Brief Report: Stony Brook Guidelines on the Ethics of the Care of People with Autism and Their Families
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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.
KeywordsAutism Ethics Clinical practice Treatment Social issues Goals
This paper is dedicated to the memory of Louis Boroson and Florence Boroson who both passed within 6 months of the completion of the dialogue series. We also wish to acknowledge the staff of the Cody Center for Autism and Developmental Disabilities which hosted most of our sessions, Pamela Block who was able to participate in several of the sessions and also prepared detailed comments on our early draft findings, and invited parents and self-advocates who contributed so much to the success of the sessions.