261P
Creating a New Normal: Chronic Stress and Coping Among Families of High Functioning Adolescent Girls with Autism Spectrum Disorder
Abstract
Background and Purpose: Autism spectrum disorder (ASD) prevalence rates have risen dramatically over the past decade, however a gender gap exists with boys five times more likely to be diagnosed. Recent research on children with ASD indicates some gender differences in manifestation of ASD symptoms, but most studies include samples that are overwhelmingly male.
This study begins to address this gap 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.
Method: Using grounded theory with a supplemental quantitative data strand, the study involved forty in-depth semi-structured audiotaped interviews. Participants included eleven mothers, nine fathers, twelve adolescent girls with ASD (ages 12 to 17), five siblings, and three directors of programs servicing girls with ASD. Parents completed the Stress Index for Parents of Adolescents (SIPA) and a survey developed by the researcher. Transcribed interviews were entered into HyperResearch for coding and analysis. The SIPA was scored and entered into SPSS with the survey data for the purposes of generating descriptive statistics. A conceptual model of the family coping process was developed from the analysis.
Findings: Prior to a diagnosis, families experienced high levels of stress and ambiguity in “figuring out” what was different about their daughters’ development, and perceived professionals as “withholding” diagnostic information, consistent with the construct ambiguous loss. The mean age of ASD diagnosis was 8.7 years, well above the most recent (2014) CDC data (6.3 years). The construct of gender appears to impact perception of the ASD symptoms with parents and professionals. Manifestation of ASD symptoms were more nuanced in girls and many families experienced isolation and judgment from others, because their daughters “passed” as typically developed, making the disability less visible. All of the girls carried at least one comorbid mental health diagnosis including depression, and anxiety. Based upon the experiences of the eleven families, having a daughter with an ASD could be categorized as a chronic stressor. The majority of parents endorsed clinically significant levels of stress on the SIPA. A shift in perception of the ASD from an acute to a chronic stressor allowed families to move toward acceptance and more effective family management.
Conclusion and Implications: Delayed and misdiagnosis for girls with ASD results in significant stress for families and reduced access to appropriate intervention. Social workers in schools and in early intervention programs can play a critical role in providing education and support for families. The family coping conceptual model may be a useful practice tool in framing the chronic nature of parenting a child with an ASD and intervening within the family system.