Parents’ and service providers’ perspectives of services for autism in the rural region of Northern Arizona.

Abstract

Children with autism and their families living in rural settings face significant barriers when accessing adequate diagnostic, treatment, and care coordination services. This mixed-method study examined services used for children with autism in rural Northern Arizona using a parent-reported (N = 49) and service provider-reported (N = 36), online survey. Results indicated that parents on average experienced a delay in diagnosis with limited access to professional services, such as care coordination. Findings suggested parents' perceived lack of expertise among rural autism providers compared to service providers who saw themselves as holding expert knowledge but did not see themselves as an expert in their rural community. For rural families, telehealth was not found to be a viable option and reported they preferred in-person intervention services. Public Health Significance StatementFindings underscore the importance of autism service continuity and continued innovations to meet this need in rural areas in order to achieve public health impact. Implications for practice and future research are discussed.

Impact of COVID-19 on children diagnosed with autism spectrum disorder living in the rural regions of Arizona.

“…Bhat (2021) found families with higher socioeconomic status, younger children with ASD, or children requiring substantial support reported lower benefits from telehealth services. Feather et al (2024) also found that during the pandemic, parents living in rural communities were dissatisfied with the use of telehealth services, and service providers should assess whether a child is appropriate for telepractice or would be better served in person. Alternatively, children requiring minimal support and families of older children with ASD indicated online services were significantly beneficial, as the elimination of travel reduced the additional burden for caregivers (Bhat, 2021).…”

“…By attending to the caregivers’ well-being and checking in with their stress levels during times of crisis, service providers can support the adjustment and provide targeted interventions, whether for the caregiver or suggestions on how to manage their child’s symptoms. Feather et al (2024) found that targeted knowledge- and skill-focused mediated interventions to be extremely helpful to combat parental fatigue and boost well-being. Further, parent-mediated intervention programs can help parents improve the main problematic areas of their child’s core ASD symptoms (Feather et al, 2024).…”

“…Feather et al (2024) found that targeted knowledge- and skill-focused mediated interventions to be extremely helpful to combat parental fatigue and boost well-being. Further, parent-mediated intervention programs can help parents improve the main problematic areas of their child’s core ASD symptoms (Feather et al, 2024). Such interventions for their child(ren) could reduce the impact of stress, depression, and anxiety related to the pandemic among the parent and the child with ASD.…”

“…Living in rural regions in the United States, children with autism spectrum disorder (ASD) and their families face notable challenges when accessing diagnostic, treatment, and care coordination services (Feather et al, 2024). Families living in rural communities have reported experiencing significant barriers to accessing services for their children with ASD related to their geographic location (Antezana et al, 2017).…”

“…Prior to the COVID-19 pandemic, researchers consistently established that children with ASD and their families in rural areas were met with significant barriers in terms of accessing quality diagnostic, treatment, and care coordination services (Antezana et al, 2017; Feather et al, 2024). Following the onset of the pandemic, people residing in rural communities were likely to endure greater disruptions in an already strained provision of services.…”