Background and aims: The needs of autistic individuals and their families are unique in each developmental phase, but this diversity is more palpable during adolescence. Literature generally presents a view that caregivers experience challenges in caring for autistic children, especially in low- and middle-income countries, where formal support services are uneven or unavailable. The present study explored the lived experiences of parents of autistic adolescents in the Indian context.
Methods: In-depth interviews with 12 parents were analyzed using an interpretative phenomenological approach.
Results: Three superordinate themes were derived: (a) Acceptance alongside recurring experiences of grief and loss, (b) post-traumatic growth and vicarious transformation, and (c) What after me? Planning for future care services with limited systemic support.Beginning with the initial recognition and diagnosis of autism spectrum disorder, parents progressed through a series of experiences that strengthened and challenged their understanding and aided in their acceptance. Parents recognize their adolescents' key attributes, growth, development, and persisting differences that could contribute to future challenges. Grief experiences, however, sporadic, persisted alongside acceptance.
Conclusion: Despite challenges, families were adapting to the changing needs of the developmental phases in unique ways, with or without formal support available to them. Nonetheless, there is a considerable need to address the existing gaps and felt needs of parents, focusing on empowering parents and capacity building toward providing comprehensive services to autistic individuals with a lifespan approach.
Keywords: Autistic adolescents; India; autism; interpretative phenomenological analysis; parenting experiences.
© 2024 The Author(s).