Feasibility study for large-scale study on family caregiving and the social lives of adults with autism 

Review of the literature in 1997 revealed a lack of information on the consequences of lifelong caregiving among parents of adults with autism and a lack of information on the range of supports needed to ensure fulfilling lives for adults with autism. The NLM Family Foundation supported a comprehensive search of the literature on issues facing families of adults with autism, for an assessment of various sampling strategies necessary for the conduct of a major research study on families of adults with autism, and for the preparation of a proposal for the conduct of research on families of adults with autism. The funding was used to finalize sample recruitment strategies, establish a Parent Advisory Group, develop and pilot-test screening procedures, finalize research design, and recruit and screen approximately 400 families. The goal of the subsequent study was to conduct the first large-scale investigation of families of adults with autism and of the social lives of adults with autism.