“Glimmers of hope and good things”: Positive aspects of caregiving to autistic adolescents and young adults

Abstract

Studies commonly measure the challenges of caring for autistic adolescents and young adults, but scarcely explore the positive aspects of the caregiving experience. This study employed an equal-status concurrent mixed methods approach to quantitatively assess predictors of positive aspects of caregiving and qualitatively examine 174 caregivers’ perceived rewards, or positive aspects, of caring for autistic adolescents and young adults (ages 16–30 years). Results from multiple regression analyses suggest that youth’s helping behavior most strongly predicted positive aspects of caregiving, and youth receiving more services and caregivers’ greater report of social support and use of religious, acceptance, and instrumental support coping also significantly predicted greater reported positive aspects of caregiving. Findings from a phenomenologically informed thematic analysis suggest that caregivers find reward in witnessing youths’ progress and joyous qualities, in the caregiver–youth relationship, and in caregivers’ own growth. Mixed methods findings highlight that positive aspects of caregiving likely extend caregivers’ self-development and may be relationship-specific. Study findings offer a strengths-based framework that highlights the positive aspects of caring for autistic adolescents and young adults. We contribute to the research in defining factors related to positive aspects of caregiving, which may inform future work and contribute to caregiver well-being.

Lay abstract

We wanted to explore the positive, or rewarding, experiences of caregivers who were caring for older adolescents or young autistic adults. We surveyed 174 caregivers, asking questions about how they dealt with stressors, the support they had from people in their lives, and the different behaviors of the autistic youth they care for. Using an existing measure, as well as an open-ended question, we asked caregivers about the most rewarding aspects of caring for their youth. When examining survey responses, we found that caregivers who reported receiving more help and support from their autistic youth also reported more positive aspects related to caregiving. In response to our study’s open-ended question, caregivers talked about the reward of seeing their youth grow and progress (e.g. learning new skills, reaching new milestones), described positive aspects of the relationship with their youth (e.g. sharing a special bond), and reflected on their own learning and personal growth as caregivers and people. Our findings highlight the positive, or rewarding, aspects of caregiving for autistic adolescents and young adults. This work will inform future work studying positive aspects of caring for autistic individuals and how this may impact caregivers’ psychological well-being.