Observatorio Neurodivergencias Neurodivergences Observatory

Neurodivergences Observatory

Methodology and data care

We follow participatory research principles and differential privacy. Sensitive data is anonymised via `ip_hash` and `participant_hash` with rotating salts, and raw access remains restricted to the methodology team.

Observatory pillars

Situated evidence

We capture insights directly from neurodivergent communities across Latin America so decisions reflect their contexts and languages.

Co-design with communities

We iterate questions, visualisations, and findings alongside ND families, professionals, and partner organisations.

Living accessibility

Each survey release adapts to new needs while keeping clear language, plain reading, and bilingual support.

Data governance

  • Granular consent and clear usage documentation.
  • Roles and policies (`can:manage-observatory`) for the internal area.
  • Encrypted backups and continuous log reviews.

Next steps with our communities

  1. 1. Launch the regional pilot with allied groups across multiple countries.
  2. 2. Publish the first open report highlighting priority findings.
  3. 3. Open public dashboards with filters and curated stories.
  4. 4. Extend the survey to new communities and emerging needs.
  5. 5. Co-create visualisations and advocacy resources with partner organisations.

Technical architecture

  • Dedicated subdomain (data.neurodivergencias.org) with its own design and reusable components.
  • Versioned survey definitions so questions can evolve without losing historical continuity.
  • Distinct layers for collection, analysis, and visualisation, each with quality monitoring.
  • Internal dashboards and a scoped API to share insights securely with partner organisations.

Survey flow & experience

  • Step-by-step journey through key themes with autosave and resume via unique re-entry code.
  • Immediate validation plus “prefer not to answer” options to reduce friction.
  • Bilingual localisation with real-time language switching and contextual glossary.
  • Participant self-service: downloadable summary and links to support resources.

Data protection and use

  • IP and participant hashes with rotating salts; no raw addresses stored.
  • Role-based access controls with dedicated observatory policies.
  • Encrypted backups and periodic access log reviews.
  • Open publication under MIT and Creative Commons licences, with anonymised datasets.
Want to collaborate?

We welcome communities, organisations, and researchers to pilot the survey, review the methodology, or co-create visualisations. Let’s talk about how your perspective can join.

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Public dashboard with editorial insights

We surface trends, comparisons, and featured stories built on anonymised data. Visualisations are downloadable so they can be shared and analysed across communities.

Live filters

Country, gender, diagnosis, available supports, and survey version.

Ally integrations

Secure connections for collaborative analysis and community dashboards.