Who Designs the System Matters: The Case for Autistic-Led Governance
Bridgette Hamstead
Debates about neurodiversity often stall at representation. Is there an autistic person on the panel? On the advisory board? In the room? These questions matter, but they are not sufficient. The deeper question is who holds decision-making power over the systems that shape autistic lives. Who sets priorities? Who defines success? Who decides what counts as harm and what counts as acceptable collateral damage? Governance, not visibility, determines outcomes. And the evidence is clear that when autistic people are excluded from governance, systems predictably reproduce harm.
This is not a diversity argument. It is a quality and ethics argument.
Across education, employment, healthcare, and research, autistic adults experience worse outcomes despite decades of awareness initiatives and accommodation policies. Unemployment and underemployment remain extraordinarily high. Burnout, medical trauma, and suicidality remain elevated. Preventable health conditions go untreated at disproportionate rates. These outcomes persist even in institutions that claim to value inclusion. When harm persists at scale, the problem is not attitude. It is design. And design is shaped by who has authority.
Research in disability studies and organizational governance consistently shows that systems designed without the leadership of those most affected tend to misidentify problems and misallocate solutions. The social model of disability established that disability is produced through interaction with inaccessible environments, not located solely in bodies or minds. Disability justice extended this analysis by insisting on leadership by disabled people themselves, particularly those most marginalized. Neurodiversity justice builds on this lineage by applying it specifically to cognitive, sensory, and communicative difference under modern institutional conditions. The principle is straightforward. Those who live with the consequences of design decisions are uniquely positioned to identify where harm is produced and how it can be prevented.
Autistic-led governance is therefore not about symbolic inclusion. It is about epistemic accuracy.
Autistic people possess forms of knowledge that are systematically undervalued in traditional governance structures. Lived experience of sensory overload, communication mismatch, masking demands, and institutional punishment produces data that rarely appears in metrics dashboards or policy briefs. Yet studies consistently show that autistic distress correlates most strongly with environmental conditions rather than with autistic traits themselves. In large surveys, autistic adults overwhelmingly identify social and environmental barriers as the primary determinants of well-being, not intrinsic neurology (Milton & Sims, 2016). When governance excludes autistic voices, it excludes this data, and systems continue to target the wrong problems.
The ethical stakes are high. Decisions made without autistic leadership often prioritize institutional convenience over autistic safety. Schools adopt behavioral compliance models that suppress distress rather than addressing sensory harm. Workplaces maintain productivity metrics that reward visibility and endurance rather than sustainable output. Healthcare systems standardize rushed appointments and sensory-hostile environments, then pathologize autistic avoidance as noncompliance. These practices are not neutral. They reflect values about efficiency, control, and normalcy that disadvantage autistic people by design. Ethical governance requires examining whose values are embedded in systems and whose costs are ignored.
Participatory design research provides strong evidence that leadership by affected communities improves outcomes. Across fields, participatory and community-based models are associated with higher effectiveness, greater satisfaction, and increased sustainability of interventions. In disability contexts, disabled-led organizations are more likely to prioritize autonomy, consent, and access, and less likely to default to coercive or paternalistic practices. In healthcare, patient-partnered and community-led models have been shown to improve trust, adherence, and health outcomes, particularly among marginalized populations. The same principles apply to autistic communities. When autistic people lead, systems are more likely to address root causes rather than symptoms.
Autistic-led governance also corrects a persistent misinterpretation of competence. Traditional governance structures often equate leadership with specific communication styles, social performance, and tolerance for sensory overload. These norms systematically exclude autistic people from decision-making roles while simultaneously claiming that autistic needs are too complex or impractical to accommodate. This is a circular logic. Governance structures define competence in ways that exclude autistic leaders, then use that exclusion to justify decisions made without autistic insight. Justice-aligned governance challenges this equation by recognizing that leadership competence is contextual and relational, not a function of neurotypical performance.
The quality argument becomes even clearer when examining failure patterns. Autistic burnout offers a stark example. Burnout is consistently linked to prolonged exposure to environments that require sustained masking, tolerate sensory overload, and deny control over pace and workload. It is not associated with autism severity or lack of effort. Burnout is evidence of systemic misdesign. Yet burnout prevention is rarely addressed at the governance level. Instead, institutions respond with individual coping resources after collapse. This reactive posture persists because governance bodies are often insulated from the consequences of their decisions. Autistic-led governance reintroduces feedback loops that force systems to confront the outcomes they produce.
There is also an economic case for autistic leadership. Organizational research shows that high turnover, disengagement, and burnout carry substantial financial costs. Workplaces that fail to retain neurodivergent employees lose institutional knowledge and incur repeated recruitment and training expenses. Schools that exclude autistic students face downstream costs related to disengagement, mental health crises, and reduced life opportunities. Healthcare systems that alienate autistic patients experience higher emergency utilization and worse long-term outcomes. Autistic-led governance is not a luxury. It is a corrective to inefficiency rooted in misdesign.
