Examining the Complex Experiences of Parents of Gifted Students with Autism Spectrum Disorder

Thursday, May 12, 2016: 5:30 PM-7:00 PM
Hall A (Baltimore Convention Center)
L. D. Rubenstein1 and S. M. Wilczynski2, (1)Educational Psychology, Ball State University, Muncie, IN, (2)Ball State University, Muncie, IN
Background:  Parents of students on the autism spectrum often experience higher levels of stress than both parents of typically developing children and parents of students with other disabilities. This stress can lead to fatigue, strained relationships, and increased levels of anxiety and depression. Understanding and promoting parents’ psychological well-being is essential not only for the parents themselves, but also because they significantly affect their children’s ability to be successful in school and form stable relationships. While several studies have examined parents of students on the spectrum, little is known about parents of intellectually gifted students on the spectrum.

Objectives:  This study aimed to address this gap, guided by the research question, “What are the lived experiences of parents of gifted students on the spectrum?” The research team used a phenomenological, qualitative design to capture both the nuances of each parent’s experiences and the common themes across experiences. 

Methods:  The research team recruited participants through a twice-exceptional website, and interested parents contacted the researchers. Thirteen parents participated from across the United States and Australia. All parents had students who were both identified as gifted and diagnosed on the spectrum. Researchers used an interview protocol to guide interview sessions. Interviews were recorded, transcribed, and analyzed using an iterative coding approach with two researchers. Following the first analysis, the parents were provided copies of the findings and given the opportunity to review and comment, thereby adding trustworthiness to the data through the use of a member checks/respondent validation.

Results:  Parents’ experiences illustrated the complexity of raising gifted students on the spectrum. First, parents wrestled with the identification/diagnosis process. Receiving the labels caused many emotions, ranging from relief to devastation. Because of the extreme asynchronous development within many of these students, some parent’s spouses or family members did not accept the label, causing social conflicts. Beyond the label, parents also struggled to find appropriate educational opportunities for their children. Either schools would meet students’ social needs with specialized autism support, or schools would address students’ cognitive needs with enrichment opportunities. Rarely, however, were schools equipped to address both, so parents worked tirelessly to advocate for their children. Additionally, many parents discussed alienation and judgment from peers, teachers, family, or even strangers. Their children were asked to leave playgroups or schools, and the parents worried their children’s behavior reflected the parents. Finally, the parents also recognized the joy that accompanies raising such unique children. They enjoyed their children’s interests, sense of humor, and often, logical view of the world. 

Conclusions:  This study provides unique insight into the lived experiences of parents of gifted students on the spectrum. While they share some experiences with other parents of students with exceptionalities, they also face additional challenges, including advocating for services, explaining their child’s asynchronous development to others, and finding a support system for themselves. The results of this study have the potential to promote empathy from outside individuals and to encourage other parents with gifted students on the spectrum that they are not alone.