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Published on: April 22, 2015
Barriers to early identification of autism in Brazil
Sabrina H Ribeiro1, Cristiane S de Paula1,2, Daniela Bordini1
1Ambulatório de Cognição Social Marcos Tomanik Mercadante (TEAMM), Departamento de Psiquiatria, Universidade Federal de São Paulo (UNIFESP), São Paulo, SP, Brazil.
Insights
Mothers in Brazil notice early signs of autism spectrum disorder (ASD) in their children, but a significant delay in diagnosis is common. Negative experiences with healthcare professionals often hinder the diagnostic process for ASD.
Area of Science:
- Child Development
- Neurodevelopmental Disorders
- Public Health
Background:
- Parental concerns regarding atypical child development often arise within the first year of life.
- Early identification of autism spectrum disorder (ASD) is crucial, yet diagnosis is frequently delayed, particularly in low- and middle-income countries.
- Understanding the diagnostic pathway for ASD in Brazil is essential for improving early intervention.
Purpose of the Study:
- To investigate the timeline from initial parental concerns to formal ASD diagnosis in Brazil.
- To identify barriers and facilitators in the diagnostic pathway for children with ASD in Brazil.
Main Methods:
- Qualitative interviews were conducted with 19 mothers of children diagnosed with ASD.
- Participants included 17 boys and 2 girls, with a mean age of 93.0 months.
Main Results:
- Mothers reported initial concerns at an average child age of 23.6 months.
- Formal ASD diagnosis occurred at a mean age of 59.6 months, indicating an average delay of 3 years.
- Mothers frequently experienced discouragement from healthcare professionals, leading to negative encounters during the diagnostic journey.
Conclusions:
- Parental recognition of early ASD signs in Brazil aligns with international findings.
- A significant delay exists between initial parental concerns and formal ASD diagnosis in Brazil.
- Negative interactions with healthcare professionals represent a substantial barrier for parents seeking an ASD diagnosis for their children.
Objective:
Parents of children with autism spectrum disorders (ASD) seem to perceive that their child's development is not following the normal pattern as early as the first year of life. However, ASD children may not receive a diagnosis until they are of preschool age, especially in low- and middle-income countries. The objective of this study was to evaluate the pathway between initial parental concerns about atypical child development and ASD diagnosis in Brazil.
Methods:
Nineteen mothers whose children had been diagnosed with ASD participated and were interviewed. The ASD group consisted of two girls and 17 boys, with a mean age of 93.0 months (SD 48.4 months; range 39-197 months).
Results:
Mothers had their first concerns regarding ASD when children were 23.6±11.6 months old, but formal diagnosis occurred at a mean ± SD age of 59.6±40.5 months, corresponding to a 3-year delay. Most mothers felt discouraged to address their concerns due to negative experiences with health professionals.
Conclusion:
In Brazil, mothers perceived the first signs of ASD in their children at an age similar to that reported in other countries, but the diagnosis of ASD seemed to be delayed. Consistent with the literature, mothers reported negative experiences with health professionals during the pathway to achieving ASD diagnosis.
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