A Mind Unstrange

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The Antidote to Anomie: Community as Resistance in a Fractured World

“Rarely, if ever, are any of us healed in isolation. Healing is an act of communion.”

bell hooks, All About Love

“Without community, there is no liberation.”

Audre Lorde
A small group of people sit around a glowing campfire at night. Their faces are out of frame or obscured by shadows, but their bodies are relaxed—some with crossed legs, some leaning in. The fire is contained within a makeshift ring of cinder blocks, casting warm orange light across their bare feet, jeans, and shorts. The surrounding darkness suggests quiet and intimacy. It feels like a moment of rest, reflection, and quiet connection.

In memory of Karl Rudolf Zollner, who taught me about anomie and showed me how to keep weaving, even when the thread is worn thin.

Naming the Feeling

Lately, it feels like the world is coming apart and nobody knows what to do about it.

The headlines are relentless. Wars expand. Democracies crack. The air smells like smoke, and the water isn’t safe to drink. Food costs double, wages stay flat, housing becomes a fantasy. People go to bed scared and wake up tired. The future doesn’t just feel uncertain. It feels radioactive.

In public, we try to keep it together. We show up. We might smile. Maybe we make coffee. But underneath, there’s this tremor: Grief braided with dread. 

Conversations trail off into silence, or spin into panic. Everyone is either shouting or gone quiet. It feels like fewer people are gathering—pulling back, hunkering down, unsure how to speak into the whirlwind. And yet, in the middle of that silence, there are ruptures: crowds flooding the streets with signs and chants and righteous fury. 

The protests don’t undo the disconnection, but they remind us that we can still come together. Even now, something in us remembers how to link arms and say “no” out loud. 

The rest of life, though—ordinary life—often feels like it’s running on fumes. As if something vital has drained out of our daily rhythms, leaving behind a strange, brittle numbness.

It’s not just political chaos or climate grief or economic fear. It’s all of it, layered and compounding, grinding us down in ways we don’t always have words for.

But there is a word for what we’re feeling. A name for this community ache.

And it’s older than you might think.

What do you call this?

This fog. This thinned-out feeling that stretches across our days like plastic wrap. This heaviness that doesn’t crash in like a crisis, but accumulates like dust in the corners of our lives. The sense that something essential has gone missing—some shared rhythm, some common tether—and all that’s left is the performance of normalcy in a world that no longer makes sense.

It’s not just burnout. Not just loneliness. Not just fear. Those are all real, but this is something else—an atmosphere. A low, humming dread that soaks into everything: the way we move through public spaces, the awkward stiffness of once-familiar friendships, the impulse to cancel plans not out of laziness but out of psychic fatigue. We are, many of us, still functioning. Still showing up. But we’re doing it through a kind of psychic static—surviving in a system that no longer feels coherent.

So what do we call that?

When the structures are still technically standing, but the soul has gone out of them?

When the connections are still there on paper, but feel spectral?

When the world hasn’t ended, but something in it has gone very, very quiet?

There’s a name for this.

But it’s not one we use often.

There is a word for this.

Not a diagnosis. Not just a vibe. Not a self-help term or a trending hashtag.

It’s a concept from sociology—over a century old, but chillingly resonant now.

Anomie.

It names what happens when the bonds that hold a society together begin to fray—not just its laws or its leaders, but its shared sense of meaning, trust, and direction. When people no longer feel connected to one another, or to the structures that govern their lives. When norms dissolve, expectations crumble, and the thread of coherence goes slack.

Anomie isn’t just personal despair. It’s a collective unraveling.

Durkheim’s Anomie: The Name for Disintegration

What is Anomie?

Anomie is the word Émile Durkheim used to describe what happens when a society loses its grip on the shared norms and values that give it coherence. It literally means without norms—from the Greek a- (without) and nomos (law or order). But Durkheim wasn’t talking only about laws. He was naming something deeper: the invisible agreements that shape how people live together, make meaning, and locate themselves in the world.

In an anomic state, those agreements begin to dissolve. People no longer know what to expect from life, or from each other. The lines between right and wrong, success and failure, belonging and isolation all start to blur. The result isn’t always chaos in the streets—it’s often something quieter and more insidious: disorientation, drift, a creeping sense of unreality.

Durkheim first wrote about anomie in the context of rapid industrialization, when traditional social structures were breaking down and nothing stable had emerged to replace them. He believed that without strong social bonds—between individuals and communities, between effort and reward—people would begin to suffer not only materially but existentially.

Anomie, in his view, wasn’t a mental illness. It was a social illness—one that manifests in individual lives, but originates in systemic rupture.1

Historical Context

Durkheim coined the term anomie at the end of the 19th century, as Europe was convulsing with transformation. The Industrial Revolution had upended centuries of agrarian life. People were moving en masse from rural villages to urban centers, trading inherited roles for factory schedules, communal ties for wage labor, and ritual for routine. What had once been stable—even if stifling—was now in flux.

Traditional institutions, like the church, the extended family, and the village, no longer held the same power to define what a good life looked like. In their place emerged markets, cities, and a new form of social mobility that promised opportunity—but offered no guarantees.

Durkheim wasn’t nostalgic for feudalism, but he was acutely aware of the psychological cost of rapid social change. He believed that when social structures shift too quickly, people lose the coordinates that once helped them navigate life. What was once obvious—what to believe, how to behave, what counted as success—becomes uncertain. The result is not just confusion, but a kind of spiritual and moral weightlessness.

This wasn’t a fringe idea. Durkheim considered anomie central to understanding rising suicide rates, labor unrest, and the deep unease of modernity itself. 2 He saw that when people were cut off from stable roles and relationships, it wasn’t just their income that suffered—it was their sense of purpose and belonging.

The parallels to our own era are impossible to ignore. But before we jump ahead, it’s worth sitting with what Durkheim saw: that the root of anomie isn’t chaos—it’s disconnection.

What Does Anomie Look Like?

Durkheim believed that the effects of anomie weren’t just intellectual or moral—they were visceral. When people lose their sense of place in the world, their suffering often shows up in deeply personal ways: rising suicide rates, chronic loneliness, emotional numbness, and the turn toward self-destructive behaviors.

He observed that when the norms connecting effort to reward begin to dissolve, when there’s no clear path to meaning or belonging, despair follows. People become unmoored. They withdraw. Some lash out. Others collapse inward. In Suicide, Durkheim argued that even the most private decisions—like taking one’s own life—can be traced to systemic disconnection and societal breakdown.3

Today, the symptoms of anomie are all around us.

Loneliness is an epidemic. Young people report historic levels of anxiety and hopelessness. Suicide rates continue to climb, especially among marginalized groups. Substance use has surged. Overdose deaths are often framed as public health failures, but they are just as much evidence of social collapse. These are not isolated tragedies. They are signals.

At the same time, many people retreat from uncertainty by grasping for absolutes: conspiracy theories, fundamentalist ideologies, identity-based purity tests. In the face of a reality that feels chaotic and untrustworthy, extremism begins to look like clarity. Cults of certainty rise where trust in institutions falls. Fantasy offers refuge where community once offered care.

Durkheim warned us. Anomie isn’t about crime or chaos in the streets. It’s about the quiet corrosion of meaning.

It Isn’t You. Anomie is a Systemic Condition

It’s tempting to read all of this—despair, isolation, burnout—as personal dysfunction. To assume we’ve just become more fragile, or that mental health has mysteriously collapsed on a mass scale. But Durkheim insisted otherwise: the anguish we feel in times of anomie is not primarily a symptom of individual weakness. It is a response to a society that has lost its coherence.

Anomie, in Durkheim’s view, was not reducible to depression, even if it looked like it from the outside. He argued that when people feel aimless, overwhelmed, or unmotivated, it is often because the social fabric around them has frayed to the point of uselessness. The norms that once structured life—what to expect, how to succeed, what’s worth striving for—no longer function. In a system like that, distress is not an illness. It’s a mirror.

This doesn’t mean that mental illness isn’t real, or that everyone’s struggle is the same. But it does mean we cannot treat despair as a purely personal problem. If the world feels unlivable to so many people at once, the problem is not only in our minds. It is in the conditions we’re being asked to survive in.

Durkheim’s insight still holds: the suffering we carry inside us is often a rational response to a world that has stopped making sense. And when that world fails to offer clarity, belonging, or purpose, people don’t just suffer—they disengage. They shut down, check out, or look for meaning elsewhere.

To pathologize that is to miss the point.

To understand it is the first step toward repair.

Tocqueville’s Warning: The Fragile Thread of Civic Life

Tocqueville Admired Early American Civic Strength

When Alexis de Tocqueville traveled through the United States in the early 1830s, he wasn’t just observing a young democracy—he was witnessing a social ecosystem unlike anything he’d seen in Europe. What struck him wasn’t just America’s laws or its Constitution. It was the way ordinary people showed up for each other.

He marveled at the sheer density of civic life: town halls packed with debate, neighbors organizing schools and fire brigades, voluntary associations springing up for every imaginable cause. Mutual aid societies, agricultural clubs, religious fellowships, and abolitionist groups all pulsed with energy. Americans, he wrote, seemed to instinctively form associations wherever there was a need—and through those associations, they practiced democracy daily. 4

To Tocqueville, this habit of civic engagement was more than just admirable—it was essential. He believed that democratic institutions alone weren’t enough to hold a society together. What mattered just as much, if not more, was the fabric of communal participation: the relationships people built, the trust they sustained, and the norms they co-created through shared, face-to-face life.

In this regard, early America was fertile ground. Tocqueville saw in it a kind of moral counterweight to the isolating tendencies of modern life. While Europe’s revolutions were often top-down and bloody, he saw in America a slower, quieter revolution—one rooted in cooperation, trust, and small-scale self-governance.

The town meeting was not just a political structure. It was, in Tocqueville’s eyes, a training ground for freedom.

What Did Tocqueville Fear for America?

For all his admiration of American civic life, Tocqueville saw storm clouds on the horizon.

He worried that the very conditions that made democracy possible—freedom of choice, personal autonomy, mobility—might also give rise to its greatest internal threat: a deep and growing individualism that would slowly dissolve the social fabric from within.

Tocqueville didn’t use the word selfishness—that wasn’t quite it. What he feared was something subtler and more corrosive: the tendency of people in democratic societies to withdraw into private life, to focus on personal concerns while retreating from the shared labor of community. As people became more focused on their own families, fortunes, and freedoms, he warned, they would lose the habit of looking outward—toward neighbors, toward collective projects, toward the long, slow work of mutual care.

This shift wouldn’t happen all at once. It would unfold quietly, as people stopped joining associations, stopped attending meetings, stopped believing that civic participation made any real difference. And as that withdrawal took root, democracy would begin to hollow out—not from the top down, but from the inside out.

In Tocqueville’s vision, the danger wasn’t dictatorship—it was disconnection. The state wouldn’t need to seize power if the people simply stopped exercising it. And in that vacuum, he feared, more centralized and impersonal systems would emerge: bureaucracies, markets, technocracies—all efficient, none accountable. The citizen would become a consumer. The town hall would be replaced by the ballot box—and the ballot box, eventually, by apathy.

Without the daily practice of building shared life, he warned, freedom would become little more than a slogan.

And democracy, a shell.

The “Tyranny of the Majority” and the Rise of Algorithmic Pressure Today

One of Tocqueville’s most unsettling insights was that democratic societies might not need authoritarian rulers to silence dissent—because the majority could do it themselves.

He called it the tyranny of the majority: the way public opinion, once dominant, could become a kind of invisible coercion, punishing those who think or live differently. This tyranny wouldn’t show up as censorship or police raids. It would manifest through social shame, ostracism, and moral pressure. People would internalize the norms of the majority, and those who resisted would be pushed to the margins—not by law, but by culture.

In the 1830s, that idea was already provocative. In 2025, it feels prophetic.

Because now, we don’t just face the tyranny of the majority—we face the tyranny of the algorithmically amplified majority, or what looks like one. Social media doesn’t just reflect public opinion; it reshapes it, optimizing for outrage, visibility, and conformity. Platforms don’t show you the quiet nuance or the thoughtful dissent. They show you what will provoke, polarize, and perform. They reward alignment and punish ambiguity.

Under this system, we learn quickly what kinds of speech get likes and what gets shunned. What identities are affirmed and what questions are labeled suspicious. Even in progressive spaces, people are often afraid to speak honestly—not because of state repression, but because of the accelerating speed of judgment. You can be exiled for stepping outside the current consensus—even if the consensus is constantly shifting.

