Autism Spectrum Disorders In India Research Articles

Unraveling the Spectrum: A Comprehensive Review of Autism Spectrum Disorder in India.

Autism spectrum disorder (ASD) is a complex neurodevelopmental condition characterized by deficits in social interaction, communication difficulties, and repetitive behaviors that profoundly impact the lives of affected individuals and their families. This article provides a comprehensive overview of ASD, focusing on screening, diagnosis, and intervention strategies. Early signs of ASD can manifest in infancy, but parents may not recognize them until their child falls behind in meeting social milestones. This delay in recognition is often due to a lack of awareness, societal stigma, and limited knowledge about developmental and behavioral disorders. Globally, ASD prevalence is increasingpotentially due to broader diagnostic criteria, increased awareness, and improved screening practices. Screening for ASD is crucial for early identification and intervention. Various tools are available such as the Modified Checklist for Autism in Toddlers (M-CHATs), Trivandrum Autism Behavioral Checklist (TABC), and the Social Communication Questionnaire (SCQ). Diagnosing ASD involves using established criteria such as the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), and specific diagnostic tools like the Autism Diagnostic Observation Schedule (ADOS) and the Indian Scale for the Assessment of Autism (ISAA). Interventions for ASD should be multidisciplinary, involving professionals such as developmental pediatricians, psychologists, psychiatrists, special educators, occupational therapists, physiotherapists, speech therapists, and social workers. Applied behavior analysis (ABA), naturalistic developmental behavioral interventions (NDBIs), and parent-mediated treatment are among the evidence-based approaches. Additionally, speech-language therapy, motor therapy, and sensory integration therapy play vital roles in addressing the diverse needs of individuals with ASD. Medical interventions should be used alongside behavioral and environmental strategies. Early screening, accurate diagnosis, and tailored interventions are essential for improving the lives of individuals with ASD. A multidisciplinary approach and increased awareness are crucial in addressing the growing prevalence of ASD worldwide.

State Initiated Insurance Coverages for Outpatient Therapies to Children with Autism Spectrum Disorders in India

State Initiated Insurance Coverages for Outpatient Therapies to Children with Autism Spectrum Disorders in India

Quality of life in parents of children with Autism spectrum disorder: Emphasizing challenges in the Indian context

Purpose: Research has raised concerns about the quality of life (QOL) of parents of children with Autism spectrum disorder (ASD). Parents in different cultures show different psychological functioning when caring for a child with ASD. Hence, we examined QOL in parents of children with ASD in India and its relationship with socio-demographic factors. Materials and methods: We used a self-reported questionnaire and WHOQOL-BREF instrument to collect data on socio-demographic details and QOL respectively. Data were collected from two groups of participants – parents of children with ASD and parents of typically developing children (N = 60). Results: Results revealed significant differences in QOL between the two groups. Further, we found a positive correlation between socio-demographic variables and QOL in parents of children with ASD. Conclusions: Findings emphasize the need for intervention approaches aimed at family functioning, improving support services, and assisting parents to develop healthy coping strategies.

A Study on the Consequent Influences of COVID-19 Pandemic on Individuals with Autism Spectrum Disorder in India

A Study on the Consequent Influences of COVID-19 Pandemic on Individuals with Autism Spectrum Disorder in India

Herbal medicine as a first-line choice of complementary medicine for South Indian parents/caregivers in the management of ASD children

BackgroundParents/caregivers of children with Autism Spectrum Disorder (ASD) try different approaches to manage their child’s condition, of which one of the popular approaches is using Complementary and Alternative Medicine (CAM) treatment. ObjectivesThe present study aimed to estimate the prevalence and describe the pattern of CAM usage in a tertiary care South Indian hospital. MethodsA cross-sectional study was conducted among the parents/caregivers of children with ASD to specifically report the usage of CAM in their children. Data was also collected about the type of CAM, source, reasons, expectations, effectiveness, harmful effects, and the treating pediatrician’s opinion on CAM usage. ResultsA total of 257 parents/caregivers of children with ASD participated in the study. 24.5% of the children were exposed to at least one CAM therapy. The most commonly given CAM therapy was herbal medicine (71.4%). Parents/caregivers tried CAM therapy as their children’s core symptoms of ASD did not show much improvement with the existing therapy (80.9%). They expected that CAM therapy would at least control the progression of the disability (61.9%). CAM usage did not produce any adverse effects (100%). The baseline characteristics between the CAM users and non-users were similar expect for gender, which showed a statistically significant difference (p = 0.008). About 55.5% of the parents/caregivers did not discuss the usage of CAM for their child with their treating pediatrician. ConclusionHerbal medicines are frequently given CAM to children with ASD in India. History of CAM therapy usage should be a part of the medication history interview.

