Mothers’ experiences of their adopted child being diagnosed with an intellectual disability post-adoption

Abstract

Adoptive-parenting and parenting a child with intellectual disabilities (ID) both present additional stressors relative to birth parenting and adoptive parenting of children without an ID. However, despite children with ID being overrepresented among adopted children populations, very little is known about the parental experiences of having a child diagnosed with an ID post adoption. Interpretative Phenomenological Analysis was used to analyse interviews from eight adoptive mothers regarding their experiences of their child being diagnosed with an ID post-adoption. Three superordinate themes were developed: ‘Trauma of intellectual disability’ related to experiences of betrayal, loss and searching for answers in the context an unexpected diagnosis; ‘isolation and marginalisation’ illustrated experiences of isolation from friends, family and professionals alike; and ‘growth and resilience’ highlighted how mothers leant into challenges and renegotiated their hopes for the future. The findings highlighted a lack of appropriately tailored post-adoption and post-diagnostic support from services. Adoptive mothers requested greater inclusion and transparency during the diagnostic process. The findings indicated the importance of adoptive mothers ‘finding their tribe’ suggesting that post-adoption and ID services could do more to facilitate support networks of people with shared experiences.