To be inclusive of diverse voices within the community (Bottema-Beutel et al., 2021; Vivanti, 2020), in this study, we will use both person-first (“person with autism”) and identity-first (“autistic”) language interchangeably when referring to autism. We believe that this flexible approach to terminology better reflects the dynamic nature of both research and the autistic community.
Autism is a neurodevelopmental condition that affects communication, social interaction, and behavior (World Health Organization [WHO], 2023). It is a highly prevalent mental disorder, yet the prevalence figures for Autism Spectrum Disorder (ASD) are quite heterogeneous. For example, while the WHO (2023) estimates that 1 in 100 children has ASD, the Centers for Disease Control and Prevention (CDC, 2021) estimates that 1 in 44 children is diagnosed with some form of ASD. Many factors are thought to account for these differences in prevalence, such as the population sampled, the study design, and the diagnostic criteria used (Elsabbagh et al., 2012; Talantseva et al., 2023).
The prevalence of ASD varies widely across different regions. According to a review of 71 studies conducted in the United States and different countries in Europe between 2012 and 2021, the prevalence of ASD ranged from 1 to 436 per 10.000 people (Zeidan et al., 2022). In Latin America, however, the estimated prevalence was between 25 and 30 per 10.000 people, based on data from 2011 to 2013 (Fajardo et al. 2021). Additionally, in many low- and middle-income countries, such as Argentina, the prevalence of ASD is largely unknown (Elsabbagh et al., 2012; Valdez et al., 2021; WHO, 2023), which can hinder the development of effective policies to support individuals with ASD and their families. Therefore, it is imperative to obtain further epidemiological data in these countries to adequately address this matter.
Moreover, several studies suggest that the prevalence of autism is increasing (CDC, 2021; Elsabbagh et al., 2012; Fajardo et al., 2021; Talantseva et al., 2023). The explanations for this phenomenon are diverse, ranging from expansions in diagnostic criteria (such as increased diagnoses of ASD and decreased diagnoses of Intellectual disability), environmental factors (such as increased survival rates of premature babies, who have a higher incidence of ASD, as found by Wang et al., 2017), advanced parental age (as reported by Kim et al., 2019), and increased awareness of the disorder and access to healthcare services (APA, 2022).
Despite this considerable variability in autism epidemiology, there are some well-established aspects. First, one of the most notable differences is that autism is more prevalent among males than females (APA, 2022; Elsabbagh et al., 2012; Hsu et al., 2012). Biological and genetic evidence supports this observation (Bölte et al., 2023). However, other variables may also contribute to this difference in prevalence. For instance, females with autism often exhibit camouflaging, which is the ability to mask autistic symptoms and can result in under diagnosis (Hull et al., 2020; Kirkovski et al., 2013; Loomes et al., 2017).
Second, signs of autism, as a neurodevelopmental disorder, can manifest in children as early as 12 to 24 months of age (APA, 2022). However, prevalence rates are higher among older children, aged 6 to 12 years, than those under 5 years old (Talantseva et al., 2023). This trend is exemplified in a study conducted in Latin American and Caribbean countries, where concerns about developmental delays appeared before the age of 2 but the average age at diagnosis was 3-4 years old (Montiel-Nava et al., 2023). This is concerning, as early detection and communication of ASD is associated with a better prognosis (Freitas & Revoredo, 2022; Molina, 2012; Webb & Jones, 2017) and increased self-understanding and empowerment in the patient (Oredipe et al., 2022).
Autism is a spectrum disorder, meaning that there is a wide range of abilities and impairments that occur among those with the diagnosis. While some autistic people may have average or above-average intelligence and need little support to function independently, approximately 75% of individuals with autism have moderate to severe intellectual disability, limited verbal communication, and limited adaptive behavior (APA, 2022). Due to this, autism is considered a cause of disability in many countries, including Argentina. Autistic people in Argentina, as well as their caregivers, can request a Unique Disability ID (UDID) voluntarily.
The UDID is a public document in Argentina valid throughout the country and guarantees a variety of rights, such as 100% coverage for disability-related diagnostic procedures, family allowances, transportation, and International Symbol of Accessibility (ISA). It is issued by a specialized team of healthcare professionals after a thorough interdisciplinary evaluation of the person's developmental history, symptoms, and functioning. The official nomenclature used for issuing UDIDs for autism in Argentina is the International Classification of Diseases (ICD-10) of the WHO (1992). According to the ICD-10, ASD falls under the category of Pervasive Developmental Disorders (PDD, F84). Furthermore, inside the PDD category, Argentina considers Infantile autism (F84.0), Atypical autism (F84.1), Asperger's syndrome (F84.5), other PDD (F84.8), and PDD not otherwise specified (PDD-NOS, F84.9). Lastly, as of March 2023, UDIDs no longer expire and therefore no longer require renewal.
Although there has been an increase in requests for family guidance related to autism in the Autonomous City of Buenos Aires (Argentina), indicating a growing awareness of ASD in the country (Puga et al., 2019), there is currently a lack of epidemiological data on autism in Argentina and its local regions. Moreover, the high heterogeneity of worldwide prevalence rates on autism makes it difficult to extrapolate them to the Argentinian population. Numerous studies have emphasized the urgent need for further research in low- and middle-income countries (Elsabbagh et al., 2012; Durkin et al., 2015; Valdez et al., 2021; WHO, 2023). Studying the issuance of UDIDs for autism in the Autonomous City of Buenos Aires could provide an estimate of the incidence of autism and its sociodemographic characteristics. In this study, we examine the trends and patterns of autism UDID issuance over time, explore the demographic factors associated with autism, and discuss the implications of our findings for autism research and policy in Argentina.