A Critical Need for Neuro-Affirming Maternity Care: Perinatal Experiences of Autistic, ADHD, and AuDHD Mothers

Abstract

To understand the perinatal experiences of autistic, ADHD, and AuDHD mothers and identify recommendations for neuro-affirming maternity care. Data were collected via an online qualitative survey with open-ended questions to capture the perinatal experiences of 37 neurodivergent individuals. The sample comprised participants identifying as autistic (40.5%), ADHD (21.6%), or AuDHD (37.8%). Responses were analysed using thematic analysis. Three themes were developed: (1) qualities of neuro-affirming care, (2) embodied and cognitive experiences, and (3) self-understanding and understanding from others. Recommendations for practice were also identified. Participants emphasised preferences for clear, tailored communication and consistency, noting that unpredictability and conflicting information contributed to significant distress. Sensory overload, interoceptive differences, and dysregulation were common. Most participants were undiagnosed during their first pregnancy, leading to internalised blame, shame, and missed opportunities for support. For most participants, diagnosis was described as transformative. These findings can be understood through the concepts of the double and triple empathy problem: mismatches between neurodivergent and neurotypical people, gaps between clinicians and laypeople, and added barriers from late diagnosis, where individuals struggled to express needs and professionals lacked the tools to recognise them. While barriers persist, examples of good practice were reported. Most adjustments identified were low-cost and relational. Recommendations include embedding neuro-affirming principles into systems, enhancing professional learning, and developing screening and referral pathways during pregnancy and the postpartum period.