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      A Grassroots Community Dialogue on the Ethics of the Care of People with Autism and Their Families: The Stony Brook Guidelines.

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          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.

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          Author and article information

          Journal
          HEC Forum
          HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues
          Springer Nature
          1572-8498
          0956-2737
          Jun 2017
          : 29
          : 2
          Affiliations
          [1 ] Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University, Stony Brook, NY, USA. Stephen.Post@StonyBrookMedicine.edu.
          [2 ] 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.
          [3 ] The Cody Center for Autism and Developmental Disabilities, Stony Brook University, Stony Brook, NY, USA.
          [4 ] Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University, Stony Brook, NY, USA.
          Article
          10.1007/s10730-017-9320-9
          10.1007/s10730-017-9320-9
          28397033
          20ea8413-f6d7-4f9b-aeb6-430cb12f984b
          History

          Autism,Clinical practice,Ethics,Social issues,Treatment
          Autism, Clinical practice, Ethics, Social issues, Treatment

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