Parenting Challenges and Reasons for Not Availing Rehabilitation Services Among Families of Adolescents with Autism Spectrum Disorder: A Qualitative Study

Abstract

Background: Autism spectrum disorder (ASD) is a lifelong condition requiring continued rehabilitation services. However, children with ASD who seek rehabilitation services tend to drop out once they enter puberty, because of varying reasons, some of which are unknown. This study intended to explore the reasons for not availing of rehabilitation services in families of adolescents with ASD and the parental challenges in taking care of adolescents with ASD. Method: The study followed a descriptive qualitative research design by conducting in-depth interviews with 12 primary caregivers of adolescents with ASD (10 to 19 years; mean age 16.3 years) who were not availing of any direct rehabilitation services. All interviews were conducted by telephone, and data obtained were subjected to thematic analysis. Results: The results showed two major themes, viz. reasons for discontinuing the rehabilitation services and parental challenges among primary caregivers of adolescents with ASD, and their corresponding subthemes. The reasons for discontinuation of rehabilitation included financial difficulties, difficulties in handling the child, and a lack of improvement in the child. A few of the parental challenges were disruptive behaviors and associated medical conditions of the child and difficulty in managing changes during adolescence. Conclusion: The study revealed several reasons as well as potential barriers to avail rehabilitation services in Indian families of adolescents with ASD. The data further unveil related parenting challenges specific to the Indian context. Further, implications for service providers and policymakers are discussed.

Barriers to Vocational Rehabilitation in Adult Autism Spectrum Disorder: A Case Series from a Tertiary Mental Health Care Institute in India

“… 15 A recent qualitative study cited financial difficulties and nonimprovement as the reasons for discontinuing rehabilitation services for adolescents with autism. 16 The same barriers can exist for the AwASD. The lack of affordable long-term residential services is an established problem India and other LAMICs face.…”

Evaluating Parents’ Concerns, Needs, and Levels of Satisfaction with the Services Provided for ASD Children in Saudi Arabia

“…High SLS session costs were one of the most reported reasons to discontinue receiving the services, consistent with the literature investigating financial constraints as barriers to accessing different rehabilitation services. [51][52][53] This financial concern is valid, as the average monthly cost of therapy sessions is reported to be between a quarter and a third of a family's total monthly income in Jordan. 14 A study conducted in the US found that the overall cost of raising a child with ASD across his/her lifespan is over USD1 million.…”