So what is autism, exactly?

Essy Knopf autism spectrum disorder
Reading time: 8 minutes

What is autism spectrum disorder? To fully understand this phenomenon, we have to employ the medical model.

Big disclaimer: the medical model is far from perfect.

According to this model, there is something inherently wrong with autistics. Historically, this rationale has also been used to marginalize and oppress us.

For most people, the social model is preferable, as it argues that the issue lies not with neurodiversity, but with society’s failure to accommodate it

The social model aims to destigmatize autism, whereas the goal of the medical model is to diagnose and treat.

Pathologizing aside, getting an ASD diagnosis can open the door to disability-related legal protections, supports, and services. This is one example of how the medical model can be of use to those with autism, and their loved ones.

So, what is autism spectrum disorder?

According to the Diagnostic and Statistical Manual of Mental Disorders 5 (DSM-5), autism spectrum disorder (ASD) is a neurological developmental disability.

Autism is characterized by ongoing deficits in social communication and social interactions in a range of contexts. Other criteria for autism include “restricted, repetitive patterns of behavior, interests, or activities”. 1 2

Autism symptoms manifest in the early development period and typically cause clinically significant impairment in key areas of functioning. 

To receive a diagnosis of ASD, these symptoms must not be better explained by the presence of intellectual disability or global developmental delay.

A diagnosis of ASD is typically accompanied by a severity measurement of “Level 1”, “2”, or “3”. Level 1 means the individual requires very support, Level 2 substantial support, and Level 3 very substantial support.

(Remember how I mentioned the medical model is pathologizing? An example of this is the DSM-5 terminology I just used, such as “disability”, “deficits”, “symptoms”, “impairments”, and “severity”.)

Autism often appears alongside other conditions, such as epilepsy, attention-deficit/hyperactivity disorder, sleep problems, gastrointestinal symptoms, anxiety, and depression.

Who gets diagnosed with autism spectrum disorder?

Males are diagnosed with autism at three times the rate of females, but this doesn’t necessarily mean autism isn’t as common among females.3

One study found that autistic females as a population are better than males at hiding their autistic traits. This results in fewer diagnoses, later diagnoses in life, and misdiagnoses. 

It’s also been argued that autistic females may present autism in a way different from their male counterparts.4 And due to many measurements being male-centric, females may be overlooked by current diagnostic measurements.5

Additionally, autistics from racial minority groups are typically less likely to receive a diagnosis of ASD.6 Instead, they are more likely to receive other diagnoses such as ADHD and conduct and adjustment disorders.7

Many conclude that reflects medical disadvantages experienced by minority groups as a result of structural inequality.8 But it’s important to note that autism traits can also go overlooked or can be misinterpreted, depending on the sociocultural context. 9

Why are some people autistic and others not? 

There are no clear answers here, however, some studies point to a range of environmental risk factors and protective factors. 

These include advanced parental age, low birth weight,10 11 fetal exposure to the epilepsy medication valproate,12 intake of certain vitamins,13 maternal autoimmune disorders, environmental toxins, and breastfeeding.14

Links have been made between unique gut microbiota compositions and the development of autism. Other studies have indicated strong genetic influences, concluding that autism is highly inheritable.15 16 17

How does one get an autism spectrum disorder diagnosis?

To get an autism spectrum disorder diagnosis, you need to be screened by a trained professional. 

For children, there’s a range of tools. For example, the Modified Checklist for Autism in Toddlers Revised, the Ages and Stages Questionnaire, and the Screening Tool for Autism in Toddlers and Young Children.18 19 20

For older adolescents and adults, the gold standard for autism diagnoses is the Autism Diagnostic Observation Schedule (ADOS-2) module 4.21 Professionals typically use this tool alongside direct observations and taking patient history.

The Autism Diagnostic Interview-Revised (ADI-R) is another gold standard autism diagnostic tool that is suitable for both children and adults.22

Again, I want to point out here that these diagnostic tools may be gender-biased and thus more likely to detect male autistics than female autistics.

When seeking out a diagnosis, it is worth checking to see that the person doing the assessment is using the most current, research-backed screening measures.

If seeing a professional is not an option, adults can also use self-reporting tools such as the Social Responsiveness Scale, Second Edition: Adult form (SRS-2).23

Additional tools are available for assessing how autism is impacting one’s activities of daily living and quality of life.

How is autism spectrum disorder “treated”?

There is no biomedical treatment for autism spectrum disorder, however, psychotropic medications are available and often prescribed for those who are experiencing symptoms such as anxiety or depression.24 25 26

For autism specifically, there is a range of therapies, the most commonly used being Applied Behavior Analysis (ABA).27

ABA is designed to help autistic children with the development of social, communication, and expressive language skills.

The dominant strain of ABA has been heavily criticized by autism advocates for violating individual autonomy and even doing direct harm to clients.28

Critics have also pointed out that there are conflicts of interest among researchers who publish scientific literature in support of ABA as an autism intervention.29

Clearly, there is room for improvement when it comes to current ABA intervention. However, ABA is one of the few treatments that remain widely accessible. 

In many US states, health insurance providers are required to cover ABA-related expenses under the Patient Protection and Affordable Care Act.

One alternative to mainstream ABA is Naturalistic Developmental Behavioral Interventions (NDBI). NDBI is more child-directed and provides intrinsic rewards for learning and participating.30

Other available interventions support the development of core skills among autistic children, such as social communication.31

Additionally, programs exist for young adults, such as the Program for the Education and Enrichment of Relational Skills (PEERS®).32

For autistic young people and adults, psychotherapies such as Cognitive Behavioral Therapy are recommended for those who experience comorbidities such as anxiety and depression.33 34

These are available in both individual and group formats.35

Wrap up

So there you have it, my brief introduction to autism spectrum disorder.

Again, I want to stress that much of the content I shared is presented using the medical model. 

But remember: viewing autism exclusively through this lens is not only limiting—it also fails to give consideration to some of the strengths of being neurodiverse.

Check this blog post to learn a little more about some of the benefits of being autistic.

The secret shame of being autistic in a world built for neurotypicals

Essy Knopf autism
Reading time: 7 minutes

As an undiagnosed autistic child, my favorite part of primary school was the weekly show-and-tell sessions.

It wasn’t so much the storytelling aspect of this activity that appealed to me, as it was the occasional chance to present.

But whatever the focus of my presentation might happen to be—dinosaurs, guinea pigs, insects—there was always a good chance it wasn’t shared by my peers.

This was a detail nevertheless lost on me. For all that truly mattered was the presence of a captive audience, bound by convention to listen.

In other settings, explaining to my classmates the, say, minutiae of insect classification, usually earned me a look of bemusement.

To hear someone use the term “bug” to describe a spider for example almost always led to a correction. 

