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Improving Initial Age of ASD Diagnosis for Children from Culturally and Linguistically Diverse Communities: Asking the Parents
The average age of a diagnosis of autism spectrum disorder (ASD) for children in the U.S is still after four, despite ability to reliably diagnose at two (Baio et al., 2018). For children from underserved, culturally and linguistically diverse (CLD) communities, this delay to diagnosis can be substantially greater (e.g., Shattuck et al., 2009; CDC, 2018). One CLD community in the U.S. with limited representation in ASD research is the Hmong community, a growing and underserved Southeast-Asian refugee group with a population size of approximately 300,000. As access to early and intensive intervention covered through insurance often requires a clinical diagnosis of ASD, delayed diagnosis can also mean delayed intervention.
Objectives:
The importance of early intervention warrants efforts to identify potential strategies for supporting CLD parents in obtaining an earlier diagnosis of ASD for their child. To identify potential strategies, we conducted a survey study examining Caucasian and Hmong caregiver experiences with the diagnostic process.
Methods:
Our survey examined (a) parent-reported barriers and facilitators to obtaining a diagnosis of ASD, (b) parent perceptions/knowledge of ASD identification, and (c) sources parents access for information on ASD (e.g., scientific article, blog, Facebook). The survey was previously conducted with a sample of predominantly Caucasian parents of individuals with ASD from a university research registry (n = 121; 91% Caucasain). A second sample is being conducted with Hmong parents of individuals with ASD.
Results:
Results from our first sample indicate that dismissal of parent concerns from healthcare professionals, long waitlists for evaluations, and dismissal of parent concerns from friends/family were the most frequently parent-reported barriers to obtaining a diagnosis of ASD for their child. Conversely, doing research, having knowledge of appropriate development, and recognizing the importance of an identification were the most frequently parent-reported facilitators. Additionally, parents reported turning most frequently to the internet, other parents of children with ASD, healthcare professionals, and books for information on ASD. We predict group differences between Caucasian and Hmong caregivers will exist across all outcome variables. Findings from a previously conducted systematic literature review, examining what parents report were barriers and facilitators to obtaining a diagnosis of ASD for their child, will supplement survey results and also be discussed.
Conclusions:
The results from this study will inform key strategies for supporting CLD parents, particularly Hmong parents, in obtaining a diagnosis of ASD for their child earlier. Specifically, identifying barriers and facilitators identifies problem areas that can be targeted, as well as supportive factors that can be enhanced to support parents in obtaining a diagnosis of ASD. Additionally, an understanding of parent perceptions of identification and the sources parents access for information on ASD indicates the messages regarding identification that need to be reinforced as well as the effective methods for delivering those messages. This work also contributes to the limited literature base on ASD in CLD communities.