Parent Experiences of Raising an Adolescent with Autism Spectrum Disorder

Background:  Although autism spectrum disorder (ASD) is a lifelong disorder, much of the current literature has been focused on the experiences of families with young children. As the child matures, the research becomes sparser and the experiences, needs, and outcomes of individuals and their families during the period of adolescence and adulthood have remained largely unexamined. The limited number of studies on this population suggest that adolescence is a challenging and resource-intensive time for families.

Objectives:  To describe and compare the lived experiences of parents raising an adolescent with ASD in three different outcome groups: poor, medium, and good

Methods:  This study was conducted as part of a larger study following the outcomes of adolescents who previously received early intervention. The adolescent participants in this sample were 14 to 20 years old and were being assessed on their cognitive ability, adaptive behaviour, academic skills, autism symptom severity, and social-emotional functioning. Semi-structured in-depth interviews ranging from 1 to 1.5 hours long were conducted with 9 families with adolescents diagnosed with ASD and variable cognitive ability. Thematic analysis was used to analyze the parents’ perspectives and feelings about the meaning of ASD, current experience with raising an adolescent with ASD, changes from childhood to adolescence, and expectations for the future.

Results: Four themes were constructed to represent the parents’ narratives of their caregiving journey: 1) Rippling Effect of Loss; 2) Becoming a Parent-Professional; 3) One Size Fits None; and 4) Preparing for “The Future”. Parental narratives reflect the tension they experience with the school system and the frustration with dealing with services that do not grow with their child’s needs. Findings also indicate that, over the years, parents develop a specialized skill set that helps them navigate the ever-changing ASD landscape.

 Conclusions:  Many parents reported more positive experiences from childhood to adolescence. Parents found that they felt more empowered and confident with their knowledge of ASD to better advocate for their adolescent. The results of this study have several important implications, including the need for service and education providers to actively involve parents in the treatment of their child, as well as to increase appropriate services for adolescents that target both ASD and comorbid mental health challenges.