The Status of EARLY Identification of Autism in Brazil

Background:

Parents seems to perceive that their ASD child´s development is not following the typical pattern as early as in the child first year of life. However, ASD children may not be diagnosed until they are of school age, especially in low and middle-income countries (LMIC).

Parents seems to perceive that their ASD child´s development is not following the typical pattern as early as in the child first year of life. However, ASD children may not be diagnosed until they are of school age, especially in low and middle-income countries (LMIC).

Objectives:  To describe the status of ASD early identification in São Paulo, Brazil.

Methods:  this cross-sectional study has been conducted in five Psychosocial Community Care Centers for Children and Adolescents (CAPSI), the public services responsible to treat ASD youth in the Brazilian Unified National Health System. In São Paulo city, there are 25 CAPSI, organized into 5 regions. The selection strategy was: firstly, we randomly selected one unit per region, and then all mothers/caretaker of ASD youth were face-to-face individually interviewed. Participants: 196 mothers/caretaker of children diagnosed with ASD in the last 10 years. Instruments: An adapted version of David Mandell’s questionnaire about the parental early concerns, that took an average of 45 minutes to be completed (Mandell et al., 2005). This study was approved by the Brazilian Research Ethics Committee. 

Results:

mean age of ASD youth was 8.5 years old and age range: 3-21 years old; 80.6% were boys and 79% had language delays. Overall, mothers had their first concerns that their child’s development was atypical when children were 25.6 months old (SD± 19; range: 2-144 months old), but these children had a formal diagnosis of ASD only at a mean age of 60 age (SD±2.7) (age range 12-180 months old), resulting in an average delay of 34.4 months in diagnosis. The vast majority of mothers mentioned their concerns firstly to pediatricians (65.3%), while 13.0% of them sought for specialists, mainly neuropediatrician or child psychiatrist. We also asked mothers to recall their first concerns about their child development. Interestingly, these concerns were not related to the core symptoms of autism, such as agitation, hyperactivity and temperament patterns.

Conclusions:

This is the first study presenting data about age of first symptoms noticed by parents and age of formal diagnosis in Brazil. The mean age of parents early concerns in Brazil was slightly higher than those in LMIC, while the age of ASD diagnosis was similar. The delay for diagnosis was almost of 3 years, which is a public health concern. In Brazil, Pediatrician is the first professional that mother seek for help, therefore specialized training in ASD would help them to better identify cases.