1-091 - Challenges Associated with Parental Consent to Early Intervention for Infants at High Risk for Autism Spectrum Disorder

Session Type: Conversation Roundtable

Integrative Statement

Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder where symptoms emerge over the first two years of life. Early detection and intervention is predictive of positive outcome. Even when children are diagnosed as early as age 2, diagnostic stability is strong throughout development, resulting in lifelong intervention and care. Ideally, intervention should begin when the earliest risk signs emerge prior to full symptom expression. Prospective studies on younger biological siblings of children with ASD allow for discovery of the earliest markers of the disorder given that these siblings have a 20 to 40-fold increase in genetic liability for the disorder. Investigators from the NICHD and Autism Speaks’ Baby Sibling Research Consortium have been studying the earliest risk signs for ASD in high-risk infants for the past decade. Currently, evidence of early predictors of ASD outcome have resulted in numerous intervention paradigms being offered to infants as young as 12 months of age. Yet, investigators are struggling to obtain parental endorsement that 1) these early and often subtle signs are actually present, and 2) these risk factors merit intervention. Consequently, investigators are faced with the challenge of parental resistance to consent for treatment, particularly in the context of randomized clinical trials, leaving many unanswered questions about the potential efficacy of extremely early intervention. This Conversational Roundtable will provide a forum for discussing the bioethical issues surrounding the study of prodromal autism and the risks and benefits of treating what may or may not result in full-blown symptomatology if left untreated.

Sub Unit

• Developmental Disabilities

Moderator

• Leslie Jeanette Carver, Univ of California San Diego

Panelists

• Celine Saulnier, Emory University

• Cheryl Klaiman, Emory University

• Rebecca Landa, Kennedy Krieger Institute

• Alice S Carter, University of Massachusetts, Boston