Tocqueville feared that in a democracy, people would stop thinking freely for fear of offending the crowd.

What he couldn’t have predicted was that the crowd would be sorted, stacked, and served to each of us in a hyper-personalized feed—a million private majorities, each demanding allegiance.

What Would Tocqueville Say if He Could See Us Now?

Probably: “You’ve stopped practicing democracy.”

If Tocqueville were somehow dropped into the United States today, he might be dazzled at first. The technology, the constitutional endurance, the formal right to vote—it would all look like a triumph of democratic evolution.

But it wouldn’t take him long to see the hollowness beneath the surface.

Where are the town halls? The neighborhood assemblies? The cross-class associations built not just around identity, but around action? Where are the daily rituals that train ordinary people to speak, listen, compromise, and lead?

He would see a country where democratic institutions still technically exist, but where the habits of democracy have atrophied. Where people vote every few years—if they vote at all—but rarely organize, deliberate, or build anything together between elections. Where civic engagement has been replaced by partisan spectacle, community by consumption, and participation by performance.

He might look around and say, simply:

“You’ve stopped practicing democracy.”

Because to Tocqueville, democracy was never just a set of procedures. It was a way of life—messy, slow, deeply relational. It required neighbors knowing each other. People taking responsibility for their communities. A willingness to wrestle with difference instead of canceling it, to argue with integrity instead of retreating in silence.

He would recognize the symptoms of its absence not just in our politics, but in our loneliness, our fatigue, and our disconnection. And he would warn—again—that democracy cannot survive on structure alone.

It must be lived.

Robert Putnam’s Diagnosis: The Collapse of Social Capital

Bowling Alone and the Empirical Cliff

If Tocqueville gave us a warning and Durkheim gave us a theory, Robert Putnam gave us the data.

In his landmark 2000 book Bowling Alone, Putnam documented what he called the collapse of social capital in the United States—the slow erosion of the relationships, networks, and shared activities that once formed the backbone of American civic life.5 His research revealed what many had sensed but struggled to articulate: that over the last half-century, Americans had become profoundly less connected to each other, and the decline wasn’t anecdotal. It was measurable.

The numbers were staggering. Participation in local organizations—PTAs, neighborhood associations, Lions Clubs, and rotary groups—had plummeted. Union membership fell. Church attendance dropped sharply. Fewer people hosted or attended dinner parties. Volunteering declined. Even seemingly innocuous social pastimes like playing cards with friends or having people over for coffee became statistically rare.

And then there was Putnam’s now-iconic metaphor:

Americans were still bowling—but they were bowling alone.

In other words, the activity survived, but the togetherness did not.

These weren’t just cultural shifts. Putnam showed that declining social capital had tangible consequences: lower trust in institutions, weakened democratic participation, and a rising sense of dislocation. People were voting less, trusting each other less, and engaging with their communities less—and they were feeling the effects in everything from mental health to local governance.

What Durkheim called anomie, Putnam translated into numbers and graphs. What Tocqueville called the art of association, Putnam showed was in freefall.

The Link to Rising Distrust and Civic Withdrawal

As social capital declined, Putnam observed, something else crept in to take its place: distrust.

It didn’t happen overnight. It followed the curve of disconnection. As people stopped joining, gathering, and sharing space, they began to lose the reflex of belief in one another. Not just trust in government, but trust in neighbors, coworkers, local institutions—even in the idea that we’re all part of something worth caring about together.

When people no longer feel embedded in a web of relationships, their sense of obligation to the common good begins to fade. Why invest in a community you don’t feel connected to? Why vote if you don’t think it matters? Why speak up at the school board meeting if no one listens, and everyone is already shouting?

Putnam showed that civic withdrawal is both a symptom and a cause of mistrust. As we disengage from public life, institutions become less responsive—less democratic—and people feel even more alienated. The feedback loop deepens. Fewer people participate, which makes the system weaker, which makes participation feel more futile. And so on.

This spiral doesn’t just affect politics. It affects health outcomes, education, disaster response, and neighborhood safety. Communities with high social capital are more resilient in every measurable way. But when that capital dries up, people start to live like strangers—not just to each other, but to the very idea of society.

It’s no wonder that conspiracy theories, political cynicism, and fatalism flourish in that vacuum.

When people stop showing up for one another, it becomes easier to believe no one ever will.

His Theory: When We Stop Investing in Each Other, We Lose Our Democratic Immune System

Putnam’s core argument was never just about bowling leagues or church potlucks. It was about infrastructure—not the kind made of roads and bridges, but the invisible systems of trust, care, and cooperation that keep a democracy alive.

In healthy societies, people participate. They vote, yes—but they also join, volunteer, help, listen, and gather. These habits of connection are what Putnam called the “schools of democracy.” It’s in local associations and community networks that people learn how to deliberate, compromise, lead, and trust across difference. These small acts aren’t trivial—they’re how we build the capacity to navigate larger crises together.

When people stop investing in one another, those democratic muscles atrophy. The result isn’t always immediate collapse—it’s something more like an immune deficiency. The body of society still stands, but its ability to respond to stress is weakened. Division spreads more easily. Authoritarian ideas gain traction. Institutions become brittle. Cynicism hardens.

It’s a slow erosion, not a sudden disaster. But by the time a true crisis hits—a contested election, a pandemic, a climate catastrophe—the system can no longer protect itself. Not because the Constitution failed, but because the people no longer trust each other enough to act collectively.

In this sense, Putnam didn’t just measure decline—he mapped out how democracies decay from within.

And he showed that the damage begins not in Washington, but in neighborhoods. In how we treat one another.

In what we choose to build—or let unravel.

Tocqueville warned that democracy depends on shared life. Durkheim gave language to the despair that sets in when shared life breaks down. And Putnam showed that this breakdown wasn’t theoretical—it was already well underway. The decline of social capital wasn’t just a cultural shift. It was a slow collapse of the structures that keep us connected, engaged, and resilient. By the time the next great crisis arrived, we were already living with the symptoms of anomie—whether we knew its name or not.

2020 and After: The Anomie Accelerator

The Pandemic Broke Social Ties That Were Already Fraying

By the time COVID-19 arrived, the fabric of American civic life was already worn thin. The bonds that once held communities together had been quietly fraying for decades. The pandemic didn’t start the unraveling—but it ripped the thread clean through.

Lockdowns isolated us in ways few had ever experienced. Offices, schools, churches, libraries, gyms—what sociologists call “third places,” the public and semi-public spaces where we casually encounter others—suddenly disappeared. Gatherings were canceled. Doors were closed. And what replaced them was cold and strained: Zoom calls that left us depleted, social distancing that quickly became social erasure.

Even brief, informal contact—the kind that builds familiarity and trust over time—vanished. We no longer bumped into neighbors or lingered in checkout lines or made small talk at the bus stop. The rituals of daily life that sustained social capital were stripped away, and for many people, they haven’t returned.

And underneath it all: fear, suspicion, and grief.

We grieved loved ones, lost opportunities, vanished milestones. We feared the air itself, and each other’s breath. Every interaction became a potential threat. People became nervous, withdrawn, vigilant—not just about the virus, but about social signals, political cues, and unspoken rules that shifted faster than anyone could keep up with.

These were not temporary inconveniences. They were deep psychic and communal wounds, inflicted on a society already weakened by disconnection. The result wasn’t just loneliness—it was a loss of orientation, a breakdown of social rhythm and shared presence.

For many, the pandemic didn’t only isolate us—it dislocated us.

And we haven’t really found our way back.

No One Will Protect You If It Isn’t Convenient

For me, the pandemic didn’t bring isolation—it brought exposure. I had to rent a room because I live in a minivan, and the public spaces I relied on—parks, vault toilets, gyms—were suddenly off-limits. I thought an apartment would keep me safer. But the people I lived with didn’t believe COVID was real. They said I looked fine. They didn’t notice when I lay on the floor of my room for three days, convinced I was dying. I’d caught the virus from one of their out-of-town guests.

While I flunked out of school and lost my health, they kept inviting people over for board games and sex parties. Another time, someone flew in from Spain to “quarantine” at our place before seeing their family. No one asked if I was okay. No one changed their behavior. And when my body started to break down from indoor living, they moved me from room to room like I was furniture.

I’ve had COVID three times now—all because other people decided my safety was less important than their convenience.

The pandemic didn’t just leave me alienated. It taught me something:

That no one would protect me if it costs their comfort or convenience.

People Didn’t Come All the Way Back

The lockdowns eventually lifted. The signs changed from “closed until further notice” to “now open.” Offices reopened. Planes filled. Restaurants hummed again.

But something didn’t come back with us.

We returned to commerce—but not to connection. The rituals of spending resumed. But the rituals of belonging—potlucks, playdates, drop-in visits, late-night conversations in folding chairs—remained fractured, or vanished altogether.

Some people never resumed their old lives. Others tried, but found the spark had gone out of the group text, the gathering, the friendship. What had once felt natural now felt effortful. And many simply stopped trying. The muscle of community had atrophied. The grooves of togetherness had been overwritten by isolation, suspicion, or exhaustion.

We told ourselves the pandemic had ended. But for many, the deeper rupture—the social rupture—never healed.

It’s not just that we stopped showing up. It’s that we stopped expecting others to show up, too.

We learned to get by without each other.

And that may be the most dangerous lesson of all.

Political Chaos Amplified the Breakdown

Into the void left by fractured communities, something darker poured in.

As people drifted apart and institutions lost credibility, political chaos surged forward to fill the space. What might have been a moment for collective rebuilding instead became a battleground. In the absence of trust, there was suspicion. In the absence of shared truth, there were conspiracy theories. In the absence of belonging, there were factions. And in the absence of public meaning, there was rage.

Polarization deepened into mutual incomprehension. Neighbors became strangers. Families fractured over masks, vaccines, elections, pronouns. Facts became optional, alliances hardened, and every interaction threatened to become ideological. What began as civic disengagement curdled into civic hostility—not just apathy, but active contempt.

And beneath it all: violence, or the threat of it, lurking in the margins. School board meetings filled with shouting. Statehouses filled with armed protesters. A presidential debate that ended with a sitting president telling a paramilitary group to “stand back and stand by.” And, eventually, a mob storming the Capitol, chanting for executions.

Durkheim would have recognized the symptoms. Tocqueville would have seen the consequences. And Putnam might have called it the final stage of the spiral: when social disconnection becomes so complete that democracy itself begins to feel like an illusion.

What we were experiencing wasn’t just political instability. It was the emotional aftermath of collective abandonment. A society built to reward individualism had left people isolated—and now, that isolation had turned volatile.

Economics, the J-Curve, and the Looming Crisis

James C. Davies’s J-Curve Theory of Revolution

In 1962, political scientist James C. Davies proposed a theory to explain when revolutions are most likely to erupt. His insight was simple but unsettling: people don’t revolt when they are at their lowest point. They revolt when they’ve begun to climb out of hardship—only to be thrown suddenly, violently backward.

Davies called it the J-Curve—a graph where expectations rise over time, and then plunge downward in a sharp, destabilizing collapse. The deeper the plunge, the more explosive the reaction. It’s not just suffering that triggers unrest—it’s the shock of disappointment, the psychological whiplash of hope turning into betrayal.6

Historically, this pattern shows up again and again. The French Revolution didn’t happen at the peak of starvation—it came after growing prosperity, Enlightenment optimism, and a taste of political reform. The Russian Revolution followed a period of rapid modernization. The Arab Spring came on the heels of increasing education, internet access, and rising youth expectations. The uprisings weren’t born of stagnation alone—they were sparked when progress seemed suddenly, brutally reversed.

The J-curve theory tells us that social order doesn’t collapse just because people are poor. It collapses when people believe things were getting better—and then are confronted with the realization that they were wrong, or that the system was never going to deliver on its promise.

The revolt begins at the breaking point between optimism and despair.

Today’s Curve: From Rising Expectations to Sharp Disillusionment

For much of the 2010s, it seemed—at least on the surface—that the United States was on an upward curve. The economy had begun to recover from the 2008 financial crisis. Real GDP grew steadily, averaging about 2.3% annually between 2010 and 20197, and unemployment dropped from a post-recession high of 10% in 2009 to below 5% by the end of the Obama administration.8 During that same period, a national conversation about equity and inclusion gained ground. Diversity initiatives spread through universities, corporations, and federal agencies—including Executive Order 13583, which directed the U.S. government to promote a coordinated approach to diversity and inclusion across the public sector9.

