Improving Access to Rural Mental Health Services Specific to Autism Spectrum Disorder

Background: Autism Spectrum Disorder (ASD) is a developmental disorder comprised of deficits in social communication and the presence of restricted interests and repetitive behaviors (APA, 2013). It is estimated to impact 1 in 59 children in the U.S. (Baio et al., 2018), affecting the individual’s developmental trajectory in communication, social competence, and adaptive behavior. Early identification and intervention can improve outcomes for children with ASD (National Research Council, 2001), but access to such services is not equal across all demographic groups. Rural communities face significant challenges regarding the availability and adequacy of services for children with ASD due to various barriers. Specifically, the Appalachian Region is highly underserved as seen through numerous indicators such as higher mortality rates, higher number of unhealthy days, higher rates of obesity, and higher poverty rates.

Objectives: The current study aimed to identify barriers and strengths of rural communities in Southwest Virginia through mixed-methods analysis.

Methods: Quantitative and qualitative data were collected from questionnaires and focus groups, respectively, completed by caregivers and service providers. Six focus groups were conducted (3 with caregivers and 3 with providers) from the Mount Rogers Community Services Board catchment area, in Galax city, Smyth county, and Wythe county of Virginia. Caregivers included parents and grandparents of children with ASD aged 5-21 years. Providers included professionals who provided treatment/supports for children with ASD.

Total participants consisted of 15 caregivers and 33 providers. Caregivers reported on barriers related to accessing ASD services, as well as types of services that they perceived were important but lacked. Providers reported on their barriers with providing services, difficulties of their clients accessing ASD services, and the types of services that they perceived were important but lacked availability.

Results: Quantitative findings indicated that caregivers had difficulties accessing ASD services due to few providers available (66.7%), few providers with ASD knowledge or training available (66.7%), geographic isolation (40%), and affordability (40%). Additionally, providers reported that they had difficulty providing ASD services due to lack of resources (48.5%) and lack of ASD knowledge (39.4%). Qualitative findings indicated that this region lacks 1) sufficient resources for ASD diagnosis and treatment, and therefore more providers are needed, especially with specific training in ASD, 2) sufficient information, educational, and training resources, and therefore caregivers need additional education related to autism and what it entails, 3) sufficient personal support resources for caregivers, and therefore caregivers struggle with child behavior and mental health (social skills, communication, aggression, anxiety, trauma), and 4) coordination among medical providers, providers in public schools, and other community providers.

Conclusions: Overall, the region’s needs related to the diagnostic services and treatments of ASD are multi-faceted, and the needs of availability, access, and affordability must be addressed.