"You Never Stop Holding Your Breath": Narratives of Simplex and Multiplex Mothers with an Infant

Background:

Understanding the holistic experience of parenting children with Autism Spectrum Disorder (ASD) is critical to support the family unit effectively. Many studies report an elevated caregiving burden among mothers of a child with ASD (e.g., Nealy et al., 2012). There is a need to better characterize the experience of mothers who have a younger child in addition to a child with ASD, as cognitions about parenting related to ASD likely affect other children in the household (Meirsschaut, Roeyers & Warreyn, 2010). Qualitative approaches have been recommended in the analysis of maternal caregiving experiences and coping with chronic stressors (Brannen & Petite, 2008; Folkman & Molzkowitz, 2004); yet narrative approaches are lacking in the study of simplex and multiplex families.

Objectives:  

We used a qualitative approach to identify common themes among mothers parenting children with ASD and an infant.  The objectives of the study were to understand meaningful experiences—both positive and challenging—related to caring for a child with ASD and an infant, and to compare these experiences between simplex and multiplex mothers.

Methods:  

We conducted in-depth, semi-structured interviews with 20 mothers of a child with ASD and an infant enrolled in UCLA’s Infant Sibling Study (prior to conclusive diagnosis). At the time of the interview, infant siblings (IS) ranged in age from 9-35 months and affected siblings ranged from 3-10 years. In a quarter of the sample, the infant had at least two older siblings with ASD (multiplex). Interview questions addressed mothers’ perceptions of the relationship between the proband(s) and the IS, familial impacts of receiving the proband’s diagnosis, and formative experiences related to raising children with ASD while also raising an infant.  Interviews (lasting 27-83 min) were transcribed and double coded for accuracy, and a codebook was established and validated using five pilot interviews, consistent with a thematic analysis approach (Braun & Clark, 2006).

Results:  

We identified salient themes among mothers in three domains: 1) Benefits of parenting a child with ASD, 2) Challenges of parenting a child with ASD, and 3) Misconceptions about their child’s diagnosis. Preliminary sub-codes with the highest frequency in each domain, respectively, are: a) Increased Empathy b) Difficulty balancing time between siblings, and c) Heterogeneity in ASD presentation. We will report two additional sub-codes that reached saturation in each domain, and representative quotes have been selected for each. Forthcoming analyses compare the responses of simplex and multiplex mothers to pinpoint the unique challenges associated with caring for multiple affected children with varying, yet chronic needs.

Conclusions:  

Utilizing a narrative approach provided access to a nuanced account of mothers’ experiences raising a child with ASD and a new baby—data that are inaccessible through the use of standardized measures. These findings are relevant for clinicians seeking to understand challenges faced by parents; affected children, who encounter a new sibling and a necessary reduction in the time devoted exclusively to their needs; and infants, who enter into an environment of elevated familial stress—which is implicated in suboptimal cognitive and language development in infancy (Keim et al., 2011).