Understanding autism: Parents and pediatricians in historical perspective

Both primary care providers and subspecialists in pediatrics encounter families who are actively involved in the diagnosis and treatment of their children. Parents of children with an autism spectrum disorder in particular are often aware of scientific issues, and their expertise and desire for a medical cure for autism sometimes put them at odds with the medical team. We investigated the role of parents and advocates in autism research and treatment over the last 50 years. Our review of scientific publications and archival sources documents how parents and advocacy groups have done the following: (1) organized research funding; (2) constructed clinical research networks; (3) suggested new avenues for research; (4) popularized empirically based therapies; and (5) anticipated paradigmatic shifts in the understanding of autism. We believe that this historical account will help pediatricians and researchers recognize that families can contribute to expert understanding of complex medical conditions such as autism and that the existence of partnerships with families of children with autism is a critical component of future research and treatment programs.