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
- 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
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