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

In many low and middle income countries where autism-related resources are scarce, interventions must rely on family and parents. A 3-month Parent–Child Training Program (PCTP) at Action For Autism, New Delhi, India is aimed at empowering and educating parents, encouraging acceptance of their child, and decreasing parent stress. Forty couples were asked to describe their child with autism using the Five Minute Speech Sample (FMSS), an open-ended narrative method, before and after the program. Parents described a wide range of child behaviors, primarily social and cognitive skills. While all families were of a relatively affluent strata compared to the general Indian population, there were nonetheless significant differences in parents’ narratives based on their income levels. Coming into the program, parents with relatively less income focused on their child’s immediate and material needs, while higher income parents discussed their parental roles and vision for society. After the PCTP, parents were more likely to reflect on their child beyond comparisons to ‘normality,’ and beyond the here and-now. Mothers were more likely than fathers to reflect on themselves and their relationships with their child. Understanding parents’ experiences and narratives is essential for the evaluation of interventions such as the PCTP, as Indian parents are incorporated into a growing global network of ‘parents of children with autism.’

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Transcultural psychiatry

Frederick Wertz Sr. , Miraj Desai

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...

Autism Research

Miraj Desai , Luisa Strik-Lievers

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.

IOSR Journals

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.

South African Journal of Child Health

Shabnam Abdoola

Tibebu Yohannes

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...

Journal of Management Info

Naziah Abd Kadir

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 ...

T. Keneni Walga

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. To this end, we used qualitative survey to collect data from a convenient sample of parents raising a child with autism. The data collected were subjected to qualitative analysis that yielded several themes and subthemes including late diagnosis, parents' reactions to diagnosis, sources of information during and after diagnosis, differing reactions to having a child with autism from siblings, extended family members and the larger community, attribution of autism to several causes by the community, lack of recognition and open discussion of autism and lack of appropriated public educational and health care services for children with autism and their parents. The themes and subthemes identified were discussed in light of existing literature and implications for practice were drawn.

International journal of health sciences

Manisha Choudhury

Aim of the study: The main aim of the study is to investigate husband’s social support for mother of children with autism. Method: Interview was conducted for 20 mother participants who were married and having children with autism aged between 4-15 years. Data collected was analyzed by using interpretative phenomenological analysis (IPA) approach. Results: The data analysis was divided in five domains. First, the impact on marriage relationship; second, husband’s role in parenting children with autism; third, mother’s perception regarding husband’s social support; fourth, indicated factors influencing husband social supports; and fifth the result explored the effect of husband’s social support for mother. The discussion and limitations of the present study has been considered. Application: The findings highlight the areas for rehabilitation professionals who should also focus on the relationship pf parents for better improvement of the child and family.

Social Science & Medicine

Thomas Weisner , N. Singhal

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Autism in India: how a pioneering jobs scheme is opening up opportunities

Company says adapting recruitment processes for neurodiverse groups disproportionately affected by unemployment has led to increased innovation

T alking to people can be difficult for Rishabh Birla, but his last job demanded he did a lot of it. He has autism and finds making eye contact uncomfortable. For Birla, the rules of conversation are puzzling and he sometimes veers off course, alarming the other person.

A 25-year-old postgraduate, Birla had been working at a cosmetics startup in Thane, not far from Mumbai. “The job involved communicating with different clients to keep track of their orders. It was exhausting to interact with so people every day,” he says.

When he heard last year that Ernst & Young (EY) was recruiting people with autism, learning disabilities, dyspraxia, Asperger’s syndrome and attention deficit hyperactivity disorder (ADHD) to their Mumbai office, he applied. His decision was based more on wanting to experience a corporate recruitment process than any real expectation of securing a job, he says.

After a specially designed process broken down into stages and spread over two months, Birla was offered a job as an analyst. “My family and I were elated. This is a major milestone in my life personally and professionally,” he says.

The job offers to Birla and four others from a shortlist of 13 candidates were part of EY’s new initiative on neurodiversity, an umbrella term that refers to variations in neurocognitive functioning.

