Tiered Approach to Autism Diagnoses - Across the US, children and families are facing a “waitlist crisis” for autism assessment: year(s) long delays between developmental concerns and formal autism diagnosis, which is needed for children to receive early, autism-specific interventions that improve outcomes. There is value to the traditional, often multi-disciplinary, diagnostic evaluations conducted by specialists; however, it is not clear that this level of detail is necessary for every child to begin intervention. Currently, this traditional, time-consuming approach acts as a bottleneck to service entry for many children. It is critical to establish new processes that streamline diagnosis, allowing children to begin services as early as possible. Indeed, up to half of the autism population has a clinically unmistakable presentation that is often immediately recognizable. Autism diagnosis in primary care is an emerging practice that may accelerate diagnosis and improve disparities in access to care. Pediatric primary care clinicians (PCCs) are often the only health care professionals to interact with families during early childhood; many PCCs have a trusting and longitudinal relationship with families and are knowledgeable about local resources. These factors may render an autism diagnosis from a PCC both more efficient and more acceptable to families. We propose to test aspects of a tiered diagnostic approach in which PCCs diagnose autism in children for whom diagnosis is clear, and refer less definite cases and cases for which there is screening or parental concern even if there is no PCC concern for telehealth evaluations with experts who can further diagnose or rule out autism for an additional subset of cases, alleviating the burden on specialty services to evaluate more complex cases with traditional in-person assessments. The specific aims are to compare PCCs’ diagnostic classification of children during well-child visits with diagnoses made by autism specialists (n = 250), as well as to assess the proportion of children for whom PCCs can reliably diagnose or rule out autism (feasibility). In addition, we will assess PCC and child factors related to more accurate PCC classification; these factors include PCC attitudes about early detection, PCC screening practices, training in autism, years of experience, and familiarity with the child as well as child sex, age, and autism severity. It is critical to understand when PCC classifications of autism are most accurate, to identify malleable factors for subsequently improving PCC accuracy. Finally, we will examine the acceptability of the tiered diagnostic approach for both PCCs and caregivers. In addition, parent follow-up surveys 6 months after evaluation will assess outcomes following the diagnosis in terms of start of services, and retrospective view of the tiered approach to autism diagnosis. This project is significant as it seeks to establish an innovative, evidence-based model of care that will improve efficiency in an overtaxed system, ultimately increasing access to autism services for more children at an earlier age. Accordingly, the proposed study directly addresses the Interagency Autism Coordinating Committee’s Question 1 about early detection of autism.
