Having a Second Child, When Your First Has Autism: A Qualitative Study of Parental Experiences

Background: Around 20% of infants who have an older sibling with Autism Spectrum Disorder (ASD) develop ASD themselves (Ozonoff et al., 2011), and a further 20–30% develop broader developmental difficulties (Messinger et al., 2013). It is known that the diagnosis of a child with ASD has short- and long-term impacts on family functioning, including on family planning (Navot et.al, 2016). However, research has yet to explore the lived experience of parents having a second child when they already have a child diagnosed with ASD, and how this situation impacts parents’ decision to have another child as well as their perinatal experiences.

Objectives: This study sought to better understand the impact of this familial risk on parents, and the experiences of parents of a child diagnosed with ASD around the conception, pregnancy and early developmental period of a subsequent child.

Methods: The current ongoing study involves in depth interviews with (1) parents of a child diagnosed with ASD, who have a subsequent child (with or without ASD); and (2) parents of two typically developing children. Current recruitment of 8 parents in each group are approaching thematic saturation, however, the analysis and potential data collection are ongoing, with expected completion in the next two months. Interviews with parents involved a set of open-ended questions developed to explore parental experiences around the pregnancy and early developmental periods of the subsequent child. A minimal number of broad, data-generating questions were asked as recommended in phenomenology (Brod, Tesler, & Christensen, 2009; van Manen, 2016), allowing participants to speak about the experiences that were most salient to them, with prompts from the interviewer given to facilitate their storytelling. Interviews lasted between 1-1.5 hours and were transcribed verbatim. Data analysis has been concurrent with data collection, and involves a thematic analysis of the data conducted using NVivo (QSR International Pty Ltd. Version 11, 2016).

Results: Preliminary analyses have found three main themes. The first of these focuses on parents’ experiences of ‘uncertainty’; exploring parents guilt and stress over the potential of subsequent children being diagnosed with ASD, alongside positivity for any future children, regardless of their potential diagnostic status. The second of these focuses on ‘balancing roles’; exploring the impact of a diagnosis on the management of a family during pregnancy and with a newborn. The third theme ‘getting through’ explores parents’ methods of supporting their children and finding support for themselves.

Conclusions: Identifying the unique experiences of parents around the pregnancy and early development of a subsequent child when the first has ASD include the identification of psychoeducational focuses and resources that would be important for future parents. The results of this study will be used to inform a parent-mediated intervention for siblings at risk of developing ASD, but have broader implications for clinicians and researchers working with the parents of children with ASD.