Since EY pioneered recruitment of a neurodiverse workforce at its Philadelphia, US office in 2016, it has become more widely accepted within the company that neurodivergent individuals often have specialised contributions to make in the workplace, particularly in the booming sectors of artificial intelligence, robotics and process automation.

Recruiting neurodivergent people is not about corporate social responsibility, but a business imperative.

“We see a clear role for neurodiverse candidates in these areas,” says Amarpal Chadha, partner at EY’s People Advisory Services. “These individuals are often technologically inclined and detail-oriented, with strong skills in analytics, mathematics, pattern recognition and information processing – among the very skills businesses most urgently need.”

When the impact of the first neurodivergent recruits to the Philadelphia office was assessed, their efficiency and productivity were comparable to those of other employees. But they were much better at innovation. One group identified improvements that cut the time for technical training in half, automating processes much more quickly.

In one project, the perspective brought by a neurodiverse team was estimated to save 800 hours. In another, the combined time savings and quality improvements generated around $100,000 (£73,000) in cost savings. Projects expected to take up to five weeks were finished in three days.

EY India adapted every step of the recruitment process to match the needs of neurodivergent candidates and gauge their potential. Informal and unscripted chats replaced a standard interview, allowing candidates to demonstrate their abilities in a more relaxed setting and over a longer period of time. At every stage, the process was paused to ensure a question had been understood. If not, it was rephrased. Instructions were given in clear, straightforward language.

“The normal recruitment process here takes about a week – a series of interviews, including one with HR, one with the technical team and another with a partner,” Chadha says. “This had to be slowed right down. Each interview had to be broken up into segments to give candidates enough time to absorb and reflect. The process of hiring took two months instead of a week.”

EY changed its technical assessment. “Instead of determining what specific knowledge and skills [candidates] had, we switched to broadly discovering how strong their aptitude was for learning new things,” Chadha says.

Birla said he appreciated the extent to which the process had been customised. “It was supportive and patient. I felt EY understood my needs and heard my views as a neurodivergent person,” he says.

According to the World Health Organization, one in 160 children globally have an autism spectrum disorder, and disproportionately high numbers of adults are unemployed. Action for Autism estimates that 18 million Indians are on the autistic spectrum, and jobs for this group are hard to come by.

“The effort can collapse at the first hurdle – the interview. But we are working with some large companies and multinationals to encourage and support them in finding roles and we’re seeing progress,” says Preeti Siwach of Action for Autism .

Pardeep Sharma, 25, lives in Delhi and used to visit the Action for Autism centre in Jasola, to learn soft skills. Siwach helped him to find work in housekeeping at a hotel chain before the pandemic struck.

“He is a school leaver and I never expected him to get a job. If only more companies would realise that people with autism have something to offer. They can learn [and] they deserve an opportunity,” says his father, Sunil Sharma.

Chadha says he has found that some of EY’s clients are intrigued by the new initiative. “Among our clients, in their own families they know of someone, a relative or a friend, with autism. They were keen to understand our policy and some have started replicating it,” he says.

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Autism centre opens in New Delhi (extract)

From Volume 4 Number 6

NEW DELHI, India: After ten years of struggle, the unveiling of Action for Autism's National Centre for Autism took place in New Delhi on September 8.        Explaining the condition to the government of India was the biggest hurdle facing AFA in  its effort to obtain land and financial aid for the new autism centre. Finally, Action for Autism managed to explain to the bureaucrats that autistic children do not have social or communicative skills. However, they can have normal or high IQs and tend to be hyperactive and repeat the same activity over and over again. So they need help.         "We had lots of problems. It was very difficult to generate awareness with the government. It's good to see that we managed to get this centre finally," said Merry Barua, director of Action for Autism  …  

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Adults with autism in India: a mixed-method approach to make meaning of daily routines

Affiliations.