Parents planning for the long-term future of adults with ASD in India: "But that's a maybe. It's still a maybe".

Research on long-term planning for adults with Autism Spectrum Disorder (ASD) in India is non-existent. The mixed-methods study examined caregiver's expectations around the future planning of an adult with ASD and the barriers and facilitators to the future planning. The purposive sample included 139 caregivers to adults and adolescents with ASD who were part of the survey and 25 caregivers who participated in in-depth interviews. 40% of caregivers hadn't started planning for the future.The family was considered the ideal place to age, but perceived and objective barriers impacted caregivers' ability to plan for the future. The most common barrier that impacted all domains of long-term care was the fear of the unknown or the fear that none of the plans would fall in place. The study also identified resources and strategies used by parents to plan. Findings from the study can potentially impact policy, advocacy, and practice.

Efficacy of a novel augmentative and alternative communication system in promoting requesting skills in young children with Autism Spectrum Disorder in India: A pilot study.

Background & aims: The study assessed the efficacy of a novel, child-friendly, socio-culturally sensitive, icon-based Augmentative and Alternative Communication (AAC) system called Jellow Communicator, in teaching requesting skills to young children with Autism Spectrum Disorder (ASD) in a special school in Mumbai, India. Jellow is a comprehensive AAC system with a lexicon and pictorial library designed using a participatory, user-centric design process. The content of Jellow has been developed bearing in mind the socio-cultural and linguistic diversity of India. Jellow is available in low-tech (flashcards, booklet) and high-tech (Android and iOS app and desktop application) versions. Methods: The quasi-experimental longitudinal study involved seventeen 3.5-12-year-old children with ASD with communication challenges. Children were taught to use the Jellow AAC system to request for preferred items, as part of their regular speech therapy sessions. Each child received one-on-one training sessions with a licensed speech therapist twice a week over a 3-month duration, with each session lasting around 20-30 min. A systematic training protocol adapted from the original Picture Exchange Communication System (PECS) was developed to train children to use the Jellow system, progressing from flashcards to the app version of Jellow. Behavioral training strategies such as modeling, least-to-most prompting, differential reinforcement, and behavior chain interruption were used to facilitate requesting behaviors. The speech therapist assessed children's developmental level across multiple domains at pretest and posttest. We coded 3 videos per child, i.e., one early, one mid, and one late training session each, to assess changes in children's stage of communication, spontaneous requesting abilities, level of attention during training trials, and average time to completion for requesting trials. In addition, caregivers filled out questionnaires to assess training-related changes in children's adaptive functioning levels as well as the psychosocial impact of the Jellow AAC system on children's quality of life. Results: Children significantly improved their stage of communication, and a majority of children transitioned from flashcards to using the Jellow app to request for preferred items. Children also increased the proportion of spontaneous requests over the course of training. Caregivers reported a positive perceived psychosocial impact of the Jellow AAC system on their child's self-esteem, adaptability, and competence. Conclusions: The findings from our pilot study support the use of the novel, socio-culturally adapted, Jellow Communicator AAC system for teaching requesting skills to young children with ASD who use multiple communication modalities. Future studies should replicate our findings with a larger group of participants using a randomized controlled trial design. Implications: This is the first experimental study to systematically assess the effects of an indigenously-developed comprehensive AAC system adapted to the sociocultural and linguistic landscape of India. Our study results provide support for the use of the cost-effective Jellow Communicator AAC system in facilitating requesting skills in children with ASD who use multiple communication modalities. Clinicians can use low-tech and high-tech versions of Jellow to promote communication skills in children with ASD.

