Abstract Caregiving is often assessed based on measurable time, focusing on perceived negative consequences. However, parents of autistic adult children in a NEET (not in education, employment, or training) position challenge these metrics, exposing the limitations of such assessments in capturing the relational complexities of caregiving. Three focus groups were conducted (n = 11) with parents with lived experience, exploring the relationship between time and caregiving. Analysed through the lens of crip time, the parents described extensive care labour within a welfare system operating on linear logic, but experienced as ‘bureaucratic downtime’, circular and unproductive. To compensate for insufficient support, they undertook time-consuming work to prepare, prevent, and predict an unpredictable everyday life, labour that was difficult to quantify due to its extent and normalisation. They negotiated demands shaped by able-bodied norms of productivity and functionality interpreted as a relational and political understanding of disability. They challenged notions of time rooted in linearity and productivity, by highlighting alternative temporalities shaped by care. These experiences eroded trust in the system, fuelled fears for their children’s future, and challenged norms of time, care, and productivity. This study calls on social work practice to critically rethink time assessments to better reflect lived experience.
Malin Ljungberg (Thu,) studied this question.