Longitudinal study of perceived negative impact in African American and Caucasian mothers of children with autism spectrum disorder

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.

Predictors of Age of Diagnosis for Children with Autism Spectrum Disorder: The Role of a Consistent Source of Medical Care, Race, and Condition Severity

“…Another possibility is that parents of different backgrounds self-refer for autism diagnosis at disparate rates. Carr and Lord (2013) found that African American mothers with lower education reported less negative impact related to having a child with ASD than Caucasian mothers. Feeling less caregiver burden may result in later diagnosis seeking by African American parents.…”

Are Non-intellectually Disabled Black Youth with ASD Less Impaired on Parent Report than Their White Peers?

“…To our knowledge, no studies have yet been conducted on ethnic differences in parent reporting on the BRIEF or the Vineland-II, outside of the standardization samples. However, some studies have also noted that Black mothers report lower perceived negative impact of having a child with ASD (Bishop et al 2007; Carr and Lord 2013). If parents do not experience symptoms of executive dysfunction, internalizing and externalizing behaviors, and adaptive deficits as problematic, they may be less likely to report their observation of these symptoms.…”

Annual Research Review: Re‐thinking the classification of autism spectrum disorders

“…Yet the number and intensity of RRBs at age 2 was a unique contributor, besides IQ and social and communication deficits, to prediction of a stable autism diagnosis at ages 9 (Lord et al., 2006). Repetitive behaviors also contribute to parental stress, level of accommodations which parents are able to make (Carr & Lord, 2012) and academic achievement (Venter, Lord, & Schopler, 1992). Including RRBs in a diagnostic algorithm (Gotham et al., 2007) or in general screeners, such as the SRS, increases specificity considerably while changing sensitivity very little.…”