African American Parents' Beliefs About Autism Spectrum Disorders



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Current estimates indicate that autism spectrum disorder (ASD) affects approximately 1 in 68 children in the United States, a 123% increase between 2002 and 2010 (Baio, 2014). The trend in autism related research has paralleled the increase in prevalence, with the rate of publications increasing 3.9 fold since 2000 and continuously outpacing related fields. Despite the increased awareness and researcher interest in the disorder, the literature exploring the experiences of ASD in African American communities is minimal to non-existent. This is important, considering studies have indicated no racial differences in the epidemiology of autism (Fombonne, 2003; Yeargin-Allsopp et al., 2003). Furthermore, racial disparities in identification have been indicated in health and educational settings (Mandell, Listerud, Levy, & Pinto-Martin, 2002; Morrier, Hess, & Heflin, 2008). In particular, African American children receive a diagnosis on average 1.5 years later than their Caucasian counterparts and are more likely to be misdiagnosed prior to receiving an autism spectrum diagnosis (Mandell et al., 2009, 2002). In school settings, Morrier and Hess (2012) and Travers and colleagues (2011) have indicated mixed findings regarding the over- and under-identification of Black students in the special education category of autism. It is necessary to understand diagnostic delays for African American children because impairments associated with ASD are pervasive and influence the day-to-day functioning of individuals affected by the disorder. Children with ASD may experience difficulties with peer interactions, academic functioning, and behavior difficulties. There is no cure for ASD, though evidence supports early intervention as a treatment that improves outcomes for children (Howlin, Magiati, & Charman, 2009; Virués-Ortega, 2010). Delayed diagnosis also delays the age at which children begin to receive intervention, therefore, it is important to understand the role of culturally influenced variables in the identification of ASD. Because parents are key informants in the diagnostic process, and have unique perspectives about symptom recognition and child development, it is logical to begin the exploration of cultural factors by understanding the beliefs and attitudes of African American parents related to ASD. Quantitative and qualitative methods were used to assess the beliefs and experiences of African American parents of children with ASD. Forty-five parents completed an online questionnaire measuring their beliefs about ASD through the Illness Perception Questionnaire-Revised Autism (IPQ-RA; Al Anbar et al., 2010), in addition to demographic questions and questions related to types of treatments utilized. The IPQ-RA indicated that African American parents of children with ASD reported ASD to be a chronic, cyclical disorder associated with many negative consequences on their lives. They also reported a moderately high degree of control over their ability to control their child’s ASD and their child’s ASD related treatment. Parent education level and family history of ASD were the only significant predictors of parent beliefs.
A subgroup of six mothers who participated in the online survey, participated in one of three focus groups conducted in a Southern metropolitan city. Parents reported the initial behaviors they observed that caused concern about their child’s development, and described their beliefs about the various causes of their child’s ASD. The mothers shared difficult experiences with service providers that lead to the development of a “fighting” spirit within them to advocate for their children. Finally, the mothers illustrated the difficulties of raising a child with ASD while highlighting family member reactions, lack of support from church, cultural conflict with behavioral intervention strategies, and the need for more education about ASD in the African American community. Overall, the results of this study suggest that African American parents are resilient in facing distinct challenges of raising a child with ASD. Implications are provided to address the multi-layered needs highlighted by the mothers. Further research is required to investigate African American parent beliefs with a larger sample that includes a larger range of children ages and socioeconomic status.



African Americans, Black, Autism spectrum disorder (ASD), Parents, Children, Communities, Perception