Search

The plan of the paper is to study autism spectrum disorder (ASD) in children as complex conditions that affect cognitive, emotional, social, and physical health. Broadly tracing the medical journey of the condition, it addresses the challenges faced by parents as they make sense of, and navigate their way through the appearance of early symptoms, impediments in correct diagnosis, acceptance, and adapt to live with the condition. The paper attempts to understand autism in medical and neurological terms, as well as the challenges faced by children and parents through the case study of Kyari (meaning a flower bed), a lone centre providing accessible autism care in about 150 km around Moradabad (west UP, India), which has been instrumental in raising an awareness of autism and has a reach that is unprecedented in the city in bringing sensitive autism intervention. It further comprehensively studies the symptoms of ASD, and the role of augmentative and alternative communication, behaviour modification, and the work of organisations like the Centre for Autism, CBSE mandate for inclusive education as applied in the case and Indian government policy for autism. [ABSTRACT FROM AUTHOR]

Introduction: Autism is a global health priority with an urgent need for evidence-based, resource-efficient, scalable supports that are feasible for implementation in low- and middle-income countries (LMICs). Initiating supports in the toddler years has potential to significantly impact child and family outcomes. The current paper describes the feasibility and outcomes associated with a Canadian-developed caregiver-mediated intervention for toddlers (the Social ABCs), delivered through a clinical service in Goa, India. Methods: Clinical staff at the Sethu Centre for Child Development and Family Guidance in Goa, India, were trained by the Canadian program development team and delivered the program to families seen through their clinic. Using a retrospective chart review, we gathered information about participating families and used a pre-post design to examine change over time. Results: Sixty-four families were enrolled (toddler mean age = 28.5 months; range: 19-35), of whom 55 (85.94%) completed the program. Video-coded data revealed that parents learned the strategies (implementation fidelity increased from M= 45.42% to 76.77%, p < .001, with over 90% of caregivers attaining at least 70% fidelity). Toddler responsivity to their caregivers (M = 7.00% vs. 46.58%) and initiations per minute (M= 1.16 vs. 3.49) increased significantly, p's < .001. Parents also reported significant improvements in child behaviour/skills (p < .001), and a non-significant trend toward reduced parenting stress (p = .056). Discussion: Findings corroborate the emerging evidence supporting the use of caregiver-mediated models in LMICs, adding evidence that such supports can be provided in the very early years (i.e., under three years of age) when learning may be optimized. [ABSTRACT FROM AUTHOR]

Owing to the different models of disablement in different religions and cultures around the world, social and aesthetic representations of intellectually disabled people are diverse in various societies. Disability is perceived in a different way in India than in the West. There are very few studies on the complex role of Indian mainstream Hindi cinema in the representation of intellectual and developmental disabilities in India. This paper explores the potential of shifting representations of intellectual and developmental disability in the late twentieth and early twenty‐first century Bollywood films in the context of multiple aesthetic challenges they pose. The shift in screen image of intellectual impairment is strongly related to the shifting and ambiguous sociocultural model of personhood in India. In earlier Indian Hindi films, characters with intellectual disabilities were depicted in terms of good/bad moralistic labels, compromised body image, leading to aesthetic undesirability. In later Hindi films, they were instead represented as enduring human beings. In short, in earlier Hindi films, there was a discriminatory hegemonic bias in the depiction of intellectually disabled characters, in contrast to that in later Hindi films, where they were depicted in richly diverse perspectives. The changing artistic parlance becomes even more interesting in the context of major developments in Indian governmental policies and rights for the disabled in the last two decades. Thus, the paper highlights that contemporary Hindi films urge the audience to consider intellectual and developmental disability as a multilayered issue and rather than merely as a disease. Accessible summary: Our ideas about disability are linked with those of family, religion and tradition in a particular society.Cinema also reflects our perceptions and concepts of disability.This paper is about the how people with intellectual disabilities have been shown in Hindi cinema in the last 30 years, and how intellectual disability is understood in India.In Hindi cinema, intellectually disabled characters are represented in a way that is slightly different from those in Western literature and films.Research on representations of intellectual disability in cinema is important as it can stimulate healthy discussions on a more empathetic society with a better understanding of the various facts related to intellectual disability. [ABSTRACT FROM AUTHOR]

