Parents’ perspectives on care of children with autistic spectrum disorder in South Asia – Views from Pakistan and India

Abstract

Autism spectrum disorder (ASD) affects about 1.4% of the population in South Asia but very few have access to any form of health care service. The objective of this study was to explore the beliefs and practices related to the care of children with ASD to inform strategies for intervention. In Pakistan, primary data were collected through in-depth interviews of parents (N = 15), while in India a narrative review of existing studies was conducted. The results show that the burden of care is almost entirely on the mother, leading to high levels of stress. Poor awareness of the condition in both family members and front-line health-providers leads to delay in recognition and appropriate management. There is considerable stigma and discrimination affecting children with autism and their families. Specialist services are rare, concentrated in urban areas, and inaccessible to the majority. Strategies for intervention should include building community and family support networks to provide respite to the main carer. In the absence of specialists, community members such as community health workers, traditional practitioners and even motivated family members could be trained in recognizing and providing evidence-based interventions. Such task-shifting strategies should be accompanied by campaigns to raise awareness so greater inclusivity can be achieved.

‘You are labelled by your children’s disability’ – A community-based, participatory study of stigma among Somali parents of children with autism living in the United Kingdom

“…Our research supports the findings of other recent studies in Australia (Broady, Stoyles, and Morse 2015), Nepal (Heys et al 2016), Pakistan and India (Minhas et al 2015), China (Lu et al 2015), the USA and Canada (Kinnear et al 2016) that suggest stigma continues to be a significant challenge for many families of children with autism, irrespective of their ethnic and cultural backgrounds. Kinnear et al's (2016) study in North America found that stigma and their child's autism-related behaviours played the largest roles in making parents lives challenging.…”

A Conceptual Framework for Understanding the Cultural and Contextual Factors on Autism Across the Globe

“…The causes of autism are complex and multi-factorial (Lai et al, 2013); most cases of autism are idiopathic and this uncertainty may add to the plethora of perceived causes reported by parents of children with ASD. Examples of biological or medical explanations attributed to ASD are hereditary factors (Gona et al, 2015;Heys et al, 2017), infectious disease (Gona et al, 2015;, an accident (Al-Dababneh, Al-Zboon, & Baibers, 2016;Minhas et al, 2015;Shaked & Bilu, 2006;Tilahun et al, 2016), complications during pregnancy or birth (Al-Dababneh et al, 2016;Gona et al, 2015;Heys et al, 2017;Shaked & Bilu, 2006;Shyu, Tsai, & Tsai, 2010;Tilahun et al, 2016) or malnutrition (Gona et al, 2015;Heys et al, 2017). In the USA the most common perceived causes reported by parents are genetics/heritability and environmental risk factors, including heavy metals, food, pesticides, pollution and other exposures (Chaidez et al, 2018;Zuckerman, Lindly, & Sinche, 2016).…”

Autism Behavioural Interventional Research in low–resource settings: Overcoming prevailing challenges ­ an Asian perspective

“…Families of children with ASD experience tremendous strain Minhas et al, 2015) and significant emotional distress, both at personal and social spheres while receiving the diagnosis of ASD.…”

“…On one hand, there is focus on addressing the lack of existing interventional modules by adapting established modules from HIC and attempting task-shifting to suit the resource needs in LAMIC (Hastings et al, 2012;Rahman et al, 2015;Wallace et al, 2012).…”