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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Acknowledgements
Pamela Block, PhD; Louis and Florence Boroson (This paper is dedicated to the memory of Louis Boroson and Florence Boroson who both passed within six months of the completion of the dialogue series); Anne Coulehan, MSW ACSW CPE NACC, Chaplain, Stony Brook University Medical Center; Jack Coulehan, PhD MPH, Senior Fellow, Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University; Kim Covell, Editor with the Press News Group, and Co-Founder of AweinAutism.com; Kim Kubasek, Associate Executive Director, Developmental Disabilities Institute; Elizabeth Luchsinger, MS; Shana Nichols, PhD, Clinical Psychologist and Director of ASPIRE Center for Learning and Development; James Parles, MD, Smithtown Pediatrics; Linda Scheiber, PhD, Director of Clinical Services, Maryhaven Center for Hope; Samara Tetenbaum, PhD, Psychology Postdoctoral Fellow, Co-Director of ASPIRE Center for Learning and Development; Rose Ann Walsh, Autism Speaks.
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Post, S.G., Pomeroy, J., Keirns, C. et al. A Grassroots Community Dialogue on the Ethics of the Care of People with Autism and Their Families: The Stony Brook Guidelines. HEC Forum 29, 93–126 (2017). https://doi.org/10.1007/s10730-017-9320-9
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DOI: https://doi.org/10.1007/s10730-017-9320-9