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Thursday, July 19, 2012

The Perceived Burden

Themba Carr and Cathy Lord have a new article in Autism.  The abstract:
The purpose of this study was to examine the stability of mothers’ perceptions of the negative impact of having a child with ASD in a sample of African American and Caucasian families as their children transitioned to early adolescence. Participants were mothers and children participating in an ongoing longitudinal study of children referred for diagnosis of ASD at age two. Analyses included data from two time points, when child participants were approximately 9 and 14 years old. Linear mixed model analyses were used to examine the relationship between the primary outcome variable, mothers’ perceived negative impact across time, and hypothesized predictors. Negative impact increased significantly from late childhood to into adolescence. However, African American mothers with lower education reported significantly lower levels of perceived negative impact at both time points. Findings show that for some families, the transition to adolescence is a period in which mothers experience increased amounts of negative impact and highlight the importance of examining the influence of socioeconomic variables. Furthermore, data suggest that there may be cultural differences mediating the relationship between maternal education, ethnicity, and perceived negative impact. Implications for the importance of including families from varying levels of socioeconomic status in ASD research are discussed.
Medical Daily adds more detail on the study:
Results revealed the amount of hours of treatment African-American children received compared to white children was significantly lower. By age nine white children received 1,856 more hours and by 14 the disparity between hours increases to 1,958.
Along with educational levels, cultural differences may also affect a mother’s perception of autism. In African-American communities where women have stronger traditional social networks and are regarded as an excessively religious person, may possibly be protective and see caring for a child with autism as “less of a burden and more of an accepted family obligation.”

According to Carr, “It could be that families that perceive children as a greater burden advocate more for services, or that having fought for services, some families are more aware of their children's negative impact on their lives.” She continued, “It may also be that parents perceive lower levels of negative impact of caring for their child do not feel as great a need to access services.”