To design and develop a mobile application for pre-school readiness of children with autism and also to identify their learning pattern. Based on strong foundation of functional academics, we have developed a mobile application for providing an early educational intervention program to the children with autism. Three successive software trials have been conducted among 31 children with autism of age group of three to 10 years. The mobile app has been provided to educators and parents and they have been allowed to supervise the children during their learning phase for eight to 10 weeks. The imprint of learning pattern is recorded and learning progress profile is generated for individual child. Data analysis of learning progress profile shows that 90% of the participants preferred drag and drop or simple touch approach over conventional methods practised during classroom teachings. More than 84% of the children are found to adapt pre-requisite skills for writing like scribbling, tracing, dots joining, copying, etc. after using the app on their tablet who are reluctant to hold pencil and paper otherwise. Twenty-five percent of the participants are reported to reciprocate the greeting etiquettes in class such as greeting teachers and their peers. The mobile application made a valuable contribution to early intervention program for children with autism by imparting appropriate learning opportunities readily available to them. Performance metrics underlying each activity form a strong base of identification of learning patterns and formulation of revised individualized education plan (IEP). Children with autism need the mobile application as an educational intervention program for it is readily available and user friendly. Educators need the mobile application to quantify the performance parameters and there by monitor/evaluate the progress of the child. Overall, the present research has aimed to develop an easy reach app by which educating as well as handling challenging behaviour of the children with autism would be easier. [ABSTRACT FROM AUTHOR]

Autism is called "spectrum" disorder because there is a wide variation in the type and the severity of symptoms that people experience. India has a vast population, diverse cultures, and multiple languages, making it crucial to under- stand the unique challenges faced by individuals with autism spectrum disorder in the Indian context. This narrative review explores the current state of knowledge about autism spectrum disorder in the Indian context. Databases such as PubMed, Google Scholar, Sage journals, and other sources were searched with relevant terms for preparing this review. All published literature till January 2023 was studied and those which met the inclusion criteria were included. The resources included were original research articles, review articles, web pages, and book chapters addressing the purpose of the paper. Forty-eight such studies which met the inclusion criteria were included in the study. Results showed that the prevalence of autism varied across different studies in India. The study found advanced paternal age, fetal distress, gestational respiratory infections, labor complications, preterm birth, neonatal jaundice, delayed birth cry, birth asphyxia, late initiation of breastfeeding, neonatal seizures, use of maternal hormonal intervention, and consanguinity as some of the identified risk factors of autism spectrum disorder. Parents and families of children with autism have to go through a complex negative experience, both in the family and the community. This negative experience is further compounded by the lack of awareness and access to appropriate professional help and resources. It can be concluded that there is an urgent need for services that help parents cope with the stress of parenting a child with autism. [ABSTRACT FROM AUTHOR]

The article focuses on the Indo-United Kingdom (UK) collaboration in mental health, highlighting the growth of the initiative from a pilot involving 2 National Health Service (NHS) organizations to over 20 organizations across England and Wales. Topics include developing a long-term sustainable partnership; recent advances in clinical research in India and the UK; and strengths and challenges of the UK-India partnership in mental health.

