“Something is not right”: caregivers’ and educators’ perceptions of developmental concerns in toddlers at elevated likelihood of autism

Abstract

The pre-diagnostic period before an autism diagnosis is a critical yet underexplored phase for families and educators. This study aimed to explore how family caregivers and educators experience the pre-diagnostic period of toddlers at elevated likelihood of autism, focusing on perceived developmental concerns, family impact, help-seeking trajectories, and support needs. An exploratory qualitative design was used, based on semi-structured interviews with 15 participants (family caregivers and educators) associated with five children who screened positive for autism risk on the M-CHAT-R/F at 30 months. Data were analysed using thematic analysis. Findings were organised into four key themes aligned with the study objectives: (1) perceived developmental challenges and their impact on family dynamics; (2) caregivers’ experiences in accessing formal and informal support during the pre-diagnostic period; (3) barriers and facilitators in accessing specialised support; and (4) support needs during the pre-diagnostic period. The pre-diagnostic period was characterised by the progressive emergence of developmental concerns, particularly in communication, social interaction, emotional regulation, routines, autonomy, and sensory processing. These experiences were associated with significant impacts on family functioning, including increased caregiving demands, emotional strain, and concerns regarding the child’s future. Two distinct help-seeking trajectories were identified: one marked by early recognition and proactive mobilisation of support, and another characterised by delayed help-seeking, often associated with the normalisation or minimisation of concerns. Access to support was shaped by both facilitating factors (e.g., parental sensitivity and educator involvement) and barriers (e.g., long waiting times, financial burden, and limited recognition of concerns by professionals). Caregivers also reported unmet needs, including greater access to therapeutic services, diagnostic clarification, psychoeducation, and psychological support. Overall, the findings highlight the pre-diagnostic period as a critical and under-recognised phase of family adjustment, characterised by uncertainty and active meaning-making. These results underscore the need for earlier validation of caregiver concerns, enhanced professional training, and more accessible, needs-based support prior to formal diagnosis. Pre-diagnostic autism period marked by uncertainty and concerns Communication and social differences emerge as main early concerns Early developmental challenges impact the family system Support access shaped by systemic barriers and contextual facilitators Caregivers reported unmet needs in therapy, diagnosis, and support