Spiders, I would note, were arachnids. What set them apart from insects was that their body had two rather than three segments. They also had eight legs instead of six.

No one else lived for such factoids, and this was a source of perplexity. Worse still, my sharing of them was not meant to be received as criticism…and yet often was. 

And perish the thought that it might be interpreted as intellectual showboating. Yet the pearls of knowledge I so casually strew before my peers were received with indifference, or worse.

Essy Knopf Asperger syndrome
My childhood had many moments of joy. But these memories are clouded by the prevailing sense was I was out of sync with the rest of humanity.

How autistic folks’ attempts to connect can backfire

Friendless as I was, I would tend the fires of my passion in quiet solitude, sometimes for weeks, if not months.

The merest of kindnesses—a “hello”, a smile, a polite question—had the effect of kerosene, sending flames bursting outwards.

It seemed irrefutable that others should prize the tender morsels of information I dispensed as much as I did. It didn’t even enter into my mind that the case might be quite the opposite.

Words would rush forward in great exuberant billows, and in my naivete, I would fail to read the blank looks I was inevitably met with.

These attempts to connect ironically had the inverse effect of creating disconnection

And so the distance between me and other kids would only grow, until we stood upon different hilltops, regarding one another warily through binoculars of mutual unease.

A ‘disastrous’ deed

While my show-and-tell sessions rarely drew more than polite applause, the desire to infect others with my passion remained.

Maybe what was required, I thought, was something of more obvious value. I set my eyes on one of my mother’s rings: a silver band set with a single, brilliant sapphire. 

I asked to borrow it, explaining that my purpose was to use it as a show-and-tell prop. Yes, I promised, I would bring it home that afternoon, and reluctantly, my mother agreed to lend the ring.

Arriving at school early the next day, I sat on the steps of my demountable classroom, toying with the ring and the idea of the warm reception that must surely await.

A classmate appeared, depositing her backpack on the rack that passed for school lockers. Accompanying her was a woman I assumed must be her mother. 

Joanna was transferring to another school, and today was to be her last day. I considered this tidbit. Joanna wasn’t exactly a friend, but wouldn’t it be nice if I offered her the ring? 

After all, this was a special occasion. And wasn’t it considered normal to present gifts on special occasions?

Indecision wracked my mind. I had given my word that I would return it to my mother. 

Yet if there was anything I understood about human relationships, it was that they were transactional. If I wanted people to like me, I would need to take the initiative.

My mind made, I stood up.

“Hey, Joanna.” She turned. “This is for you.” Joanna considered the ring, shyly teasing a blonde curl. Not understanding. “It’s a going-away gift,” I added.

“Well, that’s very nice you.” This response came not from Joanna, but her mother. A smirk eased onto her face. It was an expression I could not read, and which nevertheless made me uneasy.

“Joanna, what you say?” Joanna’s blank expression split into a smile.

“Thank you,” she said. And took the ring from me.

Essy Knopf Asperger syndrome
I was never really “people-oriented”. Yet over time, my negative experiences led me to actively avoiding others’ company.

Stupidity, not disability

Less than an hour later, however, my doubt had deepened, becoming a dead weight upon my conscience. 

Having had the time to consider my impulsive act, I realized that there would inevitably be consequences. 

But when I returned home, hangdog, there was no blame and no bluster. Instead, my faltering explanation was met with silence. 

It was as if my mother had all along suspected that something like this might happen. 

The absence of a reaction stung. It felt like an affirmation of an unspoken truth: that I was stupid. 

I promised my mother that I would try to get the ring back. But when I returned to school the next day, Joanna was gone, and my attempts to reach her through one of her friends came to nothing.

The wounds of systemic ableism

This memory remains enshrined not as an act of shameless exploitation by an adult who had undoubtedly known better, but as one of the most disastrous acts of my youth.

When I reminded my mother of the incident more than two decades later, she couldn’t recall ever having the ring, let alone my blunder.

Yet how could she not? Was this possession not as precious as I had long imagined it to be?

To me, this incident reflected a longstanding habit of socially inappropriate behavior, which I would later learn was all too common among those with autism.

Yet for something so poignant as this to have had no lingering significance to the one person it should have, surprised me.

Just like the casual dismissals, the lack of replies to my comments, the way so many cut in line ahead of me on the handball court, I had notarized this event as just one more proof of my inferiority.

And gradually, I had retreated behind the walls of a crumbling bastion of false pride, manned by sentinels of shame and self-criticism.

It was a lonely existence, but it was safe, in that it was largely unpeopled by those who seemed to so scorn me on the basis of who I was.

In my mid-20s, I received a diagnosis of Asperger syndrome, and this would crystallize for me that it was not so much who, as what.

At last, the faultline that ran through the foundations of my social life had a source.

At last, I knew that I was not broken, but a survivor of a society grounded in systemic ableism.

Essy Knopf Asperger syndrome

The catch-22 of being autistic

Yet until the moment of my diagnosis, I had had no choice but to stumble my way through the intricate dance of social connection.

This dance was a necessary precursor to the embrace of friendship. And yet to me, it seemed frivolous and a waste of effort and time.

Others did not share this view. Nor did they see the virtues of my info-dumping, my dispensing with social niceties, and my papercut directness.

Without their friendship, there was often no socially acceptable basis for the sharing of interests I longed for.

But I persevere, storming the dancefloor, shirtfronting potential partners, and treading all over on their toes.

My prospects of friendship thus damaged, I found myself deprived of the emotional support many individuals who are neurodiverse need in order to navigate a world built for neurotypicals. 

I also missed out on the social coaching that might have otherwise helped prevent my missteps.

Without the label of disability, my only frame of reference was the one bestowed on me: a belief that I was a person whose lack was the result of choice, or some personal flaw.

The allure of the life interior

While I can see now that autism was the source of my social cluelessness, memories of my school years continue to pain me today. 

One of the earliest and most enduring was being invited to join a game of prisoner’s base in kindergarten. 

“Tagged” by a member of the opposing team, I was taken prisoner and deposited in an imaginary cell under the jungle gym. Here I was expected to remain, awaiting rescue.

In my imagination, this did not simply represent a return to play, but rather an acknowledgment that I was worthy. Evidence that someone—anyone—cared about me.

But that rescue never came to pass. I was left forgotten until the bell for class rang.

Hurt and confused, I took a vow of social abstinence, using lunch break to play make-believe on my own or to read.

This solidified my status as an outsider, denying me the warmth of others’ company, of which my own fire was but a weak imitation. Still, what else was there?

When fiction-based escapism was not jostling for my attention, I tended to various projects of my own devising. 

The first involved catching and cataloging the myriad insects living in my backyard. This was followed by a compulsive desire to write sprawling portal fantasy novels. 

