Children With Autism Spectrum Disorder at a Pediatric Hospital
Children With Autism Spectrum Disorder at a Pediatric Hospital
Hospitalization for children with ASD may provoke challenging behaviors. Literature shows that children with ASD have more anxiety and behavioral conduct problems than children without ASD (Gurney et al., 2006). Moreover, ASD is recognized as the most severe behavioral disorder for children (Newsom & Hovanitz, 2006). Challenging behaviors are more likely in children with the severe forms of ASD, and include aggression, tantrums, property destruction, hitting, kicking, biting, punching, scratching, and throwing furniture (Hellings et al., 2005; Matson, 2009). These behaviors stress parents, families, and health care providers (HCPs) (Carbone, Farley, & Davis, 2010; Gray, 2002; Herring, Gray, Taffe, Sweeny, & Einfeld, 2006; Scarpinato et al., 2010; Woodgate, Ateah, & Secco, 2008), placing all at risk for injury (Debbaudt, 2009). Behaviors may be attributed to the child's desire for attention; alone/sensory/non-social time; a tangible item, such as food (Matson, Sipes, Horovitz, & Worley, 2011); or even more likely, frustration over the inability to express himself or herself to be understood. A better understanding of the function of an individual child's behavior during hospitalization could contribute to effective care planning and interventions for hospitalized children with ASD.
Family-centered care principles are the foundation of care planning and interventions for hospitalized children. Family-centered care relies on the collaboration with family members to develop an optimal plan of care for the child. The family and the HCP bring their respective experience and perspectives in establishing the plan. The family knows the child's likes and dislikes, as well as his or her behavior triggers, essential information to communicate to the HCP. Because the child's challenging behaviors stress parents (Carbone, Behl, Azor, & Murphy, 2010; Phetrasuwan & Miles, 2009; Woodgate et al., 2008), this important communication may be inhibited. Parents describe a feeling of embarrassment and stigmatization by their child's behavior (Gray, 2002) and by a vigilant style of parenting, purposefully trying not to upset the child (Woodgate et al., 2008).
Mothers are often the primary care givers (Phetrasuwan & Miles, 2009; Woodgate et al., 2008), and the stress of dealing with the challenging behaviors puts them at risk for poor mental health outcomes (Herring et al., 2006; Phetrasuwan & Miles, 2009). For their part, HCPs with limited knowledge of a given child may be stressed by the child's overwhelmed sensory system and limited cognitive abilities (Scarpinato et al., 2010) as they strive to deliver safe and timely care. Parental mental health is important because HCPs rely on family members who know their child best to be full partners in developing a plan of care (Inglese, 2009).
Challenging behaviors are a child's way of communicating their frustration when their routine is interrupted. Parents may teach the child an acceptable behavior to use in place of the challenging behavior (Matson, 2009). With a set routine and predictable behavioral interventions, children with ASD are often able to comfortably participate in educational and community activities (Durand, Hieneman, Clarke, & Zona, 2009). Predictable schedules and forms of behavior therapy are effective strategies for preventing challenging behaviors (Burbach, Fox, & Nicholson, 2004; Durand et al., 2009; Matson, 2009). Behavioral parent training uses the principles of applied behavior analysis, an evidence-based method, to shape acceptable behaviors for children with ASD (AHRQ, 2011; Durand et al., 2009). Effectiveness of the program depends on the degree of stress and the spectrum of severity of behaviors of children. Behavior intervention includes a) consequencebased strategies using reinforcement or punishment (for example, tokens or time-outs), b) instructions that build skills (for example, using repetitive trials to build language and social skills using shaping, prompting, fading, and chaining), c) targeting the functions of behaviors (for example, some children act out to avoid a task, such as an injection), and d) preventing behaviors by changing the antecedent to the event (for example, quieting a noisy physical environment that stresses the child's sensory system) (Durand et al., 2009).
In addition to behavior therapy, parents of children with ASD often prepare their children for non-familiar people and unusual social expectations with a strategy known as Social StoriesTM (Gray, 1994). Social stories break procedures down into steps and improve social understanding, which may lead to improvements in behaviors (Kokina & Kern, 2010; Reichow & Sabornie, 2009). Some parents use technology (for example, the Proloquo2GoTM communication software for the iPodTM [http://www.proloquo2go.com]) or alternative communication systems (such as Picture Exchange Communication System) (Scarpinato et al., 2010) to allow their child's voice to be heard through pictures.
In health care settings, children with ASD may have trouble generalizing skills they use with people they know well to new HCPs, and they may become anxious and act out (Scarpinato et al., 2010). Strategies that work at home and school may be adapted for use in the health care setting; however, HCPs with little experience working with this population may not know the antecedents to the challenging behaviors or the strategies for communicating and relating to children with ASD (Debbaudt, 2009; Shanley & Guest, 1995). Advocacy organizations develop materials for use in hospital settings. For example, Autism Speaks (2012) posted a thorough toolkit for HCPs with strategies to use when preparing a child from a blood draw. However, access to these resources by HCPs may be limited by lack of awareness of their existence or location. Familiarization with strategies to prevent challenging behaviors of hospitalized children may lead to improved safety, decreased cost of care, and a more satisfactory experience for parents (Kogan et al., 2008).
