Needs and Priorities of Providers Serving Children and Youth with Autism Spectrum Disorders in Rural Areas

Background: Research on Autism Spectrum Disorders (ASD) has found significant disparities in access to services and outcomes in rural communities. Screening instruments used to identify children with ASD are less valid and reliable when used among low-income and ethnic minority families in rural areas (Scarpa et al., 2013). Rates of diagnosis are also much lower in rural areas when compared to urban areas (Dickerson et al., 2016), and when children from rural areas are diagnosed, they are typically diagnosed much later than children from urban areas (Kalkbrenner et al., 2011). These disparities have been associated with a lack of primary and specialty care providers (Mandell et al., 2010). With more information about the needs, barriers, and priorities of providers in rural areas, we can increase the professional capacity to address the specific needs of children with ASD and their families within rural communities.

Objectives: The objective of the current study is to identify the unmet needs and priorities providers face in rural areas.

Methods: We focused on two rural counties in Illinois (USA). These counties were identified as rural by the Office of Rural Health Policy (2016) and were comprised of predominantly low-income households, with over 55% of children enrolled in school, considered eligible to receive free or reduced lunch. Educators, service providers, and other professionals who provided services to children/youth with ASD under 22 years of age were eligible to participate. Providers were recruited from schools, clinics, and community organizations. Two experienced investigators led the focus group discussions and followed a script on topics and prompts. The topics included sources of information, services provided/barriers to providing services, transition/future planning, impact of ASD on families and unwanted outcomes. The focus groups included a total of 8 participants and each lasted approximately 90 minutes. The focus groups were audio-recorded and transcribed to identify common themes.

Results: The focus group participants were special education teachers (n = 2), case managers/resource specialists (n = 2), early childhood administrators (n = 2), and speech-language pathologists (n = 2). All participants were currently active in their professions, providing direct services and supports to children with ASD and their families. The most prominent themes across both focus groups included limited opportunities for interprofessional collaborations and consultation as a barrier in providing consistent recommendations to families, and insufficient support for staff salaries and professional development on ASD. Themes within each topic (sources of information, service provision and barriers to providing services, transition/future planning, impact of ASD on families, and unwanted outcomes) will be presented along with recommendations to address high priority needs.

Conclusions: Little is known about the experiences of ASD service providers in rural areas. As many disparities in access to and receipt of services have been identified for children with ASD and their families in these areas, it is critical to identify ways to adequately address these disparities. By identifying the critical needs and priorities service providers experience in rural areas in the United States, greater efforts can be made to ameliorate these disparities.