Cultural Influences on Diagnostic, Treatment, and Research Perceptions of Parents Raising Children with Autism Spectrum Disorder: A Three-Article Dissertation
Background: Parents raising children with autism spectrum disorder (ASD) have many responsibilities, including advocating for their children’s needs, organizing their systems of care, and making decisions that best support their children’s development and the well-being of their family system. While researchers and practitioners have worked in tandem over decades to provide evidence-based services, there exists a longstanding gap in the access to and even quality of care delivered to families from marginalized backgrounds. Reducing disparities in ASD care requires concurrent attention to both research and practice approaches, yet much work is needed to realize this goal. Only by helping researchers and practitioners better understand socioeconomically, culturally, and linguistically diverse (SCLD) parents’ distinct experiences can disparities in ASD be addressed, and this was the overarching aim of the three-article dissertation. Purpose: The three studies examined how parents perceive (1) their children’s diagnosis and their ability to cope with raising children with complex needs; (2) recommended testing that may benefit their children’s treatment; and (3) research procedures that may encourage better representation of SCLD families in ASD research. Methods and Results: Article 1 used hierarchical linear regression analyses to explore whether parents’ sociodemographic variables predicted different perceptions of their children’s ASD diagnosis and family adjustment. Archival data from parents in North America raising children with ASD (N = 363) indicated that parents’ race and ethnicity, education level, and annual household income predicted their beliefs that they or treatment could be helpful in controlling their children’s ASD symptoms; their understanding of ASD; their experiences of emotional distress; their involvement in resources of support; and their families’ ability to manage stress. Article 2 used a separate archival dataset gathered from parents raising children with ASD (N = 290). Binomial logistic regression models suggested that parents were less likely to complete physician-recommended genetic testing when they believed their children’s ASD was caused by their own personal attributes (e.g., their own stress, behaviors, attitudes, etc.). Further, parents’ hopefulness about the utility of genetic testing increased when they observed more ASD symptoms. While it was not the main focus of the first two articles, the samples highlight an issue within the field of ASD research. While researchers have made recommendations to improve representation of SCLD populations in ASD research, none have solicited parent input on these processes. This gap contributes to SCLD families’ persistent underrepresentation in research and, ultimately, to the pervasive disparities in ASD care. With newly collected data from research naïve, SCLD parents raising children with ASD, Article 3 used thematic analysis of semi-structured interviews to illuminate how researchers may meet the needs and desires of parents who have not had the opportunity or desire to participate in ASD research. Results showed SCLD parents 1) view research as helpful, but poorly understood by them, in general; 2) are interested in research that benefits their children across settings and development; 3) have an altruistic posture toward research participation; 4) need incentives that provide practical support for them and their families; 5) experience logistical, social, and cultural barriers to research participation; and 6) are more likely to participate in research when multiple community-based recruitment strategies are used. Conclusion: Together, this three-article dissertation project examined how proxies for culture (i.e., sociodemographic variables) make a difference in parents’ perceptions for the ultimate benefit of increasing equity in ASD-related service delivery for affected children and families, especially those belonging to historically underserved and disenfranchised groups.
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