During another period, I set myself to covering a length of green marble A1 card stock with designs for an adventure board game of my own devising. 

The game was meant to be played with at least four friends; that I was entirely lacking this requisite was a consideration I chose not to dwell on. 

It was, for the most part, a life interior. But eventually, it became a prison of self-narration. 

“You are worthless. You are unloveable,” went the familiar refrain, a refrain seemingly substantiated by my continued isolation.

Essy Knopf Asperger syndrome
Social awkwardness and the feeling of being apart only grew throughout my teen years.

Freedom by diagnosis

My life is sharply divided between two very distinct periods: before diagnosis with autism, and after.

Before diagnosis resembled a black-and-white etching. But in the months and years that followed, this etching became saturated with color, slowly assuming the richness and depth of an oil painting. 

Liberated of one label—being a “bad” person—and awarded another—”someone with a disability”—I began to consider myself in a new light. 

The critical dictator in my head was dethroned, his antique reign gave way to a democracy of thought grounded in self-compassion.

I came to understand that the shame I carried was undeserved. That I was not at fault for the unusual architecture of my mind. That I was a person of value. That I needn’t live a life sentence of “if only”. 

The skills I lacked could be learned. As for the friendships that had failed to take seed—these could be nourished into new life. 

With enough effort and persistence, the connection I had once craved when standing before my class during show-and-tell could be mine.

Why signs of childhood autism are often overlooked

childhood autism Essy Knopf
Reading time: 5 minutes

Childhood autism isn’t always obvious…except perhaps for the autistic 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 weird, but in my view, I was just unique and misunderstood. These two words perfectly summarized what it was like being an undiagnosed autistic in an ableist world.

They also describe why I often felt driven to mask my autistic 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 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 manifests quite differently for each individual. It thus requires a discerning eye to identify its presence.

Here’s how autism showed up in my childhood.

Stimming: a common sign of childhood autism

For years after receiving my Asperger syndrome/autism diagnosis, I convinced myself that I had never stimmed. It was only upon hearing the accounts of other autistic people that, actually, I did.

When I was living in the tropics, and 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 experienced 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 was perhaps most evident with my animal obsession, particularly 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 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 to say, my teacher was not all too impressed, and I became the laughingstock of the class.

Social, environment, and animal rights activism

My keen interest in the environment and social causes was another trait I believe was indicative of my childhood autism.

At age six, I penned a handwritten letter to the Australian prime minister, asking him to increase foreign aid to famine-stricken Sudan.

In year five of school, 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.

childhood autism Essy Knopf
Taken during one of my childhood bug-catching expeditions. There was always a part of me that felt deeply embarrassed about my passion and suspected that others were laughing at me behind my back.

Fixing things

When any of my toys broke or stopped working, I usually took it upon myself 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. Not exactly ideal parent behavior.

In year two of school, my homeroom teacher warned us that someone had been stealing food and money from my peers’ backpacks.

As we had racks instead of lockers, the temptation to would-be thieves was great, given most of my peers were leaving their bags unzipped. 

Appointing myself the role of Good Samaritan, I spent the following lunch break methodically zipping up every bag I could get my hands on.

Two classmates caught me in the act and reported my suspect behavior to the teacher. Suffice to say, my brief career as a crimefighter ended shortly thereafter in ignominy.

Sensory sensitivities

As a child, I found certain foods extremely repulsive. Usually, it was either because of their appearance, texture, taste, or a combination of the 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, 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 so loathsome to me I was forced to become 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. 

childhood autism Essy Knopf
Without a diagnosis, my autistic traits were often misattributed to other causes.

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 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 burdened with self-doubt: don’t shy from authenticity. Embrace it as your fundamental right.

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

Gatekeeping actually makes the autism community less of a safe place

autism community gatekeeping Essy Knopf
Reading time: 5 minutes

Living within an ableist society, autistic folk often experienced marginalization. But to experience it within the autism community is not something most of us would expect.

Consider the many young autistic individuals who go in search of others like themselves on social media.

Some reach out in the hopes of finding community, only to have a total stranger blast them for using terminology some have deemed inappropriate.

Any sense of belonging and acceptance this young person might have found is suddenly withdrawn the moment they express themselves.

This was my experience, and one I believe is shared by many. The policing of the autistic identity is a very real phenomenon, and one I think requires further discussion.

The people responsible for this behavior—I’m going to call them “gatekeepers”—have a tendency to treat our community as monolithic.

According to these gatekeepers, only their worldview is endorsed, while all others are incorrect and subject to harsh criticism.

Knowing that one could be punished by such folk for speaking “out of turn” creates a chilling effect in online discussions. And so it’s the voices of the gatekeepers that usually end up being the loudest—to the exclusion of all others.

Some disclaimers

I want to make it clear that many advocates within the autism community do important work. And I’d like to believe that most of them are motivated by genuine compassion. 

Yet the gatekeeping approach to advocacy raises a number of concerns, some of which I’ll touch upon shortly.

Full disclosure: I am speaking today as someone who is autistic. Any opinions I share here are entirely my own.

I acknowledge that my ability to speak out in the first place is a privilege. Not everyone in our community enjoys this privilege, for reasons I’ll go into later.

I also want to acknowledge that autistic folk as a group have been marginalized and oppressed throughout history.

Widespread ableism means that the status quo largely exists to serve the interests of neurotypicals. This is why challenging the status quo and fighting for autistic empowerment are so important. 

Gatekeeping in the autism community feeds toxic shame

That said, I believe gatekeepers often challenge for the sake of challenging in and of itself. What doesn’t help is that the manner in which such challenges are performed is usually dogmatic, if not militant

Gatekeepers thus appoint themselves the authority, defining what is “good” and “bad”, “right” and “wrong” for everyone else.

Typically, they take a very strong stand on hot-button topics, like the use of person-first language, the term “Asperger”, or the pathologizing of autism as a disorder.

Yes, these are important topics worthy of discussion. And yet discussion can’t happen so long as one party feels they have a monopoly on the truth, as gatekeepers so often do.

Believing in their own righteousness, many gatekeepers will label those who disagree with them as ignorant, ableist, and oppressive.

Demonizing people in this fashion creates shame. In the words of Brené Brown:

Shame is the fear of disconnection—it’s the fear that something we’ve done or failed to do, an ideal that we’ve not lived up to, or a goal that we’ve not accomplished makes us unworthy of connection. I’m not worthy or good enough for love, belonging, or connection.

Nobody likes to feel this way. Everyone—and I mean everyone—wants to feel worthy of love and belonging. 

Worse still, if the intention of gatekeepers is to create shape, when they shame others, they undermine their capacity for change. As Brown goes on to explain:

“Shame corrodes the very part of us that believes we can change and do better… In fact, shame is much more likely to be the cause of destructive and hurtful behaviors than it is to be the solution.”

