Tell Us Your Pregnancy Story: A Timeline Mapping and Narrative Portrait Approach to Improve Pregnancy for People with Developmental Disabilities

Background and Purpose: Many autistic people received Medicaid services during and after pregnancy. A recent study (N=55,440) found younger age at first delivery and higher rates of both obstetric conditions (e.g., gestational diabetes) and mental health conditions (e.g., PTSD, 3.2x the odds of postpartum anxiety, 2.4x the odds of postpartum depression) compared to people without developmental disabilities. Thus, there are growing calls to better understand and improve pregnancy experiences and outcomes for autistic people enrolled in Medicaid. Timeline mapping in narrative research centers lived experiences while providing a visual tool (the timeline of the pregnancy, created during the interview and shared with the participant) to enhance accessibility and reflection. Narrative portraiture techniques emphasize the voices and journeys of participants and deepen the analysis of timeline data by identifying key turning points in an experience that could contribute to what Krahn has termed the “cascade of disparities” experienced by people with disabilities.

Our purpose is to investigate key events that contribute to pregnancy outcomes among autistic people enrolled in Medicaid during pregnancy, in order to inform improvements to services and outcomes.

Methods: An 8-person team of community collaborators provided input on all aspects of the study. We designed a pregnancy timeline to capture key events, support, and interactions with the healthcare system from preconception through postpartum. We conducted 90-minute semi-structured interviews with Medicaid-enrolled individuals who were pregnant in the past ten years (N=12). Timelines were created during interviews and presented for reflection and feedback on accuracy. We coded for 1) key turning points, 2) characters; 3) time; 4) space and circumstances; and 5) intersections of phenomena (pregnancy, disability, and healthcare). We present visual depictions of timelines and accompanying narrative portraits created entirely with participants’ own words.

Results: Themes included (1) family support and self-advocacy, (2) trouble navigating Medicaid, (3) Self-reliance to fill knowledge gaps, (4) feeling unprepared or unheard, (5) stigma around being disabled and pregnant, and (6) what worked: coordinated care system. Participants responded positively to timeline mapping, with many requesting a copy of their timeline. Participant review of timelines generated rich reflections and enhanced accuracy and clarity. Timelines provided a visual tool to identify underlying determinants of key pregnancy events and facilitated identification of themes and narratives to create portraits. In our presentation, we will share participant timelines and portraits which illustrate a unique dialogue between first-person participant experiences and researcher interpretation and reflexivity, and invite participation and reflection by audience members.

Conclusions and Implications: Participants reported varied experiences with pregnancy and healthcare that differed based on place of residence, supporters involved in their lives, financial precarity, and healthcare infrastructure. Narratives crafted from participants’ own words provide a rich and meaningful depiction of how different contextual elements and personal characteristics interact to influence pregnancy and postpartum outcomes. These first-person accounts provide an emotionally salient counterpoint to the epidemiological data often used to understand pregnancy, particularly among marginalized groups such as those with disabilities. The potential for use of timeline and narrative methods for other projects will be discussed.