18 Exploring Caregiver Perspectives on Acceptance and Commitment Therapy and Application to Early Intervention for Young Autistic Children

Abstract Background Caregivers of young autistic children face high levels of stress. With increasing focus on caregiver-mediated early intervention, which requires that caregivers learn and implement skills to address their child’s developmental needs, the stress experienced by caregivers may impact their participation. Currently available mental health interventions, including acceptance and commitment therapy (ACT), target caregiver stress but are not well-studied in caregivers with young autistic children and who are participating in early intervention. Objectives To identify caregivers’ perspectives on: i) the benefits and disadvantages of participating in ACT, and ii) the potential application of ACT to those caregivers whose children are participating in early intervention. Design/Methods This qualitative study utilized reflexive thematic analysis with a constructivist approach to explore caregivers’ perceptions of ACT. Demographic information was collected and semi-structured interviews were conducted with 8 caregivers from Ontario, Canada. Interviews were coded and themes generated from the codes. Themes were revised based on feedback from the research team and member-checking. Results Participants included mothers from single or dual-parent households with 1-2 autistic children or adults diagnosed before age 5 years who had taken an in-person or virtual ACT workshop between 2012-2020. In exploring the benefits and disadvantages of ACT, the theme changing caregiver’s perspective on prioritizing self highlights the shift in our participants’ focus to their own needs through accepting and managing their emotions and stress, aligning their actions with their chosen values, and moving towards acceptance of their child. Participants acknowledged feeling supported through establishing a community of other caregivers with whom they could share experiences and process emotions in a psychologically safe environment. Despite practical barriers to accessing ACT, participants noted their experiences in learning ACT were facilitated by their shared philosophies, use of imagery and hands-on activities to reinforce complicated concepts, and participation in a group designed to train ACT facilitators. Participants also shared their views on applying ACT to early intervention, providing their recommendations about accessibility, workshop timing and features, and community support. Considerations prior to participating in ACT included addressing gaps in messaging around the importance of caregiver mental health and wellness and a caregiver’s readiness to seek wellness support. Participants also maintained the importance of highlighting a child’s strengths and acceptance of the child. Conclusion Themes from this study highlight the internal process whereby caregivers begin shifting their focus on their own mental health needs, as well as the relational aspects of the group that contribute to the feeling of support. Though ACT participants had varying personal experiences with early intervention, their insights into integrating ACT along with early intervention provide a starting point in developing a truly family-centred intervention that honours the reciprocal relationship between child and caregiver.