‘I’m thinking of all these things, all these relationships’ Childbearing and early parenting experiences of Autistic people in Aotearoa New Zealand: A constructivist grounded theory study

<p><strong>The journey from pregnancy to early parenthood is daunting for any parent. For Autistic people, this transition is even more complex as they contend with ongoing or emerging sensory, communication, and social differences, which are still poorly understood by healthcare practitioners. International research on this subject has grown steadily, reflecting both the increased interest in Autistic wellbeing across the lifespan and the rising public awareness of the late diagnosis of women. In Aotearoa New Zealand, the unique maternity system is built on the principles of partnership and informed choice. However, there is a dearth of local data regarding the true size of the Autistic population, and whether their perinatal needs are being adequately addressed. This project explored the childbearing and early parenting experience of this underserved and overlooked cohort. It illuminated the processes by which they navigated this period and interacted with Aotearoa’s maternity services. Kathy Charmaz’s constructivist grounded theory was utilised to analyse data and co-construct theory with participants. A total of 15 Autistic mothers/parents who gave birth in Aotearoa New Zealand between 2012 and 2022 were recruited and interviewed via Zoom or email, following principles of inclusive research recommended by den Houting (2021) and Chown et al. (2017).</strong></p><p>The Autistic birthing experience elucidated in this study shares many of the hallmarks found in international research, including sensory hypersensitivity and misunderstandings exacerbated by poor practitioner knowledge of autism. The substantive theory, Domains of Protection, describes the decision-making and support-seeking strategies utilised by participants. The specific domains are Protection of the Body, Protection of the Mind, and Protection of and by Others, representing participant self-determination in prioritising their bodily autonomy, mental wellbeing, and the needs of others. The positioning of participants within the domains revealed individual approaches to personal and family health, integrating their perceptions of control, sensory thresholds, executive functioning overwhelm, and their limited means of securing effective support. Participants moved between these domains throughout and between pregnancies as they progressed through pregnancy and early parenting, continually reevaluating their expectations and plans with their actual outcomes. The local and international contributions of this thesis are intertwined. On a global scale, this research is unique for its investigation of Autistic pregnancy care within a service that is based on continuity, partnership and informed consent. Participants reported varied benefits from midwifery-led, continuity of care models. While they were able to avoid some of the failures in care reported internationally, miscommunication and experiences of unsupportive care were not uncommon. Locally, there is a need for a multi-level response. First, for systematic changes that prioritises inclusive, neurodivergent-affirming practices to meet the needs of Autistic parents and their multiply-disabled/neurodivergent whānau. Second, it also illuminates the need for local investment in research into autism and pregnancy and for the inclusion of midwives and other perinatal care providers as priority groups to receive advance training on neurodivergence.</p>