"Luchando Por Ellos:" Understanding Beliefs about ASD from First Generation, Mexican Parents

Background:

Beliefs about ASD relate to parents’ treatment decisions (Blacher, et al., 2014). Parents’ beliefs about ASD shape parents’ reports of symptoms, the time they take to seek treatment, and the treatment they select (Ravindran et al., 2014). Some Latino parents make religious attributions about their child’s disability that may shape treatment decisions. For example, some Latino parents believed that their child with disabilities was a punishment from God, others believed that the child was a gift from God, still others believed that God sent this child to test them (Bailey, et. al., 1999). Beliefs may cause parents to delay seeking treatment or to seek alternative treatment. In a study examining Latino families and their children with ASD, parents were found to endorse non evidence-based treatments that did not meet efficacy standards (Levy et al., 2003).

Objectives:

Understanding parents’ beliefs about ASD may shape treatment of ASD for Mexican-heritage (MH) children, whom are diagnosed at 50 percent below the national average and have low treatment participation rates (CDC, 2014, Lopez, et. al., 2013). The objective of this study was to understand MH parents’ beliefs about ASD and its causes.

Methods:

Participants were 28 MH parents (22 first generation; M age= 37; SD = 5.8) of children with ASD (R = 2 to 15 yrs old). Researchers employed cultural consensus modeling (Weller, 2007) in audiotaped focus groups to assess parents’ beliefs about two questions: “Please tell me what words or phrases you think of when you think about children with autism;” and “What do you think causes autism?” Participants ranked their responses in order of importance. Researchers compiled free lists and determined the total number of distinct responses for each question. Saliency scores for ranked items were calculated and an average score was determined for each response among those included in the participant’s rankings. Participants rationalized each step of the process.

Results:

Preliminary results indicated 62 distinct responses for Question One and 31 distinct responses for Question Two. When tabulating the free-list items across the focus groups, responses that described similar concepts were grouped together. For example, “falta de aceptacíon de otros niños o personas” (lack of acceptance from other children or people) was grouped with a similar response in a different focus group: “discriminacíon” (discrimination). The three most salient responses for Question One were “Que necesitan mucha ayuda.” (That they need a lot of help); “muy cariñosos” (very affectionate); and “se necesita más informacíon.” (One needs more information). The three most salient responses for Question Two were “La alimentacíon,” (what you eat) “La genetica,” (genetics) and “Vacunas” (vaccinations).

Conclusions:

Parents’ responses to Question One identified stigma – a negative evaluation of the child and family - as a theme. Saliency scores for Question One showed parents’ beliefs as child-centered, even identifying the child’s strengths (i.e., affectionate). Saliency scores for Question Two identified several beliefs, one of which is not supported by empirical evidence (i.e., vaccines) (DeStefano, et. al., 2013). Future analyses will utilize the transcribed interviews to rationalize parents’ beliefs.