There is a history of neurotypicals weaponizing shame against autistic folk. So when autistic folk neurotypicals and other autistics, it is—to say the very least—problematic.

Gatekeeping drowns out other voices

Gatekeepers claim there is a consensus within the autism community, one again that usually aligns with their own personal beliefs. 

But in fact, no such consensus exists. The community comprises diverse individuals who identify and express themselves in a variety of ways.

No one has the right to speak for every member, just as no one has the right to silence those who don’t agree with their points of view.

One example of this is when gatekeepers whitewash autism, painting it exclusively as a positive while failing to acknowledge that it may be experienced by others with mixed feelings, or as a negative.

Similarly, many gatekeepers frame autism as a mere social challenge caused by systemic ableism. This social model of autism has been adopted as an alternative to the medical model, which has sometimes been used to oppress autistic folk.

But romanticizing autism in this fashion dismisses the reality of those individuals who experience autism as a debilitating disability. 

Likewise, gatekeepers who insist that autism is an intrinsic part of our identity fail to admit that this isn’t the case for everyone.

By dominating discussions about autism, gatekeepers fail to hold a space for other community members, and even compromise their right to self-expression.

Gatekeeping ignores privilege

What a lot of gatekeepers don’t realize is the ability to advocate is a privilege not all autistic folk get to enjoy.

For example, many individuals on the spectrum experience some form of intellectual disability and/or are nonspeaking. 

These individuals may not have the opportunity to express how they feel. And so, their wishes go unheard, and their needs unmet. 

If the inclusion of all autistic individuals is our priority as a community, why then are so many of us assuming the right to speak for others? 

Again, by virtue of being the loudest, gatekeepers get to decide what issues receive the most attention.

Their advantages allow them to privilege their own voices, rather than elevating those of the underprivileged.

Gatekeeping undermines coalition-building

The final issue I want to address is the “us vs. them” attitude gatekeepers take towards the medical community and parents of autistic folk.

The history of autism at the hands of the establishment is a dark one indeed. One only needs to look at how horrifically neurodiverse individuals were treated during the Nazi regime to understand why suspicion of medical authorities endures even today.

Still, the sweeping narrative by gatekeepers claiming all researchers want to “cure” autism—an action compared to eugenics—is a smear campaign.

Consider those autistic individuals living in full-time care who are prone to frequent seizures, meltdowns, self-injury, and violence. They undoubtedly experience autism in a way that differs vastly from that of privileged gatekeepers.

Many researchers are working to enhance quality of life for such individuals, and yet gatekeepers continue to accuse these professionals of endorsing ableism.

Similarly, when desperate parents of autistic folk reach out to the community seeking understanding, insight, and support, often they are shut down and declared the enemy.

Instead of building coalitions with community allies, gatekeepers sideline them.

Gatekeeping is not social justice

Gatekeepers believe themselves to be part of a social justice movement. But there can be no justice so long as one party assumes the moral high ground, dominates the discourse, and bullies both allies and autistics alike.

I gave up my previous career to enter social work with the hope of serving my community. 

Yet I’m troubled by the knowledge that should I ever fail to measure up to the demands made by autism gatekeepers, I’ll be treated to judgment and shaming. 

This leads me to wonder, are these individuals truly invested in serving the autism community? Or are they just perpetuating the trauma that was done to them?

Yes, words such as those gatekeepers often take issue with can be oppressive. But when they themselves use words in oppressive ways, there is no mutual understanding, no dialogue, no positive change.

There is only a Twitter argument. And what, really, have we then accomplished?

Wrap up

Have you experienced some form of autism gatekeeping? Or do you completely disagree with my argument? Let me know in the comments.

Build your self-esteem as an autistic with strengths awareness

self-esteem confidence strengths autism Essy Knopf
Reading time: 5 minutes

Many of the messages we get as autistics living in an ableist society remind us that we’re different. And this difference, more often than not, is treated as a negative—at the cost of our self-esteem.

When confronted with the unique traits and behavior of autistic folk, many neurotypicals (NTs) typically respond with discomfort, annoyance, hostility, and even vilification.

Sometimes they do it out of ignorance—a kneejerk reaction to something they don’t understand. They may also simply view autism as a “deficit” or “fault” that needs to be corrected.

Acknowledging areas for growth

There is a tendency within the autism community to react defensively to the “autism-as-deficit” paradigm by casting autism exclusively as a strength. 

Given many of us feel that our autism is an intrinsic part of our identity, it makes sense that we should feel compelled to defend it. 

Personally speaking, I would much sooner rather celebrate my strengths than look at myself through the lens of inferiority.

At the same time, I recognize that being autistic can come with some downsides. For example, I find my various sensory sensitivities to be a nuisance. And I wish I could form and sustain relationships with the ease enjoyed by many NTs.

Should I treat these downsides as a reflection of my worth? Definitely not.

That said, I do think there is value in recognizing our personal areas for growth. For me, this is developing stronger social skills.

Self-esteem starts with acknowledging strengths

Areas of growth aside, I think there is merit in focusing on strengths. Being autistic is can convey quite a few. For example:

  1. We enjoy peer relationships characterized by absolute loyalty and impeccable dependability
  2. We are free of sexist, “age-ist”, or culturalist biases; able to regard others at “face value”
  3. We are willing to share our mind, irrespective of social context or adherence to personal beliefs
  4. We have an ability to pursue personal theory or perspective despite conflicting evidence
  5. We seek an audience or friends capable of enthusiasm for unique interests and topics
  6. We take consideration of details and spend time discussing a topic that may not be of primary interest
  7. We listen without continual judgment or assumption
  8. We are interested primarily in significant contributions to conversation, preferring to avoid “ritualistic small talk”, or socially trivial statements and superficial conversation.
  9. We seek sincere, positive, genuine friends with an unassuming sense of humor

And as employees, we are also known to be: reliable, persistent, perfectionists, easily able to identify errors, technically able, and to have a sense of social justice and integrity.1

We are also willing to question protocols, can be highly accurate, attentive to detail, logical, conscientious, knowledgeable, original in problem-solving, honest, and likely to thrive on routine and clear expectations.

In a majority of situations, these qualities are quite beneficial. They also contradict the autism-as-deficit paradigm.

Are you ‘strengths blind’?

Strengths vary from individual to individual, and may manifest physically, mentally, emotionally, socially, or spiritually.2

We may not be aware of those strengths and how they may have helped us to cope with the challenges of day-to-day life. But they’re still there, regardless.

Failing to recognize our strengths is called being “strengths blind”. Four factors can prevent us from seeing them.