There was a sense—however tentative—that things might be getting better. Then came the crash.

The COVID-19 pandemic was more than a public health crisis. It was a massive disruption of economic, social, and psychological life. Supply chains collapsed. Entire industries stalled. Unemployment spiked. Inflation surged to levels not seen in forty years, reaching 7.0% in 2021 and remaining high through 2022.10 Simultaneously, the climate crisis intensified, bringing more frequent extreme weather events, rising insurance costs, and growing anxiety over food and water security.11

This sharp reversal—from rising expectations to cascading uncertainty—tracks precisely with what James C. Davies warned about. It wasn’t just suffering that unsettled people. It was the collapse of a narrative they had just begun to believe in: that maybe, finally, things were improving. When that fragile hope snapped, disillusionment filled the gap. And in that disillusionment, anger, paranoia, and polarization flourished.

The Recovery That Wasn’t: J-Curve After J-Curve

By 2023, many people were cautiously beginning to believe in recovery. Pandemic disruptions were fading. Supply chains were stabilizing. Grocery store shelves were mostly full again. Gas prices, though still volatile, had cooled from their peaks. Inflation was finally slowing, and headlines talked about a “soft landing.”

There was still grief, still debt, still burnout—but there was also a flicker of hope: that maybe we were through the worst of it. That we could begin rebuilding.

And then came another plunge.

In early 2024, new waves of economic instability were triggered—not by a virus this time, but by politics. Tariff threats, global trade disruption, and retaliatory economic policies sent markets lurching. Prices for basics like eggs, lumber, and used cars spiked again. Fear returned. Investment froze. Talk of recession re-emerged, now layered with fears of supply shortages, political interference, and global conflict.

What James C. Davies theorized as a single curve has begun to feel, in practice, like a series of J-curves, one after another. We rise just enough to begin to hope—then plunge back into uncertainty. The cycles of expectation and betrayal are accelerating. Each wave erodes trust further. Each crash deepens fatigue.

We are not experiencing a stable decline or a linear crisis.

We are riding a rollercoaster of collective disappointment.

And with every loop, the safety bar feels a little looser.

Widespread Fear of Civil War or Authoritarianism Isn’t Paranoia—It’s Pattern Recognition

The ambient fear so many people carry now—that democracy may collapse, that civil war might break out, that authoritarianism is not just possible but already underway—can sound, on the surface, like panic. Like the fevered edge of political discourse.

But it isn’t paranoia.

It’s pattern recognition.

History teaches us that no society is immune to collapse. And it shows us what collapse often looks like before it arrives: widening inequality, eroding trust, factional violence, institutional fragility, scapegoating of marginalized groups, increasing surveillance, and the normalization of political cruelty.

We are not imagining these things. We are witnessing them.

We’ve seen a sitting president attempt to overturn an election. We’ve seen books banned, protest criminalized, and entire demographics targeted as existential threats. We’ve seen vigilante violence applauded, and the language of extermination creep into political speech. We’ve seen pandemic aid rolled back while billionaires gain wealth, and basic survival reframed as personal failure.

What Davies called the “revolutionary situation” doesn’t begin with marching bands and manifestos. It begins when people lose faith in the future and feel they have nothing left to lose.

We are surrounded by people who feel that way right now—on the left, on the right, and in the vast, frightened middle.

The language of collapse has entered the mainstream not because people are overreacting, but because they’re paying attention.

They are watching the curve rise.

And they are bracing for the next drop.

Breathing Space: Before We Turn

It would be easy to stop here.

To say: this is the end, the unraveling, the long slide down. To let the fear harden into fatalism. To declare the experiment failed.

But that’s not the story we’re telling—not yet.

Because if anomie is a social illness, then it means we’re not doomed. We’re sick. And sick things can be treated. Systems can be repaired. Threads can be rewoven—if we understand the diagnosis, and if we remember how to care for one another.

The question isn’t just what’s breaking.

It’s what still holds.

And that’s where we go next.

So What Do We Do? The Antidote to Anomie

Community as the counterspell

Anomie feeds on disconnection. It grows where people are isolated, unseen, and unsure that they matter. Its cure, then, cannot be individual. It cannot be found in better habits or more discipline or another mindfulness app.

The antidote to anomie is community.

Not performative unity. Not empty slogans about healing. Not a kumbaya fantasy where everyone agrees. What we need is real, tangible connection—the kind that grows slowly, awkwardly, messily. The kind that can survive disagreement. The kind that makes room for people who are grieving, angry, exhausted, or unsure how to be in a room with others again.

We don’t need to agree on everything.

We need to show up.

Not just once. Not just when it’s convenient. But over time, with care, with attention, with the humility to ask “How can I help?” and the courage to answer “I need you.”

Community doesn’t mean consensus. It means accountability. Witnessing. Mutual investment. It means hosting the meeting, cooking the meal, checking on the neighbor, holding the sign, offering the ride. It means organizing the union, tending the garden, building the group chat that turns into a support network that turns into something that can actually weather a storm.

It’s not dramatic. It’s not efficient. It’s not even always fun.

But it’s how we remember we exist—not as individuals floating through crisis, but as people tethered to each other by choice.

Small-Scale Social Fabric Matters

It’s easy to believe the problems we’re facing are too big to touch. The climate is collapsing. Democracy is backsliding. Billionaires own the infrastructure. What could a garden or a book club possibly do?

But this is where social repair begins—not at the scale of the nation-state, but at the scale of human beings in rooms together.

A community garden doesn’t stop capitalism. But it brings people into shared rhythm with the land and with each other. It creates space for conversation, for nourishment, for presence. A mutual aid network can’t replace a safety net, but it can keep someone from losing their home—or their hope. A book club doesn’t pass legislation, but it builds trust, shared language, and the kind of sustained attention that democracy requires.

Public schools. Disability justice collectives. Religious and spiritual circles. Makerspaces. Scout troops. Choirs. Block parties. Grief groups. Protest camps. Hobby clubs.

These are not distractions from resistance. They are resistance.

Because they restore the thing anomie corrodes: the belief that our lives are interwoven, that we are not meant to carry the weight alone.

In the aftermath of disconnection, these spaces offer ritual, repetition, and relationship. They ask us to return, to show up even when it’s awkward or inconvenient, to become part of something that lasts longer than a single crisis cycle.

Small-scale community is not a backup plan.

It is the seedbed of every durable movement.

Not Just Self-Care, but Interdependence

In a culture obsessed with binaries, we are taught that we must choose between being independent or being dependent. To stand alone, strong and self-sufficient—or to fall into need, weakness, and shame. These are the only options offered.

But there is a third way. And it is older, wiser, and more sustainable than either extreme.

Interdependence.

Interdependence says: we are not whole without each other.

It says: your wellbeing is bound up in mine.

It doesn’t mean giving up autonomy. It means recognizing that autonomy was never meant to be exercised in a vacuum.

In the wake of burnout, disconnection, and capitalist survivalism, we’re told that the answer is better self-care. Rest more. Set boundaries. Breathe. These things matter. But they are not enough—not in a world where the deepest wounds are social.

Anomie cannot be meditated away. It must be mended—through relationship, through repair, through reciprocal care.

The opposite of anomie isn’t control.

It’s solidarity.

Not the kind of solidarity that shows up once and leaves, but the kind that stays. The kind that cooks meals, folds chairs, answers late-night texts, and comes back the next day. The kind that lets us say “I can’t do this alone” without shame—and hear “You don’t have to” without hesitation.

We cannot rebuild trust alone. We cannot recover a sense of meaning alone.

And we cannot survive what’s coming alone.

Interdependence is not weakness. It is our only way forward.

A Personal Turn

Living the Antidote in Exile

For over a decade, I’ve lived in a minivan.

Not because I gave up, but because I refused to break. Traditional housing, for me, meant sensory overload, unsafe roommates, insufficient light to manage my circadian rhythm disorder, and overall compromised health. Living in my van allowed me to stay connected to what my body actually needs: sunlight, rhythm, solitude, and air.

But it wasn’t isolation.

What I’ve built, often on the margins, is community without architecture. I’ve formed relationships in parking lots and libraries, laundromats and forest clearings. I’ve facilitated autistic peer support groups on Zoom from the front seat of my van. I’ve built mutual aid networks from places others wouldn’t consider home.

There’s no front porch. But there are ritual check-ins, shared stories, and people who notice when I’m gone.

When the pandemic came, I tried to be smart and safe: I rented a room. But the space wasn’t safe. That experience didn’t just make me sick. It made the truth impossible to ignore:

No one will protect you if it isn’t convenient for them.

But I also learned something else.

That safety doesn’t come from walls. It comes from witnessing. From the people who do check in, show up, and help you stitch a little meaning back into your day. From those who say, “You still matter,” even when the world says you don’t. From those who allow you to stitch meaning into their day. From those who matter to me.

The antidote to anomie isn’t comfort. It’s recognition.

It’s knowing you’re not invisible. That someone, somewhere, still sees you.

That someone, somewhere, still stays.

The Choice to Survive Through Connection, Not Alienation

It would have been easy to pull away.

After so many failures of care—after being ignored, dismissed, pushed out, or put at risk—it would have made sense to give up on other people. To choose isolation. To disappear.

But I didn’t.

I chose to stay in the web of community, even if I had to build and re-build it from scratch. I chose to keep showing up—for my people, for my cohorts, for strangers who felt as lost as I did. I chose to believe that connection is still possible, even if it doesn’t look like what we were told it should. Even if it comes without sidewalks or front doors.

I’ve seen what happens when people remember how to care for each other.

I’ve seen disabled folks redistribute emergency funds in hours.

I’ve seen trans people find housing through group chats and mutual aid.

I’ve seen Autistic adults come alive in peer-led circles after a lifetime of being pathologized.

None of it’s easy. All of it’s fragile.

But it’s real.

And it’s worth choosing.

I don’t believe the antidote to anomie is something we’ll legislate or download. I believe it’s something we choose, again and again—through fatigue, through fear, through the ache of disillusionment.

Not because we’re sure it’ll work.

But because we refuse to vanish.

Remembering Who We Are

Reframe the Fear

It’s not just you.

The exhaustion. The disorientation. The sense that something is wrong but you can’t name it, can’t fix it, can’t escape it. The fear that the world is crumbling—or that it already has, and you missed the moment it snapped.

That feeling is real. And it’s not a personal failing.

It’s the ache of a fraying social fabric.

We were never meant to live this way: isolated, overstimulated, under-supported, and saturated with fear. We were never meant to navigate pandemics, fascism, climate collapse, and economic precarity alone, cut off from one another, taught to see connection as weakness or threat.

What you’re feeling isn’t just burnout. It isn’t just anxiety. It isn’t even just political despair.

It’s anomie.

And once you have a name for it, you can start to see it not as a fog in your own mind, but as a systemic rupture. A wound we’re all walking around with. A wound that can be seen, understood, and—if not healed entirely—held together.

This fear doesn’t have to lead to collapse.

It can lead to recognition.

To remembrance.

And to the radical act of reaching for one another in the dark.

A Call to Gentle, Persistent Action

You don’t have to fix everything.

You don’t have to carry it all.

You don’t have to save the world.

Just don’t let the thread slip through your fingers.

The social fabric is tattered, yes. But it’s not gone. It still exists in potlucks and protests, in bike repair collectives and porch conversations, in small group texts that turn into lifelines, in the way someone brings soup as a wordless way of asking if you’re okay.

You don’t need to create something massive.

You just need to continue. Show up. Reach out. Check in. Make space. Tend the fire of whatever tiny community still warms your hands.

Gentle, persistent action is not weakness. It’s what survival looks like in an unraveling world. It’s what builds back trust—not in institutions alone, but in each other. It’s what reminds us that belonging is not a gift handed down from the powerful, but a practice we can reclaim from the ground up.

Every time you choose to show up—especially when it’s hard, especially when it’s imperfect—you’re helping stitch the world back together.

One thread. One gesture. One gathering at a time.

Final Image

Picture a small circle of people sitting around a fire.

There’s food being passed, gently. A hand reaches to refill another’s cup. Someone is laughing. Someone is crying. Someone is silent, just listening. No one is performing. No one is being fixed. They’re just… there. Together. Present.

