Diagnosis Stories: Narrative Approaches to Understanding African American Mothers' Experiences of Their Children's ASD

Background:  

Research on the impact of a child’s developmental disability on the family has focused primarily on parental functioning and psychological well-being relative to the kind of the disability (e.g.,autism vs. Down syndrome), its severity, and perceived parental burden and stress (Abbeduto et al., 2004; Dumas et al., 1991; Koegel et al., 1992).  Parents of children with ASD report significantly more stress than parents of typically developing children and parents of children with other disabilities (Kasari & Sigman, 1997). While the group design of these studies provides important information about commonalities of parental experience, there is a need for a nuanced, socio-culturally situated understanding of family members’ experiences (Lawlor & Mattingly, 2009) of raising a child with ASD. This study addresses a paucity of research on African American families’ experience of ASD in the context of everyday life, especially in light of health and service disparities related to ASD diagnosis and services (Lord & Bishop, 2010; Mandell et all., 2002, 2007, 2009; Shattuck & Grosse, 2007). 

Objectives:  

1) To provide a socio-culturally situated account of African American mothers’ experience of ASD diagnosis to complement studies on parental stress and well-being: 2) To examine how African American mothers narrate their experiences of interacting with professionals in the course of their children’s diagnostic evaluations; and 3) To analytically capture diversity in the family life and experience of ASD while identifying themes and issues that hold across families.

Methods:  

Diagnosis narratives were selected from video and audio interviews  with 24 mothers collected for: 1) the longitudinal urban ethnographic study ‘Boundary Crossings: Resituating Cultural Competence’ that examines family life among 30 African American families and their children with chronic illnesses and conditions, of which a sub-sample had a diagnosis of ASD, and 2) the urban ethnographic study “Autism in Urban Context: Linking Heterogeneity with Health and Service Disparities” that examines health and service disparities in ASD diagnoses among 20 African American families. Narratives were analyzed along three dimensions: 1) chronologically, beginning with first concerns and ending with the child’s diagnosis of ASD; 2) epistemically, following the mothers’ understanding about their child’s condition and their engagement with educational and clinical institutions; and 3) thematically, identifying developing and recurrent themes within and across a mother’s narratives, and across narratives of different mothers.

Results:  

Preliminary findings suggest that 1) chronologically, mothers narrate the experiences based upon a timeline of remembered noticings and the dates of clinical evaluations that led to an ASD diagnosis; 2) epistemically, the mothers evinced understanding of their child’s particular kind of ASD; and 3) thematically, sources and nature of evidence, clinicians’ and mothers’ partnering up, and views of the child’s abilities relevant to the future were present across the data.

Conclusions:  

African American mothers ‘diagnosis stories’ provide a lens on their experience of how, when and by whom a child’s atypical development was noticed, interpreted and identified. These stories offer a valuable perspective on the barriers to and opportunities for African American children receiving timely and accurate diagnosis and appropriate services.