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General Information
Educational reference on FENSA, official relations, the Civil Society Commission, and quality assessment frameworks. This page describes WHO's general processes, it is not a claim that ETWO has been evaluated or approved by WHO.
In brief
71,263 children are waiting past the evidence-based intervention window, international frameworks confirm early intervention cannot wait.
Registered
91,97491,974Children registered
Total registered in the Ontario Autism Program
Funded
20,71120,711Have active funding
Only 22.5% of registered children
Without active agreement
71,26371,263Without an active funding agreement
An administrative status; it does not confirm current service delivery.
Verified , MCCSS FOI via OAC · May 2026
| Metric | Value |
|---|---|
| Children registered | 91,974 |
| Have active funding | 20,711 |
| Without an active funding agreement | 71,263 |
FENSA was adopted by all 194 WHO member states at the 69th World Health Assembly in May 2016. It provides a comprehensive governance framework for how WHO interacts with four categories of non-state actors:
The framework explicitly includes grassroots community organizations and parent-led advocacy groups within its scope. No minimum organizational size is stipulated. The criteria are evidence quality, public health benefit, transparency, and accountability.
Engagement must demonstrably contribute to the advancement of public health outcomes.
Non-state actors must operate on the basis of evidence and use reliable, verified data.
Organizations must be transparent about their aims, activities, and sources of funding.
Non-state actors must have governance structures that ensure accountability.
WHO must safeguard the integrity and independence of its normative work.
Engagement must respect the intergovernmental nature of WHO and member states' decision-making.
Due diligence to identify and manage conflicts of interest.
WHO conducts risk assessment before and during engagement with non-state actors.
WHO engagement exists on a spectrum. At the highest formal tier, 218 entities maintain “official relations” with WHO as of February 2025, the most formalized tier of engagement, typically granted to large international NGOs after years of sustained collaboration.
Below official relations, WHO engages through multiple mechanisms:
The WHO Register of Non-State Actors provides transparency about all organizations WHO engages with, including those without official relations status.
On August 24, 2023, WHO Director-General Dr. Tedros Adhanom Ghebreyesus launched the WHO Civil Society Commission specifically to amplify grassroots and community organizations in global health governance.
“Civil society partners are unique and powerful voices of the people that WHO serves.”, Dr. Tedros Adhanom Ghebreyesus, WHO Director-General
The Commission received over 350 applications from civil society organizations worldwide. Approximately 120 were accepted through a rolling application and due diligence process. A Steering Committee of up to 25 members guides the Commission's work.
The creation of this Commission was itself an acknowledgment by WHO leadership that existing engagement mechanisms disproportionately favoured large, well-resourced organizations and that grassroots voices needed dedicated institutional support.
WHO maintains rigorous frameworks for evaluating health data and evidence quality:
The Grading of Recommendations, Assessment, Development and Evaluations (GRADE) approach is used by WHO to rate the certainty of clinical evidence and the strength of recommendations.
WHO's DQR framework assesses health systems data across multiple dimensions: completeness, internal consistency, external consistency, timeliness, and transparency of methods.
WHO Data PrinciplesWHO's Survey, Count, Optimize, Review, Enable (SCORE) package supports 133 countries covering 87% of the global population in strengthening health data systems.
Developed jointly with the National Academy of Medicine (NAM) and the Council of Medical Specialty Societies (CMSS), these principles define three criteria: science-based, objective, and transparent and accountable.
Credible Sources FrameworkFor Journalists
All WHO sources cited on this page link to official WHO primary documents. Claims are independently verifiable.
Call for Accountability
WHO, the UN, and Canada's own federal framework all call for timely, evidence-based autism intervention. Ontario's waitlist says otherwise.
Was End The Wait Ontario included in WHO social media?
VerifiedOn October 29, 2025, a clip of founder Spencer Carroll was included in a World Health Organization Instagram reel (@who) discussing autism diagnosis and early intervention. [WHO] The clip's inclusion highlighted the urgency of timely autism support-the core message End The Wait Ontario advocates for in the Ontario context. Not an endorsement by WHO.
Source: World Health Organization [WHO] · Open source record
How does Ontario compare to international autism standards?
VerifiedThe WHO emphasizes timely access to early evidence-based psychosocial interventions. Ontario's own program and FOI data document a multi-year access problem. The WHO source does not provide a standardized jurisdiction-by-jurisdiction wait-time ranking, so it cannot support a claim that Ontario is among the world's worst performers.
Source: World Health Organization [WHO] · Open source record
Sources on this page
Key claims are paired with their source, evidence tier, and verification date so readers can inspect the public record directly.
WHO recommends accessible, community-based early interventions for children with autism. Timely evidence-based psychosocial interventions improve communication and social engagement
91,974
children are registered in the Ontario Autism Program
22.5%
Only 20,711 children have active funding agreements (22.5%), less than one in four
Early Start Denver Model (ESDM) delivered to children aged 18–30 months produced significant gains in IQ, adaptive behaviour, and autism severity — some children no longer met diagnostic criteria at follow-up
Cochrane systematic review finds evidence that early intensive behavioural intervention (EIBI) may produce positive effects on adaptive behaviour and communication for young children with ASD (low certainty of evidence)
Evidence supports autism screening and intervention commencing in the first 2 years of life — earlier identification directly enables earlier intervention during the highest neural plasticity window
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Founder & Autism Advocate