Perspectives from parents of autistic children on participating in early intervention and associated research

Abstract

Early support should help autistic children lead flourishing lives. We sought to understand parents’ experiences of their children’s involvement in early intervention and associated research, through focus groups with 23 parents (of 22 children) enrolled in a university-affiliated service. Reflexive thematic analysis revealed four themes. Parents conveyed a strong sense of gratitude (Theme 1) arising from their perceptions of the importance of early intervention and feelings of having ‘hit the jackpot’ to secure access to the service from which they perceived their children ‘gained so much’. They valued the service and staff expertise which made them feel secure (Theme 2). University affiliation and the associated research also contributed to parents’ sense of safety, from perceived ‘accountability’ and ‘integrity’. Parents conveyed deep commitment to the service (Theme 3) but shared often-negative experiences as their child’s enrolment came to an end (Theme 4) and they expressed feelings of abandonment and disempowerment, being confronted with the reality of needing to secure next-stage support for their children and of perceived critical need for ‘conversion of research into practice’. These parents’ accounts offer insights into the benefits and ongoing challenges of achieving truly effective supports for autistic preschoolers and their families. Lay abstract Support for autistic children early in life should help them to lead flourishing lives. However, many of the early intervention programmes for young autistic children are time-consuming and costly for families. These programmes are also often conducted in settings that are not closely matched to real life. We spoke to 23 parents (of 22 autistic children) to understand their experiences of their children’s involvement in early intervention. Parents told us they were grateful for the opportunity, that they had ‘hit the jackpot’, and their children had ‘gained so much’ from the programme. They seemed to value the service because it made them feel safe and secure during an uncertain time in their children’s lives. Parents told us they trusted staff, felt that they weren’t ‘doing it alone’, and this ‘took that pressure off’ and helped them feel empowered. They also spoke of feelings of safety from being linked to the university research programme which offered ‘accountability’ and ‘integrity’. Parents’ comments showed a strong commitment to the early intervention model and staff – but also common feelings of abandonment and disempowerment as their child’s time with the programme came to an end and they went ‘back to the real world’ and needed to find new supports for their children. These parents’ insights should help to inform the design and delivery of community supports for preschool-aged autistic children and their families, which match the reality of their lived experiences.