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 well-being 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 self-regulation 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, 2006) and lacking discipline over their child (Gray, 2002).Further, some suggest that parents might have caused their child’s ASD through vaccination, which is an unfounded fear that perpetuates the stigmatization towards children with ASD and leaves parents feeling ostracized (Doja & Roberts, 2006). Ultimately, the feelings of isolation and ostracization can lead to an internalized stigmatization of their competence as a parent, which can dramatically contribute to the stress of the parent as well as their parental self-esteem (Gray, 2002; Levalier et al., 2013; Sharpley et al., 1997). In other words, parents might feel that they themselves are at fault for exacerbating their child’s developmental disabilities (Hou et al., 2018). Such negative perceptions might lead to self-stigmatization among parents of children with ASD, in which parents internalize public stereotypes about their child and feel that they are being rejected by others (Corrigan, Larson, & Rüsch, 2009).
Role of Parental Stress and Self Esteem
Self-stigmatization often leads parents to not seek social support, such as emotional advice from other parents who have children with ASD or outside resources (e.g., daycare centers, specialized schools) that would otherwise alleviate their stress. Due to internalization of these stigmatized beliefs, parents might further isolate themselves from the community in fear of social rejection (Benson, 2010; Stoner & Angell, 2006). Moreover, parents might feel that they do not have the support they require in institutional settings, such as schools or childcare centers (Costa et al., 2017; Stoner & Angell, 2006). Because many large institutions are unaccommodating to the needs of children with ASD who require extra resources, parents often feel un-welcomed, with the lack of support resulting in lower self-esteem (Benson, 2010; Stoner & Angell, 2006). Due to the internalization of stigma, parents might also be unwilling to disclose their child’s diagnosis, which not only contributes to barriers in receiving services that would meet the family’s needs, but also further increases their stress (Farrugia, 2009; Gray, 2002). Parents also face greater financial burden due to the dearth of social support and services for children with ASD (Alnazly & Abojedi, 2019; Costa et al., 2017). In fact, adequate treatment and support for children with ASD typically require families to spend extra money and resources (Alnazly & Abojedi, 2019). Within the special needs community, families who do not have the financial resources to support their child might also be stigmatized for not putting enough effort to help their child (Gray, 2002).
Overall, parents often feel blamed for their child’s behavior and prognosis, which undermines their confidence and parental self-esteem as a result (Neely-Barnes et al., 2011). Because it is difficult to balance self-care and care for their child due to the overwhelming amount of time and resources, parents of children with ASD often have anxiety and other mood disorders (Benson, 2010; Costa et. al, 2017). Research shows that a parent’s well-being and mental health are linked to an ASD child’s emotional and behavioral problems (Osborne, McHugh, Saunders, & Reed, 2008; Sharpley et al., 1997; Shine & Perry, 2010). The relation between parental stress and intervention outcome of children with autism shows a need for improving parental self esteem and stress (Shine & Perry, 2010).
When parents experience greater self-esteem in their abilities as a caretaker, they are better equipped to meet the needs of their children (Shine & Perry, 2010; Stoner & Angell, 2006). However, stigma related to autism, as well as the higher levels of stress associated with these stigmatized beliefs, can dramatically impact the parent’s stress levels and their self-esteem (Costa et al., 2017; Neely-Barnes et al., 2011; Osborne et al., 2008). Higher self-esteem is associated with greater motivation and ability to maintain relationships, and the internalization of stigma can negatively impact the way parents regard themselves as a parent and caretaker (Corrigan et al., 2009; Shine & Perry, 2010).
When parents believe that they are unfit to care for their child with ASD, they will internalize these notions (Sharpley et al., 1997; Vasilopoulou & Nisbet, 2016). Parental well-being is also a strong indicator of how children with ASD can learn to tolerate distress and other unfamiliar situations, which are the usual triggers for public outbursts (Shine & Perry, 2010; Vasilopoulou & Nisbet, 2016). When the demands of parenting become overwhelming, parents have a difficult time lowering their stress levels. Additionally, when parents are aware that their own well-being might also affect their child, parents may feel that they are unable to be a stress-free parent for their child and, in turn, reduce their feelings of self worth (Costa et. al, 2017; Gray, 2002). Thus, parental outcomes, such as their self-esteem, are important to consider when examining children with ASD as parents are often the ones providing the most support.
