Abstract
Raising a child with ASD is generally considered a challenging experience for families due to the pervasive difficulties in communication, social skills, and other adaptive behaviors encountered in these children. The family system restructures and adapts to accommodate the needs of the child with ASD. In this chapter, the author highlights the importance of communication skills for the development of children with ASD and summarizes the evidence-based individual interventions for improving them. Although there is robust evidence for the family's beneficial contribution to developing adaptive communication skills in children with ASD, there is still room for uplifting the existing programs in terms of accessibility, efficacy, and culture-based elements. In the final part of the chapter, the author provides recommendations for designing future family interventions addressed to communication skills in children with ASD and argues that culture-specific and systemic factors (such as support policies for children with disabilities) enhance program success.
TopIntroduction
Having a child with a developmental disorder, such as autism requires a significant readjustment of all family members. Most of the time, mothers take on the main task of caring for the autistic child (Lee, 2013), becoming the primary caregiver, and the other family members contribute in different proportions. The majority of people diagnosed with ASD need lifelong care, especially from their families (Volkmar & Pauls, 2003). Family members are also called informal caregivers. This term entails relatives or acquaintances who take care of the vulnerable child's needs every day for a long time (from 3 months to several years) without being paid for their services (National Research Council Committee on the Role of Human Factors in Home Health Care, 2010). The term appeared in the 1980s when describing family members caring for elderly relatives at home (Farran, 2002). In Europe, it is estimated that 80% of long-term care is provided by family or informal caregivers (Hoffmann & Rodrigues, 2010). Data on Romania show that 9% of Romanians declare themselves informal caregivers (European Commission, 2018).
Typically, parents assist the disabled child with at least one activity related to everyday life tasks (e.g., getting out of bed, getting dressed, going to the toilet, washing, feeding). Caregivers who offer intensive care spend more than 21 hours a week assisting, according to the National Alliance for Caregiving & Public Policy Institute in the United States of America (2015). On average, they contribute to 1) about 2 of the above activities; 2) about five instrumental activities (such as transport, shopping, housekeeping, food preparations, money management, and medical care); 3) health monitoring, communication with health professionals and mediation of the relationship with other institutions in the community. Furthermore, 63 percent of them perform various healthcare tasks without having undergone any training or education in this field (National Alliance for Caregiving and Public Policy Institute, 2015), which can be hazardous to the child's health. Let us think specifically about the informal caregivers of children with disabilities. It is necessary to highlight their involvement in therapeutic activities, such as taking the child to rehabilitation centers or schools, following specialists' recommendations, performing therapeutic exercises in the family or community, purchasing materials for home therapy, participating in community entertainment events. In addition to the specific tasks of caring for the child, family caregivers are not exempt from other household activities, such as food preparation, housekeeping, caring for other household members (e.g., the child's siblings with a disability), or even earning extra income. For example, the mother of a child with disabilities is his healthcare assistant and supplements the family's income by selling hand-made jewelry to acquaintances.
Given the multitude of tasks that caregivers face, one may think that these additional responsibilities bring more stressors into their lives and, as a result, make them emotionally vulnerable. Although caring for the needs of a loved one with a disability can also have positive consequences (e.g., feelings of fulfillment, pride, gratitude), the care process is generally considered stressful by caregivers and has long-term adverse effects on their mental and physical health (Penning & Wu, 2016). Caring for a child with a disability is a unique but unpredictable and challenging experience that requires much effort. This type of experience can cause emotional disturbances to the caregiver (Bademli et al., 2017). The divorce rate among parents with children with autism spectrum disorders (i.e., ASD) is 23.5%, compared to 13.8% among children with typical development (Hartley et al., 2010). Stress is more pronounced among parents who have children with ASD than among families with typical development (Hayes & Watson, 2013). These parents report higher levels of anxiety (Falk et al., 2014), higher levels of depression (Weitlauf et al., 2014), and more health-related issues (Fairthorne et al., 2015). Meta-data on the prevalence of psychological disorders in parents of children with ASD indicates that anxiety and depressive disorders are the most common, with meta-analytic proportions of 33% for anxiety and 31% for depression (Schnabel et al., 2020). As such, keeping a balanced life is difficult for the familial caregivers, not just for specialists working in education, for example. Teachers also struggle to maintain a positive home-work interaction (Nastasa et al., 2020).
Key Terms in this Chapter
Informal Caregiver: A relative (e.g., parent) who takes care of a vulnerable person's needs, such as a person with a disability.
Language: A communication system based on vocabulary and rules about how to combine and use sounds, words, sentences, or elements such as punctuation.
Modeling: A teaching procedure that entails the demonstration of behavior performed by a teacher, parent, or another person, followed by the repetition of the behavior by the child.
Broad Autism Phenotype (BAP): A series of personality traits and social communication characteristics in the general population that resemble, to some extent, the deficits found in people diagnosed with autism spectrum disorders; examples of BAP traits are aloofness, rigid personality, and difficulties with pragmatic language.
Caregiver-Administered Intervention: A type of intervention delivered by the caregiver (the parent most often) to the child with ASD, following training and/or supervision from specialists.
Prompting: A procedure that facilitates a behavior or an answer from the child.
Augmentative and Alternative Communication (AAC): Various tools (devices or interventions) that aim at helping people who lack or have limited verbal language capacities to communicate with others through other means (e.g., audio recordings of words or messages, picture-based communication).
Autism Spectrum Disorders (ASD): A category of neurodevelopmental disorders with onset in early childhood, characterized by pervasive deficits in interaction and social communication, as well as by restrictive or repetitive behaviors.
Pivotal Response Training: An intervention that uses specific crucial or pivotal skills (such as motivation) to teach other skills (such as language or social communication).
Communication: The exchange of messages or information between two or more beings.
Pragmatic Language: A set of verbal and nonverbal language skills that we use in everyday social interactions; examples of pragmatic language skills are saying hello when we enter the classroom, proper visual contact during conversations, not interrupting other people's conversations abruptly.