What Happens When Neurodivergent People Set the Research Agenda?

Bridgette Hamstead

For most of modern history, neurodivergent people have been treated as the subjects of research, not the authors of its purpose. Research has been something done to us, about us, and often in spite of us. The public story is that this is simply how science works: experts identify questions, funders decide priorities, institutions produce knowledge, and communities eventually benefit. But in neurodivergence research, that “eventually” has too often meant never, and “benefit” has too often meant benefit to systems that manage neurodivergent people rather than neurodivergent people ourselves.

When neurodivergent people set the research agenda, the center of gravity moves. The field does not just become kinder or more inclusive. It becomes different. Different questions rise to the top. Different outcomes count as success. Different harms become legible. Different ethics become non-negotiable. And perhaps most importantly, different kinds of expertise become authoritative.

This shift is not cosmetic. It changes what research is for.

The old agenda has been shaped by an institutional imagination that treats neurodivergence as a problem to be solved, minimized, normalized, or prevented. Even when the language is polite, the underlying orientation is often the same. We see this in what gets funded, what gets prestige, what becomes a career-making publication, what is considered “rigorous,” and what is dismissed as merely anecdotal. For decades, there has been a profound mismatch between what institutions prioritize and what neurodivergent people say they actually need.

Neurodivergent-led agenda-setting makes that mismatch impossible to ignore, because it brings a simple question into the foreground: who is research accountable to.

This is where neurodiversity justice becomes a research framework rather than a slogan. Neurodiversity justice is not satisfied with “including voices” while power remains unchanged. It is concerned with material outcomes, structural harm, and the distribution of authority. It asks whether research is reducing preventable suffering in real lives or simply generating knowledge that circulates within professional ecosystems.

When neurodivergent people set the agenda, research pivots away from abstract fascination and toward usable knowledge. It asks what makes life better and what makes life worse. It asks how systems injure people, how to reduce that injury, and what supports actually work across the lifespan. It asks what outcomes matter to neurodivergent adults rather than what outcomes are easiest for institutions to measure.

In other words, the agenda becomes structural.

That structural turn has immediate consequences. It changes study design. It changes recruitment. It changes what accessibility means. It changes timelines. It changes dissemination. Knowledge is no longer assumed to belong primarily in paywalled journals written for insiders. It is expected to circulate back to the people whose lives it affects.

When neurodivergent people shape the agenda, accessibility stops being a courtesy and becomes part of validity. Research methods that exclude the very people they claim to represent are no longer treated as neutral. Surveys that overload executive function, interviews that privilege rapid verbal processing, environments that are sensory-hostile, consent processes written in dense professional language, and outcome measures that capture outsider perception rather than lived experience all come under scrutiny. The question shifts from “is this standard” to “who does this exclude.”

Neurodivergent agenda-setting also changes how harm is defined.

Institution-led research often defines harm narrowly, focusing on acute adverse events or measurable symptom change. Neurodivergent communities name harms that accumulate slowly and are often ignored: chronic masking, loss of self-trust, learned compliance, epistemic gaslighting, institutional betrayal, and the long-term toll of navigating environments not built for us. These harms are not incidental. They shape mental health, employment stability, relationships, and life expectancy. When neurodivergent people set the agenda, these harms become legitimate objects of study rather than inconvenient side effects.

This shift reshapes what outcomes are prioritized.

Under institution-first agendas, outcomes often reward conformity. Functioning is defined by productivity, independence is defined narrowly, and success is measured by how closely someone approximates normative behavior. Under neurodivergent-led agendas, outcomes shift toward quality of life, autonomy, sensory safety, sustainable participation, meaningful connection, and mental health. The question becomes not “can you comply” but “can you live.”

This reframing exposes a political truth about research funding. If you measure the wrong outcomes, you can declare success while people’s lives deteriorate. For years, vast resources have gone toward explaining neurodivergence while comparatively little has gone toward improving daily conditions. Neurodivergent agenda-setting challenges the prestige hierarchy that treats practical, life-improving research as secondary.

The benefits of this shift are not only ethical. They are scientific.

Research that is disconnected from lived reality consistently fails to translate into meaningful change. When neurodivergent people set the agenda, the gap between research and life narrows. Studies become more relevant, more feasible, and more likely to be implemented, because they are designed with real constraints in mind. Knowledge that cannot reduce harm is not neutral. It reflects a choice about whose interests matter.

Agenda-setting also transforms how expertise is understood.

In institution-first models, neurodivergent people are often treated as biased narrators of their own lives. Their accounts are framed as subjective, emotional, or contaminated by advocacy. Meanwhile, professional perspectives are treated as objective, even when they are shaped by career incentives, funding structures, and cultural assumptions. Neurodivergent-led agendas invert this hierarchy. They recognize lived experience as a domain of expertise that cannot be substituted or overridden without loss of accuracy.

This is why agenda-setting is fundamentally different from consultation.