Behind them, the world is still burning. The headlines still scream. The systems are still cracking.

But in this one small clearing, there is warmth. There is care. There is a thread being handed from one hand to the next—looped, knotted, passed again. Not to bind, but to hold. Not to control, but to remind.

This is what survives.

The circle.

The flame.

The quiet meal shared between people who choose not to let go of one another.

This is not the end of the story.

It’s the place where we begin again.


FOOTNOTES

  1. Durkheim, Émile. Suicide: A Study in Sociology. 1897. Translated by John A. Spaulding and George Simpson, Free Press, 1951.
    ↩︎
  2. Durkheim, Émile. The Division of Labor in Society. 1893. Translated by W.D. Halls, Free Press, 1984.
    ↩︎
  3. Durkheim, Émile. Suicide: A Study in Sociology. 1897. Translated by John A. Spaulding and George Simpson, Free Press, 1951. ↩︎
  4. Tocqueville, Alexis de. Democracy in America. 1835. Translated by Harvey C. Mansfield and Delba Winthrop, University of Chicago Press, 2000. ↩︎
  5. Putnam, Robert D. Bowling Alone: The Collapse and Revival of American Community. Simon & Schuster, 2000. ↩︎
  6. Davies, James C. “Toward a Theory of Revolution.” American Sociological Review, vol. 27, no. 1, 1962, pp. 5–19. ↩︎
  7. Center on Budget and Policy Priorities. “Tracking the Post-Great Recession Economy.” https://www.cbpp.org/research/economy/tracking-the-post-great-recession-economy ↩︎
  8. Bureau of Labor Statistics. “Civilian Unemployment Rate.” U.S. Department of Labor, https://www.bls.gov/charts/employment-situation/civilian-unemployment-rate.htm. Accessed 20 Apr. 2025. ↩︎
  9. Executive Order 13583. “Establishing a Coordinated Government-Wide Initiative to Promote Diversity and Inclusion.” August 18, 2011. ↩︎
  10. Investopedia. “US Inflation Rate by Year.” https://www.investopedia.com/inflation-rate-by-year-7253832 ↩︎
  11. U.S. Environmental Protection Agency. “Climate Change and Agriculture.” https://www.epa.gov/climateimpacts/climate-change-impacts-agriculture-and-food-supply ↩︎

WORKS CITED

Bureau of Labor Statistics. “Civilian Unemployment Rate.” U.S. Department of Labor, https://www.bls.gov/charts/employment-situation/civilian-unemployment-rate.htm. Accessed 20 Apr. 2025.

Center on Budget and Policy Priorities. “Tracking the Post-Great Recession Economy.” https://www.cbpp.org/research/economy/tracking-the-post-great-recession-economy

Davies, James C. “Toward a Theory of Revolution.” American Sociological Review, vol. 27, no. 1, 1962, pp. 5–19.

Durkheim, Émile. The Division of Labor in Society. 1893. Translated by W.D. Halls, Free Press, 1984.

Durkheim, Émile. Suicide: A Study in Sociology. 1897. Translated by John A. Spaulding and George Simpson, Free Press, 1951.

Executive Order 13583. “Establishing a Coordinated Government-Wide Initiative to Promote Diversity and Inclusion.” August 18, 2011.

Investopedia. “US Inflation Rate by Year.” https://www.investopedia.com/inflation-rate-by-year-7253832

Putnam, Robert D. Bowling Alone: The Collapse and Revival of American Community. Simon & Schuster, 2000.

Tocqueville, Alexis de. Democracy in America. 1835. Translated by Harvey C. Mansfield and Delba Winthrop, University of Chicago Press, 2000.

U.S. Environmental Protection Agency. “Climate Change and Agriculture.” https://www.epa.gov/climateimpacts/climate-change-impacts-agriculture-and-food-supply

Exclusion by Design: The Politics Behind Who Gets to Be Autistic

This essay is a rigorously sourced defense of autistic self-identification as a valid and necessary claim to identity, support, and inclusion. Drawing on disability justice frameworks and recent research, it examines how suspicion, diagnostic gatekeeping, and biased data practices work together to exclude the most marginalized Autists—from research, services, and community spaces.

Image description: A close-up photograph of three bright yellow dandelion flowers in full bloom, surrounded by jagged green leaves. Dandelions are resilient, beautiful, and impossible to suppress, making them a symbol of autistic self-identification: natural, valid, and thriving in defiance of attempts to uproot or gatekeep.

Index

  • Introduction: Naming as Power
  • The Disability Con: Suspicion as a Design Feature
  • The Case for Self-Identification
  • Research Gatekeeping: Trimming the Outliers
  • Data Cleaning as a Tool of Erasure
  • Diagnosis as a Gate, Not a Guarantee
  • Toward Research and Access Justice
  • Conclusion: Exclusion Is Not a Mistake

Introduction: Naming as Power

To name oneself autistic without a clinical diagnosis is not a mistake, a misunderstanding, or a phase. It is a political act. In a world where diagnosis functions as both gate and stamp of legitimacy, self-identification is an act of resistance—especially for those who have been systematically denied access to medical recognition. It challenges the authority of institutions to determine who is “real,” who is deserving, and who gets to belong.

Autistic self-identification is more than personal—it is structural. It is a way of claiming access to understanding, to community, and to the accommodations that make life livable. And when self-identified Autists are excluded—shut out of research studies, denied services, or dismissed in conversation—that exclusion is not incidental. It is built into the systems that manage legitimacy. It is exclusion by design.

This essay explores how that design operates: how suspicion is coded into disability discourse, how diagnostic gatekeeping upholds unjust hierarchies, and how research practices erase the very people most affected by systemic barriers. It draws from recent scholarship in disability studies, legal theory, and neurodiversity-affirming research to show that the fight over who “gets to be autistic” is not about semantics—it’s about power.

The Disability Con: Suspicion as a Design Feature

The suspicion that disabled people are faking it is not just a social attitude—it is a structural force. Legal scholar Doron Dorfman calls this phenomenon the “disability con”: a cultural myth that casts disabled people as potential frauds and accommodations as suspect perks rather than civil rights.¹

This suspicion doesn’t arise by accident. It’s reinforced by the very systems meant to protect disabled people—insurance policies that demand proof of suffering, benefits programs that scrutinize applicants, and access protocols that require endless documentation. It is designed to disbelieve. As Dorfman’s research shows, nearly 60% of Americans with disabilities report that others question the legitimacy of their disability when they request accommodations.²

Suspicion is more than interpersonal skepticism—it’s a form of social control. It narrows who is allowed to access support without shame or interrogation. It places the burden of legitimacy on disabled people themselves, forcing them to navigate a constant performance of believability. And it rewards those who conform to a familiar, institutional image of disability.

Autistic people are especially vulnerable to this dynamic. Autism is often invisible, and public understanding of it is riddled with stereotypes. When someone self-identifies as autistic—especially if they speak fluently, make eye contact, or lack a formal diagnosis—they are frequently met with disbelief. “You don’t look autistic.” “Everyone’s a little autistic.” “You’re just quirky.” This is the disability con in action: suspicion weaponized against anyone who doesn’t fit the mold.

For self-identified Autists, that suspicion is doubled. Not only are they subject to the usual disbelief directed at invisible disabilities, but they are also penalized for naming themselves. In a society where diagnosis has been framed as the only valid entry point to disability identity, self-identification is treated not as insight, but as overreach.

The result is a system in which disbelief is embedded—by policy, by gatekeeping practices, and by cultural habits of mind. Suspicion becomes the price of access. And for those who can’t afford to pay it, the doors stay closed.

The Case for Self-Identification

When autistic people name themselves without a formal diagnosis, it is not because they want shortcuts. It’s because the diagnostic pipeline is broken—and it was never built for everyone to begin with.

Accessing an autism diagnosis as an adult is notoriously difficult. The process can be expensive, time-consuming, and geographically limited. Many providers won’t evaluate adults at all, or require outdated, childhood-focused criteria that fail to account for late-discovered or multiply-marginalized Autists. For BIPOC, queer, trans, poor, and disabled people, these barriers compound. Research has shown that racism, sexism, transphobia, and clinician bias delay or prevent diagnosis altogether.³ One 2024 study notes that LGBTQ+ adults are especially likely to be left out of assessment pathways—and that those who are self-identified often arrive at that identity after long periods of invalidation and dismissal.⁴

These are not incidental gaps. They are structural exclusions, baked into the design of diagnostic systems that prioritize compliance, affluence, and “classic” presentations of autism. The result is a massive population of undiagnosed Autistic adults—many of whom are functionally and experientially autistic, but are rendered invisible in services, research, and policy.

In response, many turn to self-identification. Not as a second-best option, but as a meaningful, grounded recognition of who they are. Recent studies affirm this as a valid path. In one qualitative study of self-identified autistic women and gender-diverse adults, researchers found that self-identification was not only accurate to participants’ lived experience—it was often transformative. As the authors note, “Self-identifying was an empowering way of attaining a positive autistic identity outside of the deficit paradigm embedded within the diagnostic pathway.”⁵

This is crucial. The refusal to submit oneself to a flawed or inaccessible system is not a failure—it’s resistance. And it reflects a growing understanding that autism is not something granted by a clinician. It’s something known, embodied, and lived.

Research Gatekeeping: Trimming the Outliers

Autism research often claims to study “the spectrum”—but in practice, it narrows the field to those who have been officially diagnosed and can pass the entrance tests of institutional legitimacy. Self-identified autistics, no matter how closely their lives align with diagnostic criteria, are routinely excluded from research. Sometimes it’s explicit: participation is limited to those who can provide documentation. Other times it’s more subtle—recruitment from clinical populations only, or designs that filter out anyone with co-occurring disabilities, “incomplete” profiles, or divergent communication styles.

The result is a biased body of research that skews toward the most privileged and most easily measured. The Autists who are self-taught, self-knowing, or self-naming are left out—not because their experiences are irrelevant, but because their legitimacy has not been officially rubber-stamped.

This has consequences. When researchers build studies that exclude self-identified Autists, they’re not just shaping the dataset. They’re shaping the field. They’re determining who counts as autistic—who gets to represent the spectrum, influence findings, and appear in the literature that drives services, funding, and public understanding.

As one 2024 paper argues, “Self-identified autistic individuals provide valuable context and data for many of the social processes and preferences reported by autistic people.”⁶ Their exclusion doesn’t just hurt them—it distorts the science. It ensures that those most affected by diagnostic barriers remain unheard, uncounted, and unrepresented. It elevates conformity over complexity.

And it’s personal. For self-identified Autists, research exclusion is another form of erasure. They see their experiences mirrored in autistic communities. They find language and tools that help them thrive. But when it comes to contributing to the knowledge base, they’re told: you don’t count.

As I’ve written elsewhere: when researchers trim the outliers, that’s us they’re removing. The very people who don’t fit neatly into diagnostic systems are the ones most likely to be discarded in data collection. The people with the most insight into autism’s social construction, gendered expression, and intersectional reality—gone from the record.

This isn’t scientific rigor. It’s diagnostic hegemony—a power structure that treats the DSM as gatekeeper and pathologized compliance as proof. And it leaves the research landscape flatter, whiter, more medicalized, and less truthful than the autistic community it claims to represent.

Data Cleaning as a Tool of Erasure

Scientific research carries the illusion of neutrality—but the decisions researchers make about what counts as valid data are never neutral. They are shaped by design choices, and those choices often exclude the most marginalized Autistic people before analysis even begins.

Take survey data. If an autistic person skips a confusing or upsetting question, or exits the survey early due to fatigue or sensory overload, their response is often discarded as “incomplete.” In a major UK autism survey, over 450 such entries were removed from the dataset—not because they were inaccurate, but because they didn’t fit the format.⁷ As David Mery pointed out, this kind of data cleaning disproportionately affects Autistics, whose ways of engaging with surveys often differ from neurotypical norms.⁸ The result? The most sensitive, overwhelmed, or nonconforming voices are cut from the record—not because they aren’t real, but because they’re inconvenient to the method.

Or consider brain imaging studies. Many neuroimaging protocols require participants to remain perfectly still during scans—something that can be especially difficult for autistic children or adults. In one study, autistic children were nearly twice as likely to be excluded due to motion artifacts compared to their neurotypical peers.⁹ Once again, the outcome is a dataset that favors those who can pass as compliant.