We developed and tested the Indian Autism Screening Questionnaire (IASQ), which was reported to be reliable and valid as compared to the Indian Scale for Assessment of Autism (ISAA) and the Childhood Autism Rating Scale -2 (CARS2). The present study describes the feasibility, acceptability, sociodemographic and developmental details of IASQ study participants in 5 settings- a psychiatry outpatients' clinic (n = 145), a specialised paediatric clinic (n = 24), a speciality disability centre (n = 174), a primary school (n = 41) and a government housing colony (n = 255). The IASQ could be easily administered and understood. Consistent with prior reports, the male-female ratio of participants with autism was 3.8:1. Developmental complications were reported more frequently in clinical settings, while delivery by Caesarean section was commoner among community-dwelling higher socioeconomic status mothers (53% of the officers' sample). Mothers of participants with autism more frequently reported Caesarean section birth for the proband (χ2 = 41.61, p <.0001) and prenatal and postnatal complications. Binary logistic regression confirmed that perinatal complications in the mother and father's (older) age at birth of the participant were associated with autism. The IASQ is a reliable, practical tool for screening for autism in clinical and non-clinical settings in India. [ABSTRACT FROM AUTHOR]

Autism Spectrum Disorder is a complex syndrome that consists of a set of developmental and behavioral features. Not only children with Autism face different challenges in the family as well as society but it also challenges the people in the background such as parents and family members. Autism affects 18 million people in India and raising awareness can help patients overcome stigma and improve the daily routines for the people with ASD as well as the relationships around them. This article focuses on the possible interventions for Autism and strategies on how to better control sensory and perceptual problems. This also serves as a guide to parents on how to tackle kids with ASD and simultaneously not losing a focus on themselves as well. The main areas of concern in ASD are communication, social interaction and sensory integration so the interventions are also focused on these areas such as Hanen Program, Floortime Model and Individualized Education Program (EIP). Autism is spoken of generally as a jigsaw with a missing piece, instead, it is a bucket full of several different jigsaws in it (Chapter 1-A Bucket Full of Jigsaws, Autism an inside out approach.) Figuring out the different pieces of the jigsaw and making sense out of them is the main task while handling ASD. [ABSTRACT FROM AUTHOR]

The Indian Autism Screening Questionnaire (IASQ), derived from the Indian Scale for Assessment of Autism ISAA (the mandated tool for autism in India), is an autism screening instrument for use in the general population by minimally trained workers. While ISAA has 40 items with four anchor points, the IASQ is a 10-item questionnaire with yes/no answers. It was initially validated using the ISAA. During its development the ISAA was itself compared to the Childhood Autism Rating Scale version 1 (ISAA Manual). In the present study, we evaluated both the ISAA and the IASQ in relation to the Childhood Autism Rating Scale version 2 (CARS-2). Methods: Participants were recruited from three settings: a referral clinic for neurodevelopmental conditions run by the Department of Paediatrics of a tertiary care teaching hospital (NDC OPD), the outpatient department of an institute for disability and rehabilitation (NIEPID), and from the community (CGOC). Persons between ages 3–18 were recruited following consent or assent (parent and child/adolescent). The IASQ was administered by a minimally trained administrator. It was followed by ISAA and the CARS-2 (in alternating order, by different evaluators blind to each other) (CARS2 SV (Standard Version) and CARS2 HF (High Functioning) as applicable). Sensitivity, specificity and area under the Receiver Operator Characteristics (ROC) curve were calculated for IASQ and CARS2, as well as for ISAA and CARS2. Concordance between CARS2 and ISAA was calculated using kappa coefficient. Results: A total of 285 participants (NIEPD n = 124; NDC OPD, n = 4; CGOC n = 157) (a total of 70 with autism and 215 controls) participated. IASQ and CARS2 were administered on 285 participants, while IASQ and ISAA were administered on 264 participants. When IASQ was compared to CARS2, sensitivity was 97%, specificity 81%, PPV 63%, NPV 99% at cut off 1 while these values were 97%, 92%, 79% and 99% respectively at cut off 2. There was high concordance between CARS2 and ISAA (Kappa 0.907, p<0.0001). Conclusions: IASQ has satisfactory sensitivity, specificity and concordance when compared with CARS2; it can be used for screening children with autism in community. The ISAA also showed a high concordance with CARS2, as it had with the older version of CARS. [ABSTRACT FROM AUTHOR]