Conclusion
Parents of children with ASD often experience feelings of stress and isolation due to the negative perception of ASD in public spaces, leading to internalization of these stigmatized beliefs that contributes to their lower self-esteem (Gray, 2002; Lecavelier et al., 2005). Thus, these feelings of distress and seclusion can prevent parents from seeking the support they require to effectively provide for their children’s needs (Benson, 2010). Taking action to improve parental quality of life might enhance their ability to provide stronger intervention plans for their children and promote cohesivity within families that face difficulties (Vasilopoulou & Nisbet, 2016). Given the role of parental self esteem in providing quality care for their children, future research should examine the relationship of self esteem and stigma between authority figures that surround the child’s development such as educators and community members. By strengthening partnerships between families, schools, and community organizations, stronger policy plans and community efforts can be established for a multidimensional approach in supporting children with ASD by ensuring that parents are being supported, as well. In the same vein, by identifying the significance of the stigma of ASD, communities can offer outlets for parents to improve their well-being by decreasing their overall stress and increasing their self-esteem (Alnazly & Abojedi, 2019; Costa et. al, 2017; McStay et al., 2014). Systematically examining can allow parents to feel more competent in their parenting capabilities and thus provide better care for their children.
References
Alnazly, E. K., & Abojedi A. (2019). Psychological distress and perceived burden in caregivers of persons with autism spectrum disorder. Perspectives in Psychiatric Care, 55, 501-508.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA.
Benson, R. P., (2010). Coping, distress, and well-being in mothers of children with autism. Research in Autism Spectrum Disorders, 4(2), 217-228.
Corrigan, P. W., Larson, J. E., & Rüsch, N. (2009). Self-stigma and the “why try” effect: Impact on life goals and evidence-based practices. World Psychiatry: Official Journal of the World Psychiatric Association (WPA), 8(2), 75–81.
Costa, P. A., Steffgen, G., & Ferring, D. (2017). Contributors to well-being and stress in parents of children with autism spectrum disorder. Research in Autism Spectrum Disorders, 37(1), 61–72.
Doja, A., & Roberts, W. (2006). Immunizations and Autism: A review of the literature. Canadian Journal of Neurological Sciences, 33(4), 341-346.
Farrugia, D. (2009). Exploring stigma: Medical knowledge and the stigmatisation of parents of children diagnosed with autism spectrum disorder. Sociology of Health and Illness, 31(7), 1011-1027.
Gray, D. (2002). Everybody just freezes. Everybody is just embarrassed: Felt and enacted stigma among parents of children with high functioning autism. Sociology of Health and Illness, 24(6), 734-749.
Kasari, C., Gulsrud, A. C., Wong, S., Kwon, J., & Locke, J. (2010). Randomized controlled caregiver mediated joint engagement intervention for toddlers with autism. Journal of Autism and Developmental Disorders, 40(9), 1045-1056.
Lecavelier, L., Leone, S., & Wiltz, J. (2005). The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research, 50(3), 172-183.
McStay, L. R., Trembath, D., & Dissanayake, C. (2014). Maternal stress and family quality of life in response to raising a child with autism: From preschool to adolescence. Research in Developmental Disabilities, 35(5), 3119–3130.
Neely-Barnes, S. L., Hall, H. R., Roberts, R. J., & Graff, J. C. (2011). Parenting a child with an autism spectrum disorder: Public perceptions and parental conceptualisation. Journal of Family Social Work, 14(3), 208–225.
Osborne, L. A., McHugh, L., Saunders, J., & Reed, P. (2008). Parenting stress reduces the effectiveness of early teaching interventions for autistic spectrum disorders. Journal of Autism and Developmental Disorders, 38(6), 1092–1103.
Penner, L. A., Dovidio, J. F., Piliavin, J. A., & Schroeder, D. A. (2005). Prosocial behavior: Multilevel perspectives. Annual Review of Psychology, 56, 365–392.
Sharpley, F. C., Bitsika, V., & Efremidis, B. (1997). Influence of gender, parental health, and perceived expertise of assistance upon stress, anxiety, and depression among parents of children with autism. Journal of Intellectual and Developmental Disability, 22(1), 19-28.
Shine, R., & Perry, A. (2010). The relationship between parental stress and intervention outcome of children with autism. Journal on Developmental Disabilities, 16(2), 64–66.
Stoner, J. B., & Angell, M. E. (2006). Parent perspectives on role engagement: An investigation of parents of children with ASD and their self-reported roles with education professionals. Focus on Autism and Other Developmental Disabilities, 21(3), 177-189.
Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23(1), 36-49.
Click here to return to the Fall 2019 Issue Contents page.