Firstly, a lack of awareness of said strengths, resulting from not practicing self-awareness or feeling disconnection from our identity.

Secondly, we may not see our strengths as meaningful. Thirdly, we may downplay them as ordinary, rather than extraordinary.

And fourthly, we may overuse our strengths to the point that they create problems.

One commonly overused autistic strength is passion. 

To elaborate: autistics can have something of a reputation for wanting to share knowledge about their areas of interest, even with the most casual of acquaintances.

If we’re not careful, we may end up talking at length and scarcely allowing the other person to get a word in edgewise.

In fact, we can become so caught up in the act of sharing that we fail to take notice of the subtle—and not-so-subtle clues—that the other person is getting annoyed, or feeling frustrated and overwhelmed.

Yet in moderation, this character strength can be hugely advantageous. Passion for instance can enable us to become leading specialists in our chosen fields.

Putting our strengths into practice

So, how do we overcome strength blindness? By growing our strengths awareness.

You can begin in your own life by reaching out to your closest friends and family members and asking them, “What do you think my strengths are?” 

Their responses should give you a clear idea of what you excel most at. Alternatively, you can take this character strengths and virtues questionnaire.

Some common strengths or qualities are creativity, curiosity, judgment, love of learning, perspective, bravery, perseverance, honesty, zeal, love, kindness, social intelligence, teamwork, and fairness.

Other qualities are leadership, forgiveness, humility, prudence, self-regulation, appreciation of beauty, and excellence, gratitude, hope, humor, and spirituality.

The great thing about character strengths is that most are not in any way shaped by our being autistic.3 (Small caveat: many autistics may struggle with social intelligence and teamwork, and yet we also love to learn and are very curious.)

Once you’ve identified our strengths, select your topmost three. Now ask yourself, what activities do you do in service of those strengths?

Chances are when you do those activities, you’ll feel great about yourself. Why? Because they are impactful, and because they provide satisfaction. 

self-esteem autism Essy Knopf

Strengths-based habits improve self-esteem

When we do these activities and receive a positive result, it affirms our strengths and builds self-esteem.

If you’re struggling with self-esteem issues, make a conscious plan to do at least one of the three activities when you feel down or like you’re struggling.

If love is one of your strengths, perform a kind act for someone, such as buying a friend a gift. If appreciation of beauty is a strength, visit an art gallery or public garden. 

If creativity is a strength, pick up a pen or paintbrush and start creating.

Of course, doing the occasional activity can only take you so far. If we really want to grow our self-esteem, we should make these activities into habits.

Set aside a regular time in which to do each of the activities you identified. Incorporate them into your daily or weekly schedule, until they become habitual.

Wrap up

Why is making activities into habits important? Because habits create a powerful snowball effect.

The more we exercise our strengths, the more they feel like a part of our character. The more we orient our character around our strengths, the more capable we feel.

The more capable we feel, the greater our sense of self-worth. The greater our sense of self-worth, the more likely we are to embrace our strengths. And so the cycle goes.

What are some of your strengths, and how do you express them? 

And what’s one new habit you could commit to over the coming week? Share your responses in the comments.

Autistics mask to survive systemic ableism—at the cost of their self-worth

systemic ableism autism masking Essy Knopf
Reading time: 6 minutes

Autistic individuals learn early on that if they want to survive in a society shaped by systemic ableism, they have to mask their true autistic selves and hide many of the accompanying traits.

But over time, masking damages our self-worth. And it may also fuel internalized ableism.

So why then do we persist in doing it? Because while accommodations are sometimes made for people with disabilities, but they are by far the exception to the rule.

In the case of autism, accommodations can be even less likely, due to what clinicians call “disguised presentation”. That is, their autism isn’t always that obvious, or they are actively “camouflaged by the autistic.

Sure, neurotypicals (NTs) may view and treat autistics as if they are also NTs. But when they do, they set the bar for acceptance impossibly high.

When NTs expect autistic folk to think and behave as they do, the moment the autistic individual has a mask “lapse”—for example, by being overly direct, or failing to read social cues—the NT will misattribute that lapse to another cause. 

Because of systemic ableism, NTs assume that the masking/non-presenting autistic is simply behaving in a certain way because they are “selfish” or “rude”, and not because they are actually autistic.

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

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 ableist expectations.

Most I believe are oblivious of the extent to which this ableism informs their thinking and leads to microaggressions.

Microaggressions refer to 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 within the families of autistic folk. For instance, I remember my own parents calling me “antisocial” for being a bookish introvert.

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

Some teachers would tell 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 autistic. 

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

Shortly after receiving my own, 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”.

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”.

Autistic folks typically 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 autistic folk can lead to confession and misunderstanding.

To give an example: when I got into trouble as a child, I would usually be upfront upon 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.

Even with a diagnosis, NTs may continue to mistake an autistic’s intentions. 

For example, during one visit to my parents, my mother told me she was going to make some pasta sauce.

She explained that she was going to fetch a can of tomatoes, indicating what I took to be a bucket-sized can.

Knowing my mother had a tendency to bulk-buy, I thought she indeed meant to fetch a can of that size. 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—in their own confusion—accused me of being a smart aleck.

We mask because authenticity is risky

This quality of failing to adjust expectations when dealing with an autistic individual can sometimes be the result of the disguised presentation I mentioned earlier.

In such cases, autistics present themselves as NT, and in some cases, this is deliberate (camouflaging), with the autistic trying to mask their disability for fear of being attacked or marginalized.

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

Due to our impaired ToM, it can be hard to understand NTs and to 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. Sometimes not. 

A positive example is overcoming noise sensitivity by wearing headphones whenever out in public. A negative example is avoiding talking about one’s interests, for fear of misreading social cues and rambling on.

But masking is self-defeating

Autistics 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 autistic is almost always self-defeating. 

For instance, 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.

But 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 autistic folk. Personally, in the past, I have struggled in particular with self-organizing, managing my time, and staying on track.

In one case, 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 for advice on 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 autistics. Often we’re told that we have done wrong, without being told how to course correct.

Systemic ableism creates internalized ableism

Until my diagnosis with autism, I didn’t have a framework by which to defend my difference. Having long been challenged and attacked over my autistic 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 difference. 

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 autistics.

I convinced myself that the people who frequented autism-related groups weren’t like me, that I was somehow more “high functioning”.

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, that despite everything I knew, I still believed my autism to be a kind of flaw or personal shortcoming.

Wrap up

Systemic ableism oppresses by demanding that autistics abandon their identities and silence their needs. The presence of systemic ableism in autistic lives, however, can be countered. 

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

One immediate way we can embrace our authentic selves is by seeking out fellow autistics around whom masking is not necessary.

After all, the neurodiverse community exists to normalize individual experiences. It does not mandate masking, and it works to combat the stigma that can make having a disability such an isolating experience.

