Marie Enderle, “Social Functioning Difficulties in Young Children with Neurofibromatosis Type 1”
Mentor: Bonita Klein-Tasman, Psychology
Neurofibromatosis type 1 (NF1) is an autosomal dominant genetic disorder affecting 1 in 3,500 people and is characterized by cognitive, academic and executive difficulties, as well as common reports of social functioning deficits. No published research has analyzed the sensitivity of various social measures in relation to children with NF1. The purpose of the current study is to analyze three different measures that examine social functioning for use with young children with NF1 with a focus on the specific items on which children have difficulties. Participants are sixty-two children with NF1 (ages 3-8) and their parent as well as thirty-nine siblings without NF1 (ages 3-8) and their parent. Parents completed the Social Skills Rating System (SSRS) questionnaire, the Behavior Assessment System for Children- 2nd Edition (BASC-2) questionnaire and participated in the Scales of Independent Behavior- Revised (SIB-R) parent interview. In our past research, we have seen that standard scores across these measures differ, suggesting that some measures are better at capturing social challenges than others. In the current investigation, we will specifically examine the frequency of difficulties on the items from each measure, to more concretely identify whether there are specific social skills that emerge as strengths and weaknesses for children with NF1 in their daily lives (using chi-square analyses). We expect that children with NF1 will show specific social deficits in comparison to the control group. Studies analyzing social functioning have the potential to help inform parents and teachers on intervention strategies specifically relating to children with NF1. Since previous research shows various negative outcomes related to social challenges, this research represents an area of study that needs to be further explored to help improve the daily lives of children with NF1 at school, with their peers, and in the home.