“It’s really unexplainable, but everyone here got it:” Analysis of an ASD sibling support group for emerging adults

Abstract

BackgroundWhile the basic and applied literature on people with autism continues to expand in helpful ways, including substantial research on their families, less research exists focused specifically on siblings, and little on older siblings during emerging adulthood. This study's intervention goal was to create a support group for emerging adults with siblings with autism and share their experiences, and then to determine whether they found the group meaningful and useful. The study's research goal was to gain a better understanding of the TDS’s perspectives on their own identity and development and their perceptions of their family’s functioning during this period. MethodSix university students gave informed consent for audio-taping group discussions by the first author, a participant researcher. The support group, titled-Sibling Allies, met 5 times in Fall 2017; qualitative data from the meetings were analyzed using multi-grounded (MGT) theory analysis (Goldkuhl & Cronholm, 2010). ResultsResults show that sharing experiences was highly meaningful; participants' openness and comfort led to deep revelations and real friendships. Major themes were able to be identified using Multi Grounded Theory (MGT): lifelong responsibility, strong dedication to their families even as they become independent, and resilience to chronic challenges. Three theory categories emerged: Individual Experience, Family Life in Private, and Family Functioning in Public. Using MGT, thematic action paradigm models were constructed to illustrate researchable relationships among identified conditions, actions, and consequences in these domains. ConclusionsIn conclusion, this project shows the feasibility and value of developing intervention and research goals simultaneously. The participants reported the peer-led structured support group was meaningful and useful. MGT analysis of the recorded discussions substantiated previous findings and elaborated on themes such as the pervasive role that stigma plays in family decisions and how inseparable the sibling relationship is from the typically developing sibling’s (TDS’s) personal identity and development.