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.
Background
22q11.2 deletion syndrome (22q11DS) is the most common microdeletion syndrome. Parents of emerging adults with 22q11DS have an intense and ongoing involvement in their child's life. This study explores the lived experience of parents in relation to their child becoming independent and establishing intimate relationships.
Method
Interpretative phenomenological analysis was used to explore the positive and negative experiences of five parents of emerging adults with 22q11DS.
Results
Supervised independence overarched four subordinate themes. These themes highlighted the difficulties experienced by parents attempting to relinquish control whilst still experiencing a need to keep their child safe as their child negotiated a complex stage of life. Parents waited for “signs” from their child before initiating conversations about intimate relationships.
Conclusions
These findings provide insight into the lived experience of parenting a child through the transition into adulthood, providing a catalyst for further research with the aim of facilitating better services for families.
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