My name is McKenna Fleming. I am 22 years old, and I was diagnosed with Turner syndrome in 2019. I am currently in a Doctorate program to become an occupational therapist.
I have been so fortunate to partner with the Turner Syndrome Foundation to conduct my capstone project research study on the lived experiences of individuals with Turner syndrome and social skills challenges. I am also investigating the effectiveness of a four-part virtual social skills training to improve knowledge of the factors that contribute to social skills challenges, and knowledge of research-based strategies to help.
I am very excited to have this opportunity to share the results of my research! All marketing and recruitment for this study was conducted through Turner Syndrome Foundation social media and blog posts. Technology support was also provided to allow me to conduct virtual sessions.
Introduction to Researcher
My story with Turner syndrome began when I was 15 years old. I’m now 23, and I love reading, journaling, and spending time with my family! Growing up, I’d always had symptoms of Turner syndrome, including severe acid reflux as a baby, frequent ear infections, and short stature. At the age of 15, I was finally referred to a pediatric endocrinologist, who diagnosed me with Turner syndrome.
Fast-forward seven years, and I am now about to graduate from an occupational therapy program, and am completing my Doctoral capstone research. When choosing my research topic, I knew I wanted to research something that I was passionate about, since I would be spending a lot of time on it. That was how my ultimate topic, social skills and Turner syndrome, came to be.
Background Information
Personal experience suggests, and research agrees, that individuals with Turner syndrome are more likely than the general population to experience social skills deficits (Jordan et al., 2023; Legpage et al., 2013; Roelofs et al., 2015). This can result from a variety of factors.
One of these factors is higher rates of alexithymia (difficulty recognizing and describing emotions) (Roelofs et al., 2015). Another is difficulty with theory of mind (difficulty understanding other people’s perspectives) (Jordan et al., 2023). A third is difficulty with executive functioning skills (planning, organizing, regulating) (Jordan et al., 2023; Legpage et al., 2013).
This study aimed to investigate the effectiveness of a series of virtual sessions to improve knowledge of these factors that can lead to social skills challenges. The study also aimed to improve knowledge of research-backed interventions to help with those factors.
Methods
This study was approved by the A.T. Still University Institutional Review Board. Participants were young adults between the ages of 18 and 25 with Turner syndrome. All participants provided written informed consent. Prior to the first session, participants completed a pre-survey to assess their current level of knowledge. The main portion of the study consisted of four sessions, conducted virtually via Zoom.
The first session was structured as a focus group, providing participants with an opportunity to introduce themselves to the group and share their experiences with socialization / social skills.
The remaining three sessions each focused on one of the factors that can result in social skills challenges: alexithymia, difficulty with theory of mind, and difficulty with executive functioning skills. These sessions included the definition of the concept, the ways in which social interactions may be affected, and research-backed interventions that could help.
Participants were also given brief homework to practice in between the sessions. Following the last session, participants completed a post-survey to assess change in knowledge as a result of the sessions.
Results
Five participants completed the pre-survey, and three participants completed the post-survey. This small sample size means that it was difficult to determine true improvement as a result of the sessions.
However, overall trends were positive. This suggests that online social skills interventions may be helpful for young adults with Turner syndrome. More research is needed with larger sample size and a wider variety of ages.
For a more detailed explanation of the study and its results, a free pre-recorded webinar is available soon.
If you have any questions, please feel free to contact me at mfleming@tsfusa.org.
The Importance of Research
Research is one of the most important tools we have for improving the lives of individuals with Turner syndrome. Studies like this help expand understanding beyond medical symptoms alone, exploring areas such as social connection, mental health, education, and quality of life.
At the Turner Syndrome Foundation, supporting research and encouraging community participation are core parts of our mission. By participating in research studies, sharing lived experiences, and helping researchers connect with the Turner syndrome community, individuals and families play a direct role in advancing knowledge, improving support strategies, and helping shape a better future for those diagnosed with Turner syndrome.
To help us continue supporting research initiatives, please consider becoming a monthly donor in the 1938 Collective.
References
Jordan, T. L., Klabunde, M., Green, T., Hong, D. S., Ross, J. L., Jo, B., & Reiss, A. L. (2023). Longitudinal investigation of cognition, social competence, and anxiety in children and adolescents with Turner syndrome. Hormones and Behavior, 149. https://doi.org/10.1016/j.yhbeh.2022.105300
Lepage, J.-F., Dunkin, B., Hong, D. S., & Reiss, A. L. (2013). Impact of cognitive profile on social functioning in prepubescent females with Turner syndrome. Child Neuropsychology, 19(2), 161–172. https://doi.org/10.1080/09297049.2011.647900
Roelofs, R. L., Wingbermühle, E., Freriks, K., Verhaak, C. M., Kessels, R. P. C., & Egger, J. I. M. (2015). Alexithymia, emotion perception, and social assertiveness in adult women with Noonan and Turner syndromes. American Journal of Medical Genetics Part A, 167(4), 768–776. https://doi.org/10.1002/ajmg.a.37006
Written By McKenna Fleming, TSF Volunteer Blog Writer and designed by Adrianna Verzolini
© Turner Syndrome Foundation, 2026
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