possibly—but possibly not. The lack of general awareness and education about autism and ADHD meant my traits would have continued to have been misattributed to my personality or (apparent lack of) intelligence.

This also comes down to the fact that autism and ADHD manifest quite differently for each individual. It thus requires a discerning eye to identify its presence.

Here’s how autism and ADHD showed up in my childhood.

Stimming: a common sign of childhood autism and ADHD

For years after receiving my autism (and later ADHD) diagnosis, I convinced myself that I had never stimmed. It was only upon hearing the accounts of other autistic people that in fact I did.

When I was living in the tropics, my favorite thing to do on a hot day was to chew on ice. Sure, it was refreshing, but the crunchiness of it was also deeply satisfying.

Another thing I loved to do was to play with chewing gum. Countless hours were spent blowing bubbles or pulling long strings of the stuff out of my mouth.

During long car rides, I would beatbox—it was a practice I never seemed to grow tired of.

When I was 12, I also went through a period of sucking obsessively on a certain toy. (By “toy”, I’m referring here to a balloon stuffed with flour, with a pair of googly eyes and a cap of yarn hair.)

It was a kind of sensory ball, and it lasted all of a few weeks before suddenly exploding and spraying flour all over me. Imagine having to explain this development to my parents!

Another big stimming activity for me was delivering a series of DoggoLingo-style monologues to animals, such as the family dog, in a made-up accent.

For days, weeks, months, and even years afterward, I’ve felt the urge to recite DoggoLingo phrases of affection to myself, at random, for no clear reason, over and over again.

This behavior I previously thought was echolalia, though I’ve since learned the correct term for this is palilalia: the delayed repetition of words or phrases.

childhood autism Essy Knopf — As a child, I was fanatical about animals.

Obsessive interests

My childhood autism/ADHD was perhaps most evident in my obsession with insects and spiders. Collecting factoids about each species proved a source of great delight.

In my teen years, my area of interest shifted to fiction writing. The fantasy worlds I created provided an escape from my confusing and often overwhelming reality.

Where previously I collected bug-related factoids, I started collecting new words, memorizing them straight out of the thesaurus.

There was a certain pleasure to be found in this mastery of meaning. To me, acquiring words represented the acquisition of some kind of secret, important knowledge.

Many of these words had a delicious quality to them. Consider for instance “lignite”. No idea what it means, but pronouncing it aloud just feels satisfying.

More than a decade later, riffling through a box of keepsakes, I would find ratty little lists of words I’d picked out from books, preserved since my teenagehood.

If you asked me to explain why I was keeping them, I’d be at a loss for…well, words. Even now, the very idea of throwing them away evokes pain.

The obsessive collecting didn’t stop there. At one point I received a pocket organizer with a digital address book, which I felt compelled to fill with phone numbers.

Despite the unusualness of my request, many of the people I asked at school obliged me by providing their own. I even worked up enough courage to ask my math teacher—of all people—for her details.

Suffice it to say, my teacher was not all too impressed, and I became the laughingstock of the class.

Social, environmental, and animal rights activism

An interest in environmental and social causes was one trait that’s typical of childhood autism.

I remember being age six and penning a handwritten letter to the Australian prime minister asking him to increase foreign aid to famine-stricken Sudan.

In fifth grade, I used my valuable show-and-tell time to lecture my peers about Captain Planet and climate change. While almost everyone rolled their eyes at me, I of course now have the satisfaction of knowing I was right all along!

My interest in animals also led to me adopting vegetarianism, a phase that lasted all of one year….before my mother tricked me into believing there was no meat in lunch meat.

Fixing things and the problem-solving mindset

When any of my toys broke or stopped working, I worked obsessively to try and fix them.

The most memorable example of this was a special doll that could pee when “fed” milk. At some point, the doll stopped peeing. Concluding that there must be some kind of internal blockage, my six-year-old self decided to clear this blockage using a reed.

Granted, this was not exactly ideal behavior for a would-be future parent, and yet this ability to hyper-fixate—a quality that appears in both ADHDers and autistics—would later prove quite advantageous, especially when it came to problem-solving.

The same probably couldn’t have been said of my tendency to always try and set things right. In second grade, my homeroom teacher one day warned my peers that someone had been stealing food and money from backpacks.

