The prevalence of Autism Spectrum Disorders (ASD) has risen markedly over recent years and is now a preeminent national public health concern. Individuals with ASD exhibit deficits in social interactions, verbal and nonverbal communication, and repetitive behaviors or interests that persist over a lifetime. As a result, demands of caregiving for individuals with ASD place heavy burdens on families who must provide long-term care. Because many popular ASD interventions are not evidence-based, families need guidance in identifying and accessing evidence-based interventions that are most suitable. This is particularly true for families in poor, rural areas that lack the most up-to-date resources and, therefore, are more likely to use non–evidence-based interventions that can be harmful.
Our goal is to enhance discussions between 1) a community advisory board (CAB) comprising parents, clinicians who treat those with ASD (including a pediatrician in private practice), teachers, and high-functioning adults with ASD who live in rural, underserved areas of northern Florida; and 2) UF researchers with patient-centered outcomes research expertise. We will build a team that will meet regularly to identify intervention modalities most prescribed and effective for individuals with ASD within this population. The ultimate purpose of the CAB is to identify two interventions that are most important to patients, make the interventions available in underserved areas, and test the interventions in a larger comparative effectiveness research study. The long-term goal is to help individuals with ASD progress from the fringes of intervention to the center by implementing the most current evidence-based treatments.
VIDEO (below): Including Families in Autism Research
This Pipeline to Proposal award aims to engage families with autistic children to determine their needs and come up with easier to take care of family members.