Financial Impact, Quality of Life and Stigma of the Families of People with ASD in Uruguay in the Framework of a New Mental Health Law

Background: International studies have described the impact of having a family member with autism spectrum disorder (ASD). It depends on many variables including access to treatments, inclusion in the educational system, stigma and severity of symptoms. Few studies have been conducted in Latin America describing the impact on families.

Objectives: Evaluate perception of the caregivers of people diagnosed with ASD in Uruguay have of the economic impact, quality of life, stigma and the variables that determine it. Contribute inputs to the New National Mental Health Plan within the framework of the National Integrated Health System and the Care System

Methods: Cross sectional study. During a period of 4 months (2015-2016) caregivers completed the Autism Speaks Caregiver Needs Survey. Adaptation and dissemination of the survey was carried out by professionals and parent’s associative corporation. This study is part of an investigation based on the needs of caregivers of people with ASD that made in six Latin American countries (Argentina, Brazil, Chile, Uruguay, Panama, Dominican Republic) by the Red Espectro Autista Latinoamerica

Results: - 382 surveys were filled in Uruguay, with a response rate of 11.14 per 100,000 inhabitants. 53% of the respondents said their son's disorder had caused family financial problems. One family member stopped working in 35,5% and in 52% had to reduce their working hours to take care of the individual with ASD. Quality of life was assessed relating the satisfaction and importance of three variables (importance of having support in school, making friends and the relationship with professionals). Satisfaction is low if it is related to the importance given. 35% feel discriminated by others because they have a child with ASD. 34% described impotence generated by having a child with ASD

Conclusions: Financial impact may be consequence of the costs of the treatments and the reduction of the hours of work or even quit to take of care of the person with ASD. Aspects such as: educational inclusion, the quality of attention and the access to treatment might influence the perception of quality of life that families have. This data is relevant in the current national context. Recently a new Mental Health Law was passed from a Human Rights (perspective or point of view ) in the framework of the National Health System. The collected data must be considered in the National Mental Care Health Plan, allowing a thorough analysis of people with TEA’s health needs along their lives and their families. More extensive studies should be done to allow a better understanding of the social stigma perceived by parents and to approach the difficulties that limit the social inclusion of people with ASD and their families in Uruguay.