Autistic 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.

Is there a place for the graysexual identity within the gay community?

Gray-a demisexual graysexual asexual Essy Knopf
Reading time: 4 minutes

Apparently being gay 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.

Gay hypersexuality

At 18, when I was just starting to explore my gay 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 gay publications. 

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

Being a graysexual in the gay ‘monoculture’

The gay 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 gay 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 gay world is often treated as a kind of handshake, this expectation makes sense.

This is not to say that gay 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 gay 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 gay acid test.

Another fact to consider is that in gay 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 gay 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 LGBTQI+ 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.

Gay autistics exist, and we need a name

Essy Knopf gay autistics spectrum unicorn
Reading time: 3 minutes

As a gay autistic, I wasn’t really surprised when I learned that gender identity and sexuality happen to be more diverse among autistic people.1 2 3 4 5 6 7 8 9

What really surprised me, however, was the fact that people like me didn’t yet have a name.

When you’re autistic, you’re usually described as being “on the spectrum”. Sex, gender, gender expression, and sexual orientation have also been portrayed as existing on a spectrum. 

That said, the gender spectrum model has been criticized for being limited in its representation of the full range of sexualities, genders, gender expressions, and sexual orientations.

To explain: when you argue that male/man and female/woman occupy two points on the far ends of gender expression, you exclude other identities that may not entirely exist between these two points.

For example, intersex people might feel their sex characteristics are outside of existing categories of male or female.

One alternative to the spectrum model created by the organization Trans Student Educational Resources is the gender unicorn model.

The unicorn model is a lot more open-ended than the spectrum model where it comes to defining gender, sex, and physical and emotional attraction. 

The five categories used in the unicorn model are gender identity, gender expression, the sex one assigned at birth, whom you are physically attracted to, and whom you are emotionally attracted to.

So rather than describing people like us as being on two spectrums, I’m going to roll with the term “spectrum unicorn”. 

I think using this label can be a great way to identify those of us who are both autistic and LGBTQI+. It also opens the conversation to exploring some of the unique challenges we might face.

The theory of intersectionality is all about, well, intersections—not of traffic, but our identities.

But let’s say we use the traffic metaphor. In this case, the cars are our individual identities and intersections the contexts that define how they interact.

For instance, as someone who is gay and autistic, I sometimes felt stigmatized and oppressed on two fronts by wider society. This means I experience double the minority stresses.

Growing up, I was mocked for both my interests as a gay boy and for my autistic behaviors.

And even within the LGBTQI+ community, I have felt excluded and marginalized for being autistic.

For instance, as someone who has sensory sensitivities, gay nightclubs and circuit parties are incredibly overwhelming and thus unpleasant.

This means therefore I can’t easily participate in some aspects of mainstream gay culture, which reflects the ableism of wider society.

Conflicts between LGBTQI+ and autistic identities are a pretty big topic, and one I plan to explore in a later post. But if you at all relate to anything I’ve said today, let me know in the comments.

Do you identify as autistic and LGBTQI+? What are some of the challenges you’ve faced due to these identities? Have you experienced conflicts between them?

The first step towards an anti-oppressive social work practice? Understanding intersectionality

essy knopf intersectionality
Reading time: 9 minutes

Intersectionality teaches us that identity is complex, made up of a variety of factors including race, gender, class,1 ethnicity, age, sexuality, and physical ability.

How these aspects of self interact with power structures and cultural interpretations2 and shape our experiences of privilege and power, oppression and disadvantage, are the crux of discussions about intersectionality.

Critical Race Theorists argue that having a minority identity, such as being Black in a society in which White dominance and structural racism is the norm, will lead to some level of oppression while being the dominant identity—White—will result in the opposite experience.3 4

Racism, just like ableism, ageism, ethnocentrism, heterosexism, transphobia, and sexism are all forms of oppression. They are not universal, but reflections of power differentials produced by those with dominant identities. In North America, these typically are “White”, “male”, “heterosexual”, and “Christian”.5

The oppression experienced by a Black person is only further exacerbated when they also share additional “targeted” identities such as “having a disability” and being lesbian, which brings its own share of minority stresses.6

But say you were all three of these things and a member of the upper-class. This would complicate matters by adding some degree of privilege to the power differential equation.

Selfhood thus is the result of “potentially conflicting, overlapping identities, loyalties, and allegiances”.7 This is the puzzling truth of intersectionality: nothing is ever as clear-cut as it might seem.

In the following paragraphs, I will use my own experiences as a case study about the intricate—and sometimes contradictory—nature of having intersectional identities.”

An introduction to intersectionality

I identify as a person of color and someone who has a disability (autism). I also identify as a gay male.

My identity thus is neither single nor unitary, but the product of innate traits such as genetics, gender, and sexual preference, as well as self-selection and social construction.8

To elaborate: while I was raised in Australia, I never felt anchored to this nationality, nor to that of my parents, given I had limited access to their home countries and cultures: Iran and the US. 

I was raised in what I perceived to be a White dominant culture, and knew that my olive skin color led people to view me as non-White, or at the very least an “honorary White”.9

My awareness of being non-White was only heightened through conflict or oppressive microaggressions—“small acts of racism, consciously or unconsciously perpetrated”10—such as being called a racial slur by a stranger at age six.

In the wake of 9/11, some high school peers began altering my name until it resembled either “Saddam Hussein” or “Osama bin Laden”.

While motivated by the desire to order the world, these categorizations marked me as both inferior and outsider, imposing upon me a racial identity that conformed with a racial essentialism stereotype.11

According to this stereotype, all Middle Easterners are Muslims, and therefore terrorists, patriarchs, misogynists, and anti-Western.12 These post-9/11 racial scripts13 were reductive and failed to respect the unique and multifaceted nature of my identity.14

My racial identity, in this case, was not an “objective, inherent, or fixed” quality corresponding to a “biological or genetic reality”, but the product of social construction;15 a shaping through “social and cultural contexts, public discourses, national myths, and intergroup relations”.16

In being identified as Middle Eastern, I was grouped with a devalued “target”, to be dominated, oppressed, and marginalized by “agent” groups.17 

the thoughtful gay intersectionality

The social construction of oppression

The oppressive experiences I described here were not the product of mere individual prejudices and attitudes, however, but rather a cycle of socialization designed to reinforce racist patterns of privilege and oppression.18

This socialization triggered in me a sense of shame and guilt about the way I looked, in turn giving rise to internalized racism. Those drove me to shun all aspects of my own perceived “otherness”19 during future social interactions.

Growing up in Australia, I learned in school that these racist patterns were the product of legislation, such as the cultural assimilation policies of the 1940s and 1950s.

