Addressing the Educational Needs of Children with Williams Syndrome: A Rather Neglected Area of Research?

Abstract

Williams syndrome (WS) is a rare neurodevelopmental disorder associated with physical health problems, limitations in cognitive abilities and increased risk of mental health difficulties. This profile of complex needs may make it challenging to support children with WS in schools. Surprisingly, in the current international move for inclusion, limited research exists on the educational provision and academic achievements of children with WS, including the non-existing literature on their voices and the perspectives of key stakeholders. This letter calls for additional research on the risk and protective factors associated with the educational outcomes of these children, the perspectives of the children themselves and the development of the evidence-base about the effectiveness of education intervention programs.

Comparing parental stress of children with neurodevelopmental disorders: The case of Williams syndrome, Down syndrome and autism spectrum disorders

“…However, it is possible that parents of children with ASD find choosing the right school (specialist or mainstream) or specific aspects of education provision particular stressful (see McNerney, Hill, & Pellicano, for a discussion). It should be pointed though that the effect of school provision on educational experience of children and families with WS has not been explored yet in any detail (see Palikara, Ashworth, & Van Herwegen, for discussion). Therefore, further studies are required to examine the impact of school provision on stress levels for parents of children with ASD and WS further.…”

Shared and syndrome‐specific adaptive difficulties in preschoolers with Williams syndrome and autism spectrum disorder: a cross‐syndrome study

“…; Palikara et al . ). Such knowledge, in turn, is critical to inform the use of early intervention targets and strategies to address shared and distinctive needs across neurodevelopment disorders.…”

“…This is particularly important in the case of WS, as tailored, empirically supported early interventions to enhance adaptive outcomes in this population are largely lacking (Palikara et al . ; van Herwegen et al . ).…”

“…The current study is the first cross-syndrome comparison of adaptive profiles in young children with WS and ASD. Whereas existing research on adaptive behaviour of young children with WS is based on comparisons with typically developing controls, cross-syndrome approaches provide an informative framework for understanding shared and syndrome-specific differences across neurodevelopmental disorders (Karmiloff-Smith et al 2012;Palikara et al 2018). Such knowledge, in turn, is critical to inform the use of early intervention targets and strategies to address shared and distinctive needs across neurodevelopment disorders.…”

Developmental Support for Infants With Genetic Disorders

“…Further research is needed to characterize the neurodevelopmental profiles of genetic disorders 7 because there is a paucity of data on developmental outcomes, particularly regarding functional abilities (such as the ability to live independently or maintain employment) even for relatively common genetic syndromes, such as Down syndrome, Williams-Beuren syndrome, and 22q11 deletion syndrome. [35][36][37] The developmental potential of children with genetic syndromes spans a broad spectrum that is influenced by many factors, from the presence of medical comorbidities to the genotype of the individual, the home environment, and parental educational achievement. Standardized, longitudinal assessments are useful in providing insight into the developmental phenotype of these rare disorders, and from this work, important observations can be made, such as relative strengths and weaknesses and the evolution of the developmental phenotype over time.…”