Parenting a Child with Autism in India: Narratives Before and After a Parent–Child Intervention Program (original) (raw)

The discovery of autism: Indian parents' experiences of caring for their child with an autism spectrum disorder

Transcultural psychiatry, 2012

The current study investigated the lived experience of 12 parents of children with an Autism Spectrum Disorder in everyday cultural contexts in Goa, India. Narratives from parents collected between 2009 and 2010 were analyzed using the procedures of phenomenological psychology. Four temporal phases of parents' experience emerged from these data. Findings showed that the earliest phase of the child's life was a period of relative normalcy and social cohesion. In the second phase, the child's behaviors began to disrupt the everyday social order, but parents viewed these unexpected behaviors as temporary. In the third phase, parents' observations in public situations, along with assessments of others, led to a qualitative shift in which parents began to perceive that there was a persisting problem interfering with their child's social and practical activities. In the fourth phase, parents grappled with developing their child's capacities to meet existing practic...

Parenting in context: parents' experiences of caring for a child with autism in Bangladesh

International Journal of Anthropology and Ethnology (Springer), 2023

Although research on children with autism, their parents, and family-provider relations has substantially increased around the world, there has been a paucity of qualitative studies conducted on autism in developing countries or cross-cultural contexts. This qualitative study aims to explore parents' experiences of raising a child with autism, as well as how autism is framed in everyday cultural contexts in Bangladesh. Using a semi-structured interview schedule, the study conducted interviews with four fathers and eighteen mothers of children with autism. The findings of this study reveal that parents who care for a child with autism experience emotions of sadness, frustration, and isolation. Despite the immense challenges that come with raising a child with autism, many parents report that their stress and anxiety are compounded by the stigma, avoidance, and disparaging remarks they receive from their own family members and neighbors. The findings of this study may help researchers and healthcare professionals understand better as to how local cultural beliefs, experiences, and understandings influence, how parents and families care for and view the development of their children with autism, and how they look for support and treatment services.

Challenges, coping strategies, and unmet needs of families with a child with Autism Spectrum Disorder in Goa, India

Autism Research, 2012

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.

Parental Attitude and Expectations in Raising a Child with Autism Spectrum Disorder in India

The current study aims to understand the attitude of parents of 28 children with Autism Spectrum Disorder in India. This study was conducted in Chennai, an urban metropolitan setting in South India, and most of the respondents were middle and upper middle-class parents. In a country like India with a vast number of languages, cultures, socioeconomic disparities, and varying education levels, the challenge lies in finding a standardized understanding of Autism, and an optimal intervention package. Social norms and expectations play a significant role in shaping parental acceptance of ASD and their choice of intervention. Findings show that parents of children with ASD have the same expectations of their child as they do of their typically developing children, giving a leverage of a few years. There was also a mismatch between what was vocalized as being the ideal outcomes for their child and the steps taken to achieve them. This descriptive study illustrates the urgent need to provide parents with a uniform understanding of the condition, the availability of scientific intervention services and additionally, the need for a uniform policy on processes and educational and therapeutic intervention that will meet the needs of the child and that of the family.

Parents’ journey into the world of autism

South African Journal of Child Health, 2015

Autism Spectrum Disorder (ASD) manifests as a qualitative impairment in an individual's social interaction and communication, as well as restricted, repetitive and stereotyped patterns of behaviour. [1] The core characteristics found in a child with ASD include difficulties in social communication, language and related cognitive skills, and behaviour, as well as emotional regulation. [2] Children with ASD can present with difficulties in all five aspects of language (phonology, semantics, syntax, morphology and pragmatic); these difficulties vary according to the particular diagnosis of each child. It is generally agreed upon that whatever the diagnosis of a child with ASD, deficits in pragmatic skills and theory of mind are always present. These social communication deficits of a child with ASD may create a limitation in social experience, contributing to impaired development and learning, and challenging behaviours. Thus, children with ASD require a clear and effective mode of communication. [3] Speech language pathologists (SLPs) play an important role in enhancing a child's daily language skills, but therapy needs to extend beyond the therapy environment as a means of improving quality of life and daily functioning. Disabilities with a social component (such as ASD) are transactional; this implies that the effect of the language deficit does not only affect the child but the communication partners as well. [4] Communication partners are required to modify their interactive style and the environment in order to ensure successful communication. [5] Consequently, SLPs should recognise the significance of family involvement in the therapy process. Together, the SLP and family members should assess and monitor the effectiveness of intervention for the child with ASD; [5] because programmes that include parents/ caregivers prove to be effective with the involvement of SLPs. [6] The study conducted was undergirded by two theoretical frame works, namely the family systems approach and the International Classification of Functioning, Disability and Health (ICF) for children. The family systems approach is based on the notion that an individual's behaviour should be viewed and addressed within the context of the family. [7] The family undergoes changes and development over time, through which they are able to achieve a state of homeostasis. [8] Children with ASD are faced with developmental challenges that affect parental and family functioning, resulting in significant stress for all family members. [9] ICF is an early classification scheme introduced by the World Health Organization; it defines disability under three components, namely impairment, activity limitations and participation restriction. [10] The ICF allows for individuals to be classified according to health domains (hearing, talking and memory) as well as healthrelated domains (education and social interaction). [10] The ICF classification allows for ASD to be classified as a disability, owing to the associated language impairment and limitation in activity participation. The ICF presents factors that result in functional limitations as well as factors that may enhance optimum functioning, thereby guiding SLPs to help children with language impairment to improve their daily functioning in terms of language, communication and interaction. [11] The challenges experienced by parents/caregivers in raising a child with ASD have been documented mainly in England, North America and Australia. [12] In addition, research regarding the communicative Background. Autism Spectrum Disorder (ASD) is a developmental disability that results in an impairment in an individual's social interaction and communication, as well as restricted, repetitive and stereotyped patterns of behaviour. Children with ASD display difficulties in the areas of social as well as communicative behaviour. Parents, caregivers and family members are the main communication partners of children with ASD. Living with a child with ASD can result in changes within a family system. Objective. To describe the challenges and experiences faced by families in their interaction with their child with ASD, caregiver coping strategies and the success of these strategies, and the generalisation and carryover of therapeutic strategies provided by a speech language pathologist (SLP). Methods. A qualitative descriptive research design was selected to explore the objectives of the study. Ten participants were recruited; all participants were parents of a child with ASD attending Learners with Special Educational Needs School in Gauteng, South Africa. Data were collected through a semistructured facetoface interview survey comprising open and closedended questions, and were analysed using thematic content analysis. Results. The results revealed five main themes, namely communicative challenges, family experiences, communicative coping strategies, speech and language therapy services and strategies provided by the SLPs. Communicative challenges were experienced by parents of one child with ASD. The communication and behaviour of children with ASD were found to affect the daily functioning of the family. The majority of parents reported not learning a new mode of communication, but rather adapting and adjusting to the communication of their child. Communicative coping strategies were required for novel social settings. There were mixed responses with respect to parent's abilities to access and learn new communicative coping strategies. Speech and language therapy assisted in improving the child's communication skills, while strategies provided by SLPs were explained to be effective even though generalisation of strategies was limited. Conclusion. This study concluded that parents and children with ASD experience challenges in communication and interaction. The family systems approach as well as the World Health Organization's International Classification of Impairments, Disabilities and Handicaps are two functional frameworks that can assist SLPs to provide intervention to children with ASD.

