Stony Brook Guidelines on the ethics of the care of people with Autism and their families

• Published in: Journal of autism and developmental disorders Vol. 43; no. 6; pp. 1473 - 1476
• Main Authors: Post, Stephen G, Pomeroy, John, Keirns, Carla C, Cover, Virginia Isaacs, Dorn, Michael Leverett, Boroson, Louis, Boroson, Florence, Coulehan, Anne, Coulehan, Jack, Covell, Kim, Kubasek, Kim, Luchsinger, Elizabeth, Nichols, Shana, Parles, James, Schreiber, Linda, Tetenbaum, Samara P, Walsh, Rose Ann
• Format: Journal Article
• Language: English
• Published: Springer 01-06-2013
• Subjects: Autism; Care and treatment; Demographic aspects; Ethics committees; Health aspects; United States
• ISSN: 0162-3257; 1573-3432
• DOI: 10.1007/s10803-012-1680-z

The increased prevalence of autism spectrum disorders (ASD), with associated societal and clinical impacts, calls for a broad community-based dialogue on treatment related ethical and social issues. The Stony Brook Guidelines, based on a community dialogue process with affected individuals, families and professionals, identify and discuss the following topics: treatment goals and happiness, distributive justice, managing the hopes for a cure, sibling responsibilities, intimacy and sex, diagnostic ethics, and research ethics. Our guidelines, based not on "top-down" imposition of professional expertise but rather on "bottom-up" grass roots attention to the voices of affected individuals and families speaking from experience, can inform clinical practice and are also meaningful for the wider social conversation emerging over the treatment of individuals with ASD.