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Brief report: Stony brook guidelines on the ethics of the care of people with autism and their families

  • Stephen G. Post
  • , John Pomeroy
  • , Carla C. Keirns
  • , Virginia Isaacs Cover
  • , Michael Leverett Dorn
  • , Louis Boroson
  • , Florence Boroson
  • , Anne Coulehan
  • , Jack Coulehan
  • , Kim Covell
  • , Kim Kubasek
  • , Elizabeth Luchsinger
  • , Shana Nichols
  • , James Parles
  • , Linda Schreiber
  • , Samara P. Tetenbaum
  • , Rose Ann Walsh
  • Stony Brook University
  • Press News Group
  • Developmental Disabilities Institute
  • ASPIRE Center for Learning and Development
  • Smithtown Pediatrics
  • Maryhaven Center for Hope
  • Autism Speaks Inc.

Research output: Contribution to journalArticlepeer-review

5 Scopus citations

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.

Original languageEnglish
Pages (from-to)1473-1476
Number of pages4
JournalJournal of Autism and Developmental Disorders
Volume43
Issue number6
DOIs
StatePublished - Jun 2013

Keywords

  • Autism
  • Clinical practice
  • Ethics
  • Goals
  • Social issues
  • Treatment

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