"Living Life in the Moment"
Autism spectrum disorder (ASD) prevalence rates have risen dramatically over the past decade and boys are five times more likely to be diagnosed than girls. Prior research on children with ASD includes samples that are overwhelmingly male, but does indicate that girls with high-functioning ASD may have distinct needs and profiles. This study begins to address this gap in the research through a qualitative study of eleven families with an adolescent daughter with high-functioning autism spectrum disorder. The family is the primary unit of analysis and the study focuses on the following: (a) families' experience with the diagnostic process (b) families' management of their daughter's adjustment to adolescence, and(c) the impact of the ASD on family well-being. Family stress theory was the conceptual framework used to guide the study. Using grounded theory with a supplemental quantitative data strand, the study involved forty in-depth semi-structured interviews. Parents completed the Stress Index for Parents of Adolescents (SIPA) and a demographic questionnaire. Findings indicate that parenting a daughter with ASD could be categorized as a chronic stressor. The majority of parents endorsed clinically significant levels of stress on the SIPA. The mean age of ASD diagnosis was 8.7 years, well above the most recent (2014) Centers for Disease Control findings (6.3 years). Delayed and misdiagnosis for girls with ASD resulted in significant stress for families and reduced access to appropriate intervention. A shift in perception of the ASD from an acute to a chronic stressor allowed families to move toward acceptance and adaptation. The study findings support the need for a family centered model of assessment and intervention. Social workers in schools and in early intervention programs can play a critical role in providing education and support for families.