Abstract
The presence of a child with autism spectrum disorder (ASD) has impact on members of the family. This study explored social, behavioral, and emotional characteristics and perceptions of parents and typically developing (TD) siblings of children with ASD, sibling relationship, and family satisfaction of parents. Of 21 families who participated in study, mother, father, and one TD sibling of school age provided demographic information and completed a series of questionnaires. The majority of parents and TD children showed positive adjustment, moderate level of family satisfaction, and satisfying sibling relationships. Various difficulties were recorded by a small percentage of participants, including high and clinically significant parenting stress, mothers with severe degree of negative emotional status, and a few TD children with externalizing and internalizing problems. The study provided preliminary overview of Greek families of children with ASD, which indicates that the majority cope well with the situation, but some family members could benefit from identification of related problems and professional intervention.
TopIntroduction
Autism spectrum disorder (ASD) is a set of heterogeneous neurodevelopmental conditions that become apparent in early childhood and persist throughout life (Heijst & Geurts, 2014). ASD may affect the quality of life (QoL) of the individual and of other family members (Meadan et al., 2014), who face additional challenges (Baker & Drapela, 2010), as the needs of the child with ASD may impose certain restrictions and responsibilities (Chan & Goh, 2013), generating problems in everyday living, which may be a source of family stress (Plumb, 2011; Sikora et al., 2013). Families that meet the challenges may, however, become stronger and more resilient as a result of coping with the disorder (Bayat, 2007; Plumb, 2011).
Studies of parents of children with ASD document poor QoL, inadequate social support, and low levels of self-esteem, and life satisfaction (Kuhlthau et al., 2014; Lu et al., 2015). Many experience feelings of isolation, rejection, and exclusion from their friends and family (Kinnear et al., 2015). Their levels of parenting stress may be high (Rivard et al., 2014), particularly when compared with parents of typically developing (TD) children (Estes et al., 2013; Giovagnoli et al., 2015; Lai et al., 2015), and with parents of children with Down syndrome (Dabrowska & Pisula, 2010).
The mothers of children with ASD, who are responsible for their daily care, are reported to be at high risk of depression (Kotsopoulos, 2014; Meyer et al., 2011; Quintero & Mcintyre, 2010; Roper et al., 2014). In the Greek social environment, this is compounded by the difficulties they face in their attempts to creatively manage their children's needs (Kotsopoulos, 2014).
Growing up with a brother or sister with ASD creates unique challenges for TD children, but also opportunities (Schuntermann, 2009). The research findings on the effects on TD siblings of children with ASD are conflicting (Thomas et al., 2016) and unclear (Tomeny et al., 2012). Studies have indicated that TD siblings of children with ASD show adjustment problems and are at increased risk of both internalizing and externalizing disorders and that both their satisfaction with their friendships and peer acceptance are low (Meyer et al., 2011; Schuntermann, 2009; Stampoltzis et al., 2014; Tsai et al., 2016).
Conversely, having a sibling with ASD may provide opportunities in terms of self-perception, self-esteem, sensitivity, and empathy (Schuntermann, 2009). Other studies documented adequate psychosocial adaptation and low levels of loneliness in the siblings (Kaminsky & Dewey, 2002), and no increase in emotional and behavioral problems (Dempsey et al., 2011; Rankin et al., 2017; Stampoltzis et al., 2014).
Sibling relationships between TD children and children with ASD are reported to vary depending on the type of disability (Roper et al., 2014). Comparative studies, conducted in the USA and Canada, showed that sibling relationships were characterized by less aggression, less involvement, and more avoidance (Walton & Ingersoll, 2015). Greater admiration was expressed by TD children for their siblings with ASD, and less conflict and competition were reported than in their relationships with a TD sibling (Kaminsky & Dewey, 2001).
Social support is an integral part of the family's adjustment to the child’s ASD (Gray, 2002), and its sufficiency and quality can affect parenting stress (Plumb, 2011), and play an important role in the healthy adjustment of siblings (Kaminsky & Dewey, 2002).
Professional psychosocial and educational intervention can be effective for all family members (Mandleco et al., 2003; Sikora et al., 2013), and is documented to have a positive impact on the TD siblings of children with ASD and the quality of sibling relationships (Thomas et al., 2016).
There is no research data in Greece concerning the parents and siblings of children with ASD within the same family. This conclusion has been revealed by the authors of the present study.
The aim of this study was to investigate the social, behavioral, and emotional characteristics and the perceptions of parents and TD siblings of children with ASD.
The individual research questions to be answered were the following:
Key Terms in this Chapter
Psychosocial Adjustment: A reflection of a person’s psychological well-being, which is influenced by their experiences.
Family Satisfaction: A term that refers to the perceptions of family quality, including flexibility, communication, closeness, and overall relational well-being.
Externalizing Problems: Externalizing and maladaptive behaviors, which influence the function of the person. They include conduct problems and hyperactivity.
Internalizing Problems: Noticeable behaviors, where people keep their problems to themselves. They include depression, anxiety, and poor self-esteem.
Likert Type Scale: A rating scale, such as between 1-5, which measures opinions or attitudes.
Acceptance: A term in human psychology, where a person recognizes a process or a condition, often a negative or uncomfortable situation.
Parenting Stress: A distinct type of stress, about the paternal and maternal role, and their parental perceptions.
Quality of Life (QOL): A degree to which a person is physically and mentally healthy, and enjoys the possibilities of life.
Self-Evaluation: A self-assessment, where a person evaluates their actions, performance, abilities.