Parent's Reaction to Autism Diagnosis: A Qualitative Analysis Comparing Latino and White Parents

Background: Research on parents of children with Autism Spectrum Disorder (ASD) suggests that parents who are more “resolved” with their children’s diagnosis show more sensitivity and engagement when interacting with their children. However, very little is known about how culture affects parent’s reaction and resolution to ASD. To our knowledge, there is no published study on how Latino parents react towards their children’s diagnosis compared with White parents. The purpose of this paper was to compare how Latino and White parents react when their child was diagnosed with ASD.

Methods: Thirty-eight Latino parents and 55 White parents were recruited for a larger parent study. One open-ended question pertaining to parental reaction to ASD diagnosis was analyzed.  Using content analysis two of the authors, one of whom is bilingual and bicultural Latina, analyzed and coded the transcript independently. Codes and themes were discussed and synthesized through peer debriefing.

Results: The following four themes emerged in our analysis: 1) Similarities in their emotional reactions to the diagnosis, while their sense of guilt had different time onset. Both groups expressed depression, devastation, denial, loss, disbelief, and guilt. However, it is noteworthy that Latino parents reported their sense of guilt after they received their child’s diagnosis, while white parents reported that they felt relieved after the diagnosis. For instance, a Latino parent said, “ I thought during my pregnancy I did something wrong or should not have done something”. Whereas, a white parent responded, “Some relief to have a label for his behaviors that wasn’t about my parenting". 2) Sense of injustice among Latino parents. We found that only Latino parents reported that they felt a sense of injustice after their child’s diagnosis. A few of them brought up “Why me”, but no white parents reported the sense of unfairness in their responses. 3) Significant differences in knowledge, awareness of Autism and confidence in helping their child. Though both Latino and white parents had misinformation about ASD, more Latino parents reported that they didn’t know what autism was or their ignorance of the problem, while more white parents said that they felt relief and ready to move forward and seek treatment. For instance, a Latino parent stated, “Confused. Um, bitter. I didn’t understand what autism was.” while a white parent said “ we immediately began researching our options and pooling resources to help our child”. 4) Different reaction to the process of diagnosis. Though both Latino and White parents reported that they noticed something different in their child before the diagnosis, only white parents reported their disappointment of late diagnosis, or the way clinicians told them about the diagnosis. 

Conclusion: Our findings are consistent with the literature on parent reaction or resolution to their child’s diagnosis of ASD. The results indicate that in addition to culturally appropriate mental health support, Latino parents are in need of more knowledge on ASD, especially the causes of ASD after their child’s diagnosis.