Impact of Stigma and Social Perceptions in Parents of Children with Autism Spectrum Disorder Tiffany Wong
Autism Spectrum Disorder (ASD) is a developmental disorder characterized by obstacles in social communication and challenges in moderating everyday functional tasks (American Psychiatric Association, 2013). Due to an increase in public awareness regarding ASD, more parents are actively seeking the help and support required for their children, creating an unprecedented demand for accurately assessing the needs of children with ASD (Stoner & Angell, 2006). Children with ASD are more likely to exhibit disruptive behaviors, such as screaming, than their neurotypical peers (Benson, 2010; Costa, Steffgen, & Ferring, 2017). These behaviors often lead to social stigma and isolation, which can be detrimental to the wellbeing of an individual with ASD and those who support them (Farrugia, 2009; Gray, 2002). For example, in public spaces, where parents’ capabilities are associated with and judged based on the behavior of the child, disruptive behavior might impact the image of a competent parent (Farrugia, 2009; Gray, 2002). In fact, stigmatized beliefs against behaviors exhibited by children with ASD can lead to greater levels of stress and loneliness among their parents, often influencing their parental self-esteem, or their feelings of self-worth as a caretaker (Farrugia, 2009; Gray, 2002; Shine & Perry, 2010; Vasilopoulou & Nisbet, 2016). Because parents’ own emotional well-being affects their ability to invest in their child’s development, there has been an increase in interventions with direct parental involvement that can foster better parent-child relationships and reduce behavioral difficulties in children with ASD (Kasari, Gulsrud, Wong, Kwon, & Locke, 2010; Shine & Perry, 2010; Vasilopoulou & Nisbet, 2016). As a first step, it is crucial to examine factors that might affect parental self-esteem in order to provide better services for children with ASD as well as their parents. This literature review, thus, explored the impact of stigma surrounding ASD on families of ASD children by addressing the following research question: How does the stigma associated with having a child with low-functioning ASD impact social perceptions of parents and parental self-esteem? Social Perceptions of Parents of Children with ASD Children with ASD often experience challenges in prosocial behavior (i.e., behaviors that benefit interpersonal relationships and contribute to the formation of close knit relationships) that can lead to frustrating scenarios with parents (McStay, Trembath, & Dissanayake, 2014; Penner, Dovido, Piliavin, & Schroeder, 2005). This is particularly problematic for low functioning children with ASD who are nonverbal
and communicate through nonspeaking cues (e.g., grunting and pointing), which often provide additional challenges in communication (McStay et al., 2014; Neely-Barnes, Hal, Robert, & Graff, 2011). Self-stimulatory behaviors, including loud noises (e.g., clapping, humming), are commonly used by children with ASD (McStay et al., 2014). However, these behaviors can exacerbate challenging behavioral problems, and can provoke other children to act in an aggressive manner if the self stimulatory behaviors are perceived as a threat, which can increase stress and difficulty for parents (Hou, Stewart, Lao, & Wu, 2018; Lecavelier et al., 2005). The socially inappropriate behavior exhibited by children with ASD can, thus, lead to negative attitudes and poor acceptance by others (Alnazly & Abojedi, 2019; Sharpley, Bitsika, & Efremidis, 1997). In turn, these negative attitudes from families and friends might lead to parents feeling excluded and socially isolated (Alnazly & Abojedi, 2019; Benson, 2010). At the same time, because the behaviors might be considered a nuisance in public spaces, some parents prefer to stay at home with their children (Alnazly & Abojedi, 2019). Thus, the behaviors associated with low-functioning ASD can lead to parental feelings of isolation and exclusion, which, in turn, can contribute to greater parental stress in caring for their child. Moreover, because some disabilities are not defined by physical characteristics, ASD is often invisible to the public (Lecavelier et al., 2005). The lack of physical characteristics fails to remind people about invisible disabilities, thus making public spheres unaccommodating for children with ASD and their parents (Neely-Barnes et al., 2011). Although outbursts and self-soothing behaviors (e.g., tapping, covering one’s ears) are common in children with ASD who have difficulties with selfregulation in environments with excess sensory stimuli, these outbursts might not appear any different from neurotypical children when having tantrums, contributing to the stigma associated with ASD (Gray, 2002; Lecavelier et al., 2005). Additionally, stigma is reflective in insensitive comments and crude jokes about ASD, which poke fun at people who act in a peculiar manner (Benson, 2010). The misconceptions and stigmatization of children with ASD and their caregivers are a result of the lack of understanding of ASD as neurotypical people are often unaccommodating to those with disabilities (Hou et al., 2018; Lecavelier et al., 2005). Overall, the behaviors of children with ASD might lead to stigmatization of parents for not having ‘proper’ parenting skills (Neely-Barnes et al., 2011; Stoner & Angell, Literature Reviews | 7
