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Measuring better to include better: the pending shift in disability

  • Writer: Carlos Fonce
    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.


A horizontal bar chart shows the population aged 15 and over in Mexico, broken down by educational level, differentiating between people without disabilities and those with disabilities, as well as by the type of difficulty reported in daily life. The top section compares two groups: * **Population without disabilities (75.1 million)**: 3.0% with no schooling, 47.2% with basic education, 26.1% with upper secondary education, and 23.5% with higher education. * **Population with disabilities (5.67 million)**: 21.0% with no schooling, 59.2% with basic education, 10.7% with upper secondary education, and 9.0% with higher education. Below, the chart breaks down the population with disabilities who report significant or total difficulty in various functions: * **Vision, even with glasses (2.5 million)**: 18.6% with no schooling, 57.6% with basic education, 12.9% with upper secondary education, and 10.8% with higher education. * **Walking or climbing/descending (2.75 million)**: 24.5% no schooling, 61.1% basic education, 7.6% upper secondary education, 6.7% higher education. * **Hearing, even with a hearing aid (1.27 million)**: 29.8% no schooling, 56.3% basic education, 7.3% upper secondary education, 6.6% higher education. * **Remembering or concentrating (935,000)**: 34.8% no schooling, 53.8% basic education, 6.5% upper secondary education, 5.0% higher education. * **Self-care: bathing, dressing, or eating (897,000)**: 34.8% no schooling, 53.8% basic education, 6.5% upper secondary education, 5.0% higher education. * **Speaking or communicating (614,000)**: 44.3% no schooling, 46.3% basic education, 5.5% upper secondary education, and 3.9% higher education. The graph shows that as functional difficulties increase, especially in communication, memory/concentration, and self-care, **the percentage of people with no schooling increases and the proportion with higher levels of education decreases**. Source: 2020 Population and Housing Census, INEGI.

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.


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