Adaptation and Evaluation of the Program Parents Taking Action for Latino Parents of Pre-Adolescents with Autism Spectrum Disorder (ASD)

Background:

In the last decade, an increase in research related to Autism Spectrum Disorder (ASD) in the Latino community has emerged. This research has primarily focused on early childhood and intervention, but little is known about the experiences of Latino adolescents and their families. Parent education has been found to provide knowledge, skills and support for families. A culturally tailored, evidence-based intervention called Parents Taking Action (PTA) develop by Sandra Magaña, provides support to Latino families of children with ASD in early development. The purpose of this research study is to expand the PTA program and adapt it for the next developmental stage to equip families to support their children through adolescence.

Objectives:

In this research project, I aim to develop and test a curriculum for Latino parents of adolescents with ASD, which will include topics of puberty, sexuality and adolescence. The project is divided in three phases in which the first phase included a pilot study of the content of the program in Austin, TX. In phase two, I will incorporate feedback obtained from the first pilot and will conduct a new study with parents in Chicago. Finally, in phase three, I will test the effectiveness of the intervention in Bogota, Colombia. This study reports on the results from phase I.

Methods:

In phase one, a pilot study was conducted with 13 Latino mothers of children with ASD in Austin, TX. The program was delivered in group format and included three sessions in which topics related to puberty, private vs public situations, relationships, internet risk, mental health, and mood changes were covered. After the completion of the program, mothers completed a social validity and satisfaction questionnaire about the program. To complement, a focus group was conducted to understand how and why the program was found helpful and what changes the program required. After reviewing feedback from first pilot, the same procedure will be conducted with Latino parents in Chicago as phase two.

Results:

Results from social validity and satisfaction survey showed that parents were highly satisfied with the program, and that they plan to apply many of the strategies. The results of the focus group suggested that the program provided parents with helpful information. It allowed them to realize that adolescence is a new stage, and that despite the short intervention, the strategies provided were helpful to address some situations. Parents also suggested that the program needed to be longer as just three sessions were not enough to cover a complicated stage of development, especially for children with ASD.

Conclusions:

Sexuality in the Latino community is often considered taboo, presenting cultural barriers that need to be addressed to improve the lives of youth with ASD. Addressing this barrier through educational programs tailored for Latino families is a feasible approach to provide tools, strategies and knowledge to parents who are the primary caretakers and educators of these youth. Through the development of this program, parents will have access to important information and practical approaches to support their adolescents with ASD