Many individuals with PWS have behaviors and tendencies that are like those seen in autism spectrum disorders (ASD). Repeating questions, the need for “sameness”, and repetitive behaviors – these things are so common in PWS and in autism. The relationship between PWS and autism was researched recently by the PWS experts at the Vanderbilt Kennedy Institute at Vanderbilt University. It was the first large (146 individuals) study in which the children were not just screened for autism using standard autism checklists, but also examined by an autism expert qualified to make the diagnosis.
Screening tools are the first step on the path to an autism diagnosis. Every child they tested who had a positive autism screening test did NOT have ASD, but every child with ASD did have a positive screen. There were 14 children with positive screens who did not meet criteria for a diagnosis of ASD.
ASD currently affects 1-2% of all children and many more boys are diagnosed than girls. In this study, PWS+ASD was equal in both genders. 18 children (12.3%) were given a diagnosis of ASD (PWS+ASD) in this group of 146 children, a significantly higher rate. Autism researchers and PWS researchers continue to seek answers and understanding, and both groups of children benefit from these efforts.
Click below to see the entire research study:
“Diagnosis and characteristics of autism spectrum disorders in children with Prader-Willi syndrome”
Elisabeth M. Dykens, Elizabeth Roof, Hailee Hunt-Hawkins, Nathan Dankner, Evon Batey Lee,
Carolyn M. Shivers, Christopher Daniell and Soo-Jeong Kim
Journal of Neurodevelopmental Disorders (2017) 9:18
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.