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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.

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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.

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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).

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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

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.

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

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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

A 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.

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. 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.

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.

For the past three years, I’ve had the privilege of serving on the board of the Autism National Committee (AutCom). I’m deeply grateful for this opportunity to work with an organization whose mission of “Social Justice for All Autistics” resonates so strongly with my own values. AutCom’s focus on social justice for all Autistic people—promoting inclusion, self-determination, and respect—has both guided my work and inspired me.

Social justice, to me, is about more than just equity. It’s about recognizing and centering the voices of those who are most often overlooked: Non-speaking Autists, Autistic people of color, Autists living in poverty, Autists with multiple disabilities, and so many other Autistic people with intersected life experiences.

At the same time, social justice calls us to embrace everyone, rejecting gatekeeping and division. AutCom embodies this nuance beautifully, balancing a commitment to all Autistic people while ensuring that marginalized voices are heard, respected, and centered. Centering doesn’t mean one person’s voice is more important than another’s, just that we value a culture where no Autist is left out.

During my time on the board, I have been continually inspired by the work AutCom does to educate and advocate for our community. The organization’s webinars and newsletters are excellent tools for fostering understanding and inclusion, with diverse panels that represent a wide range of lived experiences. These efforts were already underway when I joined, and it’s been an honor to support and contribute to this vital work.

As a board member, I’ve felt heard and valued. Leadership and my fellow board members have welcomed my ideas and contributions and I’ve received positive feedback about my work. I’m especially grateful for the opportunity to work alongside such like-minded individuals, whose passion for social justice and commitment to the Autistic community have enriched my life in so many ways.

Looking to the future, I hope to see AutCom strengthen our partnerships with other organizations and explore new ways to support the community. One idea I’d love to help create is curating a collection of helpful toolkits and resources from sources that also embrace autistic autonomy and dignity. Not only could we share the collection of tools, we could identify gaps in available resources, potentially developing our own toolkit to address unmet needs. By continuing to listen to the larger community and collaborate with others, I believe we can deepen our impact and remain potent in advancing social justice for Autistic people.

Serving on the board of AutCom has been a deeply fulfilling experience. It’s given me the chance to be part of meaningful work that reflects my personal values, and to build connections with incredible people who share the same vision. I’m grateful for the opportunity to help move the needle toward greater inclusion, respect, and justice for all Autistic people—and I look forward to what the future holds.

Please take a look at today’s AutCom! See if our resources resonate with you, consider joining us if you haven’t already, donate if you have the resources and want to help us create more for the community. Thank you.