There has been a marked increase in the incidence and prevalence of autism spectrum disorder (ASD) in recent years, with current estimates of one in 68 children diagnosed with ASD and 3.5 million Americans living with ASD (CDC 2017). Symptoms of ASD—for example, impairments in social interaction, communication, repetitive behaviors—emerge in early childhood and span across adulthood. While ASD may not directly affect average life expectancy, the complex co-morbidities that often accompany ASD (e.g., seizures, feeding disorders) can greatly impact quality of life. At present, there is no known cause or cure for ASD. Literature supports the importance of early diagnosis and intervention to improve long-term developmental outcomes.
While the importance of early diagnosis and intervention is clear, it remains unclear how and when to shift interventions to adequately fit the evolving needs of aging individuals with ASD. Additionally, as these children transition to adults and parents are unable to care for them, a growing question at the forefront of clinicians’ and parents’ minds is, “What next?” Therefore, it is the goal of this project to form partnerships among key stakeholders such as clinicians, adults with ASD, caregivers, and researchers to address this topic of concern and to provide meaningful patient-centered outcomes. An autism advisory board, alongside two established groups at Emory Autism Center and Georgia Technical Institute, consisting of key stakeholders will engage monthly and at scheduled workshops to open communication on these issues and to develop meaningful comparative effectiveness research questions.