And then there’s the language barrier. Non-speaking Autists or those with intellectual disabilities are often excluded from studies by default—not because they don’t have something to say, but because researchers haven’t designed methods that allow them to say it. As Ginny Russell observed, fewer than 2% of participants in autism studies are non-speaking, and less than 6% have intellectual disabilities.¹⁰ Yet these groups make up a substantial portion of the Autistic population. Their near-total absence from research isn’t an accident. It’s a methodological choice that reinforces ableist hierarchies of who is legible, who is credible, and who gets studied.

When we ask who is excluded from research, we must also ask: who gets to define what counts as usable data? And whose lives are considered too complex, too inconvenient, too incomplete to measure? The data we clean is often the truth we most need to understand.

Diagnosis as a Gate, Not a Guarantee

Diagnosis is often framed as a neutral gateway to services, support, and legitimacy. But in practice, it acts more like a gatekeeper—one that polices who is allowed to be seen as disabled, who gets access to resources, and who is deemed credible enough to speak.

Clinicians, schools, insurance companies, and research institutions all use diagnosis as a threshold. But that threshold is not equally accessible to all. It favors those who are white, verbal, cisgender, middle-class, and able to articulate their experiences in clinical language—especially when someone in authority, like a parent, teacher, or employer, advocates on their behalf. 

Even among the privileged, those who self-advocate are less likely to be believed than those whose needs are validated by third parties. Those who don’t fit the mold—because of race, gender, poverty, language, or support needs—are far more likely to be misdiagnosed, dismissed, or ignored entirely.¹¹

This isn’t just a matter of oversight. It’s a system functioning as designed. As disability legal scholar Natalie Chin writes, “The politics of exclusion are embedded in how we define disability, how we verify it, and who gets believed.”¹² Diagnosis is not just about whether someone meets a set of criteria—it’s about who has the resources, cultural fluency, and social position to be heard.

For multiply marginalized Autists—Black Autists, trans Autists, Autists with intellectual disabilities or complex medical needs—the pathway to diagnosis is often filled with invalidation. Some are told they’re “too high-functioning” to be autistic; others are told they’re “too impaired” to understand their own experience. Still others are told they’re just depressed, anxious, dramatic, or defiant. And some are never evaluated at all.

The power to diagnose is also the power to exclude. It determines not just who gets help, but who gets counted. When researchers or institutions require formal diagnosis for participation, they aren’t just filtering for clarity—they’re reproducing the same inequalities that made diagnosis inaccessible in the first place. The pipeline is leaky, and the leaks follow familiar fault lines: race, gender, poverty, disability.

Autistic self-identification exists, in part, because diagnosis has failed to account for us. It is not an end-run around medical authority—it’s a refusal to let that authority be the only arbiter of identity.

Toward Research and Access Justice

If autism research, services, and community spaces are meant to serve Autistic people, then they must include Autistic people—all Autistic people, not just those with diagnostic paperwork in hand. The exclusion of self-identified Autists from research studies, support programs, and advocacy coalitions is not just scientifically flawed. It is ethically indefensible.

As long as diagnosis remains inaccessible, biased, and unevenly distributed, insisting on it as a requirement for participation only reinforces the very disparities we claim to oppose. Self-identified Autists are often those most marginalized by the diagnostic process: queer and trans Autists, Autists of color, Autists with trauma histories, Autists without access to affirming healthcare. Denying them access to research, accommodations, or peer spaces doesn’t protect the integrity of autism work—it undermines it.

Recent scholarship is beginning to reflect this shift. A 2024 study urges, “Researchers and advocates should consider including self-identified autistic individuals in research and services,” noting that their perspectives are both valid and necessary.¹³ These individuals bring lived expertise, often honed through community engagement, self-education, and deep personal reflection. Their inclusion strengthens—not dilutes—the authenticity and diversity of autistic knowledge.

Critics sometimes worry that opening the door to self-identification will invite people to claim autism falsely, or “steal” accommodations they don’t deserve. But this fear misunderstands both the nature of disability and the reality of self-identification. Most Autists who self-identify do so after long reflection, intense research, and often a history of misdiagnosis or dismissal. They are not seeking unfair advantage—they are seeking belonging, understanding, and tools for survival. The real danger is not that someone undeserving might slip through the cracks. The real danger is that those who need support will continue to be shut out by systems more invested in gatekeeping than in care.

In access contexts, the same principles apply. Accommodations should be based on needs, not gatekeeping. If someone communicates that they are overstimulated, struggling to process information, or in need of alternative formats or timelines, the priority should be support—not suspicion. Requiring a formal diagnosis to access accessibility tools only delays help and punishes those already failed by systems.

And in community spaces, the stakes are perhaps most intimate. Many self-identified Autists turn to autistic peer groups for solidarity, safety, and understanding after years of erasure. Excluding them—explicitly or implicitly—harms people who have often already experienced profound disconnection. The principle of “nothing about us without us” must be expanded to say: nothing about us without all of us.

Justice means recognizing that the boundaries of who counts as autistic are not natural—they are constructed. And if they were built, they can be rebuilt.

Conclusion: Exclusion Is Not a Mistake

Autistic self-identification is not a loophole. It is not an error. It is not a threat to scientific integrity or community cohesion. It is a necessary response to exclusion that was built into the system—by design.

From suspicion rooted in the myth of the disability con, to diagnostic barriers shaped by bias and inaccessibility, to research methods that quietly discard the most marginalized—the pattern is clear. The exclusion of self-identified Autists is not an oversight. It is the result of policies, practices, and norms that were designed to control who gets to be recognized, who gets to speak, and who gets to be believed.

And yet, despite this, Autistic people continue to name themselves. To find one another. To build knowledge and culture and community in the gaps left by institutions. For many Autists, self-identification is not just valid—it is the only path available. It is a form of survival, of coherence, of truth-telling.

If we care about justice—for Autists, for disabled people, for anyone whose worth has been filtered through suspicion—then we must stop asking, “But do you have a diagnosis?” and start asking, “What do you need?” We must open research, services, and community spaces to all those who find themselves reflected in autistic experience, regardless of paperwork or professional approval.

Exclusion is not accidental. It is designed—and it can be dismantled.


Feel free to share this essay with others—especially in spaces where autistic self-identification is questioned or misunderstood. You’re welcome to quote or cite it, and I hope it becomes part of a broader conversation about access, truth, and justice.


Footnotes

  1. Dorfman, Doron. “Fear of the Disability Con: Perceptions of Fraud and Special Rights Discourse.” Law & Society Review, vol. 53, no. 4, 2019, pp. 1051–1091.

2. Ibid., p. 1073.

3. Overton, Gillie L., et al. “Understanding the Self-identification of Autism in Adults: A Scoping Review.” Review Journal of Autism and Developmental Disorders, vol. 11, 2024, pp. 682–702.

4. Ardeleanu, Krista, et al. “Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion.” Autism, 2024 (online ahead of print).

5. Friedman, Ariana, et al. “A qualitative exploration of the experiences of self-diagnosed autistic women and gender-diverse individuals who are not pursuing an autism diagnosis.” Neurodiversity, vol. 2, no. 1, 2024, pp. 38–50.

6. Ardeleanu, Krista, et al. “Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion.” Autism, 2024 (online ahead of print).

7. Mery, David. “Does data cleaning disproportionately affect autistics?” Autism, vol. 22, no. 2, 2018, pp. 232–233.

8. Ibid.

9. Miceli, Molly C., et al. “Accounting for motion in resting-state fMRI: What part of the story are we missing?” NeuroImage, 2023.

10. Russell, Ginny. “Autistic people with intellectual disability often excluded in studies.” Spectrum / The Transmitter, 2019.

11. Overton, Gillie L., et al. “Understanding the Self-identification of Autism in Adults: A Scoping Review.” Review Journal of Autism and Developmental Disorders, vol. 11, 2024, pp. 682–702.

12. Chin, Natalie. “Unseen and Unheard: Reimagining Disability Justice in Legal Frameworks.” Disability Studies Quarterly, vol. 41, no. 3, 2021.

13. Ardeleanu, Krista, et al. “Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion.” Autism, 2024 (online ahead of print).


Works Cited

Ardeleanu, Krista, et al. “Self-identification of autism: Why some autistic adults lack a clinical diagnosis and why this matters for inclusion.” Autism, 2024 (online ahead of print).

Chin, Natalie. “Unseen and Unheard: Reimagining Disability Justice in Legal Frameworks.” Disability Studies Quarterly, vol. 41, no. 3, 2021.

Dorfman, Doron. “Fear of the Disability Con: Perceptions of Fraud and Special Rights Discourse.” Law & Society Review, vol. 53, no. 4, 2019, pp. 1051–1091.

Friedman, Ariana, et al. “A qualitative exploration of the experiences of self-diagnosed autistic women and gender-diverse individuals who are not pursuing an autism diagnosis.” Neurodiversity, vol. 2, no. 1, 2024, pp. 38–50.

Mery, David. “Does data cleaning disproportionately affect autistics?” Autism, vol. 22, no. 2, 2018, pp. 232–233.

Miceli, Molly C., et al. “Accounting for motion in resting-state fMRI: What part of the story are we missing?” NeuroImage, 2023.

Overton, Gillie L., et al. “Understanding the Self-identification of Autism in Adults: A Scoping Review.” Review Journal of Autism and Developmental Disorders, vol. 11, 2024, pp. 682–702.

Russell, Ginny. “Autistic people with intellectual disability often excluded in studies.” Spectrum / The Transmitter, 17 Oct. 2019. https://www.spectrumnews.org

Selective Neurodiversity in The Knowledge Gene: A Reflection on Inclusion, Contradiction, and the Limits of Evolutionary Framing

I recently read The Knowledge Gene by Lynne Kelly—a book that’s being praised for its big-picture attempt to explain the evolutionary roots of human creativity, memory, art, and knowledge. And, while I can see why it’s attracting attention, I finished it feeling unsettled.

Image description: A decorative image of a DNA double helix in warm earth tones, with glowing details and a textured background

There’s a lot this book gets right. Lynne Kelly writes with enthusiasm and deep respect for Indigenous knowledge systems. She pushes back against the rigid compartmentalization of Western education and highlights how oral cultures use art, music, movement, and landscape as memory technologies that have endured for tens of thousands of years. She makes a strong case for embodied, holistic learning—and she doesn’t just stop at theory. Her praxis includes lived experience, both her own and that of others. She references real people, including neurodivergent children, and allows their voices and interests to shape the narrative. That’s rare, and it’s worth applauding.

So yes—this book is written with good intentions. And yes—it reflects a growing awareness of the strengths and insights of neurodivergent people. But it also left me with the sharp sense that something was off. And the more I sat with it, the more I realized what I was seeing: selective neurodiversity. And this sort of pseudoneurodiversity is not aligned with the neurodiversity paradigm.

Kelly ceases to be neurodiversity-affirming when she codes how she frames NF1—Neurofibromatosis Type 1. In her telling, the NF1 gene is the “knowledge gene,” an ancient supergene that enabled humans to store and transmit complex knowledge through story, song, and spatial memory. But when that gene is damaged—i.e., when someone is born with the NF1 disorder—Kelly describes their brains as lacking the very capacities that make us human. She lists what people with NF1 are “missing”: musicality, rhythm, spatial reasoning, prosody, memory encoding, narrative flow. She mourns the “loss of creativity” in their minds. She calls it failure.

And in doing so, she draws a hard line: some minds are “creative,” and others are “broken.”

That framing might not have been intentional. It obviously doesn’t even feel harsh to so many reviewers. But it reveals a deep tension at the heart of the book: You cannot fully embrace neurodiversity while simultaneously holding one neurotype up as a “glitch in the human operating system.”

The neurodiversity paradigm, as defined by Dr. Nick Walker in her excellent book, Neuroqueer Heresies, is not a celebration of cleverness or creativity or savant gifts. It is a political and philosophical framework that asserts the equal legitimacy of all neurotypes—including those society devalues or fears. It’s not about which minds are useful to evolution. It’s about justice. It’s about recognizing that diversity in cognitive style is part of our species’ richness, not a problem to be solved or an accident to be explained away.

The Knowledge Gene engages with neurodivergence only when it fits a celebratory or useful narrative—autistic people with pattern memory, ADHD kids with high energy, nonverbal savants with encyclopedic recall. But when the differences are less easily romanticized, the language changes. And that’s where the book’s core contradiction lives: it wants to praise human variation, but only when that variation can be framed as genius.

