Transitioning to Independence in Adulthood: What Helps? What Are the Barriers? — Panel | NFXF (original) (raw)

Transitioning to Independence in Adulthood: What Helps? What Are the Barriers? — Panel

With Leonard Abbeduto, Jessica Klusek, Julie Lounds Taylor, and Angela John Thurman

Few adults with Fragile X syndrome meet standard expectations in education, employment, peer relations, self-care, and their place of residence. In fact, up to 90% of males and 56% of females achieve only very low to moderate levels of independence as adults relative to their typically developing peers.

Limited independence can create financial and psychological challenges for families, limit the opportunities for community participation, and lower the quality of life for adults with FXS. Our expert panel presents research-based information on the factors that promote and hinder the transition to independence. Originally presented at the 2020 NFXF International Fragile X Conference.

About the Speakers

Leonard Abbeduto, PhD Professor, Department of Psychiatry and Behavioral Sciences & Director, UC Davis MIND Institute

Leonard Abbeduto’s research is focused broadly on the development of language across the lifespan in individuals with neurodevelopmental disorders and the family context for language development. His research has been funded continuously by the NIH since 1985.

His current research is focused on understanding variation in language outcomes in various conditions associated with intellectual disability, the measurement of treatment effects in clinical trials, and the use of distance technology to deliver behavioral treatment.

Dr. Abbeduto has published over 200 articles, chapters, reviews, editorials, and books on Fragile X syndrome, autism, Down syndrome, and other disabilities.

Jessica Klusek, PhD, CCC-SLP Associate Professor, University of South Carolina

Jessica Klusek received her doctoral degree in speech and hearing sciences from the University of North Carolina at Chapel Hill. She followed her doctoral training with an NIH-funded postdoctoral fellowship in psychology at the University of South Carolina, where she completed interdisciplinary training in physiology, psychology, and genetics. Dr. Klusek is also a certified speech-language pathologist.

Julie Lounds Taylor, PhD
Associate Professor, Vanderbilt University Medical Center, Nashville

Julie Lounds Taylor received her doctorate in developmental psychology from the University of Notre Dame and completed a post-doctoral fellowship at the Waisman Center, University of Wisconsin–Madison. Her research focuses on understanding the factors that promote positive outcomes for adults with autism spectrum disorder and their families, particularly during the transition to adulthood. She was the 2014 recipient of the American Association on Intellectual and Developmental Disabilities Early Career Award, is an associate editor for Autism: The International Journal of Research and Practice, and is a member of the United States Department of Health and Human Services Interagency Autism Coordinating Committee.

Angela John Thurman, PhD
Research Scientist, UC Davis MIND Institute

Angela John Thurman’s research at the MIND Institute focuses on characterizing the dynamic processes underlying the development of language and other skills in individuals with neurodevelopmental conditions, particularly Fragile X syndrome, autism, Down syndrome, and Williams syndrome. The long-range goal is that this work will help identify the extent to which similar and different processes should be targeted in intervention efforts across neurodevelopmental conditions.