Parental experiences with an adolescent female and male with Autism Spectrum Disorder (ASD) in India

Abstract

Purpose The purpose of this paper is to compare experiences of two parents of adolescents with Autism Spectrum Disorder (ASD) differing in gender, including their daily routines at school and at home, challenging behaviour, social support and future plans for their children. Design/methodology/approach The parents of the two adolescents with ASD were interviewed with open-ended questions related to their children as well as their personal experiences, along with getting their individual responses for the established Satisfaction with Life Scale (SWLS). Findings There were similarities and differences in the parents’ experiences with their adolescent children with ASD. Similarities included a limited social support outside their families, hopes for the future of their children, where in they emphasised the need for some “normality” for their child, and a lack of plan in terms of legal guardianship and written wills after their own time. Some of the differences were also noted in the parents’ description of symptoms of their children, with the father of the female adolescent reporting more negative experiences both with his child, as well as with his spouse, a lack of social support and, subsequently, more “dissatisfaction” on the SWLS than the mother of the male adolescent. Research limitations/implications One of the major limitations of this study is the absence of feedback from the other parent besides the one being interviewed, due to which only one parental perspective was provided here. Social implications There are vital social implications of this study. Both parents reported a limited social support due to which they expressed the need for increasing awareness for ASD in the general society. These findings illustrate the need for a focus on designing interventions for improving outcomes for both parent and child in similar situations. Originality/value This study compared the experiences of two parents of adolescents with ASD, differing in gender and symptomology, but similar in other respects, including the family demographic characteristics and cultural context.

A Narrative Review of Autism Spectrum Disorder in the Indian Context

“…A majority of the studies found that parents and families of children with autism have to go through a lot of difficulties to provide rehabilitation to their children. 17,26,[30][31][32][34][35][36]48 Parents of children with autism need to be informed and trained so that they can become competent caregivers. Additionally, it is important to provide suitable counseling to families of children with autism to address their own feelings of grief and helplessness.…”

“…As a result, he expressed greater dissatisfaction on the satisfaction with life scale compared to the mother of the male adolescent with ASD. 32…”

“…As a result, he expressed greater dissatisfaction on the satisfaction with life scale compared to the mother of the male adolescent with ASD. 32 Minhas A et al found that the mother is often solely responsible for taking care of the child with autism, which causes them to experience a lot of stress. The lack of understanding about autism among family members and healthcare providers results in a delay in recognizing the condition and providing the right support and treatment for individuals with autism.…”

“…Fathers report more difficulties with their child's autistic behavior and generally have less participation in parenting, and they cope up with the stress by working away from home. 32 Bhullar compared the experiences of parents of 2 adolescents with ASD differing in gender, including their daily routines at school and at home, challenging behavior, social support, and future plans for their children. Parents of the 2 adolescents with ASD were interviewed with open-ended questions related to their child and their personal experiences.…”