Neurodivergences Observatory · Data with purpose

Observatory vision

We want communities, organisations, and governments to rely on situated evidence when designing supports that honour neurological diversity. We combine quantitative data with lived stories while protecting privacy and consent in every step.

We build an accessible, bilingual and evolving experience, ready to adapt to new questions and findings.

2025 objectives

Co-create the pilot survey alongside neurodivergent communities across the region.
Publish open findings with filters by country, gender, diagnosis, and available supports.
Activate collaborative analysis spaces with partner organisations and allies.

Principles

Accessibility: keyboard-first navigation, AA contrast, and plain-language copy.
Data care: IP and participant hashing with rotating salts; explicit informed consent.
Transparency: content, questionnaires, and roadmap published under MIT and Creative Commons licences.

Accessible, living, bilingual survey

The form guides each participant through themed steps. It autosaves drafts, lets you resume with a unique re-entry code, and adapts to the language you choose.

Survey steps

1. Context & environment.
2. Health and clinical supports.
3. Educational trajectories.
4. Employment and economy.
5. Community and participation.
6. Closing reflections.

How it works

Immediate validation at every step.
Automatic saving between drafts and submissions.
Resume exactly where you left off at any time.
Optional “prefer not to answer” fields.

Localisation & accessibility

Persistent language selector that tolerates mid-flow changes.
High-contrast design with full screen reader support.
Specific error messaging and automatic saving.
Quick glossary with plain-language definitions.

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.

What you will explore

Featured stories: Editorial modules with testimonies (with consent) and context for common barriers.
Comparable indicators: Gaps in diagnosis access, formal employment, educational supports, and mental health by country.
Time series: Tracking by survey version to identify shifts and emerging patterns.

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.

Explore the full methodology

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

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.

Thank you for reaching out! We received your message and will get back to you very soon.

Follow us on Instagram

Upcoming milestones

Private pilot with 50 neurodivergent participants (Q4 2025).
First thematic report and anonymised dataset (Q1 2026).
Partner integrations for community allies (Q2 2026).