Invisible scaffolding: families as a hidden public health workforce in autism services in India

Purpose The purpose of this paper is to examine how families, particularly mothers, function as a hidden workforce in autism care systems struggling to meet demand. This paper highlights the risks of treating caregivers as substitutes for professional staff and underscores the need to recognise their contributions within inclusive practice. Design/methodology/approach This reflective essay draws on practice insights and field experiences of families navigating autism care. This study interprets how unpaid caregiving becomes central to sustaining children’s progress when formal services are unavailable or inaccessible. Findings Caregivers sustain essential continuity of care but at significant personal cost. Mothers frequently reduce or leave employment, leading to financial strain, emotional burnout and social isolation. These burdens remain largely invisible to practitioners and policymakers, yet they directly affect the sustainability of inclusive systems. Practical implications For practitioners and policymakers, inclusive practice requires acknowledging caregiver labour, providing structured training and emotional support and defining limits to what unpaid caregiving can sustain. Making this hidden workforce visible is critical to building equitable and resilient systems of care. Originality/value This paper reframes unpaid family caregiving not as background support but as a workforce issue. By presenting field perspectives, this paper argues that maternal and child health and autism service frameworks must move beyond viewing families solely as recipients of care and recognise them as integral but overburdened actors in service systems.