Caregivers Needs of Persons with Autism Spectrum Disorders in Latin America: Results from Chile

Background:

Research about autism spectrum disorders (ASD) and health and education services are limited. This study is part of a larger study based conducted in six Latin American countries (Argentina, Brazil, Chile, Uruguay, Panama, Dominican Republic) by the Red Espectro Autista Latinoamerica (REAL). Its purpose is to assess the needs of families with a member with ASD, in order to enhance awareness, improve services, and develop long-term policy solutions related to ASD.

Objectives:

Understand and analyze the major needs and challenges regarding access to health and educational services faced by families affected by ASD in REAL countries.

Methods:

Quantitative and qualitative description (n = 2965) study by online survey between Dec-2015 and April-2016, which assessed the needs of families affected by ASD.

Results:

292 Chilean families participated. The diagnosis most prevalent was ASD, being more common in men (8:1). There is a difference of 32 months between the age of early parental concerns (x ̅ = 28m) and age at diagnosis (x ̅ = 60m). The professionals more involved in the diagnosis are neurologists (45%) and psychiatrists (18%). There is limited access to health services, and few percent of subjects attend to Cognitive Behavioural Therapy (16%), Sensory Integration Therapy (13%), Ocupational Therapy (36%), Social Skills Therapy (22.3%) and Language Therapy (34.7%). Caregivers considered very important that the child has support for progress in school (83%) or make friends (75%), however 68% experience frustration in relation to their efforts to obtain services. 53% reported side economic problems because of ASD. Their priorities focus on ensuring adequate health services (23%) and education (29%).

Conclusions:

In Chile, there is a late diagnosis, along with low support and satisfaction in health and educational services delivery in children with ASD. These results provide scientific evidence for the development of strategies to improve the clinical and educational services available, and solutions that improve the quality of life of children with ASD and their families.