- Carlos Fonce
- May 2
- 4 min read
Regarding April 2nd, World Autism Awareness Day
In the context of World Autism Awareness Day, a reflection on what we know and what we can learn to develop better policies that lead to full and effective participation in society
The Washington Group (WG) Basic Set of Questions relates, firstly, to general domains of functioning —seeing, hearing, walking, remembering or concentrating, self-care and communication—which were selected because they are basic limitations that are frequently associated with restrictions on participation, i.e., lower achievements compared to the general population.
From these questions it is possible to observe gaps in development and in the exercise of rights , for example, in education, although without identifying a specific health condition in themselves.
In this context, Autism Spectrum Disorder ( ASD) can be linked to the domains of communication , memory, and concentration , and to varying degrees to self-care , because these areas often reflect some of the difficulties related to social communication, attention, cognitive flexibility, and certain supports for daily living. In contrast, its relationship is much weaker with domains such as seeing, hearing, or walking . Therefore, the instrument allows for the assessment of general functional gaps, but it cannot directly identify autism or comprehensively describe how it manifests in everyday life.
For example, based on the above and data on the population with disabilities in Mexico aged 15 and over and their educational level, it can be inferred that people with ASD tend to achieve lower educational attainment, even below the average for people with disabilities, since those with significant or total difficulty communicating in daily life exhibit the lowest performance. However, this inference is highly accurate, as this manifestation of limitation in daily life can be related to other causes.
Census data captured using the GW criterion have limitations, for example:
They are not linked to specific health conditions.
For example, they do not allow for the direct identification of populations such as those with autism spectrum disorder (ASD).
In the case of ASD, it may not include other manifestations of greater specificity, since the GW criterion is a general population screening tool.
They show the gaps, but are limited in explaining their determinants.
In the context of health, when ASD is related to disability, in the different mechanisms to accredit disability in Mexico, when it is registered as a health condition, that record does not contain information about the performance of people in their daily life, that is, the other extreme of census statistics: we have the diagnosis, but the knowledge of what it means to the person in their daily life.
For example, the process for obtaining the National Disability Credential from the National DIF System— without discounting the value it has meant for many people to prove their health condition to an authority —the lack of explanations of its operation and the absence of systematized information has been part of the explanation for the lack of public health policies and interventions in this area, which fundamentally need information to be established.
The fundamental change
The Electronic Disability Certificate (CEDIS) , established in NOM-039-SSA3-2023, allows the integration of the following into a single process:
Personal data
The manifested health condition or conditions.
The person's everyday experience in relation to their health condition-
Barriers in the context in which people live.
Following its implementation, the Disability Information Subsystem was enabled in the National Health Information System, configuring the first national registry with a focus on functioning, aligned with the International Classification of Functioning, Disability and Health.
This will progressively open a new stage for public policy, particularly relevant in the context of intervention for complex conditions such as ASD, where the challenge is not only clinical, but profoundly social.
Examples of public action that this system will allow to be strengthened:
Early detection and monitoring of development , linking functional data with educational trajectories.
Rehabilitation services and therapeutic support tailored to real profiles of communication, interaction and autonomy.
Educational inclusion strategies , such as accessible communication, classroom support, and reasonable adjustments.
Mental health and support for families , considering the environment as a key factor.
Transition to adulthood and supported employment , based on functional abilities and not just diagnoses.
Current data reveals the gap; the new system will allow us to understand it and act accordingly.
Only with a better understanding of how disability is experienced in everyday life is it possible to build public responses that guarantee, in practice, the full exercise of rights.
Literature
INEGI (2021). 2020 Population and Housing Census. Basic questionnaire and tables on disability . Available at: https://www.inegi.org.mx/programas/ccpv/2020/
Washington Group (2016). Washington Group Short Set on Functioning (WG-SS) . Available at: https://www.washingtongroup-disability.com/question-sets/wg-short-set-on-functioning-wg-ss/
World Health Organization (2001). International Classification of Functioning, Disability and Health (ICF) . Geneva: WHO.
World Health Organization (2023). Autism spectrum disorders (ASD): Fact sheet . Available at: https://www.who.int/news-room/fact-sheets/detail/autism-spectrum-disorders
NOM-039-SSA3-2023 (2023). Official Mexican Standard NOM-039-SSA3-2023, for the certification of disability . Official Gazette of the Federation.
Ministry of Health (2024). National Health Information System: Disability Information Subsystem . Technical documents and operational guidelines.
United Nations (2007). Resolution A/RES/62/139: World Autism Awareness Day .
