Behavioral Characteristics of Individuals with Down Syndrome

Reliability of parent report measures of behaviour in children with Down syndrome

“…An additional area of caution is whether the CBCL is capturing key symptoms observed in children with DS. Common behaviours include wandering, self-talk, noncompliance, difficulties with social boundaries, and a need for sameness (McGuire & Chicoine, 2006; Patel et al, in press; Stein, 2016). Wandering can stem from challenges with inhibitory control, and also serve an attention-seeking function, yet is not captured on the CBCL by items such as “runs away from home.” Further, items such as disobedience and “impulsive acts” likely are not sensitive to detecting treatment changes in wandering.…”

“…Caution is also warranted for understanding the factor structure of the CBCL in children with DS. Individuals with DS often demonstrate a strong need for sameness, which may present itself as challenges with transitions or repetitive questioning about schedules (McGuire & Chicoine, 2006; Patel et al, in press; Stein, 2016). Some items on the CBCL may capture this characteristic, including “can’t get his/her mind off certain thoughts,” and “repeats certain acts over and over”.…”

“…Behavioural outcomes that were especially in need of development included noncompliance, self-regulation of emotions and behaviour, and coping with transitions. This priority is reinforced by recent findings that measures developed for individuals with IDD may be omitting key behaviours of concern in individuals with DS (Patel et al, in press). Key behaviours of concern in DS that are not adequately captured on commonly used measures of maladaptive behaviour include wandering, self-stimulatory behaviours, insistence on sameness, and self-talk (Feeley & Jones, 2008; McGuire & Chicoine, 2006; Patel et al, in press; Stein, 2016).…”

“…This priority is reinforced by recent findings that measures developed for individuals with IDD may be omitting key behaviours of concern in individuals with DS (Patel et al, in press). Key behaviours of concern in DS that are not adequately captured on commonly used measures of maladaptive behaviour include wandering, self-stimulatory behaviours, insistence on sameness, and self-talk (Feeley & Jones, 2008; McGuire & Chicoine, 2006; Patel et al, in press; Stein, 2016). By inadequately assessing maladaptive behaviours, currently available measures of behaviour may not be valid or sensitive to treatment change, and may have contributed to the wide range in reported behaviour problems.…”

“…Children with Down syndrome (DS) exhibit a range of maladaptive behaviours, with reported rates of 18–43% (Capone, Goyal, Ares, & Lannigan, 2006; Dykens & Kasari, 1997; Dykens et al, 2015; Patel, Wolter-Warmerdam, Leifer, & Hickey, in press; Visootsak & Sherman, 2007). Rates of maladaptive behaviours are reported to be higher in children with DS than in typically developing children, and continue to be a concern after controlling for developmental level (Capone et al, 2006; Coe et al, 1999; Cuskelly & Dadds, 1992; Evans, Canavera, Kleinpeter, Maccubbin, & Taga, 2005; Evans & Gray, 2000; Feeley & Jones, 2008; Foley et al, 2015; Gath & Gumley, 1986; Glenn & Cunningham, 2007; Loveland & Kelley, 1991; Nicham et al, 2003; Pitcairn & Wishart, 1994; Pueschel, Bernier, & Pezzullo, 1991; van Gameren-Oosterom et al, 2011).…”