Our school didn’t have lockers. Students instead had to leave their backpacks on racks. Given most of my peers were leaving their bags unzipped, the temptation to would-be thieves naturally was great,

I thought long and hard about what I could do to fix this problem, then spent the following lunch break methodically zipping up every bag I could get my hands on.

I was a self-appointed Good Samaritan, but that wasn’t how two of my classmates saw it. They reported my apparently suspect behavior to the teacher, bringing a sudden end to my brief career as a school crimefighter.

Sensory sensitivities

As a child, I was accused of being a “picky eater”. What the adults around me didn’t understand was that I found certain foods extremely repulsive, usually because of their appearance, texture, taste, or a combination of all three.

One of these foods was yogurt. Another was a traditional Iranian stew my mother would make which contained red kidney beans and lamb shoulder called ghormeh sabzi.

Ghormeh sabzi was one of the few foods I devotedly ate, due to the delicious umami flavors, and yet I was extremely averse to doing so until the beans and lamb had first been removed.

Certain sensations could also make me very uncomfortable. Feeling my toenails against the surface of a pilling bedsheet was one of them. To avoid the possibility of contact, I became a stomach sleeper.

As for sleep, that was an activity that felt next to impossible unless I was under a sheet or blanket. Another requisite was that I needed to have a fan blowing on me—no matter the temperature.

Tags inside my clothes bugged me, and sometimes even my own underwear felt too tight.

One time, a teacher caught me trying to adjust my briefs through my pants and assumed I was having some kind of bladder problem.

Wrap up

As perfectly natural as these preferences and behaviors felt to me, the downside was often obvious and immediate: alienation.

In the eyes of my parents, peers, and teachers, I was either too finicky, too stubborn, too sensitive, too clueless, or too weird. And without a diagnosis, what cause did I have to disbelieve them?

But to view our authentic ND selves in such a light can leave a legacy of shame.

It’s only now, years later, that I realize the problem was less my difference than the ableist system that defined that difference as a problem.

So to all my fellow autistics and ADHDers experiencing self-doubt: don’t shy from authenticity. Embrace it as your fundamental right.

What were your ND traits as a child, and how did others react to them? Let me know in the comments.

Essy Knopf

Essy Knopf is a therapist who likes to explore what it means to be neurodivergent and queer. Subscribe to get all new posts sent directly to your inbox.

www.essyknopf.com

Identity LGBTQI+ Wellbeing

Is there a place for the graysexual identity within the LGBTQ+ community?

Essy Knopf3 Comments

Reading time: 4 minutes

Apparently being LGBTQ+ also means being hypersexual. At least, that’s what many of us have been led to believe.

But human sexuality expresses itself very differently from person to person.

Today, I want to talk about two forms of this—gray asexuality/graysexuality and demisexuality—and the struggle many of us experience fitting in.

LGBTQ+ hypersexuality

At 18, when I was just starting to explore my LGBTQ+ identity, I found myself drawn to nightclubs. This seemed like the best venue in which to meet other gay men and hopefully make friends.

Each club usually had a cover charge, but as a poor student, I often found myself balking. One time a bouncer laughed at my reaction.

“Don’t worry,” he said. “You’ll get laid.”

I remember feeling absolutely mortified. How could he have so mistaken my intentions?
Yet it was, as it turned out, a fairly normal assumption to make.

Inside these clubs, I frequently saw people sizing each other up across the dancefloor.

And when I tried to make small talk with strangers, I’d catch them looking over my shoulder at the latest person to walk through the door. Many people I met appeared to be solely looking for casual sex.

Frankly, I was so bored by this idea, that I’d often end up sitting in a corner and browsing the free LGBTQ+ publications.

The articles and advertisements I saw within seemed, again, to speak to this hypersexual facet of the LGBTQ+ identity—a facet that is often quite narrow in its definitions.

Being a graysexual in the LGBTQ+ ‘monoculture’

The LGBTQ+ community is, at least in theory, an inclusive one. In practice, however, it can lean towards being a monoculture.

The term “monoculture” refers to cultivating one kind of crop at a time. This is compared to polyculture, where one cultivates multiple crops at the same time.