Background: The economic burden of autism is substantial and includes a range of costs, including healthcare, education, productivity losses, informal care and respite care, among others. In India, approximately, 2 million children aged 2-9 years have autism. Given the likely substantial burden of illness and the need to identify effective and cost-effective interventions, this research aimed to produce a comprehensive cost of illness inventory (COII) suitable for children with autism in South Asia (India) to support future research.Methods: A structured and iterative design process was followed to create the COII, including literature reviews, interviews with caregivers, pilot testing and translation. Across the development of the COII, thirty-two families were involved in the design and piloting of the tool. The COII was forward translated (from English to Hindi) and back translated. Each stage of the process of development of the COII resulted in the further refinement of the tool.Results: Domains covered in the final COII include education, childcare, relocation, healthcare contacts (outpatient, inpatient, medical emergencies, investigations and medication), religious retreats and rituals, specialist equipment, workshops and training, special diet, support and care, certification, occupational adjustments and government rebates/schemes. Administration and completion of the COII determined it to be feasible to complete in 35 minutes by qualified and trained researchers. The final COII is hosted by REDCap Cloud and is a bilingual instrument (Hindi and English).Conclusions: The COII was developed using experiences gathered from an iterative process in a metropolitan area within the context of one low- and middle-income country (LMIC) setting, India. Compared to COII tools used for children with autism in high-income country settings, additional domains were required, such as complimentary medication (e.g. religious retreats and homeopathy). The COII will allow future research to quantify the cost of illness of autism in India from a broad perspective and will support relevant economic evaluations. Understanding the process of developing the questionnaire will help researchers working in LMICs needing to adapt the current COII or developing similar questionnaires. [ABSTRACT FROM AUTHOR]

In spite of high density of population, higher in poverty, lower levels of per capita public health infrastructure in our country interestingly recovery rate of COVID-19 is good. COVID-19 is a novel respiratory disease. Studies suggest that lack of proper knowledge regarding COVID-19, severe morbidity and high mortality also high in our country. During any kind of disaster or pandemic vulnerable groups or populations like mental and neorudevelopmetal disorder like child with autism spectrum disorder known to be overly effected in negative way. According to epidemiological research report during the last decade there is dramatically increase in the rate of autism with prevalence of 5 to 10 cases of classic autism per 10,000 . Knowledge regarding COVID-19 among mothers child with autism was negatively correlated with the demographical value and social functional support reported by the mothers child with autism. This study sought to assess the knowledge toward COVID-19 among mother with autism seeking care for their child with autism in the District Disability Rehabilitation Centre, Tripura. This descriptive study hypothesized there are adequate knowledge about COVID-19 as because awareness was done by mass media from government and nongovernment side in a very intensive way. We conduct an investigation how mother child with autism with their specific demographical properties shows their knowledge about COVID-19 awareness and strategy they applied to prevent and recover from COVID-19.Our sample was selected randomly. Our study shows that knowledge and strategy of mother regarding COVID-19 significantly associated with their education, mother with special training, source of income, background of family support. The awareness level high among mothers about COVID-19 in percent was high 6.7 levels. Proportion of High Strategic capacity with COVID- 19 as high percentage18.7. This descriptive study is according result is significant with selected demographical variables of mothers child with autism. Method: A descriptive study was conducted in District Disability Rehabilitation Centre, Tripura. A simple random sampling technique was conducted with structured questionnaire in this centre. A total 50 mothers with child autism were randomly sampled. Descriptive analysis was used to assess the knowledge between the mothers with autism with demographic variables. Data was analyzed depending priorities on source of hearing and visualizing awareness, awareness regarding source of infection, sign and symptoms of infection, strategies adopted to withstand challenges from COVID-19,vulnerable group's members, Proportion of high strategies capacity with COVID-19. Result: The awareness level high among mothers about COVID-19 in percent was 6.7 levels. Because our Government did mass awareness on Covid-19 as well as District Disability Centre also. Distribution source of hearing about COVID-19 knowledge among mothers according to study mostly from newspaper is 37%. Awareness among mothers about sources of infection high in percentage via handshaking is 70.3, Cough Droplets and Public Gathering are same as 49.3.Symptom awareness of fever, cough, breathlessness are equal as in percentage 70.Strategies adopted to withstand challenges from COVID-19 in percentages in hand washing and using sanitizer 70.9. The demographical independent variables are the age, religion, education, family income, residential area, with chronic stress child with autism. Mothers child with autism without family support and with no formal education negatively associated with Covid-19 strategic capacity in percentage. According to our study mothers have adequate knowledge regarding COVID-19 is resulted Proportion of high Strategic capacity with COVID-19 in percentage is 18.7 Conclusion: Although majority of mothers have adequate knowledge about COVID-19 and engaged in good practice of COVID-19, awareness level have to increase in all mothers with different demographical variables .As a study result mothers are aware about COVID-19 in percent 33.3 in low lavel,60 percent are in medium level. From result there is some decrease in awareness depending on demographical value as education, family income, special training, background of family support and types of family negatively impact-the adequate knowledge among mothers. From we come in conclusion that mothers have adequate knowledge about COVID-19 with path of strategic capacity. [ABSTRACT FROM AUTHOR]