There was also the White Australia Policy, which limited immigration of all non-British people and was only abolished in 1975 with the Racial Discrimination Act.20

Despite the Australian government’s subsequent embrace of multiculturalism, it seemed to me that the commonly held social expectation remained one of assimilation.

If you failed to speak English with an Australian accent or to use Australian slang, if you subscribed to “foreign” religions such as Islam, or if you refused to embrace tokenistic aspects of Australianmui culture such as enjoying barbeques, the beach, and sports, you faced possible mockery and marginalization.

This I now understand was more than standard “ingroup” behavior, whereby members’ identities are reaffirmed by their exclusion of “outgroup” members.21

It was, rather, a process of socialization oriented towards sustaining “White, male, heterosexual, Christian institutional and economic power”.22

The tyranny of heteronormativity

This process began in school, with the daily enforcement of rigid gender scripts.23 Males were expected to have a keen interest in sports, to regularly prove their athletic prowess, to speak in clipped, monosyllabic sentences, and to limit their facial expressions.

Any kind of weakness was not tolerated. Expressing emotions or empathy was frowned upon. Judgment, dismissal, or exclusion among boys and men were the three methods by which I saw this toxic masculinity socialized.

In this sense, one’s gender “membership” often felt uncertain—prone to being retracted by one’s peers at the slightest infraction. 

Every aspect of how one presented or conducted oneself felt open to scrutiny. If you had a lisp, gestured too much, or walked in a certain way, you could be declared “girly”, “pansy”, or even a “f****t”.

To be called gay was to be ruled an abject failure as a male, a dirty sexual deviant, and a threat to the social order.

Once accused, you would invariably find yourself pushed to the bottom of the social pecking order.

Given my various autism-related traits, such as my unusual gait and style of speaking, I found myself excluded and bullied by members of privileged agent social groups; specifically, White, neurotypical, heterosexual boys and men. 

How oppression can accumulate

This “othering” I think was also the product of ableist assumptions that those with disabilities lack intelligence and are helpless and incapable of assuming care for themselves.24 

In a culture that codes masculinity as being self-sufficient, people with disabilities accordingly fail the acid test. 

Consider that when my impairment was revealed—upon committing a social gaffe, for example—some people would respond by calling me “stupid” or “r*****ed”. 

While my disability might seem mild to some, my different style of thinking and behaving was nevertheless picked up by the finely attuned senses of agent group members, who would cut in line ahead of me at the cafeteria, turn away upon my approach, and exclude me from social gatherings. 

Where I had internalized racism as a survival mechanism, I also learned to internalize ableism and homophobia, hiding my struggles and my sexuality where possible.

I endured sensory sensitivities that made sitting in a classroom difficult, but fear of inviting victim-blaming25 however kept me from ever complaining or seeking support.

For to be perceived as disabled or gay would mean I would lose certain privileges, such as the social acceptance afforded to my “normal” and straight peers,26 and even incur their hostility and oppression.

A toxic masculinity cocktail

My aversion to revealing any vulnerability was the product of a socialized script of self-sufficient masculinity.

This script in turn stemmed from the “pull yourself up by your bootstraps/equal playing field” beliefs that have come to define both North American27 and Australian culture.

Australia for example has long conceived of itself as the land of the “fair go”, where everyone has a chance of getting ahead, with the nation priding itself for its apparent egalitarianism.28

The bootstrapping/equal playing field beliefs value self-sufficiency, as well as a formal conception of equality, whereby everyone is entitled to the same treatment.

That same conception however fails to acknowledge that people operate within power structures that either inflict disadvantage or fail to make adequate accommodations for those who face it, such as people with disabilities.29 

While I reconciled with my sexuality in my early 20s, it was not much later, after my autism diagnosis at age 26, that I was able to name the problem identified above.

By calling out this ableism for what it was and recognizing how it pervaded all aspects of my life, I was finally able to embark on the road to liberation as described by Brazilian philosopher Paulo Freire.30

My reality was no longer grounded in the belief that I was a bad person who deserved rejection. Instead, I now saw that I was someone who had been oppressed and disadvantaged.

Without a diagnosis, I had never had an adequate way of explaining my difference, or of receiving the therapeutic interventions that might have otherwise helped me overcome my interpersonal challenges. 

Intersectionality: sometimes a target, sometimes an agent

I recognize that for all these difficult experiences, there were instances in which I nevertheless enjoyed some power and privilege.

In some instances, I was a target, but in others, I was treated as an agent. As a male, I had unearned advantages and conferred dominance over females31 which, historically speaking, had enabled the former to objectify, sexually harass, and menace the latter.

Besides never having to fear such treatment, I enjoyed other privileges, such as never having to devote much attention to maintaining a gender normative appearance. Nor did I ever have to fear that the way I dressed might be blamed for my later rape.32

My male gender identity has also meant that where it comes to employment, I have a better chance of securing higher pay and a managerial role. As someone with lighter-colored skin, I also enjoy skin privilege.33

Identifying as cisgender means I have never been subjected to the kinds of everyday and major discrimination and prejudice that many trans individuals have faced,34 sometimes even from within the LGBTQI+ community.

For instance, I can successfully “pass” as my chosen gender and can use public facilities without fear of intimidation or attack. The humiliation and hurt of being dead named or having my gender identity questioned have never been a reality for me.

Growing up as a member of the middle class, I enjoyed other privileges such as a stable home, three meals a day, the occasional vacation, and so on. My parents at one point were even able to secure a private education for me and my siblings. 

As an Australian, I never had to endure disadvantages and dangers other people of other nationalities might, such as extreme poverty, civil rights abuses, war, famine, water/food scarcity, natural disasters, genocide, totalitarian dictatorships, energy shortages, a lack of public infrastructure, rampant corruption, deadly pollution, and environmental degradation.

Like other Australians, I have been blessed with a home country renowned for its cultural diversity, fresh air, intact natural environments, low population density, strong public healthcare and welfare systems, low-interest government college loans, a low unemployment rate, and low crime rates.

My nationality has granted me the comfort of knowing there was always a safety net there, waiting to catch me in the event of personal disaster.

The conflicts and contradictions of intersectionality

In short, I experienced disadvantage as a person of color who had a disability and was gay, while also enjoying privileges as a lighter-skinned cisgender male, a member of the middle class, and an Australian.

Understanding that we can have cumulative disadvantages, or simultaneously face privilege and oppression, is what intersectionality is all about.

The contradictoriness that appears during intersectional inquiry reveals the problem with assuming what it is like to walk in another’s shoes. 

Intersectionality invites us to ask and to listen, to adopt a position of humility.

From such a position, we all stand a better chance of truly understanding and empathizing with one another’s experiences.

Such an understanding is crucial to our struggle as human beings for collective empowerment.

