Challenges, Coping Strategies, and Unmet Needs of Families with a Child with Autism Spectrum Disorder in Goa, India

Abstract

Autism Spectrum Disorders (ASD) are increasingly recognized in developing countries like India. However, little is known about the experiences of parents raising a child with ASD. This study aimed to describe the experiences of families in Goa, India with a view to understanding the unmet needs of families raising a child with ASD. Twenty in-depth interviews and nine focus group discussions were carried out with families of children with ASD and key community stakeholders such as special educators, teachers, and parents of typically developing children. This qualitative data was triangulated to explore the experiences, life impact, and unmet needs of raising a child with ASD. Key findings suggest that raising a child with ASD puts a tremendous strain on families due to competing commitments, often leading to initial social withdrawal with later reintegration into social networks. Second, the impact is multidimensional, involving the personal sphere but also extending into the wider community with negative experiences of discrimination. Third, parents actively respond to these challenges through a range of approaches with help from existing and new social support networks and health care providers. Fourth, professionals from the health, education, and religious sectors have a low awareness of the unique needs of families living with ASD which leads to a considerable economic and emotional burden on families. Finally, as a consequence of these experiences, several unmet needs can be identified, notably for supporting increasingly isolated families and the limited access to multidisciplinary evidence-based services for ASD.

Autism: A Global Perspective

“…For example, in a recent UK qualitative study on experiences within the pre-diagnostic period, parents of children with autism reported that they were told that "there was nothing to worry about and their children would grow out of it" [16, p 380]. One father, who spoke about the long journeys and financial burden of multiple consultations in India, shared that he was given sleeping tablets for his child, because professionals thought that his child's autism would improve if he slept better [2]. This raises the additional issue of the extent to which health care professionals appropriately include families in the screening process to ensure improved uptake of recommendations for diagnosis and treatment [17].…”

“…While some affected by the condition lead independent and fulfilling lives, others suffer serious disabling consequences as a result of having autism [35,37]. It is possible that, at least in some cases, secondary disabilities may emerge as a result of inadequate care, stigma, and isolation that those affected may experience, both in LMICs (e.g., [2,38,39]) and HICs (e.g., [3•, 40]). …”

The Role of the Family in Socializing the Autistic Children: A Study in Bangladesh

“…55 Divan et al (2012) discussed that, Autism Spectrum Disorders (ASD) are increasingly recognized in developing countries like India. However, little is known about the experiences of parents raising a child with ASD.…”

Assessment and diagnosis of autism in developing countries: the Indonesian adaptation of Autism Detection in Early Childhood (ADEC)

“…Social pressure, stigmatisation, and cultural influence, are common issues that have to be taken into account in developing countries. For example, in India, parents prefer to take their children to be evaluated using spiritual or alternative approaches, while in Saudi Arabia, China, and India, parents tend to delay meeting ASD practitioners in order to avoid the social stigma of having a child diagnosed with ASD (Divan et al, 2012, Seif Eldin et al, 2008, Sun et al, 2013a.…”

“…In a study by Divan et al (2012), 10 parents of children with ASD who lived in a small city at Goa, Western India, were interviewed in order to understand their challenges and needs. Besides the parents, the study also interviewed 4…”