Problem
Hospitalization for children with ASD may provoke challenging behaviors. Literature shows that children with ASD have more anxiety and behavioral conduct problems than children without ASD (Gurney et al., 2006). Moreover, ASD is recognized as the most severe behavioral disorder for children (Newsom & Hovanitz, 2006). Challenging behaviors are more likely in children with the severe forms of ASD, and include aggression, tantrums, property destruction, hitting, kicking, biting, punching, scratching, and throwing furniture (Hellings et al., 2005; Matson, 2009). These behaviors stress parents, families, and health care providers (HCPs) (Carbone, Farley, & Davis, 2010; Gray, 2002; Herring, Gray, Taffe, Sweeny, & Einfeld, 2006; Scarpinato et al., 2010; Woodgate, Ateah, & Secco, 2008), placing all at risk for injury (Debbaudt, 2009). Behaviors may be attributed to the child's desire for attention; alone/sensory/non-social time; a tangible item, such as food (Matson, Sipes, Horovitz, & Worley, 2011); or even more likely, frustration over the inability to express himself or herself to be understood. A better understanding of the function of an individual child's behavior during hospitalization could contribute to effective care planning and interventions for hospitalized children with ASD.
Family-centered care principles are the foundation of care planning and interventions for hospitalized children. Family-centered care relies on the collaboration with family members to develop an optimal plan of care for the child. The family and the HCP bring their respective experience and perspectives in establishing the plan. The family knows the child's likes and dislikes, as well as his or her behavior triggers, essential information to communicate to the HCP. Because the child's challenging behaviors stress parents (Carbone, Behl, Azor, & Murphy, 2010; Phetrasuwan & Miles, 2009; Woodgate et al., 2008), this important communication may be inhibited. Parents describe a feeling of embarrassment and stigmatization by their child's behavior (Gray, 2002) and by a vigilant style of parenting, purposefully trying not to upset the child (Woodgate et al., 2008).
Mothers are often the primary care givers (Phetrasuwan & Miles, 2009; Woodgate et al., 2008), and the stress of dealing with the challenging behaviors puts them at risk for poor mental health outcomes (Herring et al., 2006; Phetrasuwan & Miles, 2009). For their part, HCPs with limited knowledge of a given child may be stressed by the child's overwhelmed sensory system and limited cognitive abilities (Scarpinato et al., 2010) as they strive to deliver safe and timely care. Parental mental health is important because HCPs rely on family members who know their child best to be full partners in developing a plan of care (Inglese, 2009).
Challenging behaviors are a child's way of communicating their frustration when their routine is interrupted. Parents may teach the child an acceptable behavior to use in place of the challenging behavior (Matson, 2009). With a set routine and predictable behavioral interventions, children with ASD are often able to comfortably participate in educational and community activities (Durand, Hieneman, Clarke, & Zona, 2009). Predictable schedules and forms of behavior therapy are effective strategies for preventing challenging behaviors (Burbach, Fox, & Nicholson, 2004; Durand et al., 2009; Matson, 2009). Behavioral parent training uses the principles of applied behavior analysis, an evidence-based method, to shape acceptable behaviors for children with ASD (AHRQ, 2011; Durand et al., 2009). Effectiveness of the program depends on the degree of stress and the spectrum of severity of behaviors of children. Behavior intervention includes a) consequencebased strategies using reinforcement or punishment (for example, tokens or time-outs), b) instructions that build skills (for example, using repetitive trials to build language and social skills using shaping, prompting, fading, and chaining), c) targeting the functions of behaviors (for example, some children act out to avoid a task, such as an injection), and d) preventing behaviors by changing the antecedent to the event (for example, quieting a noisy physical environment that stresses the child's sensory system) (Durand et al., 2009).
In addition to behavior therapy, parents of children with ASD often prepare their children for non-familiar people and unusual social expectations with a strategy known as Social StoriesTM (Gray, 1994). Social stories break procedures down into steps and improve social understanding, which may lead to improvements in behaviors (Kokina & Kern, 2010; Reichow & Sabornie, 2009). Some parents use technology (for example, the Proloquo2GoTM communication software for the iPodTM [http://www.proloquo2go.com]) or alternative communication systems (such as Picture Exchange Communication System) (Scarpinato et al., 2010) to allow their child's voice to be heard through pictures.
In health care settings, children with ASD may have trouble generalizing skills they use with people they know well to new HCPs, and they may become anxious and act out (Scarpinato et al., 2010). Strategies that work at home and school may be adapted for use in the health care setting; however, HCPs with little experience working with this population may not know the antecedents to the challenging behaviors or the strategies for communicating and relating to children with ASD (Debbaudt, 2009; Shanley & Guest, 1995). Advocacy organizations develop materials for use in hospital settings. For example, Autism Speaks (2012) posted a thorough toolkit for HCPs with strategies to use when preparing a child from a blood draw. However, access to these resources by HCPs may be limited by lack of awareness of their existence or location. Familiarization with strategies to prevent challenging behaviors of hospitalized children may lead to improved safety, decreased cost of care, and a more satisfactory experience for parents (Kogan et al., 2008).