Co-designing a novel service delivery pathway to increase access to autism identification and care within a non-profit community organization serving culturally and linguistically diverse families

Culturally and linguistically diverse families experience greater challenges accessing timely, autism-specialized care relative to non-culturally and linguistically diverse families, and ultimately experience less optimal health outcomes. Alternative pathways to access autism care for culturally and linguistically diverse families are needed; however, the features of a novel pathway remain unclear. A co-design process was used with a culturally embedded non-profit community organization to develop a novel service delivery pathway for increasing access to autism services for culturally and linguistically diverse families in the United States. Twenty-three individuals participated in eight, 2-hour co-design sessions. Participants included front-line staff (seven non-specialist providers), management leaders (two program supervisors and two organization directors), and eight end-users (caregivers) from seven understudied cultural and linguistic groups (i.e. Somali Mai Mai, Swahili, Arabic, Dari/Pashto, French, Amharic, and Tigrinya) and four autism specialists. The co-design identified five key design features: respecting diversity, prioritizing caregiver agency, increasing accessibility, minimizing stigma, and maximizing feasibility. These features informed the co-development of a novel pathway to access autism identification and care for culturally and linguistically diverse families that pairs navigation services with the dissemination of brief, culturally sensitive, and evidence-based parenting and coping strategies. This power-sharing, community-academic partnership may serve as a model for improving equity in autism care.Lay AbstractEarly, specialized support is important for helping young autistic children learn and develop. However, families from different cultural backgrounds often find it challenging to access this early help. A university lab and a community organization worked together to create a new way for these families to access autism services. We used a co-design approach, which involves gathering feedback from a variety of people involved in autism care, including service providers, community leaders, caregivers, and autism experts. Twenty-three individuals participated in eight co-design sessions that were two hours each. Participants were from different language groups, including Somali Mai Mai, Swahili, Arabic, Dari/Pashto, French, Amharic, and Tigrinya. These sessions helped us identify five important factors important for improving access to needed services: being mindful about cultural differences between groups, empowering caregivers, providing information and support for accessing services, reducing stigma around autism, and ensuring the service is practical to use. Based on these factors, we developed a new pathway for families to access autism care. This new approach includes providing help in navigating the medical and educational systems and provides short, culturally appropriate advice for parenting and coping. This project shows how working together with communities can create more fair and effective ways to provide autism support.