What would a truly neurodiversity-affirming approach to NF1 look like?

It would start by centering the voices of people with NF1. It would ask not only what they struggle with, but how they see and know and move through the world. It would explore the unique experiences of those whose minds don’t align with dominant modes of expression—not as deviations, but as perspectives. It would recognize the ways that society disables people with NF1, through inaccessibility, stigma, and erasure. It would seek understanding, not explanation. And most importantly, it would refuse to define a person’s worth by their proximity to normative ideals of creativity or cognition.

The Knowledge Gene is a fascinating, ambitious book. It weaves together genetics, oral tradition, memory craft, and neuroscience in ways that are often insightful. But it stops short of the radical empathy that the neurodiversity paradigm requires. It points us toward a more inclusive understanding of how humans learn—but then turns away from the full reality of human variation when that variation feels inconvenient to the narrative.

And that, to me, is the missed opportunity. We don’t need more stories that divide minds into “working” and “failed.” We need frameworks that honor all our minds—and the many, many ways we remember, create, learn, and live.



Texas v. Becerra: A Direct Attack on Both Trans and Disabled Rights

A wooden judge’s gavel with a gold band rests on a sound block in the foreground. Behind it, a set of brass scales of justice stands slightly out of focus. Old, worn legal books are stacked beside the scales.

In May 2024, the Biden administration issued a ruling affirming that gender dysphoria qualifies as a disability under Section 504 of the Rehabilitation Act. This was a vital step in ensuring that trans people—especially those facing discrimination in healthcare, education, and employment—could access the same legal protections that disabled people rely on.

But now, Texas and 16 other Republican-led states are suing to overturn this ruling. They claim that including gender dysphoria as a disability is an overreach. But let’s be clear: this lawsuit isn’t just about trans people. It’s an attempt to dismantle disability protections altogether.

As a multiply disabled, Autistic, and trans person, I rely on these protections to survive. If Texas wins this case, the consequences won’t stop with gender dysphoria. The very foundation of disability rights is at risk.

This Lawsuit is an Attack on Disability Rights, Not Just Trans Rights

At first glance, Texas v. Becerra might only look like another attempt to target trans people. But beneath the surface, this lawsuit is part of a much broader strategy to weaken the Rehabilitation Act.

Section 504 is one of the most important disability rights laws in the U.S. It prevents discrimination against all disabled people in federally funded programs—including public schools, hospitals, and workplaces. If this lawsuit succeeds, it could create a dangerous legal precedent, making it easier to strip protections from other disabled groups in the future.

Disability protections exist because disabled people face systemic barriers to participation in society. Trans people experience these same barriers when we are denied medical care, fired for transitioning, or refused basic accommodations like correct gender markers on IDs. If this lawsuit succeeds in removing gender dysphoria from disability protections, it won’t stop there. Other conditions—especially those that conservatives find politically inconvenient—could be next.

Trans and Disabled Rights Are Deeply Connected

Many trans people are also disabled. Whether it’s due to neurodivergence, chronic illness, mental health conditions, or the physical toll of discrimination, the overlap is significant. A 2022 study found that trans people have a rate of disability twice that of the general population.

For trans people without other disabilities, losing Section 504 protections would still be catastrophic. These protections ensure access to:

  • Accommodations in workplaces and schools
  • Non-discriminatory healthcare
  • Legal protections against harassment and mistreatment
  • Housing and public services

If gender dysphoria is stripped from disability law, trans people will lose crucial protections that allow us to survive in a world already stacked against us.

While not all trans people have gender dysphoria (and a trans person without dysphoria is absolutely valid and real), being discriminated against for being transgender can create dysphoria in a person who otherwise wouldn’t experience it.

Gender Dysphoria Is a Disability—By Every Definition

The right-wing argument against this ruling hinges on the idea that gender dysphoria isn’t really a disability. But under both the medical model and the social model of disability, gender dysphoria clearly qualifies.

The Medical Model of Disability

The medical model defines disability as a condition that impairs a person’s ability to function in daily life. Under this model, gender dysphoria qualifies because:

  • It is a recognized medical condition in both the DSM-5 and ICD-11.
  • It causes significant distress and impairment when untreated.
  • It requires medical intervention (such as hormones, surgery, and social transition) to alleviate symptoms.
  • The medical community agrees that gender-affirming care is necessary treatment, not optional or cosmetic.

The Social Model of Disability

The social model of disability states that people aren’t inherently disabled—they are disabled by societal barriers. Gender dysphoria qualifies under this model because:

  • Trans people face systemic discrimination in housing, employment, education, and healthcare.
  • The distress of dysphoria is worsened by social rejection, lack of access to medical care, and legal barriers.
  • If transition-related acceptance, healthcare, and legal protections were universally accessible, gender dysphoria would not be disabling for most trans people.

Section 504 exists precisely to address barriers like these. Removing gender dysphoria from disability protections doesn’t make trans people any less disabled—it just makes us easier to discriminate against.

The Hypocrisy of the Right’s Argument

Conservatives are trying to have it both ways. They frequently claim that trans people are “mentally ill” to justify discrimination. But the moment gender dysphoria is recognized as a legitimate medical condition deserving of protection, they turn around and argue it’s not a real disability.

This is bad-faith politics, plain and simple. Their goal is not consistency—it’s to strip trans people of every possible protection.

But the impact of this case won’t stop at trans people. If Texas wins, it sets a precedent for removing other disabilities from legal protection—especially mental health conditions, chronic pain conditions, and other “invisible” disabilities that conservatives don’t “approve” of.

The Dangerous Legal Precedent

This lawsuit is a test case for weakening disability rights overall. If Texas et alia succeed:

  • Other states will follow suit, filing lawsuits to remove protections for other marginalized disabilities.
  • The legal definition of disability could be narrowed, making it harder for people with chronic illnesses, mental health conditions, or neurodivergence to get accommodations.
  • Schools, workplaces, and healthcare providers could legally deny services to disabled people, citing this ruling as precedent.

Conservatives have long wanted to dismantle the ADA and 504 protections—this case is just their latest attempt. They are using trans people as the wedge issue, but their real goal is to weaken disability protections for everyone.

What Can We Do?

This lawsuit hasn’t been decided yet—which means we still have time to fight back.

Stay Informed and Educate Others

Attend briefings and webinars to stay updated on the lawsuit’s progress and its implications. The Disability Rights Education & Defense Fund (DREDF) recently hosted a community briefing discussing the lawsuit and ways to take action.

Share information within your networks to raise awareness about the potential impact of this lawsuit on disability rights.

Support Advocacy Organizations

Consider donating to or volunteering with organizations actively working to defend disability rights, such as the National Council on Independent Living (NCIL) and the Disability Rights Education & Defense Fund (DREDF)

Contact Your State Attorney General

If you reside in one of the 17 states involved in the lawsuit—Alaska, Alabama, Arkansas, Florida, Georgia, Indiana, Iowa, Kansas, Louisiana, Missouri, Montana, Nebraska, South Carolina, South Dakota, Texas, Utah, and West Virginia—urge your Attorney General to withdraw from the case. The National Council on Independent Living provides an Advocacy & Action Center to assist you in this process.

If your state is not part of the lawsuit, encourage your Attorney General to support Section 504 by submitting an amicus brief. The National Down Syndrome Society offers an action alert with guidance on how to proceed.

Share Personal Stories

Personal narratives can powerfully illustrate the importance of Section 504 protections. Consider sharing your experiences with national organizations, local disability rights groups, and the general public if you have a platform online.

If you are trans, disabled, or both, your voice matters. Talk about how these protections impact your life.

Conclusion

Texas v. Becerra is not just an attack on trans people—it’s an attack on the entire disability community.

As a trans, multiply disabled, Autistic person, I need these protections to survive. If this lawsuit succeeds, it could set a dangerous precedent for removing disability rights piece by piece.

We cannot let that happen.

The fight against this lawsuit is a fight for all disabled people, and we must stand together to stop it. Oppressors are hoping to turn us against each other so we don’t notice what they’re doing. Resist the attempts to divide us. Solidarity is key to protecting our rights.

Job Seek Tool Review: Inclusively — A Job Board for People with Disabilities 

This image shows the Inclusively logo at the top, followed by a greeting that says, “Hello, Max!” Below the greeting is a circular profile picture of Max, who is wearing glasses, a black beanie, and an orange shirt, smiling with a festive background of blurred green lights.

If you’ve been reading me for a while, you already know I’m currently in the midst of a trying-to-not-be-frantic job hunt. Because I’m some kind of over-sharer or glutton for self-punishment, I’ll be blogging my job search. Welcome to my new blog tag: Job Search

Today I signed up with Inclusively, a job board specifically designed for people with disabilities, including mental health conditions, chronic illnesses, and neurodivergence.

I filled out all the sections about experiences and skills, and poked around the platform to see if they had a job listing for me. Nope (although there was a lingering half-match dated 2023 that hadn’t been removed for whatever reason, so I clicked “connect” anyway, because I wanted to Click All the Things.)

It remains to be seen whether I will connect with anything on this platform or not, but I think it could be a valuable resource for many people.

What is Inclusively?

Inclusively is a job platform designed to connect disabled job seekers with inclusive employers. Their mission is to open doors to untapped talent by working with companies to create a more accessible and accommodating hiring process.

How Inclusively Works

Signing up for Inclusively is fairly straightforward. You create a profile where you can:

• Choose whether to self-identify as disabled and disclose if you receive SSI/SSDI. (They said this information is anonymous and protected, but, honestly, I am not sure what they means or how it works.)

• List your skills, experience, and job preferences to help match with employers.

• Select Success Enablers—specific accommodations you might need at work.

When you see a job that looks like a fit, you click “Connect” to express interest. I have no idea what happens after that point, because I only clicked the one, ancient and forgotten listing so nothing special happened.

Employers can also search for candidates based on their skills, experience, and Success Enablers.

Job Categories and Success Enablers

Inclusively has a wide range of job categories, including:

• Writing/Editing

• Administrative/Clerical

• Customer Service/Support

• Computer/Engineering/IT

• Education

• Medical/Health

• Retail, Sales, and more.

One feature I’ve never seen elsewhere is the Success Enablers badges. These badges represent common workplace accommodations that job seekers can select to indicate their needs. There are 110 Success Enablers across 14 categories, covering a range of accommodations including communication support, mental health accommodations, and workplace modifications.

When I searched for “autism,” Inclusively offered 11 specific accommodations, including:

Designated Quiet Zones

Noise-Canceling Headphones

Alternate Interview Format

Uninterrupted Work Time

Remote Work

Users aren’t required to take all the badges that come up on a search and they aren’t limited to badges from just one search category. This platform clearly recognizes that many people have more than one disability or need a wide range of accommodations, and Inclusively allows them to reflect that in their profile.

The Success Enabler badges are also useful because they allow potential workers to tell potential employers what they need to be successful without ever disclosing a diagnosis or any other protected medical information.

What I’ve Seen on Inclusively So Far

So far, I’ve browsed the platform and noticed a strong presence of higher-tech jobs, particularly in computer science, engineering, and IT. These roles look like great opportunities for people with technical skills, but they’re beyond my expertise (which tops out somewhere around tweaking HTML by hand).

That doesn’t mean there aren’t other job types available. I signed up in the Writing/editing category, of course, and remote work is both a Success Enabler and a main search toggle, so this appears to be a job board that views remote work as the extremely important success enabler it is for so many of us disabled workers. Job offers that fit my skills should come through at some point. I just haven’t seen one yet.

I’m Checking Inclusively Daily

Checking the Inclusively job board daily is now part of my job search routine. The site says new listings go live every day, so the right job might pop up any day. Tomorrow I’ll add something else to my daily routine. Build it up, keep looking, keep asking around, keep writing. 

If you’re Disabled and have technical skills, Inclusively could be a goldmine of opportunities right now. If, like me, you’re looking for something a little different, it might take more patience. Either way, I hope I’ve shared information helpful in your own job search.

You can check it out here: www.inclusively.com.

If you’ve used Inclusively, I’d love to hear about your experience. Have you found it helpful? Let me know in the comments here on the blog or wherever I’ve posted it.

