It Takes a Village: Communication and Management in Care for Adults with Autism

• In Event: 120 - Regular Session. Disability and Social Life

Abstract

Despite the focus in autism research on children with the condition and finding a cause and a cure, most individuals with autism are adults and the challenges associated with care are much more central to the daily experiences of associated families and professionals. Drawing on a four year ethnographic study that followed thirteen families with adult members with autism, this paper explores and analyzes how barriers to communication with individuals with the diagnosis and managing other caretakers are central features of experience of providing care. In focusing on the challenges of communication and management, this paper explores the socially embedded properties of the lived experience of autism. Understanding how barriers to communication and the challenges of management intertwine with one another and are related to the complexity of the condition in the current politico-economic environment help paint a more complex and socially contextualized representation of in autism in contemporary America.

Author

• Benjamin DiCicco-Bloom, Hamilton College