Age of First Concerns and Age of ASD Diagnosis in a Sample of Latin American Children

Background:

Although parents report preoccupation with their child’s development, it could take years to obtain a diagnosis of ASD. Among the reasons suggested for diagnosis delay are lower levels of parent education, lower socioeconomic status (SES), limited knowledge of parents about ASD, scarcity of trained specialists, and diminished health-care knowledge. Data are also lacking on the demographic and clinical variables that might explain disparities in parental first concerns and diagnosis of ASD for different ethnic groups.

Objectives: The goal of the study was to describe the age of parental concerns, types of first parental concerns, the age at first ASD diagnosis, and factors associated with age at the first diagnosis in a sample of Latin American children.

Methods: A needs survey for caregivers of people with ASD was performed in the Latin-American Region between 2015-2016 by the Red Espectro Autista Latinoamerica (REAL). 2965 families were surveyed in six Latin-American countries (Argentina, Brazil, Chile, Dominican Republic, Uruguay and Venezuela) using the Autism Speaks Caregiver Needs Survey. Age of parental recognition and description of first signs were ascertained through the direct questions of the survey

Results: Age of parental first concerns varied from 20.36 in Brazil to 28.05 months in Chile with a median age of recognition of 22.22 months (SD 18.94, for the total sample. The average age of diagnosis for the total sample was 51.88 (SD 48.21), with the earliest age of diagnosis in Venezuela at 41.66 and the latest in Brazil with 57.55 months. Linear regression analysis found that country of residence is a predictor of age of diagnosis but not for the age of first concerns. Also, gender (male) and professionals consulted (neurologists) were predictors of earlier age of diagnosis (F=73.39, p=.003, R²=.110). For an earlier age of first concerns, professionals consulted (pediatricians) and lower child’s verbal ability were significant predictors (F=34.57, p=.008, R²=.055).

Conclusions:

Latin American parents were aware of developmental difficulties before the second year of life, which is consistent with parental reporting in other countries. However, their children were diagnosed months later. These results highlight the role of culture in the ASD diagnostic process. Also points into the disparity of professionals training in the diagnosis and early intervention and scarcity of services in Latin American countries. These findings warrant further study of the cultural impact on autism diagnosis and developing of public policies to speed up the diagnostic process in Latin-Americans countries.