• 1 Westat, 1009 Slater Road, Durham, NC 27703, USA. Electronic address: [email protected].
• 2 UCLA Department of Psychiatry, NPI-Semel Institute for Neuroscience, Center for Culture and Health, 760 Westwood Plaza, Box 62, Los Angeles, CA 90024-1759, USA.
• 3 Action For Autism, Pocket 7 & 8, Jasola Vihar, New Delhi 110025, India.
• PMID: 24998867
• DOI: 10.1016/j.socscimed.2014.06.052

Although individuals with Autism Spectrum Disorder (ASD) have been diagnosed in India for over fifty years, virtually nothing is known about the social circumstances of adults, their daily lives, and their families. Where are adults with autism? How do they spend their time? Who are they with, and what are they doing all day? A mixed-method approach was used to obtain information on daily routines of 54 adults with ASD living in New Delhi, India, and about parent levels of stress associated with these routines during a study collected from January through June, 2013. Whether or not they attended a structured setting during the day (59% did so), adults engaged in some 20 activities both inside and outside their home. Contrary to our expectations, most adults were not "hidden" and were out in public at least on occasion. Higher functioning adults were more likely to attend a structured setting, but parents described challenging behaviors, both adult and parent preference, and lack of options as reasons that adults stayed home. The amount of time adults spent outside their home was not associated with parent reported stress, but stress was significantly higher for mothers who were employed. Most families described adaptation to caring for their adult children. A partnership with an Indian nongovernmental organization provided mechanisms to amplify our research findings, making them meaningful to our participants and others.

Keywords: Autism Spectrum Disorders; Daily routine; Disability; Ecocultural; India.

Copyright © 2014 Elsevier Ltd. All rights reserved.

Publication types

• Research Support, Non-U.S. Gov't
• Autistic Disorder / epidemiology*
• Autistic Disorder / psychology*
• Communication
• Interpersonal Relations*
• Parents / psychology
• Socioeconomic Factors
• Stress, Psychological / epidemiology

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Higashi Autism School Inaugurated In Delhi; V-P Dhankhar Says 'Will Be A Leading School' Soon

The Higashi Autism school has been set up in collaboration with Musashino Higashi Gakuen School (MHS) of Japan. The school aims to provide autistic students education in individualised 1:1 teaching as well as in small group classes of six students each.

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I specially call upon the people of my gender, they must work shoulder to shoulder with their spouses to take care of a special child. Don't leave them alone! You'll lose your humane face! You'll forfeit your right to be a member of mankind, if you evade responsibility when your… pic.twitter.com/LvpImgze2a — Vice President of India (@VPIndia) October 29, 2023

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Autism in India: Time for a national programme

Bhismadev chakrabarti.

1 Centre for Autism, School of Psychology & Clinical Language Sciences, University of Reading, UK

2 India Autism Center, Kolkata 700 020, West Bengal, India

3 Department of Psychology, Ashoka University, Sonipat 131 001, Haryana, India [email protected]

We are regularly inundated by the statistics on rising prevalence of autism. According to the latest estimates from the Centres for Disease Control and Prevention in the USA, nearly one in 36 children meet criteria for an Autism spectrum disorder (ASD) diagnosis 1 . This is in sharp contrast to less than two decades ago, when the prevalence of autism was considered to be around one in 100 children 2 . While debates rage on about factors that underlie such large increases in the American prevalence estimates, it is worth reflecting on a few key differences in the ground realities for autism in India. To this end, this editorial presents a set of perspectives on autism research and clinical services in India and emphasizes the need for a coordinated national programme.

While biochemical pathways involved in core autism symptoms are unlikely to be different between cultures, there can be notable cultural differences in who choose to get an ASD diagnosis. Notably, the majority of children with an ASD diagnosis within the USA and UK are likely to be attending mainstream schools, unlike in India 1 , 3 , 4 . This key difference might be driven by a range of sociological factors, such as the allowance of provisions for inclusion in mainstream schools in UK and Europe, as well as factors related to private/national medical insurance coverage of autism interventions. This difference in ascertainment poses a distinct set of challenges and priorities for autism in India.

