title: A Grassroots Community Dialogue on the Ethics of the Care of People with Autism and Their Families: The Stony Brook Guidelines.
abstract: The increased recognition and reported prevalence of autism spectrum disorders (ASD) combined with the associated societal and clinical impact call for a broad grassroots community-based dialogue on treatment related ethical and social issues. In these Stony Brook Guidelines, which were developed during a full year of community dialogue (2010-2011) with affected individuals, families, and professionals in the field, we identify and discuss topics of paramount concern to the ASD constituency: treatment goals and happiness, distributive justice, managing the desperate hopes for a cure, sibling responsibilities, intimacy and sex, diagnostic ethics, and research ethics. The members of the dialogue core committee included doctors, ethicists, administrators, social workers, ministers, disability experts, and many family members of individuals with autism who were especially engaged in community activities on behalf of their constituency, including siblings, parents, and grandparents. Our guidelines are not based on "top-down" imposition of professional expertise, but rather on a "bottom-up" grass roots attention to the voices of affected individuals and families speaking from experience. These guidelines can inform clinical practice, but they also are 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, Stony Brook, NY, USA. Stephen.Post@StonyBrookMedicine.edu.|Department of Family, Population and Preventive Medicine, Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University School of Medicine, HSC Level 3, Rm 080, Stony Brook, NY, 11794-8335, USA. Stephen.Post@StonyBrookMedicine.edu.
authors.forename: Stephen G
authors.initials: SG
authors.lastname: Post
authors.affiliation: The Cody Center for Autism and Developmental Disabilities, Stony Brook University, Stony Brook, NY, USA.
authors.forename: John
authors.initials: J
authors.lastname: Pomeroy
authors.affiliation: Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University, Stony Brook, NY, USA.
authors.forename: Carla
authors.initials: C
authors.lastname: Keirns
authors.affiliation: The Cody Center for Autism and Developmental Disabilities, Stony Brook University, Stony Brook, NY, USA.
authors.forename: Virginia Isaacs
authors.initials: VI
authors.lastname: Cover
authors.affiliation: Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University, Stony Brook, NY, USA.
authors.forename: Michael Leverett
authors.initials: ML
authors.lastname: Dorn
mesh_terms: D001321:Autistic Disorder / Q000523:psychology / Q000534:rehabilitation / Q000628:therapy; D003142:Communication; D004989:Ethics; D006801:Humans; D008605:Mental Health Services / Q000941:ethics* / Q000592:standards; D010290:Parents; D017410:Practice Guidelines as Topic; D012919:Social Behavior
keywords: Autism; Clinical practice; Ethics; Social issues; Treatment