Authors: Hailey Silver, Hilary Rosselot, Rebecca Shaffer, Reymundo Lozano
Summarized by Hailey Silver
The pandemic caused by the spread of the coronavirus disease (COVID-19), beginning in early 2020, had an impact beyond anything experienced in recent history. Beyond its properties as a disease itself, the pandemic affected people’s lives as they quarantined, social distanced, and took other measures to decrease the spread of the disease. People with Fragile X Syndrome (FXS), the leading known heritable cause of ASD and intellectual disability, were uniquely vulnerable to pandemic-related changes. This study aimed to explore the unique effects of the COVID-19 pandemic on school-aged children with FXS based on parent-reported changes in behaviors, adaptive skills, and daily activities, such as education and specialized services.
We distributed an online survey to parents of school-aged children with FXS. This survey covered a broad range of topics in order to understand the impact of the COVID-19 pandemic. We surveyed 33 parents/guardians of school-aged children with FXS across daily living skills, education, therapies, behaviors, health visits, and mask wearing.
Academic performance was perceived to have decreased in most of the children (58%). Students in online school had the most reports of decline and those in person had the most reported improvement. In terms of services, parents reported the most helpful services were tutoring, speech and language therapy, sensory integration therapy, and occupational therapy, and the least helpful services were physical therapy, vocational training, and counseling. Additionally, parents were significantly more satisfied with services that remained in person compared to those delivered online or in hybrid settings. Depression (75%), sleep problems (80%), attention problems (73%), and social skills (61%) were reported to have worsened the most. In terms of daily living skills such as feeding, dressing, toileting, and social skills, students who remained in person for school had the least skill decline compared to the other groups, and the most improvements compared to other groups. Most parents responded that their children with FXS did not have any medication changes, however, most respondents had not had appointments with an FXS specialist during the period since the pandemic shutdown, which could have decreased the number of medication changes in the sample. The doctor’s appointment types parents were most likely to attend in person was for vaccinations and annual physicals. The appointments parents were most likely to attend virtually were for medical advice, behavioral changes, and regular follow-ups. Overall, parents had positive reports on their child’s ability to wear a mask and he most common challenge reported was that they “do not understand the necessity of a mask”. Parents reported that in addition to continuing with a structured schedule, the most helpful strategies were increasing face-to-face social interactions and outdoor activities.
Why This Matters
It is important to understand how this pandemic era has impacted school-aged children with FXS so that we may continue to successfully navigate the changes that come with living through a pandemic and to understand what we can improve in the case of a future pandemic. This article was written and published with the hope that it will reach Fragile X specialists, both doctors and therapists, so that they understand where individuals with FXS have been most impacted over the past 2 years and are able to target interventions or programs that are most effective for children with FXS both now and in the case of possible future pandemics. Notably, this study has pointed out the declines that come with moving to fully online settings for school and services and should be used to improve the interventions that are provided online, and should be a case to keep these services in person when possible.
Applications for families now: Many parents who were surveyed found success in keeping their child in a routine, even when daily life looked different than it did before the pandemic. Additionally, most parents who were surveyed recommended and found success in implementing visual daily schedules to aid in those routines, as well as increasing face-to-face activities and social interactions, staying active and going outdoors, and increasing communication from teachers.
While this study created a foundation for understanding the impact of the pandemic on school-aged children with FXS, there is a lot of future research that is possible on this topic. The authors believe that future research should explore strategies to help online interventions and education to be more successful with individuals with FXS, given this may become a resource for families not geographically able to access in-person resources, as well as a way to improve our resources in case of a future pandemic or during the current one. As stated in the “why this matters” section, we hope that this survey data will reach the necessary clinicians who work with school-aged children with FXS so that they can understand where the target areas lie in interventions, services, and programs in the coming months. Furthermore, this data can be used to improve the community’s ability to target the main deficits and challenges that have faced this population since the onset of the pandemic.
The authors wish to thank all the families who participated in the survey for sharing their experiences and insight. The authors would also like to thank the National Fragile X Foundation and the Research Readiness Program advisors for their feedback, collaboration, and overall support of this project. Finally, the authors would like to thank the supporting faculty from Teachers College at Columbia University for their support on this study.