Anxiety and Emotion Regulation in Young People with Williams Syndrome and Down Syndrome During the COVID-19 Outbreak: A Global Study

Abstract

Young people with neurodevelopmental conditions (NDCs) have been reported to experience increased levels of anxiety during the COVID-19 pandemic. In our study, we document how young people with Down Syndrome (DS; N=557) and Williams syndrome (WS, N=247) experienced the first wave of the COVID-19 pandemic across the world. Using multilevel linear mixed regressions, we studied (a) parental reported anxiety of young people with DS and WS, (b) these young people’s specific concerns, and (c) their use and efficacy of emotion regulation (ER) strategies. Predictors of anxiety, such as the age of the individual with NDC, type of condition, and time, were investigated. Young people with WS experienced higher levels of anxiety compared to those with DS and the older the people with NDC were, the more anxiety they experienced. In terms of concerns, group effects indicated that young people with WS scored higher for most of the concerns. Higher financial concerns were found in males compared to females, whereas most of the concerns increased with age except for concerns about loss of institutional support and family conflict. Finally, significant group effects were found and indicated a more frequent use of a variety of adaptive and maladaptive ER strategies in young people with WS. We only identified group differences in ER efficacy for two strategies: isolation/withdrawal was more efficient for young people with DS, while repetitive behaviours were more efficient for young people with WS. Our results indicate that young people with WS are likely to exhibit higher levels of anxiety, but also of concerns depending on their age and gender. Similarly, young people with WS use a variety of ER strategies more frequently but these strategies are not necessarily more efficient for them. We discuss the impact of these findings in relation to anxiety identification and support across young people with NDCs.

Psychiatric and behavioral manifestations of Williams syndrome

“…Survey data indicated that individuals with Williams syndrome had greater anxiety severity compared to individuals with DS. Anxiety severity increased with age and the most common concerns among the Williams syndrome population included the loss of social contact, not being able to approach others, the loss of routine, and fears of becoming ill with COVID-19 [24]. .…”

“…gun shots, fireworks, balloons popping); excessive concerns about death and dying; vomiting phobias; worries about family members arguing; and the fear of medical procedures [23]. Another study utilized a parent-completed online survey to compare anxiety levels between patients with Down syndrome (DS) ( n = 557) and Williams syndrome ( n = 247) from 33 countries during the early stages of the COVID-19 pandemic (April--August 2020) [24]. Survey data indicated that individuals with Williams syndrome had greater anxiety severity compared to individuals with DS.…”

“…Recent advances in the assessment and management of common psychiatric and behavioral manifestations of Williams syndrome have largely been focused on the social phenotype, anxiety, and eating behaviors. The more nuanced understanding of social behaviors [16 ▪▪ ,17 ▪▪ ], clinical presentations of anxiety [23,24], and eating behaviors [29 ▪▪ ] in Williams syndrome gained over the past 18 months will hopefully allow for the development of more targeted and effective interventions. Excitingly, the field has begun to move beyond phenotyping and has begun piloting treatment interventions for social skills training in adults [22], play and humor-based exposure therapy for the management of fears and phobias in children [25 ▪ ], and modified CBT for generalized anxiety disorder in adults with Williams syndrome [26 ▪▪ ].…”

“…, clinical presentations of anxiety[23,24], and eating behaviors [29 && ] in Williams syndrome gained over the past 18 months will hopefully allow for the development of more targeted and effective interventions. Excitingly, the field has begun to move beyond phenotyping and has begun piloting treatment interventions for social skills training in adults [22], play and humor-based exposure therapy for the management of fears and phobias in children [25 & ], and modified CBT for generalized anxiety disorder in adults with Williams syndrome [26 &&…”