Perceptions of Autism Diagnosis, Causes, and Expectations for Children Among Latino and White Families

Background and Purpose Parental perceptions of disability and treatment efficacy as well as help-seeking are impacted by cultural beliefs. Additionally, culture has been found to mediate outcomes for individuals with autism spectrum disorders (ASD) by influencing diagnosis, acceptance, and treatment of ASD. However, very little is known about perceptions of autism, the understanding of its causes, and parental expectations of Latinos raising children with ASD. Improved understanding of these issues among Latino parents may help to identify strategies to facilitate early diagnosis and help-seeking for Latino children with autism.

The purpose of this paper was to identify and compare qualitative responses to questions regarding perceptions of autism, causes of autism, and expectations for their children among Latino and non-Latino White.

Methods Forty-eight Latino caregivers and 59 non-Latino White caregivers were administered a questionnaire on their experiences with their child’s diagnosis and service use. Families were recruited through service agencies and support groups in Wisconsin. Children were between 3 and 21 years of age (μ=9.6; SD=4.5) at the time of the study. Spanish transcripts were translated into English by a bicultural/bilingual researcher. Qualitative responses to seven questions pertaining to reactions to diagnosis, causes, and expectations for their child were analyzed with NVivo software. Independent reviews of the transcripts were performed to identify themes and working definitions. A second independent review was conducted to further develop the themes. Once saturation was met, the researchers determined final coding.  

Results Similarities in reaction to diagnosis were found between Latino and non-Latino White families. Both groups expressed depression, sadness, and devastation upon receiving their child’s diagnosis. For instance, one Latino respondent stated “I fell into a depression,” as did a White mother who said “I was devastated.” When asked what they thought caused their child’s autism, Latino families were more likely to express uncertainty. Whereas, White families endorsed the impact of genetic predispositions. For example, a White respondent stated “I believe it’s genetic and that we carry a predisposition.” When asked about autism being a message from God, more Latino families than White families expressed agreement. In particular, Latinos reported that their child’s autism was a challenge, blessing, or test.  One Latino mother stated, “I think that special children need special parents, and I’m glad that God thought that I was going to be a good enough mother for him”. Lastly, future expectations of parents across both groups largely stressed independence as well as the development of communication and social skills among their children. 

Conclusions and Implications The results demonstrate similarities and differences in perceptions between Latino and White families. The similarities in reactions to diagnosis and expectations for their children suggest that families raising children with autism may have mutual experiences.  The differences in perceptions of causes suggest that Latino families conceptualize autism differently than White families. It is critical to understand the dissimilar beliefs among parents, as they may impact practice methods and the course of treatment families seek, subsequently affecting child outcomes.