Lived Experiences of Mothers Raising Children with Autism in Chitwan District, Nepal

Autism Research and Treatment, 2021

Background. Autism is a neurodevelopmental problem that is increasing at an alarming rate worldwide. Rearing and caring for children with autism depends upon the perception of mothers and various factors associated with it. There is a gap in the literature regarding the detailed accounts of mother’s experiences regarding autism in Nepal. Hence, this study was undertaken to explore lived experiences of mothers raising children with autism. Materials and Methods. Qualitative phenomenological study design was used and nine mothers with autistic children were selected using purposive sampling technique. Data were collected using in-depth interview guidelines and analyzed using Colaizzi’s steps. Results. Findings of the study revealed that mothers raising children with autism encountered numerous problems in their life. They felt physically exhausted due to the continuous supervision of their child. Emotional problems such as denial, upset/sadness, and worry were also common among them. ...

Experiences and perceptions of parents raising children with autism

Background The prevalence of autism spectrum disorder (ASD) in general and autism in particular is on raise globally and the need for evidence-based intervention and care for children with autism has grown, too. However, evidence on autism is scanty in developing countries including Ethiopia. With the aim to help fill the gap and paucity in research into the issue, the main purpose of this study is to explore, better understand, and document the experiences and perceptions of parents of children with autism. Methods Qualitative survey was used to collect data from a convenient sample of parents raising a child with autism. Twenty-one respondents completed the qualitative survey dispatched. Vast majority (about 80%) of the participants were mothers who were caring for their child with autism. Age of the participant parents ranged between 27 and 67 years (Mean Age = 44.00 years; Standard Deviation = 10.02 years). Ages of children with autism cared for ranged between 4 and 43 years (Me...

Parent Voices: Early Experiences with Autism

In this chapter, three parents of young children with autism spectrum disorders (ASD) share their experiences. Chapter 2 of this monograph describes family-centered intervention as a guiding principle. The perspectives and insights offered here have important implications for the underpinnings of family-centered approaches: actively including families on the intervention team, addressing family priorities, and supporting families to promote their children's development naturally within the parent-child relationship. Although each author's story reflects unique cultural or familial values and experiences, common themes are highlighted in the boxes.

Understanding the Parental Challenges in Raising Autism Children

Journal of Management Info

Throughout the world, many children are diagnosed with Autism Spectrum Disorder (ASD). There are many challenges parents face in raising these special children. It includes the educational, financial, social and mental aspects of the parents themselves. Even parents with autism children are said to suffer more stress than parents with normal children or other disabilities. This article is intended to gain a better understanding of the major challenges parents face in autism children. Based on the reading and observation, parents found that children with autism had their own challenges in raising their children. They need the support and concern of all parties to stay strong for their children. At the end of this article is the hope that the parental voice can be addressed. Also, this service can inspire parties such as government departments, NGO’s and the rest of the community to come up with a program or support plan that can help parents and children with autism. This study uses ...

The effectivenness of the Parent-mediated intervention for Autism Spectrum disorder in South Asia (PASS): a Randomised Controlled Trial in India and Pakistan

The Lancet Psychiatry, 2015

Background Autism affects over 5 million children in South Asia. There are early interventions evidenced in high-income countries, but no substantive trials of adaptations within low-and middle-income countries (LMIC). Methods A parallel group single blind randomised trial comparing a 12 session parentmediated communication-focused intervention for autism (PASS) plus treatment as usual (TAU) with TAU alone delivered by non-specialist health workers from two centres (Goa, India; Rawalpindi, Pakistan). Children 2-9 years with autism were randomly assigned in a one-to-one ratio by probabilistic minimization, controlling for treatment centre; age (<6 years/≥6 years) and functional impairment (Vineland Adaptive Behaviour Scale Composite score [<65/≥65]. Primary outcome was quality of parent-child interaction on the Dyadic Communication Measure for Autism (DCMA) at 8 months. Secondary outcomes were child language, social communication and functional adaptation. Analysis was by intention to treat using regression models. Trial registration; ISRCTN79675498.