Parents’ Perceptions of Their Lives

Abstract

In order to really understand or “see” Autism, it is necessary to examine the family dynamic, and that begins with parents. This chapter shares parents’ perceptions of their lives. Parents explain that their lives are difficult due to financial pressure, an abundance of tasks, and limited assistance. Parents indicate that caring for a child with ASD increases their level of stress. Limited support, their child’s problem behavior, criticism of their parenting skills by friends and family members, financial pressures, and emotional burdens are also discussed as stressors. Loneliness and isolation are discussed as a direct result of the kaleidoscope of issues inherent in a diagnosis of ASD. Many parents state that they cannot enjoy social opportunities because of their child’s misbehavior and limited emotional and respite support from friends and family. Parents feel constant pressure to conduct research to find services and interventions that can help their child, and they worry about their child’s future, their child’s total dependence on the opportunities they are able to provide, and their ability to protect their child from predators. Additionally, this chapter examines parents’ thoughts about the public stares and the silent judgments they receive from others when they are in public and their child misbehaves. Even though the challenges are great, parents use wonderful adjectives to describe their children with autism spectrum disorder: “beautiful people,” “intelligent,” “a wonderful blessing,” “great teachers,” “a total joy,” “incredible,” “humorous,” “sweet,” “bright,” “unique,” and more.