Burden in Latin American Families of People with Autism Spectrum

Background: Studies conducted in developed countries indicate high burden to families of people with ASD, as well as high costs related to the disorder. However, few data are available about the lived experiences of families affected by ASD in the Latin America. To conduct international research collaborations related to ASD in Latin America, in 2015, researchers from Argentina, Brazil, Chile, Uruguay, Venezuela and Dominican Republic constituted the Latin American Autism Spectrum Network – REAL.

Objectives: To describe the stigma and financial impact of having a family member with ASD in six Latin American countries.

Methods: Study design: cross-sectional study. Sample: 2.953 parents/primary caregivers from six Latin American countries (convenience sample) – 1,243 from Brazil, 786 from Argentina, 375 from Uruguay, 291 from Chile, 147 from Dominican Republic and 111 from Venezuela. Instrument: Spanish/Portuguese version of the AS Caregiver Needs Survey (developed by Autism Speaks, Global Autism Public Health Initiative) with information about family demographics, affected individual characteristics, service encounters and parent/caregiver perceptions, including stigma and financial impact of ASD.

Results: More than 1/3 of the caregivers from all countries declared feeling powerless (overall 38.9%; ranging from 17.0% in Venezuela to 51.3% in Brazil) and discriminated (overall 34.4%, ranging from 17.0% in Venezuela to 38.3% in Uruguay) for having a child with ASD. A smaller proportion (14.6%) said that having a child with ASD imposes a negative impact over them (ranging from 5.7% in Venezuela to 16.8% in Brazil) and only 8.5% were worried that other people would know that they have a child with ASD (ranging from 6.0 in Uruguay to 10.7 in Chile).

Overall, 48.7% of the caregivers reported negative financial impact related to ASD, ranging from 42.8% in Argentina to 62.6% in Dominican Republic. Almost half of the participants (47.4%) declared that members of their family had to cut down working activities (ranging 43.9% in Brazil to 54.1% in Venezuela) and 35.5% had stop working (ranging from 27.9% in Dominican Republic to 39.6% in Venezuela).

Detailed description of data by country will be provided during the IMFAR.

Conclusions: A significant proportion of caregivers of individuals with ASD in Latin American have complaints related to stigma, mainly discrimination, with variation among countries. Perceived stigma is associated with decreased access to mental health care services, and delayed treatment may impact prognosis in these population. Further researches on the stigma of ASD in Latin American communities is necessary to clarify potential causes of stigma, address differences among countries and plan adequate interventions.

Additionally, having a child with ASD was associated with substantial financial burden with almost 50% of participants reporting some sort of burden in this field in most of the Latin America countries. Knowing that high costs should be affecting people with ASD throughout life, efficient use of health and educational resources is urgent, particularly in countries with limited resources as Latin America one