From Diagnosis to Functional Need: Toward Fairer Criteria for Determining Service Eligibility

The year 2026 witnessed an important scientific development in the field of autism spectrum disorder, as the researcher Siegel and his colleagues published a study in the journal Molecular Autism that reached a consensus research definition for the category of “Profound Autism”, aimed at shedding light on individuals who require high, sustained levels of care and support.

This definition is not intended to introduce a new medical diagnosis, but rather to provide a clearer scientific framework for identifying the characteristics and needs of this group, and for developing research and services directed toward it.

What Are the Proposed Criteria for Profound Autism?

According to the study, meeting the research definition requires the presence of the following criteria:

1. Diagnosis: Meeting the diagnostic criteria for autism spectrum disorder.
2. Age: The individual must be at least eight years old, with the recognition that some traits may appear at earlier ages.
3. Continuous Supervision: The need for permanent supervision by an adult to ensure safety, health, and well-being, due to risks such as elopement or poor awareness of surrounding hazards.
4. Adaptive Skills: The presence of severe deficits in independence and the ability to perform most activities of daily living, such as bathing, dressing, and food preparation.
5. Cognitive and Communication Abilities: The presence of severe cognitive impairment, usually indicated by an IQ below 50, and/or severe limitations in verbal communication, such that it is often limited to single words or set phrases to express basic needs.
6. Continuity of Need: That these characteristics are persistent, not temporary, and appear across different environments and situations.

These criteria raise an important issue that goes beyond autism spectrum disorder: that a medical diagnosis alone does not necessarily reflect the extent of an individual's actual need or the level of support they require.

What Does This Mean for Services for Persons with Disabilities in the Kingdom?

The Kingdom of Saudi Arabia has made significant progress in developing services for persons with disabilities, expanding rehabilitation and special education programs, and promoting beneficiaries' rights and quality of life.

However, some eligibility and admission criteria are still linked to disability type, IQ score, or diagnostic status, more than they are linked to a comprehensive assessment of functional need and the level of support required.

For example, published admission requirements for private daycare center services specify that the beneficiary must fall into the moderate or severe intellectual disability category, and published guidelines also cite a specific IQ cutoff, alongside requirements related to behavior and school enrollment.

While these regulations are important for organizing services, they open the door to questioning how well they can accommodate the great diversity in the needs of persons with disabilities.

Two children may have the same diagnosis, yet one enjoys relatively high independence, while the other requires continuous supervision due to risks of elopement, poor danger awareness, or an inability to meet basic needs.

Does it make sense, then, for both to receive the same level of support merely because they share a diagnosis? And should an IQ score alone be a decisive factor in determining eligibility for certain services?

Here the most important question arises:

Instead of asking only: “What is the individual's diagnosis?”, should we not also ask: “How much support do they need to live safely and with dignity, and to achieve the best possible level of independence?”

Toward Eligibility Criteria Based on Actual Need

It may be appropriate to reconsider eligibility criteria for daycare and special education services so that they include a more comprehensive assessment of a set of functional indicators, most notably:

• The level of independence in activities of daily living and the need for continuous supervision.
• The level of adaptive skills and functional communication.
• The presence of behaviors or circumstances that could endanger the individual or others.
• The amount of support needed by the individual and family, and the extent to which these needs persist across different environments.
• The level of participation in educational, social, and community activities, and the barriers limiting it.

Most importantly, this approach is not limited to individuals with profound autism; it can extend to other groups, such as intellectual disability, multiple disabilities, cerebral palsy, and severe developmental and physical disabilities, taking into account the distinct characteristics of each group.

Do We Need a Unified National Measure to Determine Support Levels?

These scientific developments may represent an opportunity to study developing a unified national framework for assessing functional need and level of support, to be used alongside diagnosis, medical reports, and educational and rehabilitative assessments.

Such a framework could help shift from binary eligibility decisions, based on acceptance or rejection, to more nuanced decisions that determine the type, intensity, and duration of service.

Some beneficiaries may require intensive daytime rehabilitation programs and continuous supervision, while others may benefit from supported educational inclusion, home-based services, or vocational rehabilitation and family support programs.

This approach could also support allocating resources according to actual need, measuring intervention outcomes, and enhancing integration across health, education, and social service sectors, without the assessment becoming a tool to exclude beneficiaries or diminish their rights.

It is also important to distinguish between using the definition of “profound autism” for scientific research purposes and using functional assessment to determine service eligibility; the latter must encompass all age groups, including children under age eight who may require intensive early intervention.

Conclusion

Reconsidering service eligibility criteria does not mean dismissing the importance of medical diagnosis or disability classifications; rather, it means complementing them with objective indicators that reflect an individual's day-to-day reality and needs.

Fairness in service provision does not necessarily mean offering the exact same service to everyone, but ensuring that each individual receives the type and level of support appropriate to their needs.

This could be an opportunity to develop a more flexible and equitable system that helps improve quality of life, enhances independence for persons with disabilities, and directs resources more efficiently, in line with the goals of Saudi Vision 2030.

The question worth discussing today: Has the time come to move from diagnosis-centered eligibility criteria to a system based on actual functional need and the required level of support?

Originally published in Arabic. This English version was produced with AI-assisted translation; the Arabic original remains the reference.