The System Says I’m Unemployable, But That’s a Lie

Close-up image of a brass padlock hanging loosely on a decorative, geometric-patterned metal gate, with warm light creating an intricate interplay of highlights and shadows on the surface. A luxurious door…if only one could enter it.

I didn’t always know I was a skilled writer. It wasn’t until I was around thirty that I realized I could craft marketable words, and my first published work didn’t come until I was about 32. But once I understood what I could do, I honed my craft and built a body of work I’m proud of. And yet, despite my ability to produce excellent writing, I keep getting shut out of jobs—not because I can’t do them, but because the job market wasn’t built for someone like me.

This is what it means to be a capable but disabled worker. This is what it means to be not failing, but failed by the system itself.

I Can Work—But Not in the Ways Employers Expect

I am autistic, I have ADHD, I have complex PTSD from childhood, and workplace PTSD from years of bullying. I have Central Auditory Processing Disorder (CAPD), which makes it difficult to process spoken language in real-time, especially in rooms with lots of ambient noise. I have sensory issues that make being around people all day an unbearable strain on my nervous system.

The short version: I cannot work with people. I can work with text.

When I’ve worked in traditional, on-site workplaces, the same thing happens every time. I get bullied. Employers don’t protect me. The stress builds until I have an autistic meltdown—not because I want to (I hate meltdowns and wish I never had them), but because my nervous system reaches a breaking point. And then, instead of support, I get fired. Even by employers who claim to understand autism. 

In one case, I was even threatened with a lawsuit if I ever told anyone how my employer had treated me. 

This cycle is not just exhausting—it’s completely unsustainable. And the two times I’ve visited Vocational Rehabilitation (in Kentucky and in Idaho) I was told I am too disabled to qualify for their assistance. The world has told me over and over again: “You are unemployable.” But that’s not true. The reality is that I have very specific ways I need to work, and the jobs that fit me are so rare and difficult to get that I am being forced to the margins.

The Devastation of Losing DoorDash

DoorDash wasn’t a great fit for me, but it was something and I was good at it. I was a conscientious worker who paid attention to detail and genuinely cared about getting hot, accurate, undamaged food to customers. I had platinum status for high volumes of high quality deliveries. I felt competent and the work allowed me to survive while only having brief contact with people, without having to navigate toxic workplaces or get stuck for hours with bullies.

Now, I’ve been deactivated because they claim I submitted false personal information (I did not. The system choked on my “mis-matched” name, face, and gender marker) and my survival is in question. That was my stopgap job, my safety job, my fallback, security job. And then, when it became clear to me that it’s just not safe for me to keep trying to do face-to-face work, it became the only job I could access.

Finding another job should be simple. I’m smart, I work hard, I can write at a high level, I’m a quick learner, I pay attention to details. But it’s not simple, because every direction I turn, I hit a wall:

Traditional on-site jobs? They put me in environments where I can’t function.

Freelancing? It’s overwhelming, requires constant marketing, and forces me to juggle projects in ways I can’t manage.

Gig work? Unreliable, inconsistent, and often exploitative.

I am highly capable, but in a narrow and specific way. That means I am severely limited in my ability to get work, even though I could be an incredible asset to the right employer.

What I Can Do (If I’m Given the Right Work Conditions)

If I were given the right conditions, I could be a phenomenal employee.

I am a strong, versatile writer with experience in:

✔ Academic writing

✔ Formal and technical writing

✔ Science and medical writing

✔ Accessible, public-facing content

✔ Lyrical and creative writing

I’ve been published by Beacon Press, The Modern Language Association, Jessica Kingsley Publishers, and National Geographic. If an employer needs words, I can give them words precisely tailored to their needs.

I can also do light tech tasks like basic HTML, simple Excel/Google spreadsheets, updating managed WordPress blogs, and any work with clear guidelines. What I can’t do is deal with people all day, audio-heavy work, or chaotic multi-tasking.

What I Need From an Employer

For me to thrive in a job, I need:

✔ Remote work. I cannot work in an office.

✔ Clear guidelines. Tell me what you need, and I’ll get it done. I have failed at jobs where I was given vague guidance. Tell me what you want me to write about.

✔ Steady work. I can produce a high volume of writing if given structured/clear assignments. I would rather write every day, full- or part-time, for one employer than juggle five employers. 

✔ Text-based communication. I can’t handle prolonged voice work due to CAPD. (I can do short video meetings if needed, but honestly? I really hope they aren’t needed. You have no idea how much meetings drain my reserves, stealing energy I could be using to write.)

✔ A workplace that doesn’t expect me to “suck it up.” I can work brilliantly when I’m accommodated, but I shut down in environments that aren’t a good fit for my needs.

If an employer or company could offer me these conditions, they would get a dedicated, highly skilled writer who could produce outstanding work without the usual distractions of office politics.

Why Finding This Job Is So Hard

Job hunting and interviewing have always been massive barriers for me. People assume that because I write well, I must be able to navigate the social aspects of job searching just as easily. But I can’t.

  • Interviews overwhelm me.
  • Networking is inaccessible.
  • Self-promotion is exhausting.

It’s a huge contradiction—I can write you a flawless cover letter, but I can’t sell myself in an interview. I can explain complex topics in clear language, but I struggle to advocate for myself when I need accommodations. The system was designed for people who can “perform” for employers, not for people who can actually do the job.

Why Did I Tell You All This?

If you’re reading this and thinking, “I know a job that fits Max’s needs,” here’s what you can do:

📩 If you’re an employer who needs a talented writer: Contact me at [email protected]. I am looking for steady, remote work where I can write and edit. You can look at my LinkedIn profile if you’d like.

🔎 If you know of a job opportunity that fits my needs: Please send leads my way. Even if it’s not a perfect fit, I appreciate the help.

💡 If you’re an autistic person reading my struggle and identifying hard with it, I want you to know: You are not failing. The system is failing you.

You are not broken for struggling in a world that refuses to accommodate you. You are not lazy or demanding for needing a different structure. And you are not alone in this fight.

I am still searching for the right place, the right fit, the right employer who sees my value. And if you’re someone who can help me find it, I hope you’ll reach out.

Independent Living in the Margins

A picture of a glass house (Mercer Island, Washington state. Architect: Eric Cobb) like rich people have the option to live in, unlike my vulnerable glass house, which is mostly metaphorical.

[content note: this blog essay mentions poverty, lack of adequate support, mental health issues, and sui*]


People talk about independent living like it’s a universal goal, a sign of success. They measure it in rent payments made on time, meals cooked in a kitchen, and the ability to keep a 9-to-5 job. If you can check all the right boxes, you’re independent. You’re thriving.

Except I live independently, and it looks nothing like that.

My independence doesn’t come from holding down a traditional job, cooking in a standard kitchen, or living in a house with four walls and a roof. My version of independent living means surviving in ways most people wouldn’t even consider. It is so outside-the-box because a box is dark on the inside, and living in darkness makes me sick.

Surviving by Refusing the Box

For me, living inside four walls without enough light isn’t just uncomfortable—it’s dangerous. Because I have Non-24-hour Sleep-Wake Syndrome, my body is tied to the sun in ways that most people don’t understand. Without sufficient (read: huge quantities of) natural light, my sleep schedule unravels. But it’s more than just insomnia or trouble sleeping. Without near-constant, daily exposure to daylight and dark nights, I become desynchronized, exhausted, isolated, and lethally sick.

So I designed my life around that reality.

Instead of forcing myself into an apartment with windows too small to be of any therapeutic value, I made my home in a minivan with uncovered windows, where I can wake with the sun and see the moon every night (though I’m currently forced to park in the middle of urban light pollution). Instead of trying to squeeze into an environment that harms me, I built an environment that mostly works—one that moves with me, one where I control how much light I get (sadly, at the cost of controlling how much darkness I get), one that doesn’t leave me trapped in a darkened room because laws require walls and a residential address to exist as anything more than a marginalized outlaw.

Most people assume I’m struggling in ways other than the actual struggles I’m coping with. Often, they see my solutions for my struggles and decide the solution is the struggle and think they understand my life. They see my minivan and my unconventional life and think I must be failing at independent living. They refuse the support I need, insisting that they have to help me live in a dark box before they will support me. I have to agree to become more disabled before I can get disability assistance beyond a small monthly check and Medicaid I rarely get to use. 

I designed a life that protects my physical and mental health.

I adapted in ways that no system would ever have suggested, because systems are built for non-disabled, housed, workers. The only people who seem to get access to the kind of housing that would actually promote my well-being instead of killing me—plenty of windows, sunlit rooms, natural surroundings—are those who can afford luxury architecture. But I refuse to believe that only the rich deserve to live in ways that support their health.

Why Am I Considered Independent When I’m Dying, But Not When I’m Trying to Stay Alive?

Despite all of this, I still can’t get the support I need.

If I lived in a dark, windowless apartment, crashed out from exhaustion, unable to function,  dying from illness that goes into remission when I live in the sun, I’d still be considered “independent” in the eyes of the system. If I were rotting but inside a socially acceptable structure, I’d qualify for help.

But because I problem-solved my way out of the N24 trap, I’m told I don’t qualify for anything.

I’m still poor.

I’m still disabled.

I’m still struggling to find meaningful work that doesn’t destroy me.

But I live in a way that keeps me alive, and because of that—as well as the overall “function level” other people have decided I have (and punish me when I fail to live up to my assigned function level)—I am excluded from support.

Agencies look at me and say, You don’t fit into our programs. Vocational Rehabilitation has turned me away twice now (in Kentucky and in Idaho) as too disabled to help. Other agencies won’t help me because I have college degrees instead of intellectual disability.

They don’t know what to do with someone who is both struggling and succeeding in the balance of my life. They don’t understand that just because I’ve found one or two solutions, it doesn’t mean I have all the solutions.

They tell me I look like I’m doing “fine.” Either they aren’t looking closely enough, the ways autism looks can be deceptive, or both.

I’m not fine.

And I’m not the only one.

It’s Not Just Me—Most Autistic Adults Aren’t Getting the Help They Need

2019 study in the journal Autism found that autistic adults report far more unmet support needs than the general population . But here’s the kicker: even though autistic people are at much higher risk of depression, anxiety, self-injury, and suicide, we are less likely to receive mental health care or support services.

(And it’s a vicious cycle, since the study found lack of adequate support increases depression, anxiety, self-injury, and suicidal ideation and completion.)

So many of us have been told we’re too independent to qualify for help but too disabled to actually function in the world as it is. One person in the study summed it up perfectly:

“I feel ‘lost’… I am too high functioning for most autism programming, but not neurotypical enough to function well in conventional work and social environments.” 

Another participant described being actively suicidal but told to wait nine months for help. Another was told that because they didn’t have a co-occurring intellectual disability, they weren’t eligible for services at all .

They were expected to fail in the right way before they could get help.

Just like me.

Independence Shouldn’t Only Mean Doing Everything Alone

I’m tired of living in a world where you have to fail in a way the system recognizes before you can get help. Where you have to be miserable in the right way to qualify for support. Where only the wealthy get to design their lives around their actual needs, while the rest of us are expected to just suffer through it. (Or become outlaws, like me.)

Independent living shouldn’t mean struggling alone. It shouldn’t mean being punished for figuring things out. It shouldn’t mean having to choose between a life that works and a life that qualifies for help.

I built a world that preserves my health and keeps me alive.

That should count for something.

That should be enough.

My necessary self-accommodation should not bar me from the external support I need, to move from surviving to thriving.

Waiting to Vanish: The Terror of Living on SSI While Billionaires Seize the Government

A black-and-white image of a hand tightly gripping a frayed and worn rope against a dark background. The rope appears to be unraveling, symbolizing Elon Musk sucking up the world’s survival safety nets.

Every month, I wait.

I wait for the direct deposit that determines whether I and my cat eat, whether I can afford to get my oil changed so the car I’m living in doesn’t die and leave me stranded and sleeping in the streets, whether I can pay for the cheap storage unit where the remnants of my life are crammed together like a sad little time capsule. I wait with my heart in my throat, because I know—I know—that one day, the money might not come. And that day may be as soon as next month.

Because when you live on Supplemental Security Income (SSI), you are always one bureaucratic decision away from being erased.

And now, the erasure is happening in real time.

Trump’s goons have taken over the federal government. Not through elections. Not through Congress. But through brute force: physically seizing agencies, shutting them down, rewriting the computer code that runs the Treasury, deciding who gets paid and who doesn’t.

