Distress and Psychological Growth in Parenting an Adult Child with Autism Spectrum Disorder and Aggression

Abstract

Parenting an adult child with autism spectrum disorder (ASD) who has intermittent outbursts of aggression may expose parents and other family members to potential physical threat and psychological distress including chronic hypervigilance. However, no known studies have explored the 'lived' experience of parenting an adult child diagnosed with ASD who displays aggression. Therefore, this phenomenological study sought both negative and positive subjective interpretations of three parents of adult sons with ASD (aged between 20 and 30) displaying intermittent and unpredictable aggressive behaviours. Data was collected through semi-structured interviews, transcribed and analysed using interpretative phenomenological analysis (IPA). One main theme emerged: Complex parental distress and growth overarching six subordinate themes. Themes describe the psychological and emotional unpredictability that was relentless in daily life whilst parenting a child diagnosed with ASD complicated by outbursts of aggressive behaviour. Anticipation of potentially traumatic events was expressed as constant. The powerful emotions of frustration, empathy, pity and an intense need to protect the child with ASD who displays aggression were in contrast with felt stigma and societal criticism. In time, they developed their own pragmatic survival strategies for functioning as a family that could accommodate each family member's needs as much as possible. Psychological well-being became a balance of striving for personal psychological growth despite the constancy of anticipatory traumatic events. Future research and implications are discussed.

Relationship Between Symptom Severity and Caregiver Burden Experienced by Parents of Adults With Autism

“…Novak and Guest (1989) described four types of burden (time dependence, financial, developmental, and emotional) that contribute to caregiving-related stressors. Parents reported that meeting the needs of their adult children with ASD is time-consuming, as well as physically and emotionally exhausting (Swaab et al, 2017). Because their adult child with ASD might never leave home, many parents recognized that their developmental milestones differed from their peers who were experiencing empty nest syndrome or having grandchildren (Marsack & Perry, 2018).…”

Mediating Effects of Social Support on Caregiver Burden and Quality of Life for Compound and Noncompound Caregivers

“…For purposes of the present study, caregiver burden entails the demands, challenges, and stressors experienced by those who care for an adult child with ASD and/or an additional loved one (Lazarus & Folkman, 1984). Providing care to adult children with ASD can be exhausting and time-intensive for parental caregivers (Oti-Boadi et al, 2020; Swaab et al, 2017). Many compound and noncompound caregivers are tasked with the unrelenting nature of providing care, while trying to balance everyday life, work, and social responsibilities (Hines et al, 2014; Nicholas et al, 2020; Perkins, 2010, 2011).…”

Who cares? A scoping review about the experiences of parental caregivers of autistic adults

“…Most of the studies focused on negative outcomes such as the caregiver burden, depression, health issues, etc. Several studies focused on outcomes and their correlation with child‐specific factors; symptom severity (e.g., Marsack‐Topolewski & Maragakis, 2021), challenging behaviour (e.g., Swaab et al, 2017), ADL (e.g., Marsack‐Topolewski, Samuel, & Tarraf, 2021) and age (e.g., Burke & Heller, 2016). Other parental‐specific factors studied included marital satisfaction (Hartley et al, 2012), daily stressors (e.g., Smith et al, 2010), worries about the future (e.g., Oti‐Boadi et al, 2020), support (Griffith et al, 2012; Smith et al, 2012) and financial issues (e.g., Marsack & Perry, 2018), and so forth.…”

“…symptom severity (e.g., Marsack-Topolewski & Maragakis, 2021), challenging behaviour (e.g., Swaab et al, 2017), ADL (e.g., Marsack-Topolewski, Samuel, & Tarraf, 2021) and age (e.g., Burke & Heller, 2016).…”