title: Brief report: Stony Brook Guidelines on the ethics of the care of people with autism and their families.
abstract: 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.
authors.affiliation: Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University, HSC Level 3, Rm 080, Stony Brook, NY, USA. stephen.post@stonybrook.edu
authors.forename: Stephen G
authors.initials: SG
authors.lastname: Post
authors.forename: John
authors.initials: J
authors.lastname: Pomeroy
authors.forename: Carla C
authors.initials: CC
authors.lastname: Keirns
authors.forename: Virginia Isaacs
authors.initials: VI
authors.lastname: Cover
authors.forename: Michael Leverett
authors.initials: ML
authors.lastname: Dorn
authors.forename: Louis
authors.initials: L
authors.lastname: Boroson
authors.forename: Florence
authors.initials: F
authors.lastname: Boroson
authors.forename: Anne
authors.initials: A
authors.lastname: Coulehan
authors.forename: Jack
authors.initials: J
authors.lastname: Coulehan
authors.forename: Kim
authors.initials: K
authors.lastname: Covell
authors.forename: Kim
authors.initials: K
authors.lastname: Kubasek
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Luchsinger
authors.forename: Shana
authors.initials: S
authors.lastname: Nichols
authors.forename: James
authors.initials: J
authors.lastname: Parles
authors.forename: Linda
authors.initials: L
authors.lastname: Schreiber
authors.forename: Samara P
authors.initials: SP
authors.lastname: Tetenbaum
authors.forename: Rose Ann
authors.initials: RA
authors.lastname: Walsh
mesh_terms: D001321:Autistic Disorder / Q000523:psychology / Q000534:rehabilitation / Q000628:therapy; D006801:Humans; D008605:Mental Health Services / Q000941:ethics / Q000331:legislation & jurisprudence / Q000592:standards; D017410:Practice Guidelines as Topic