Autism is defined by the behavioural phenotype, and tools to measure the phenotype are the starting point for both research and clinical work on autism. However, most standardized autism screening and diagnostic tools used most widely across the world have limited availability in Indian languages. While we have translated, adapted and validated some of these tools in Indian languages 5 , other teams have developed new instruments that are designed with the target population in mind 6 . While the former approach allows for easier comparison with other studies globally, it might miss out on picking up subtle culturally specific differences as the item list is comparatively constrained. The latter approach avoids this drawback, but can create challenges for quantitative comparison with other globally used scales. In both cases, these tools are typically available for <5 of the 22 official languages of India, representing a core area of need for future work. Beyond screening and diagnostic instruments, task-based measures constitute critical components of an autism research toolkit. While some of these measures are easier to translate and adapt ( e.g ., embedded figures task, which requires the participant to identify a simple embedded shape from within a large complex display), other measures such as those involving complex emotion recognition present greater challenges due to cultural variability 7 . A combination of self and/or caregiver-report alongside observational/task measures is ideal for more comprehensive phenotyping. Crucially, phenotyping must not remain limited to measures of behaviour and brain alone –autism is increasingly viewed as a systemic condition. Greater focus on areas that have historically been under-researched in autism, such as sleep, diet, sensory symptoms and immune function need to be included within routine phenotyping.

While considering the next steps for development, standardization or adaptation of tools to measure the autistic phenotype – we also need to consider the users of these tools. Most available tools need to be administered by a specialist mental health professional. According to the latest estimates, India has <10,000 psychiatrists, majority of whom are concentrated in big cities 8 . While the number of mental health professional continues to grow, the current gap between the demand and supply cannot be met directly by the specialists alone. This gap is not relevant for phenotypic assessments alone, but also for providing psychological interventions. Parallel efforts to widen the reach of diagnostic and intervention services through involving non-specialists, similar to a stepped-care model for psychological therapies, is required in order to bridge this chasm. To this end, emerging lines of evidence suggest the feasibility of such an approach for both autism identification and intervention in an Indian contex 9 , 10 . Two pillars for such an approach to succeed are the availability of a suitable non-specialist workforce [ e.g ., Accredited social health activist ( ASHA )/ Anganwadi workers and parents/caregivers] and the appropriate digital technology ( e.g ., mobile applications) that can capture both self/caregiver report as well as observations/task performance.

A causal chain typically links phenotypic assessments and interventions – which presents its own set of challenges. These challenges are by no means unique to India, but are still worth considering in an effort to build a responsive and proactive national strategy for autism. Very often, a clinical diagnosis serves as a gateway for interventions and services – with some parents having to wait for years, or travelling across the country, to get a confirmed diagnosis of autism. Delays in interventions can be costly for neurodevelopmental conditions such as autism, given the importance of critical periods in brain development. Early interventions are associated with the best outcomes. As such, it is vital to develop a pipeline of routine phenotypic assessments for the key domains of development (social, motor, sensory and cognitive) – that then leads to parent/non-specialist-assisted behavioural interventions, irrespective of the clinical diagnosis. Within such a framework, if a child presents with social behavioural difficulties –he/she could be referred to a parent/non-specialist assisted programme on evidence based actionable strategies in social skills development. This child might eventually get a clinical diagnosis of Autism or Social Communication Disorder – but would have already benefited from an early intervention. There is a growing evidence base for simple behavioural interventions that parents/caregivers can be trained on, which can have a positive impact. The risks for administering these interventions to a child who may not necessarily need them are significantly lower than those of not administering them to someone who could benefit. More research on the sustainable implementation of such public health pathways that do not depend critically on a confirmed diagnosis from a specialist is of vital importance.