Consultation asks people to respond to questions already chosen. Agenda-setting determines what questions are asked in the first place. It shapes funding calls, methodologies, and definitions of success. The difference is the difference between feedback and governance.

As neurodivergent agenda-setting gains visibility, institutions often respond with participatory language. Advisory boards are formed. Community collaborators are invited. These shifts can be meaningful, but they also reveal tensions. Participation is welcomed until it threatens existing priorities. Input is valued until it challenges normalization, control, or profit. Without shared authority, participatory language risks becoming performative.

One of the clearest indicators of whether agenda-setting is real is compensation. When neurodivergent people are invited to contribute without pay, their expertise is treated as decorative rather than substantive. When they are paid, credited, and given real decision-making power, institutions acknowledge that lived knowledge is labor.

Neurodivergent-led agendas also change the emotional tone of research.

Much traditional research operates in a deficit mood, oriented around what is wrong and what must be fixed. Neurodivergent agenda-setting tends to replace this with a harm-reduction orientation. The questions become pragmatic and humane. Where is pain coming from. What reduces it. What environments disable. What supports sustain life over time. This aligns with the social model of disability because it treats disability as an interaction between people and conditions rather than as an internal defect.

This shift also legitimizes topics that institutions long dismissed as unserious or anecdotal. Neurodivergent communities have repeatedly identified emergent harms years before they were recognized by formal research. Burnout, late diagnosis, healthcare trauma, and adult collapse were lived realities long before they became respectable study topics. When neurodivergent people set the agenda, research becomes more responsive to real-time need rather than lagging behind it.

This matters across the lifespan.

For decades, neurodivergence research has centered children while neglecting adulthood, aging, menopause, employment sustainability, long-term health, and late identification. When neurodivergent adults set the agenda, adulthood is no longer treated as an afterthought. The focus expands to include what happens when supports disappear, demands intensify, and masking becomes unsustainable.

Neurodivergent agenda-setting also makes intersectionality unavoidable.

Race, gender, sexuality, class, and disability intersect in lived experience, even when institutions treat them as separate domains. Neurodivergent-led agendas ask how diagnostic access differs by race and gender, how policing and discipline shape outcomes, how poverty constrains support, how trans and queer neurodivergent people are treated in medical systems, and how research itself reproduces exclusion through narrow sampling. This does not complicate the science. It corrects it.

So what happens when neurodivergent people set the research agenda?

Research becomes less focused on explaining neurodivergence as a problem and more focused on reducing preventable suffering. It becomes less invested in normalization and more invested in accessibility. It becomes less concerned with institutional convenience and more accountable to lived reality. It becomes less tolerant of interventions that produce compliance at the cost of trauma. It becomes more explicit about which outcomes actually matter.

It also becomes harder for institutions to hide behind calls for more research as a way to delay action. When the agenda is set by people living the harm, timelines change. Some questions require long-term study. Many reforms do not. They require redesign, funding shifts, and political will.

Neurodivergent agenda-setting makes something else clear: research is not just knowledge production. It is governance.

The agenda determines whose lives matter, which harms count, which futures are imaginable, and who gets to define success. For decades, neurodivergent people have been forced to live inside futures imagined without us. Setting the research agenda is one way we begin to reclaim authorship over what comes next.

Reclaiming authorship, however, is not a symbolic act. It is a material one. When neurodivergent people set the research agenda, they are not merely offering alternative topics. They are asserting a different relationship between knowledge and power. They are insisting that research be accountable to those who bear its consequences.

This insistence reveals something uncomfortable for many institutions: that research has always been a political activity, even when it claimed neutrality. Decisions about what is worth studying, which questions are fundable, and which outcomes are meaningful have never been value-free. They reflect assumptions about productivity, normalcy, risk, and social worth. When neurodivergent people step into agenda-setting roles, those assumptions become visible because they are no longer shared by default.

One of the first tensions that emerges is between speed and control. Institution-led research often moves slowly, bound by funding cycles, ethical review processes that were not designed with neurodivergent access in mind, and professional incentives that reward caution over responsiveness. Neurodivergent communities, by contrast, often need answers urgently. People are burning out now. People are being harmed now. Supports are disappearing now. When neurodivergent people set the agenda, timelines shorten not because rigor is abandoned, but because delay itself is recognized as a form of harm.

This does not mean that every question can or should be answered immediately. It means that the burden of justification shifts. Instead of communities having to prove that their needs are worthy of study, institutions are asked to justify why certain harms can continue unaddressed for decades. That reversal is profound. It reframes patience as a privilege rather than a virtue.

Another tension arises around risk. Traditional research ethics often frame risk narrowly, focusing on immediate physical or psychological harm within the study itself. Neurodivergent agenda-setting broadens this frame. It asks about the risks of not studying certain questions. The risk of continued misdiagnosis. The risk of untreated burnout. The risk of coercive practices going unchallenged. The risk of designing technologies, workplaces, and policies that quietly exclude. When neurodivergent people set the agenda, inaction becomes ethically visible.

