05/21/2026
We are proudly neurodivergent led at Neuro-Collective. Our leadership has lived (first-hand) and parenting experience in autism, adhd, sensory processing challenges, learning disabilities, trauma, giftedness, burnout, anxiety, depression, and more. Welcome to the community. As a collective, your voice matters. Tell us how we can best support neurodivergent families in Niagara.
I made this ladder as a framework for analyzing the distribution of power in any space that claims to serve, study, or support neurodivergent people.
Each rung represents a different configuration of who actually holds decision-making authority, and the vertical axis is essentially a measure of how meaningfully neurodivergent people can shape outcomes that affect their own lives.
It's adapted from Sherry Arnstein's 1969 Ladder of Citizen Participation, which she developed to critique how government agencies were handling community input during the urban renewal and War on Poverty era. Her core argument was that "participation" had become a word that obscured more than it revealed, because agencies were using it to describe everything from genuine community control to performative consultation that changed nothing. The ladder was her tool for forcing precision: if you tell me your program involves community participation, I should be able to ask which rung and get a real answer.
That same critique transfers almost perfectly to neurodiversity spaces, where "including autistic voices" or "centering neurodivergent perspectives" has become language so common that it now describes a huge range of practices, some of which are meaningful and some of which are functionally indistinguishable from exclusion.
The three sections of the ladder map onto three fundamentally different relationships between institutions and the communities they affect.
Non-participation is the bottom section, and what unifies these rungs is that the institution is not actually trying to share power, even when it looks like it might be. Manipulation is the most cynical version: neurodivergent people are recruited into advisory roles, testimonial slots, or community panels specifically so the institution can claim community endorsement for decisions that were made before the community was ever involved.
Educating sits just above it and is more insidious because it often presents as care. The underlying assumption is that the neurodivergent person is the problem to be solved (through behavioral training, social skills instruction, normalization protocols) and that participation will be possible only after they've been sufficiently shaped to fit existing structures.
Informing is the least harmful of the three but still belongs in non-participation because the communication flows one direction. Decisions get announced, sometimes with great care and clear language, but there's no actual mechanism for the community to redirect them.
Tokenism is the middle section, and the defining feature is that neurodivergent presence is real but structurally disempowered. This is where most well-intentioned organizations live, and it's the most dangerous section in some ways because it's the easiest to mistake for genuine inclusion.
Consultation gathers input but doesn't structurally bind decision-makers to it. Surveys get run, focus groups get held, the data gets cited in the introduction of the white paper, and then the recommendations get written by the same people who would have written them anyway.
Placation goes one rung up by actually seating neurodivergent people in formal advisory or governance roles, but it preserves the underlying authority structure. The board still votes. The clinical director still has final say. The autistic advisor's dissent gets recorded in the minutes and the decision goes the other way. What makes tokenism distinctive is that the visibility of neurodivergent participation is precisely what makes it useful to the institution. The presence is the product, not the input.
Neurodivergent-led is the top section, and the shift is from neurodivergent people being consulted about institutional work to neurodivergent people directing institutional work.
Partnership is where decision-making is genuinely shared, with neurodivergent stakeholders holding enough structural authority that their disagreement can stop or redirect a decision.
Shared Power is where that authority becomes weighted toward neurodivergent voices on neurodivergent matters, recognizing that lived experience and community knowledge are forms of expertise that should carry more weight than external credentialing on questions about neurodivergent lives.
Neurodivergent Leadership at the top is the point where the question of "who gets to decide" has been answered structurally rather than rhetorically. Neurodivergent people lead the organizations, set the research agendas, design the curricula, train the professionals, write the policy, and hold the institutional power to make those choices stick.
What the ladder ultimately does is expose the gap between rhetoric and structure.
Almost every organization in the neurodiversity field today uses language consistent with the top of the ladder ("we center autistic voices," "nothing about us without us," "lived experience informs our work") while operating on rungs much closer to the bottom. The ladder doesn't resolve that gap, but it does make it visible and discussable, which matters because you can't fix a problem you don't have language for. It also reframes the central question of the field. The question stops being "are neurodivergent voices included" (which is yes/no and easy to answer cheaply) and becomes "how is power distributed in this space" (which is structural and much harder to fake). That reframe is the whole point.
But keep in mind, the ladder is descriptive, not prescriptive about pace. It's not saying every organization needs to jump from rung 2 to rung 8 overnight. What it is asking for is honest self-assessment. Looking at where you actually are, not where your mission statement says you are. Acknowledging that if you're sitting in the lower rungs, you have real room to grow, and committing to doing the structural work of redistributing power so that growth actually happens. The ladder gives you the vocabulary to be honest about your starting point, and the framework to be accountable for what comes next.