You can read more social work-related posts here.

How losing my faith helped me discover ‘betterhood’

Essy Knopf belief faith betterhood
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During my first independent trip abroad at age 21, I agreed to my mother’s request to make a stopover in the Baháʼí holy land in Haifa, Israel. 

I began my pilgrimage at the Shrine of Baháʼu’lláh, on the outskirts of the Acre.

Emerging from a sherut—a minivan taxi—I was ushered along the pebbled path, past rows of cypresses, towards a stately mansion with an air of quiet repose.

The path ended at an elegantly carved oak door, a view I had glimpsed countless times in the front page of prayer books bearing the irreverent scrawls of my three-year-old self.

But once I was within the Shrine and kneeling on the carpeted floor, I found myself desperately trying to conjure a flame of faith.

Here I was, at the symbolic center of the Baháʼí Faith; the point of devotion towards which all Baháʼí’s turned during prayer. 

The Shrine was the final resting place of the prophet Baha’u’llah, who had been tortured, imprisoned, banished, and betrayed in the name of his Faith.

What right did I have then to feel as I did, like a gourd carved clean of its meat and left to fester in the sun?

Just who was I to squander this chance to connect with the Transcendent on His home turf?

Yet for all my knowledge of the spiritual ocean that surrounded me, for all its lapping at the walls of anger around my heart, I was not yet willing to surrender them. 

For I had built these defenses, brick by painful brick, against the cruel vagaries of life. They had served as sole protection against the frightening, unpredictable world beyond.

And yet they had also kept me in a kind of half-life, an open-eyed slumber from which I now struggled to wake.

Essy Knopf faith
The Shrine of the Bab in Haifa, Israel.

Losing my faith

From a young age, I was stricken by a profound sense of grief. It was as if both my parents, who were alive and well, had died.

Their assurances of love seemed only that—a kind of parental lip service I feared may not be true.

The closeness and understanding I craved I knew could never be possible. For a vast unnamable gulf stood between us, a gulf born of misattunement and intergenerational trauma.

The belief in my own inherent unlovability was the first of many unexplainable secrets I carried with me into my adulthood.

Then there was the fact that I forever felt like the odd one out. School classrooms were a sensory overload prison. A background hum of social anxiety pervaded each day.

My need to escape drove me away from people and into rumination. I took up residence inside inner worlds of data collection and categorization. 

Unsurprisingly, the resulting isolation made me easy pickings for the schoolyard birds of prey.

It would not be until after my 26th birthday that I’d receive an explanation, in the form of a diagnosis with Asperger syndrome. The upheaval this would bring, however, was still many years away.

The third secret involved a brother who in my teen years came to rule our home with his fists, baldfaced lies, and crocodile tears.

When my brother “disappeared” first my CD player, then my pet parrot, my parents did not so much as speak. For what could be said to appease this neverending rage that drove my sibling-turned-stranger to break windows and blacken eyes?

After too many years of handling a searing lump of coal with kid gloves, my parents bandaged their hands and retreated into silence.

My family, once as solid and seemingly invulnerable as an iceberg, ruptured, individual pieces carried slowly away by the currents of unresolved tensions.

We drifted, until at last, one final conflict forced us completely apart. At age 17, I came out as gay to my parents.

Mom and dad’s response was curiously devoid of emotions, but their fear and resulting anger were all too clear.

It was a burden I could not—would not carry. I packed my bags and left, fleeing into solitary adulthood, into the false comforts of workaholism.

For a decade, I made film after film and wrote novel after novel. I collected degrees, notching my belt until there were more holes than leather. 

I wandered through a kind of phantom existence, forever evading the seemingly unspeakable facets of my past, secretly resenting my Maker for His apparent role in predestination.

Soon, however, everything I had fought so hard to keep buried resurfaced. The three secrets I had been born in silence took physical shape as anxiety, depression, and a digestive ailment I would later discover was irritable bowel syndrome.

Essy Knopf faith
Carefully tended gardens on the slopes of Mount Carmel in Haifa.

A ‘world of illusion’

The Baháʼí writings tell us that we live in a “world of illusion”, a “mirage rising over the sands”.

Baháʼí leader ‘Abdu’l-Bahá advises us to abandon our attachment to this world, warning that “the repose it proffereth only weariness and sorrow”. 

The Baháʼí writings explain that calamities and afflictions—whether of our own creation or the will of the Almighty—are a crucible for spiritual refinement.

Our difficult experiences, we are counseled, only offer proof of the necessity of spurring the mortal world; remind us to focus our energies instead on service to humanity, and preparation for a spiritual afterlife.

But to the walking wounded, promises “of blissful joy, of heavenly delight”, of an exalted station in some “celestial Paradise” are only that: words.

Heaven emerges from the Baháʼí writings only as a half-sketched marvel in the far margins of human comprehension; insubstantial balm for very real pain. 

Any surprises then that my ego rebelled against the writings, rejecting the idea that I should find contentment in God’s apparent will; in treading the “path of resignation”.

And yet I what was my ego, except a result of the mortal condition—a condition without which my suffering as well simply would not exist.

The turning point

For a decade, I found myself theologically adrift, tethered to the Baháʼí Faith by the thinnest cord of belief, yet clinging to it all the same.

Then at age 30, the grief crescendoed and I found myself at a crossroads. I could remain where I was and be crushed by the tangled accrual of trauma, or I could begin cutting myself free.

I chose the latter, undertaking therapy, exploring books on spirituality and self-betterment, and committing to daily meditation.

Frozen emotions thawed. Long-suppressed grief flowed. And an informal truce was struck, the cold war between religious obligation and bitter experience drawing to a quiet close.

I found myself once more seeking solace in the Baháʼí writings, reciting prayers that were always met with silence. 

And yet…there was always a kind of answer to be found in the immediate calm that followed; in the finding of unexpected composure.

Essy Knopf faith
Centre for the Study of the Sacred Texts in Haifa, Israel.

From faith to ‘betterhood’

My return to the arena of life was not as a man garbed in the armor of blind faith. 

For as a compassionate being, I could not help but continue to question the suffering that defines the human condition. 

Still, as one who has suffered and saw survived, I no longer saw the words of prophets and other luminaries as simply indifferent and tone-deaf. 

Rather, they carry a certain charge. They offer consolation. Like swatches of color in a monochrome world, they offer a vision of “betterhood”.

Betterhood inspires hope. It propels us towards a higher calling. Betterhood is what I credit for leading me to advocate for others, through documentary filmmaking and the social work profession.

Today, the million dissenting voices of doubt remain as present as ever. The dialogue between the instinct to resist and the desire to surrender to some higher power continues.

But it is a dialogue that needs not end. To question is fundamentally human. And it is the necessary preface to true belief.