Importantly, autistic-led governance does not mean autistic-only governance. Justice does not require segregation. It requires power sharing. Participatory governance models emphasize collaboration between affected communities and institutional actors, with clear mechanisms for accountability. Autistic leadership ensures that decision-making is informed by lived experience, while interdisciplinary collaboration ensures feasibility and scalability. The key distinction is who holds veto power over decisions that produce harm. Justice requires that autistic people have real authority, not merely consultative roles.
This distinction matters because tokenism is common. Advisory boards with no decision-making power. Listening sessions with no structural follow-through. Committees that solicit autistic input and then proceed unchanged. Research on organizational change shows that such gestures often increase cynicism and distrust rather than improving outcomes. Ethical governance requires binding commitments, transparent accountability, and measurable shifts in power. Autistic-led governance insists on these conditions.
The argument for autistic leadership is also an argument against professional gatekeeping. Diagnostic authority, academic credentials, and managerial status are often treated as prerequisites for legitimacy. Yet research documents significant bias in diagnostic systems, particularly for autistic women, gender-diverse people, and people of color, who are diagnosed later or misdiagnosed entirely. Tying governance eligibility to professional recognition replicates these inequities. Neurodiversity justice recognizes self-knowledge and peer knowledge as valid forms of expertise, especially in systems with documented bias. Ethical governance broadens, rather than narrows, the definition of who counts as an expert.
Autistic-led governance further aligns with public health principles. Health equity frameworks emphasize that interventions are most effective when designed with, not for, affected populations. Top-down solutions routinely fail to address lived realities, particularly when power differentials are large. Autistic people navigating schools, workplaces, and healthcare systems possess granular knowledge about where harm occurs and how it accumulates over time. Excluding that knowledge is not just disrespectful. It is scientifically unsound.
The resistance to autistic-led governance is therefore revealing. Structural critiques are disruptive. They challenge professional authority, institutional comfort, and established hierarchies. They force a reckoning with the fact that many systems function as designed, even when those designs produce harm. Inviting autistic people into governance roles threatens the fiction that harm is accidental or inevitable. It makes accountability unavoidable.
Framing autistic leadership as a diversity gesture misses the point entirely. Diversity initiatives often focus on representation without altering decision-making structures. They aim to change who is present, not who decides. Justice-aligned governance changes both. It recognizes that inclusion without power redistribution leaves harmful systems intact. Autistic-led governance is therefore a structural intervention, not a cultural one.
The ethical case is ultimately simple. Systems that shape people’s lives should be accountable to those people. When autistic people are excluded from governance, systems make decisions about autistic lives without autistic consent. That is an ethical failure. When autistic people lead, systems are more likely to prioritize access, autonomy, and sustainability over compliance and convenience. That is not activism. It is good governance.
Neurodiversity justice insists that who designs the system matters. Not because autistic people are morally superior or uniquely virtuous, but because design without lived experience produces predictable harm. The evidence is already in. The question is whether institutions are willing to act on it.
Autistic-led governance is not the end of the work. It is the beginning of doing it honestly.
Reflection Questions
Where in the systems you participate in do autistic people appear as “represented” but not empowered to make binding decisions?
Who currently defines success, efficiency, and competence in your organization, and whose ways of thinking and communicating are implicitly excluded by those definitions?
When autistic people raise concerns about harm, how is that information treated, as data to be acted on, or as feedback to be managed?
Which decisions that most affect autistic people are made without autistic people present in governance or leadership roles?
What forms of expertise are considered legitimate in your system, and which are dismissed or ignored? How does this shape whose knowledge influences design?
Where are autistic people asked to adapt to existing structures rather than those structures being redesigned in response to autistic needs?
How does your organization distinguish between consultation and shared power? Where does autistic input stop influencing outcomes?
What harms in your system are treated as unfortunate side effects rather than as evidence of design failure? Who bears the cost of those harms?
If autistic burnout, attrition, or disengagement are recurring outcomes, how are those outcomes interpreted, as individual limitations or as institutional signals?
What would change if autistic people held veto power over policies, practices, or environments that consistently produce harm?
How are leadership roles structured in ways that privilege certain communication styles, sensory tolerances, or social performances? Who does this exclude?
Where does professional gatekeeping limit autistic participation in governance, particularly for late-identified autistic people and those without formal credentials?
What accountability mechanisms exist to ensure that autistic-led recommendations result in structural change rather than symbolic acknowledgment?
How might participatory governance improve not only ethical outcomes, but quality, effectiveness, and sustainability in your system?
What risks feel most threatening about redistributing decision-making power to autistic people, and what does that fear reveal about existing hierarchies?
If justice, rather than inclusion, were the guiding principle of your organization, what governance structures would need to change first?