Disparities over the Life-Course: Experiences of Adolescents and Adults with Autism Spectrum Disorder and Their Parents in India

Background and Purpose: Knowledge on adolescent and adults with Autism Spectrum Disorder (ASD) in India is limited. The focus of current literature is primarily on young children, with a small majority focusing on adolescents. Adolescents and adults with ASD experience unique challenges, so do their parents, whose lives are intimately tied to the child with ASD. In the context of India, the adults and adolescents belong to a generation where policy and services are at a nascent stage. Up until April 2016, ASD was not officially recognized as a formal disability under India’s People with Disabilities Act and hence individuals with ASD were not eligible for special accommodation. As such, from a services point of view, ASD is a new diagnosis. The long history of disparity is likely to have shaped the experiences of individuals with ASD and their caregivers. There is a need to critically explore how a systemic disparity at each life-stage impacts life-course outcomes of individuals with ASD and their parents. The information would aid in developing inclusive services through life for generations of individuals with ASD in India.

Methods: Seventeen in-depth semi-structured interviews were conducted with parents of adolescent and adult non-institutionalized children professionally with ASD. A snowball sampling strategy was appropriate because transition-aged youths and adults with ASD’s often fall through the service system on reaching adulthood. Clinicians were the first point of contact to get access to parents, for further referral. Interested participants contacted the investigator directly. On obtaining an informed consent, the respondents (including signed copies), were interviewed at a place and time deemed convenient. Interview lasted between 2 and 3.5 hours. Data obtained was transcribed verbatim and thematically coded using inductive qualitative analytic technique.

Results: The study found a range of disparity experienced by children with ASD and their parents at each life-stage, while interacting with the following systems - education, health, and employment. First, adolescent and adults with ASD on average moved four to seven schools before they reached eighteen or transitioned out of the formal education system. A range of reasons cited was, lack of accommodation and tailored programs to meet the needs of the child, poor implementation of policies, insensitivity of the school system, and cost of care. Second, health disparities began early on and continued through life. It started from delays in diagnosis to disparity in availability and accessibility of health services (personnel, distance, etc.). Third, vocational opportunities were much needed, yet raised questions about the sustainability and ability of these programs to ensure financial independence of adults with ASD. The early life and continuing disparities at each life-stage impacted the current functioning of individuals with ASD and the current and future concerns and experience of their parents. The experience was further shaped by a range of child and parent background characteristics.

Conclusions and Implications: The findings call for a need to examine disparities at each life-stage to inform and help develop equitable policies and opportunities for individuals with ASD to help them thrive through the lifespan.