Quality of Life and Education of Adolescents and Adults with ASD in Argentina. Preliminary Analysis Based on an Online Survey

Background: In Argentina, services for adolescents and adults with ASD are sparse. Supports for education after primary school are only emerging. In 2016 RedEA (¨Autism Spectrum Network¨), an association of parent support groups and NGOs in Argentina, developed a survey to assess the current situation of adolescents and adults with ASD in relation to quality of life, services, education, employment and other variables.

Objectives: Provide a picture of the quality of life and challenges of adolescents and adults with ASD in Argentina related to the level of education attained, with the specific goal of thinking of ways to improve educational services and develop long-term policy solutions related to ASD in the region.

Methods: The Transition and Adulthood ASD Survey had been broadly disseminated via social networks of RedEA organizations in Argentina in 2016/2017. Caregivers of individuals over 13 and/or adults with ASD older than 18 completed it online. The survey solicited information about different variables including educational and Quality of Life issues. The educational background and main difficulties that individuals found to achieve their educational goals were analyzed and the association of these variables with current perceived quality of life.

Results:

534 surveys were completed. 31 % of people reported not being currently studying (15% of people reported working). Among those not currently studying, 64% reported that they haven't achieved their desired educational level.

The main obstacles to educational achievement described by individuals with ASD and their families were disagreement with teachers or institutions, difficulties to integrate, financial limitations, behavior problems, low cognitive level (services not being adapted to level). However, over half of those not currently studying have achieved the secondary level of education or higher. Almost half (46%) of the respondents expect to study at university and 17% already have. Variables related to emotional Quality of Life showed a strong association with the level of education achieved by adolescents and adults currently not studying.

Conclusions: This results together with current educational challenges reported by families affected by ASD in Argentina demonstrate the need for the identification of knowledge gaps, service needs, and inclusive education for these individuals and their families. It is also important in the development of culturally relevant strategies for raising awareness about adulthood and ASD, guiding the implementation of successful and improved ASD educational services and setting priorities for long-term national and regional public policy solutions in this age group