This expanded understanding of risk also changes how consent is approached. Consent is no longer treated as a one-time formality but as an ongoing relationship. Neurodivergent-led research agendas tend to emphasize transparency, iterative feedback, and the right to withdraw not just from participation, but from interpretations that feel misaligned or harmful. Consent becomes relational rather than procedural. This challenges institutions that are accustomed to treating consent as a box to be checked rather than a trust to be maintained.

Agenda-setting by neurodivergent people also reshapes dissemination, which is often overlooked as a site of power. In institution-first models, dissemination is aimed at peers, funders, and policymakers, with communities treated as secondary audiences or recipients of simplified summaries. Neurodivergent-led agendas invert this priority. Research findings are expected to return to the community in accessible, usable forms. This is not about outreach as charity. It is about accountability. Knowledge that does not circulate back to those it concerns is incomplete.

This shift has implications for language itself. When neurodivergent people shape the agenda, they also shape how findings are framed. Pathologizing language is interrogated. Deficit-based interpretations are questioned. Ambiguity is allowed where certainty would misrepresent lived reality. This does not weaken science. It strengthens it by reducing the distortion introduced by ideological commitments to normalcy and control.

The impact of agenda-setting is especially clear when we look at intervention research. Institution-led agendas have historically favored interventions that are scalable, measurable, and aligned with existing service structures, even when those interventions produce harm or fail to address underlying needs. Neurodivergent-led agendas tend to prioritize interventions that are context-sensitive, voluntary, and responsive to individual variability. They ask not only whether an intervention changes behavior, but whether it improves life.

This reorientation exposes how often interventions have been evaluated without meaningful input from those subjected to them. It also exposes how rarely long-term outcomes are considered. An intervention that produces short-term compliance but long-term trauma looks successful only if trauma is not measured. When neurodivergent people set the agenda, those omissions are no longer acceptable.

Agenda-setting also affects who gets to be a researcher. Traditional pathways into research are narrow and exclusionary, favoring those who can tolerate high levels of bureaucracy, sensory overload, and unspoken social expectations. Neurodivergent-led agendas often include explicit commitments to expanding who is able to participate as a researcher, not just as a subject. This means rethinking hiring practices, training models, mentorship, and evaluation criteria. It means recognizing that some of the most insightful research questions come from people who have been pushed out of academia rather than welcomed into it.

This expansion of who counts as a researcher further destabilizes the myth that objectivity requires distance. Neurodivergent agenda-setting challenges the idea that proximity to a topic inherently compromises rigor. Instead, it highlights how distance has often produced blind spots. Lived experience does not eliminate bias. It makes certain biases visible. When combined with methodological care, it can produce more nuanced and accurate work.

There is also a cultural shift that accompanies neurodivergent agenda-setting. Research spaces begin to change in tone. Meetings become more accessible. Communication becomes clearer. Assumptions are questioned rather than enforced. These changes are often framed as accommodations, but they are better understood as improvements. They benefit not only neurodivergent participants, but anyone who has been marginalized by opaque norms and unexamined power.

At the same time, it is important to be honest about resistance. Neurodivergent agenda-setting is often met with skepticism, defensiveness, or quiet obstruction. Institutions may express support while limiting scope. They may invite participation without relinquishing decision-making authority. They may frame community priorities as unrealistic or “advocacy-driven.” These responses reveal how deeply invested many systems are in maintaining control over what counts as legitimate knowledge.

This resistance is not surprising. Agenda-setting determines funding flows, career trajectories, and institutional reputations. Shifting it threatens established hierarchies. Neurodivergent people who insist on setting the agenda are not simply asking to be heard. They are asking for redistribution of power. That demand will always be contested.

Yet the pressure for change continues to grow, not only from neurodivergent communities, but from the failures of the existing model. Despite decades of research, many neurodivergent adults report worsening outcomes in mental health, employment stability, and access to care. This gap between knowledge production and lived improvement is not an accident. It is the predictable result of agendas that were never aligned with community need.

Neurodivergent agenda-setting offers a different path. It does not promise easy answers or universal solutions. It promises relevance. It promises accountability. It promises that research will be judged not only by its citations, but by its capacity to reduce harm and support flourishing.

Ultimately, what happens when neurodivergent people set the research agenda is that research becomes answerable to life. It becomes grounded in the realities of navigating systems that were not built for us. It becomes attuned to the costs of compliance and the value of autonomy. It becomes less interested in controlling difference and more interested in understanding it.

This is not the end of science. It is its maturation.

A field that cannot tolerate those most affected by its work setting its priorities is not objective. It is insulated. Neurodivergent agenda-setting punctures that insulation. It insists that knowledge be co-created, that authority be shared, and that the futures imagined by research include the people who must live in them.