Transition and Adulthood ASD Survey in Argentina

Background:  In 2014, parent and professional organizations in Argentina created RedEA (Red Espectro Autista – Autism Spectrum Network) in order to increase ASD awareness and influence public policy related to ASD. The first project undertaken by RedEA was an ASD early detection awareness campaign called Mirame (Look at Me). In 2016, RedEA developed the Transition and Adulthood ASD Survey to assess the current situation of adolescents and adults with ASD in relation to diagnosis, level of functioning, services, education, employment, housing, money management, leisure and free time activities, social life, health checks, support networks and quality of life. The survey is intended for parents or primary caregivers of individuals with ASD over 13 years old and for individuals with ASD older than 18. After pilot testing of the survey, RedEA members reached a final version by consensus.

Objectives:  To provide a comprehensive picture of needs, challenges and current situation of adolescents and adults with ASD in Argentina and other Latin American countries with the purpose of successfully enhancing awareness, improving services and developing long-term policy solutions related to ASD in the region.

Methods:  The Transition and Adulthood ASD Survey will be broadly disseminated via social networks of RedEA organizations in Argentina during a period of 5 months (November 2016-March 2017) so that caregivers of individuals over 13 and/or adults with ASD older than 18 can complete it online. The survey solicits information about family demographics, individual characteristics, diagnosis, level of functioning, services, education, employment, housing, money management, leisure and free time activities, social life, health checks, support networks and quality of life. It is estimated that more than 400 surveys will be completed in total. After the collection of completed surveys, RedEA researchers will proceed to data cleaning and data analysis, and will draft a report.

Results: A summary of the results from the Transition and Adulthood ASD Survey will be presented, and regional similarities and differences will be analyzed.

Conclusions: The assessment of the current situation of adolescents and adults affected by ASD in Argentina and other Latin American countries is essential for the identification of knowledge gaps, service needs, inclusive education and employment, and quality of life of these individuals and their families. It is also important in the development of culturally relevant strategies for raising awareness about adulthood and ASD, promoting inclusive education, employment and housing, guiding the implementation of successful and improved ASD services and setting priorities for long term national and regional public policy solutions in this age group.