Bridging the Cultural Gap: An Exploration of Coaching, Communication, and Challenging Behavior in Diverse Families Raising Nonvocal Individuals with Autism Spectrum Disorder and Intellectual and Developmental Disabilities

Abstract

There has been a rise in the global prevalence of autism spectrum disorder (ASD) and intellectual and developmental disabilities (IDD), particularly among those who are nonvocal or minimally vocal and display challenging behavior, such as aggression and self-injury. Additionally, parental involvement plays a crucial role in reducing these behaviors and promoting effective communication. However, research involving parents and caregivers from culturally, ethnically, and linguistically diverse (CLD) backgrounds, especially regarding the customization of practices to meet their needs and priorities, remains limited. Therefore, examining the effects of evidence-based interventions such as functional communication training (FCT), applied behavior analysis (ABA), and behavioral skills training (BST) among minority populations is essential. This dissertation aims to fill this gap by examining the current state of parent-implemented interventions and the coaching procedures that support them. Chapter 2 provides a systematic review of the literature on parent-implemented FCT to reduce challenging behaviors in nonvocal and minimally vocal children with ASD and IDD from CLD backgrounds. The review analyzed ten studies and found that parent-implemented FCT was directly associated with decreases in challenging behaviors and increases in independent communication. However, only half of the studies reported culturally adapted practices, and data on the generalization and maintenance of learned skills were limited. Chapter 3 presents a qualitative study exploring the experiences of Arab caregivers living in the United States (U.S.) regarding coaching and the implementation of evidence-based interventions. The importance of culturally tailored interventions and coaching for these caregivers was particularly emphasized. The findings identified four major themes, discussed alongside their subthemes, limitations, and implications for practice and research. Chapter 4 applies insights from the qualitative study to offer practical recommendations for practitioners and service providers working specifically with Arab caregivers. Overall, this dissertation suggests that future research and practice should involve families and caregivers of individuals with ASD and IDD as active partners rather than passive recipients. This engagement can deepen understanding of cultural differences within each minority group, strengthen school-home relationships, and improve the quality of life for both caregivers and their loved ones.