Related Experiment Video
Updated: Aug 23, 2025

A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
Published on: July 31, 2017
Re-Consenting Pediatric Research Participants as Legal Adulthood Approaches: Lessons from the SPARK Autism Study
Connie Anderson1, Alan Iampieri2, Leah Franklin2
1Department of Health Sciences, Towson University, 8000 York Road - CHP Dean's Office, Towson, MD, 21252, USA. connieanderson@towson.edu.
Abstract:
To explore issues surrounding re-consenting youth in longitudinal studies as they reach legal adulthood interviews were conducted with 46 parents plus 13 autistic teens enrolled in the Simons Foundation Powering Autism Research for Knowledge (SPARK) study. Qualitative analysis focused on family sensitivities regarding guardianship decisions, transition concerns, and the re-consenting process. Questions regarding guardianship were difficult for parents unsure of a teen's future status. Mothers were key facilitators of re-consenting for soon-to-be-independent teens. As legal adulthood approached, parents were willing to assist teens with re-consenting but needed support, asking for multiple contacts, transition resources, and explanatory materials from the research team. Most teens were not cognizant of SPARK but willing to continue participation once made aware.
Related Concept Videos
Longitudinal Research
Revisionist Views of Adolescent and Adult Cognition
Ethics in Research
Autism Spectrum Disorder
These core symptoms manifest differently among individuals, ranging from mild to severe. The disorder's complexity extends beyond its clinical presentation, encompassing a diverse range of biological, cognitive, and sociocultural influences.
Piaget's Stage 4 of Cognitive Development
Abstract Reasoning and Hypothetical-Deductive Thinking
Unlike the concrete operational...
Emerging Adulthood