Elon Musk—who is not an elected official, not even an appointee in the traditional sense, but a billionaire who believes money equals divine right—is openly bragging about “feeding” the U.S. Agency for International Development “into the wood chipper.” Ten thousand employees, gone. An entire foreign aid infrastructure, wiped off the map. Just like that.

And now, Musk and his people are inside the Treasury. They’re rewriting the systems that make Social Security payments, that distribute benefits to disabled people, to veterans, to retirees. They say they’re cutting “corruption and waste.” I know exactly what that means. I know who they think is waste. Their hero called us “human ballast”.

It’s people like me.

People who rely on the government to survive. People who don’t fit into their billionaire vision of “deserving.” People they can starve out and push to the margins because we don’t have the power to fight back.

And so I wait.

I wait for a letter in the mail telling me my benefits have been cut because of a “routine review.” I wait to check my bank account and see a zero where the lifeline used to be. I wait to find out whether I can keep barely surviving, or whether this is the month that survival runs out.

I’m already living hand to mouth. What happens when the hand disappears?

The worst part is, I’ve seen this coming. We’ve all seen it coming. They’ve been dismantling the social safety net for years, chipping away at it, eroding it, making it more difficult, more bureaucratic, more humiliating to access. The application process alone is a gauntlet of suspicion and cruelty. Prove your disability. Prove your poverty. Prove you’re suffering enough. Then, if you’re lucky, you get a pittance: just enough to keep you alive, but not enough to actually let you live.

And now? Now they don’t even want to bother with the pretense of pretending we deserve to exist.

They’re gutting the government in real time, and Congress is standing around, hands in pockets, pretending they don’t see the blood on the floor. The Republican Senate Majority Leader, John Thune, claims he “doesn’t believe” this is happening. That they’re just “reviewing how the agency is spending money.” Either he’s a liar, or he’s a coward. Either way, we’re the ones who will pay the price.

I am furious. I am terrified. I am exhausted.

I have spent my entire life fighting for scraps, for dignity, for the disability support that never comes, for the right to simply exist. And now, people who have more money than they could spend in a thousand lifetimes are pulling the plug on the only thing keeping millions of us from sinking into oblivion.

So I wait.

I wait to vanish. I wait to be declared “waste.” I wait to find out if I still have the right to survive next month.

And I am so goddamn tired of waiting.

Autism Is a Disability. But Are You Disabled?

An abstract rainbow spiral intended to be an eye-catching image to attract reader interest.

Autism is a disability. How each Autistic person relates to this fact, however, is deeply personal. Some of us embrace being Disabled as an important part of our identity. Some feel disabled by autism while others feel disabled by society, rather than autism itself. For some, the disabling aspects of autism depend on their environment, while others don’t identify as disabled at all. And that’s okay—our individual relationships with autism and disability are as diverse as we are.

But one thing remains true: autism is always a disability.

This truth matters. Without recognition as a disability, society, government, and medicine would have no obligation to accommodate us. The systems we depend on for survival—whether disability benefits, healthcare, education, or workplace accommodations—exist because autism is classified as a disability. If autism were no longer recognized this way, many of us, myself included, would be left to fend for ourselves in a world that isn’t built for us.

What Makes Autism a Disability?

Disability is often misunderstood. The medical model defines disability as a condition that significantly impacts a person’s ability to function. Autism fits this model because it involves neurological differences that affect how we communicate, process sensory information, and navigate the world.

The social model of disability shifts the focus away from the individual and onto society. From this perspective, people are disabled not by their differences but by the barriers society creates—like rigid expectations, inaccessible environments, and a lack of understanding. Autism fits this model too. When systems are designed for neurotypical people, Autistic people are inevitably excluded and disadvantaged.

Both models have elements of truth, and both explain why autism is a disability within that paradigm. This doesn’t mean autism is inherently bad or that we are broken. It simply recognizes that the world wasn’t built for minds like ours, and that creates real, often life-altering challenges.

Are You Disabled?

While autism is always a disability, how we relate to it as Autistic individuals varies widely:

Some Autists proudly identify as Disabled, finding empowerment and community in the disability rights movement.

Others feel disabled by autism itself, especially when co-occurring conditions, sensory challenges, or communication difficulties make daily life a struggle.

Many feel disabled by society, not by their autism. In a supportive environment with accommodations, they might not feel disabled at all.

Some don’t identify as disabled or may even become offended if someone suggests they are disabled. 

These perspectives are all valid. Your relationship with autism and disability is yours to define. What matters is that we respect one another’s experiences and autonomy while recognizing the shared reality that autism is a disability.

Why Denying Autism as a Disability Is Dangerous

Here’s the problem: if we deny that autism is a disability, we risk losing the very systems that keep us alive.

Disability recognition isn’t just a label—it’s a lifeline. It’s what ensures access to healthcare, education, employment accommodations, and legal protections. If society decided autism wasn’t a disability, it could justify cutting off resources. Autistic people could be told to “buck up,” “fit in,” or “fly right”—and those of us who can’t would be left behind.

This is a matter of survival for many of us. Personally, I wouldn’t be here if autism weren’t recognized as a disability. And I know I’m not alone.

Autism as Disability and Diversity

Some worry that calling autism a disability erases the idea of neurodiversity. But that’s a false dichotomy. Neurodiversity and disability can coexist.

The neurodiversity movement challenges the idea that there’s only one “right” way to think, learn, and experience the world. It celebrates neurological differences, including autism, as natural variations of human diversity.

But recognizing autism as part of human diversity doesn’t mean it’s not a disability. It means that disability isn’t a bad thing. It’s simply a reality, and one that society needs to accommodate. By accepting autism as both a disability and a natural expression  of human diversity, we can advocate for a world that values us as we are while also meeting our needs.

The Power of Solidarity

Whether you proudly identify as Disabled, feel disabled only in certain contexts, or don’t see yourself as disabled at all, autism’s recognition as a disability protects all of us. It ensures we aren’t left to fight for scraps in a system designed for neurotypical people.

Disability isn’t something to be ashamed of. It’s a call for society to do better—for workplaces to be accessible, for schools to support all learners, and for governments to recognize and meet the needs of all its citizens.

Autism is a disability. But how you relate to it? That’s entirely up to you.

Aging and Autism: Insights from Recent Open-Access Research

an illustration of tree rings, symbolizing growth, age, and individuality

As an outsider academic, I often find myself locked out of the latest research behind paywalls. Sometimes I can access papers when I’m near a university library. Most of the time, I’m left with open access crumbs. (This is not fair. I pay taxes that fund universities. I’d argue that using public money to fund research and publication of research implies that the public should have access to the information we are paying for. (Also, I would be more willing to pay for access if the money flowed to the authors instead of in the other direction.))

I’ve been thinking a lot about aging and autism lately, so I pulled up what I could access on that first search phrase: four recent (published in the last four years) open-access papers exploring autistic aging. These papers highlight not just the challenges Autistic people face as we age but also the complexity and diversity of our experiences.

Here’s a summary of what I found. Collectively, they spoke to intersections of health, cognitive function, and social inclusion for Autistic adults.

(If you have access to articles on autism and aging, I would love to hear from you—I’ll gladly review them. This is an area of study I want to spend more time with.)

The Think Tank Paper: Strategies for Autism and Aging

The cornerstone paper of what I found today was a 2021 think tank report titled Strategies for Research, Practice, and Policy for Autism in Later Life. This paper offers a comprehensive roadmap for addressing the challenges Autistic people face as we age.

It emphasizes the importance of inclusion and collaboration, guided by the principle “Nothing about us without us.” The authors argue that aging outcomes are not solely determined by biology but shaped by systemic factors like access to healthcare, housing, and social support. They call for interdisciplinary approaches that focus on abilities rather than disabilities, situating autistic aging within a socio-ecological framework that considers the individual within their environment and community.

Key recommendations include:

• Developing tools to diagnose and study autism in older adults.

• Expanding housing and community support options tailored to autistic needs.

• Addressing the high rates of co-occurring medical and mental health challenges in autistic adults.

• Advocating for lifelong learning and employment opportunities.

This paper provides a hopeful and practical foundation for thinking about autism and aging. The think tank raised important questions for researchers to address.

What the Other Three Studies Reveal

Cognitive Decline: Stratified Insights

A longitudinal study on cognitive aging in autism, published in 2023, challenges some common assumptions, among them, the previously held belief that autism is universally a dementia risk factor. Among Autistic adults without intellectual disabilities, cognitive decline does not appear to accelerate compared to neurotypical peers.

This is an important finding: it reminds us that autism manifests in diverse presentations. Some Autistic people may show resilience in cognitive function, while others—especially those with intellectual disabilities or co-occurring conditions—face greater risks, as also highlighted in the think tank paper.

Inclusive research needs to balance these perspectives. By understanding where accelerated decline occurs and where it doesn’t, we can target interventions appropriately. For Autistic adults without intellectual disabilities, the focus might shift to other issues, like social isolation or physical health, while not neglecting any Autists who do experience cognitive challenges.

Motor and Neurological Trajectories After 40

Aging with Autism Departs Greatly from Typical Aging, a 2020 paper, which analyzed involuntary motor variability using fMRI data, revealed something striking: Autistic aging diverges sharply from neurotypical aging, particularly after age 40.

Autistic adults show unique motor and neurological patterns that suggest a fundamental shift in how our nervous systems age. While these changes don’t necessarily indicate cognitive decline, they might translate into everyday challenges like clumsiness, fatigue, or increased sensitivity to sensory inputs.

This study highlights the need for tailored physical and occupational therapies to support motor function and adaptability in midlife and beyond. It also underscores how important it is to consider biological aging alongside social and systemic factors, as the think tank paper advocates.

Systemic Barriers and Social Isolation

The first of the four papers I read was Aging Well and Autism: A Narrative Review and Recommendations for Future Research (published in 2024). It paints a stark picture of the systemic challenges Autistic people face as we age:

• High rates of loneliness and social isolation.

• Limited access to tailored healthcare and mental health services.

• Persistent disparities in quality of life, with little improvement over time.

These findings align with the think tank’s call for better community-based solutions. Housing models like intergenerational living or microboards, for example, could address social isolation while respecting the independence of Autistic adults. Similarly, expanding access to mental health services tailored to Autistic needs could dramatically improve outcomes.

The Bigger Picture

Taken together, these studies reveal the complexity of aging in autism. On the one hand, we see encouraging findings, like the absence of accelerated cognitive decline in some subgroups. On the other, we face sobering realities, like the heightened risks of loneliness, health challenges, and systemic neglect.

To address these issues, we need both broad, inclusive research and stratified studies that identify the unique needs of different subpopulations. Autistic aging isn’t a monolith, and our approaches to support and policy shouldn’t be either.

Conclusion

Autistic people deserve to age with dignity, support, and understanding. The research I’ve reviewed here offers valuable insights and highlights how much work remains to be done. Let’s continue the conversation—whether by sharing studies, advocating for inclusive policies, or simply listening to Autistic voices telling our own stories of aging.

If you know of studies on autism and aging please send them my way. Together, we can discuss these findings and push for a better future for ALL Autistic adults.

Works Cited

Edelson SM, Nicholas DB, Stoddart KP, Bauman MB, Mawlam L, Lawson WB, Jose C, Morris R, Wright SD. Strategies for Research, Practice, and Policy for Autism in Later Life: A Report from a Think Tank on Aging and Autism. J Autism Dev Disord. 2021 Jan;51(1):382-390. doi: 10.1007/s10803-020-04514-3. PMID: 32361792; PMCID: PMC7195819.

Klein CB, Klinger LG. Aging Well and Autism: A Narrative Review and Recommendations for Future Research. Healthcare (Basel). 2024 Jun 17;12(12):1207. doi: 10.3390/healthcare12121207. PMID: 38921321; PMCID: PMC11203987.

Torenvliet C, Groenman AP, Radhoe TA, Agelink van Rentergem JA, Van der Putten WJ, Geurts HM. A longitudinal study on cognitive aging in autism. Psychiatry Res. 2023 Mar;321:115063. doi: 10.1016/j.psychres.2023.115063. Epub 2023 Jan 18. PMID: 36709700.

Torres EB, Caballero C, Mistry S. Aging with Autism Departs Greatly from Typical Aging. Sensors (Basel). 2020 Jan 20;20(2):572. doi: 10.3390/s20020572. PMID: 31968701; PMCID: PMC7014496.

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