Examining the Role of Social Workers in Reducing Disparities Affecting Children with ASD and Their Families in Rural Communities

Background and Purpose:  Significant disparities in access to diagnosis and services have been identified for children with Autism Spectrum Disorders (ASD) in rural communities. Compared to children residing in urban areas, children residing in rural areas are less likely to be identified and diagnosed with ASD (Dickerson et al., 2017) and are identified much later (Kalkbrenner et al., 2011). However, little is known about the experiences of service providers and parents of children with ASD who reside in rural communities. By identifying specific barriers, needs, and solutions from these stakeholders, recommendations can be made to address the disparities that affect children with ASD and their families in these communities.

Methods: Service providers and parents of children and youth with ASD residing in rural counties in Illinois were recruited to participate in focus groups. The rural counties met the definitions outlined by the Office of Rural Health Policy (2016). Service providers and parents were recruited through schools, community organizations, health care agencies, and support groups. Focus groups were held separately for service providers and parents to allow for open discussion and took place at local community agencies. Two experienced investigators led the focus groups following a specified order of topics and prompts. The focus groups were semi-structured to provide participants with an opportunity to share openly. Overall, eight parents and eight service providers participated in the focus groups. The focus groups were audio-recorded to allow for offline transcription.

Results: Parents reported significant barriers in accessing diagnostic and therapeutic services and even greater challenges in coordinating services and managing their child’s care. Parents indicated they took on an educator role in providing teachers, speech therapists, and community members with information about ASD. Overall, parents reported spending substantial time and effort in care coordination and resource finding, with a significant effect on their financial, physical, and emotional health. Parents also experienced challenges in accessing mental health services for their child with ASD and co-occurring mental health conditions, especially during crises or emergency situations. This was primarily due to mental health providers’ limited knowledge of ASD. Service providers reported challenges in coordinating referrals and services with other providers and supporting parents. Opportunities for education and training on ASD were limited in availability and scope, with even fewer opportunities to learn about evidence-based practices. Furthermore, providers identified a significant need for social workers who could deliver psychoeducation, training, and support to parents of children with ASD who experienced additional financial and emotional needs.

Conclusion and Implications: Little is known about the experiences of service providers and parents of children with ASD in rural communities. Social workers have a proud history of supporting underserved and vulnerable communities. Our review of service provider and parent perspectives identified social work as a critical element in navigating the systems of care effectively. Social workers can also address mental health service needs of children with ASD. These results suggest that social workers can have a significant impact on reducing disparities among children with ASD and their families in rural communities.