Agency & Self-Determination

Agency and self-determination describe the right and capacity of neurodivergent people to actively shape their own lives rather than having those lives shaped for them. This includes making informed choices about accommodations, defining personal boundaries, controlling disclosure of neurodivergent identity, selecting communication methods, and determining how one’s neurodivergence is understood and supported by others.

The concept has two sides that cannot be separated. Agency requires internal capacity: access to information, a developed sense of one’s own needs, and the cognitive and practical resources to act. It also requires external conditions: other people and institutions that actually respect autonomy rather than simply claiming to. Both have to be present. Internal capacity without external respect produces the experience of knowing what you need and being overruled anyway. External permission without internal capacity produces choices made in conditions that preclude genuine choice.

Self-determination theory, developed by Ryan and Deci (2017), identifies autonomy as one of three basic psychological needs alongside competence and relatedness. The research base is extensive and consistent: when people experience their choices as self-directed rather than externally controlled, wellbeing and motivation increase. Neurodivergent people face particular barriers to this. Compliance-based interventions, paternalistic support structures, and environments designed without their input create conditions where genuine self-determination is difficult to exercise even when formally permitted.

Key Aspects

Agency in a neurodivergent context covers ground that tends to be overlooked in generic discussions of autonomy.

Choice over accommodations and support. The right to determine which accommodations actually work is not a technicality. Many neurodivergent people have experienced accommodations imposed on them, or denied to them, based on what clinicians or educators assumed rather than what the person reported needing. Real agency here means that the neurodivergent person’s account of their own experience takes precedence in decisions about their own support.

Control over masking and disclosure. Deciding when, whether, and to whom to disclose neurodivergent identity is a significant and often high-stakes decision. So is choosing how much to mask in a given context. These decisions belong to the neurodivergent person, not to the institution or to the people around them. External pressure to unmask prematurely, or to disclose in contexts where it creates risk, undermines agency in ways that may not register as coercion but function as it.

Authority over communication and interaction. Preferred communication methods, interaction styles, and social participation modes vary significantly among neurodivergent people. Agency requires that those preferences be treated as valid choices, not deficits to be corrected. A person who communicates best in writing is not failing at communication. They are communicating.

The right to refuse. This is the part that gets the least attention. Neurodivergent people have the right to refuse interventions, treatments, and support strategies they have not consented to, including those framed as beneficial. ASAN’s (2020) framework for supported decision-making centers this explicitly: support for decision-making is not the same as making decisions on someone’s behalf.

In Their Own Words

For a long time, other people decided what my needs were. Which accommodations I got. Whether my sensory environment was ‘really’ a problem. What progress was supposed to look like. Getting actual agency over those things didn’t happen all at once. But the first time I said ‘this accommodation isn’t working, I need something different’ and was listened to — that was different from anything before it. — Autistic self-advocate, 33 ‡

I spent years being offered choices that weren’t really choices. ‘You can participate in this way or this way.’ Both options were neurotypical. Real self-determination means I get to name the third option, or say that neither works, and have that taken seriously. It still doesn’t always happen. But knowing it’s possible changes how I move through the world. — AuDHD adult, 41 ‡

In Everyday Life

Agency shows up, or fails to show up, in specific moments:

• A neurodivergent student reviews their accommodation plan with a disability coordinator and requests changes based on what has and has not worked, rather than receiving a standardized package with no input

• An Autistic employee declines a team-building event without being required to explain or justify the decision

• An ADHD adult tells their prescribing doctor that a medication’s side effects are not acceptable and asks to discuss alternatives, and the doctor engages with this as a collaboration rather than non-compliance

• A neurodivergent person stops mid-conversation to ask for the question in writing, and this is treated as a communication preference rather than a problem

• A neurodivergent parent designs household routines around their own sensory and executive function needs rather than defaulting to neurotypical parenting models, and this is not read by others as failure

These are not exceptional situations. They are ordinary moments where agency is either respected or it is not.

Why This Matters

Neurodivergent people have a long history of having decisions about their lives made without them, or over their explicit objections. This is not ancient history. It shows up in contemporary educational planning meetings, clinical consultations, and family dynamics. ASAN’s (2020) framing of “nothing about us without us” addresses exactly this: not as a preference, but as a rights principle.

The consequences of denied agency are documented. Autistic and other neurodivergent people who experience high degrees of external control over their lives show elevated rates of anxiety, depression, burnout, and what researchers describe as identity disruption. These are not separate problems from agency. They are downstream of it.

Self-determination, when it is genuine rather than formal, changes outcomes. Ryan and Deci’s (2017) research across multiple populations, including disabled people, consistently finds that autonomy support produces better psychological outcomes than controlling support. The mechanism is not mysterious: people do better when their own understanding of their needs is treated as valid information.

The shift this requires from institutions is not complicated, even if it is politically difficult. It means treating neurodivergent people as the primary source of information about their own experience, rather than as subjects to be assessed and managed by external expertise.

History

• Pre-1960s: Medical model frameworks position disabled and neurodivergent people as patients to be treated and managed. Decision-making authority rests almost entirely with clinicians, educators, and family members. The concept of neurodivergent self-determination has no institutional foothold.

• 1970s: Disability rights activists begin organizing against institutionalization and paternalistic care models. The Independent Living Movement in the United States argues that disabled people should control their own support services. The political logic of self-determination begins to enter disability discourse.

• 1980s–1990s: Self-advocacy movements grow within Autistic and intellectual disability communities. People First organizations and early Autistic self-advocacy groups insist on the right to speak for themselves. Disability rights legislation in the U.S., including the ADA (1990), establishes legal frameworks for participation and accommodation, though enforcement of self-determination in practice remains inconsistent.

• 2000s: Research documenting harm from compliance-based interventions grows. Autistic adults who experienced behavioral therapies as children begin publishing accounts of their effects. The phrase “nothing about us without us,” drawn from disability rights activism, gains wide circulation as a shorthand for the self-determination principle.

• 2010s: The neurodiversity paradigm becomes a more prominent framework in both advocacy and research. Autistic-led organizations, including ASAN, develop explicit policy frameworks around supported decision-making and the right to refuse intervention. Academic work by Kapp (2020), Walker (2021), and others builds a scholarly foundation for neurodivergent self-determination as both an ethical and empirical concern.

• 2020s: Supported decision-making models gain ground as alternatives to guardianship in legal and clinical contexts. The tension between protection and autonomy in disability policy receives increasing attention, particularly for Autistic and intellectually disabled adults.

Related Concepts

• Neurodiversity Paradigm

• Autistic Self-Determination

• Autistic Parallel Processing

• NeuroQueer

• Disability Justice

• Collaborative & Proactive Solutions (CPS)

Note: The quotes in the In Their Own Words section are composite accounts constructed from patterns across documented community sources. They do not represent single individuals. See the editorial notice on composite quotes for the full explanation of this practice.

References

• ASAN (Autistic Self Advocacy Network). (2020). Nothing about us without us: Self-determination and supported decision-making.

• Bailin, A. (2019). Clearing up some misconceptions about neurodiversity. Scientific American.

• Kapp, S. K. (Ed.). (2020). Autistic community and the neurodiversity movement: Stories from the frontline. Palgrave Macmillan.

• Ryan, R. M., & Deci, E. L. (2017). Self-determination theory: Basic psychological needs in motivation, development, and wellness. Guilford Publications. https://doi.org/10.1521/978.14625/28806

• Walker, N. (2021). Neuroqueer heresies*: Notes on the neurodiversity paradigm, autistic empowerment, and postnormal possibilities.* Autonomous Press.