Taken together, India is poised at a unique global position in shaping the global agenda on autism, due to the sheer size of its population and extent of variability in genetics, diet, socio-economic conditions, and environment. This diversity, coupled with a concerted attempt to build public awareness and recognition of autism, can catalyse a move from primarily being a knowledge consumer to a producer of critical knowledge in this field. Coordinated efforts are required to address both fundamental research questions ( e.g ., on different genetic and environmental factors that may influence the likelihood for autism), as well as more applied research on implementation pathways for effective identification of support needs and the design of appropriate interventions. Insights from such research can be helpful in large parts of the globe, since 95 per cent of children with neurodevelopmental disorders live in low and middle income countries 11 . Beyond the necessary focus on children, there is a critical need to understand and develop ways to support the growing population of autistic adults. Across the globe, research and clinical services in autism have traditionally focused more on children than on adults 12 . There is thus a critical need for further research on supporting autistic adults through the lifespan. To this end, the need of the hour is to develop a national programme on autism, to link researchers, clinicians, service providers to the autism community in India.

Importantly, such an effort can only succeed if it is informed by extensive consultation with different stakeholders, with a primary focus on end-users within the Indian autism community 13 . While the Interagency Autism Coordinating Committee in the USA ( https://iacc.hhs.gov/ ) can provide an informative template to build on, it will require substantial innovations and modifications to work within an Indian context. Crucially, such a programme in India will need to partner closely with the private sector, given the important work done by some of the parent collectives and nongovernmental organizations in this space. A national programme for autism and neurodevelopmental conditions, supported by an articulated time-bound strategy, can pave the way forward for innovative multidisciplinary research and support services for autism across the country.

There are no conflicts of interest.

Acknowledgment:

Author (BC) was supported by the Medical Research Council UK (Ref: MR/S036423/1) and the European Research Council (Ref: 865568).

Autism in India: a case–control study to understand the association between socio-economic and environmental risk factors

• Original article
• Published: 15 December 2018
• Volume 119 , pages 393–401, ( 2019 )

Cite this article

• Bharathi Geetha   ORCID: orcid.org/0000-0002-8548-4897 1 ,
• Chinnaraju Sukumar 1 ,
• Eswaran Dhivyadeepa 2 ,
• Janardhana Kumar Reddy 2 &
• Vellingiri Balachandar 1  

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Autism spectrum disorder is a neurodevelopmental disorder and the cause of autism is still unclear. The aim of this study was to investigate the association of socioeconomic, environmental, pregnancy and newborn-related risk factors among children with autism spectrum disorders. This was a population-based case–control study. The study included 55 children with autism spectrum disorder and 55 age and sex matched typically developing normal children (TD) between 3 and 12 years. Several socio-economic factors, environmental factors, pregnancy related, natal, post-natal factors and the first noticed signs by the parents were analyzed. Chi-square test was used to compare nominal variables. For multivariate analysis, forward stepwise logistic regression model was employed to examine the association between autism and the chances that the child develops ASD to assess the odds ratios. Male predominance was observed in the study. Logistic regression model showed statistical significance of the following factors: paternal age greater than 40 years, family history of autism, nutrition during pregnancy, mode of labor, fetal hypoxia, NICU stay and history of breast feeding. In this epidemiological study of autism in Coimbatore city, we found correlation between several environmental factors during fetal development and can be transmitted to succeeding generations, causing atypical behavior phenotypes. The exact exposure magnitude, exposure time in relation to vital developmental periods need to be studied to understand the influence of socioeconomic and environmental factors, which can be improved to prevent ASD-related challenges.

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Acknowledgements

We would like to thank the school authorities and the state government officials for giving the necessary permission to carry out the present study.

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

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Bharathi Geetha, Chinnaraju Sukumar & Vellingiri Balachandar

Department of Education, Bharathiar University, Coimbatore, Tamil Nadu, 641 046, India

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Geetha, B., Sukumar, C., Dhivyadeepa, E. et al. Autism in India: a case–control study to understand the association between socio-economic and environmental risk factors. Acta Neurol Belg 119 , 393–401 (2019). https://doi.org/10.1007/s13760-018-01057-4

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Received : 04 September 2018

Accepted : 02 December 2018

Published : 15 December 2018

Issue Date : 01 September 2019

DOI : https://doi.org/10.1007/s13760-018-01057-4

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