Timely recognition of autism in children is integral to improve developmental outcomes. This study used mixed-methods (84 case-registers and 20 in-depth interviews with caregivers of children with a diagnosis of autism) to explore the extent to which the nature of parental concerns and prior knowledge of developmental disorders impact the time between symptom recognition and autism diagnosis, and the contextual family, societal and health-system related factors that impede the autism help-seeking pathway. Lack of awareness of age-appropriate child developmental milestones, apparent amongst the community and health professionals, contributed to a 1.5-year delay between parental concerns and autism diagnosis. Recommendations to shorten this help-seeking pathway include harnessing the potential of non-specialist workers to increase awareness and enable developmental monitoring of young children through scalable tools. [ABSTRACT FROM AUTHOR]

Introduction: Worster Drought syndrome (WDS) is a type of cerebral palsy that affects the muscles around the mouth and throat. This causes problems with swallowing, feeding, talking, and dribbling. Although the impairments are predominantly motor, a range of cognitive, behavioral, and seizures also exist. These features point towards the involvement of the perisylvian area of the cerebral cortex. Purpose of the Study: In WDS, the predominant impairment is a profound expressive communication problem and feeding difficulties; hence, it is under-recognized and even under-reported. Besides, these children have a specific phenotype which when recognized early can make a significant difference in management. This study aims to know the etiology and profile of WDS. Materials and Methods: This is a prospective cohort study in a tertiary care hospital from January 2018 to December 2019. All patients who met the absolute criterion for the diagnosis of WDS were included. A detailed history, clinical examination findings, relevant investigations like CT/MRI brain, and EEG were recorded in a predesigned proforma, and results were analyzed. Results: A total of 83 children (M:F = 52:31) presented within the age group of 2 years to 18 years. Seventy (84.33%) of them were delivered by a normal vaginal route. All children had global developmental delay, expressive speech delay, and spasticity. Other features were undernutrition 75(90%), drooling 66(79.51%), seizures 44(52.60%), and prolonged feeding 42(50.60%). Birth asphyxia was present in 72 (86.70%) cases, but neuroimaging was suggestive of perisylvian gliosis in 80 (96.38%) cases. Conclusions: WDS should be considered in children with cerebral palsy if mild motor delay with a predominant expressive language delay is present without hearing impairment and autistic features. In India, birth asphyxia is the most common cause. [ABSTRACT FROM AUTHOR]