Profile of Access and Satisfaction with Health and Educational Services for People with Autism Spectrum Disorders in Latin America

Background: People with Autism Spectrum Disorders (ASD) require multiple and different treatments throughout life and have special needs for inclusion in educational services. There is limited research available about access and level of satisfaction with these treatments in Latin America.

Objectives:  Understand and analyze the access to health and education services and satisfaction with these services in families affected by ASD in order to enhance awareness, improve services and develop long term policy solutions.

Methods: This study is part of a larger one based on the needs of caregivers of people with ASD carried out in six Latin American countries (Argentina, Brazil, Chile, Uruguay, Panama, Dominican Republic) by the Red Espectro Autista Latinoamerica (REAL). Data was collected by a online survey (n=2965) during 4 months, which assessed the health and educational services that families had received, their costs (for the governments and for the families), and type of services, considering demographic characteristics by country.

Results: There are differences between countries in terms of support and treatment received by subjects with ASD. In terms of access to health services, subjects have low to moderate access, depending on the country (Language therapy 3.8-43.1%; CBT 3.8-43.2%; Neurologist 3.8-43.7%). Among all countries, language delay treatment is the most frequently received. There is a high representation of psychodynamic therapies in Argentina (30%) compared to other countries (4% Venezuela, 7% Dominican Republic). In Uruguay physical therapies (motor skills) are the most prevalent (73%), while in other countries is 30%. Some countries like Chile, Dominican Republic and Argentina have a frequency of almost 40% of Sensory Integration Therapy, while in Uruguay it is only 11%. Chile has 27% of biomedical approaches. In other countries, biomedical treatments were received in a range of 11-20%. Treatments with the lowest percentage of satisfaction in all countries were biomedical and medication. Regarding the support subjects receive in the educational setting, only Brazil reports medium to high rates (42 to 55.9%). The other countries have rates from 3 to 28.6%. Only 5.0-42.1% of parents have received training or help with their children needs or treatment.

Conclusions: There are similarities between countries in access to certain treatments, but profiles show significant differences that may be linked to the existence of different professional profiles by country and easier access of households according to socioeconomic status and level of education of parents. There is inequity in the access to educational services and support depending on socioeconomic level in all countries. These data are potentially useful for the development of human resources and health policies that promote and support access to treatment.