The LGBTQ+ monoculture promotes the idea that all gay men should be hypersexual and openly discuss their sexual preferences with one another.

Sexuality for me on the other hand has always been personal and private. I’ve rarely felt any need to disclose my preferences with anyone, friends included, nor to actively pursue sex.

When I met other gay men online or in person, I’d explain that I wanted to be their friend and get to know them. For me, the familiarity and safety provided by a friendship were necessary before progressing the relationship.

Intellectual connection and interpersonal compatibility were also important, and I couldn’t be sure of either on short acquaintance.

But many people received my request to get to know them as a rejection. I was, in their view, friend-zoning them.

It seemed I had failed to grasp a common but unspoken belief: that when two gay men come into contact, sex must result.

What are graysexuality and demisexuality?

Given casual sex in the LGBTQ+ world is often treated as a kind of handshake, this expectation makes sense.

This is not to say that LGBTQ+ culture is monolithic. It arose after all as a response to the constraints of heterosexuality.

But this tendency to lean towards a single expression of sexuality can be marginalizing and oppressive to those who don’t and can’t follow it.

It’s only in the past few years, after coming to identify with the gray asexual and demisexual labels, that I’ve understood why hypersexuality never sat right with me.

What does it mean to be gray asexual, also known as graysexual, gray-a, and gray-ace?

Graysexuals according to the Demisexual Resource Center:

feel sexual attraction infrequently, of low intensity, to few people, or in specific circumstances
feel sexual attraction, but have no desire to act on it; have confusing or ambiguous feelings of sexual attraction
feel that sexual attraction is not a meaningful concept to them personally

Graysexuality clearly has many possible definitions and is experienced differently by each individual.

Demisexuality on the other hand involves “feeling sexual attraction only after forming an emotional bond”. Some consider demisexuality to be a subset of gray asexual.

In my case, I relate to both labels. I experience sexual attraction, but in limited circumstances, and at a low intensity.

These feelings are often ambiguous, aren’t that important to me, and I usually have little desire to act on them.

And if I do, full enjoyment is rarely possible unless I have first formed an emotional bond.

Quite a lot of fine print. And not exactly something one drops in a casual conversation.

When being graysexual conflicts with allosexuality

Allosexuality—that is, feeling sexual attraction—is often treated as the norm, so graysexuals and demisexuals like myself may thus find themselves pushed into the margins.

For example, we may often feel like our lack of sexual interest and/or drive is a problem and that something is wrong with us.

If we don’t indulge in hypersexuality, we may feel like we’re somehow failing the LGBTQ+ acid test.

Another fact to consider is that in LGBTQ+ culture, being sexually desirable is, unfortunately, often tied to self-worth. Having a lack of sexual interest in others may thus be interpreted as rejection.

Not wanting to engage in sexual activities may be perfectly comfortable for you. But failing to meet allosexuals’ expectations can create discomfort, if not frustration, for some.

Many a time, I’ve found myself in situations where another person clearly wanted a sexual outcome. When that outcome didn’t happen, some individuals would only pressure me further.

Sometimes I froze, and sometimes I gave in. When I did manage to find my voice and refuse, hurt and anger could result.

Wrap up

It’s hard not to feel somehow wrong or at fault in these situations. You get to thinking that maybe it’s on you to be more upfront about your preferences.

But even when we are upfront, there’s always the possibility it might be explained away.

I’ve had more than a few people tell me that I “just hadn’t had the right sexual experience or partner” yet. Ironic, given that’s an argument that’s been used against LGBTQ+ people for having an interest in members of the same sex!

It isn’t fair that allosexuality is treated as a default and alternate sexual expressions as abnormal. We gray-aces and demisexuals feel blamed or shamed for failing to meet some kind of sexual mandate.

This is, after all, a fundamental part of who we are. And our diverse identities are just one variation of many that exist within the LGBTQ+ community.

So enough about me, I want to know: do you identify as graysexual or demisexual?

If so, what’s it been like for you? Let me know in the comments.

Essy Knopf

Essy Knopf is a therapist who likes to explore what it means to be neurodivergent and queer. Subscribe to get all new posts sent directly to your inbox.