Implementation of the Latin American Autism Spectrum Network Caregiver Needs Survey

Background:  ASD knowledge, services and research infrastructure in Latin America are limited and unevenly distributed. In 2015, researchers from Argentina, Brazil, Chile, Uruguay, Venezuela and Dominican Republic constituted the Latin American Autism Spectrum Network (Red Espectro Autista Latinoamerica – REAL) in order to conduct international research collaborations related to ASD. The first project undertaken by REAL was the translation, adaptation and implementation of the AS Caregiver Needs Survey. The AS Caregiver Needs Survey was developed by Autism Speaks to assess the needs of families affected by autism in partner countries of its Global Autism Public Health Initiative. It is intended for parents or primary caregivers of individuals with a professional diagnosis of autism spectrum disorder. After translation, adaptation, back translation and pilot testing of the survey, REAL researchers reached a final version by consensus, taking into account caregiver suggestions collected during the pilot phase.

Objectives: To provide a comprehensive picture of the major needs and challenges faced by families affected by ASD in REAL countries with the purpose of successfully enhancing awareness, improving services, and developing long-term policy solutions related to ASD.

Methods: The Caregiver Needs Survey will be broadly disseminated via social networks in REAL countries during a period of 4 months (November 2015-February 2016) so that caregivers can complete it online, either assisted by a clinician or not. The survey solicits information about family demographics, affected individual characteristics, service encounters and parent/caregiver perceptions, including stigma. It is estimated that more than 3000 surveys will be completed in total. After the collection of completed surveys, REAL researchers will proceed to data cleaning and data analysis, and will draft a country and regional report.

Results: A summary of the results from the Caregiver Needs Survey in each REAL country will be presented, and regional similarities and differences will be analyzed.

Conclusions: The assessment of needs and challenges faced by families affected by ASD in different Latin American countries is essential for the identification of knowledge gaps, service needs, and stigma. It is also important in the development of culturally relevant strategies for raising autism awareness, guiding the implementation of successful and improved ASD clinical and educational services at the national and regional levels and setting priorities for future national and regional research collaborative efforts. In this era of globalization, REAL is an attempt to generate a collaborative workforce in order to readily identify the best ways to approach issues related to ASD in Latin America.