Public Health Dimensions of Autism Spectrum Disorder in India: An Overview

The global prevalence of an early-onset of Autism Spectrum Disorder (ASD) is ~1% and is a priority for the global mental health agenda (1). 78 million people worldwide are affected by autism and the impact on the individuals and families are enormous (2). Autistic Spectrum Disorder is a pervasive neurobehavioral disorder characterized by qualitative impairment in social interaction, communication and repetitive and stereotypic patterns of interests and activities (3). INCLEN study suggests that ASD prevalence across five States in north and west India was as high as one in 125 children between 2-6 years age group and one in 80 among children in 6-9 years age; overall the prevalence in India is estimated to be 1in 89(4). Autism was first described in 1943 among children born in 1930s and prevalence of autism is on the rise as reported from all over the world. Early intervention can ameliorate the morbidity significantly (5). Autism Spectrum Disorder is a neurodevelopmental disorder which poses a great challenge to individuals and to societies not just in early ages but across lifespan due to its pervasive nature.

Lived Experiences of Siblings of Individuals with Autism Spectrum Disorder in India: An Interpretative Phenomenological Analysis.

Background:Autism spectrum disorder (ASD) can impact the individual and their families. The impact on siblings is unique because they evolve from being another child in the family to a future adult who can be a potential resource to the family in supporting a member with ASD. Since the quality of care and support can be affected by the lived experiences of the carer and there are not many studies on siblings, this study examined the lived experiences of siblings of individuals with ASD.Methods:Fourteen siblings of individuals with ASD, aged 15–36 years, were recruited from a tertiary hospital, schools, and private institutes. A semistructured interview schedule was used to explore the lived experiences. Interpretative phenomenological analysis (IPA) was used to identify the themes.Results:The themes based on IPA indicated that the siblings have very basic concerns like understanding the condition and complex issues such as coping, preparing for current and future roles, personal needs and expectations, need for a support system, and positive aspects of the sibling relationship. Nonetheless, the siblings minimized reporting their difficulties and focused more on the needs of the sibling with ASD.Conclusion:Siblings have diverse lived experiences, with a small element of positive experiences. Appropriate supports are needed to address the complexities of the lived experiences.

Parent-mediated Training for Children with Autism Spectrum Disorder in India

Parent-mediated Training for Children with Autism Spectrum Disorder in India

Interventions for the improvement of social skills in Autism spectrum disorder in India: A systematic review

Interventions for the improvement of social skills in Autism spectrum disorder in India: A systematic review

Culturally Adapted Assessment Tool for Autism Spectrum Disorder and its Clinical Significance

Diagnosing of Autism Spectrum Disorder (ASD) using tools developed in the West is challenging in the Indian setting due to a huge diversity in sociocultural and economic backgrounds. Culturally adapted tools, such as the International Clinical Epidemiology Network (INCLEN) Diagnostic Tool for Autism Spectrum Disorder, have been developed in several Indian languages, yet, they do not accommodate all verbal abilities and education backgrounds. To address this disparity, we developed a home-based, audiovisual game app (Autest) suitable for ASD risk assessment in Indian children under 10 years of age. The game has five modules for each age group with specific peer interaction and play skill assessments. Each module follows a story from the Panchatantra, a popular Indian story series for children. Gameplay and behavior are tracked to assess risk. The effectiveness of Autest was rated by 30 psychologists with respect to current tools. Ratings suggested that the tool is effective and can reduce social inhibition and facilitate assessment due to the lack of a language barrier using emojis, cultural appropriateness, ease of administration, and simple scoring. This tool is particularly useful minimally verbal, at-risk children. Further usage and development of Autest can improve risk assessment and early intervention measures for children with ASD in India.

Remarks on "Cross-disciplinary Appraisal of Knowledge and Beliefs Regarding the Diagnosis of Autism Spectrum Disorders in India: A Cross-sectional Survey".

Remarks on "Cross-disciplinary Appraisal of Knowledge and Beliefs Regarding the Diagnosis of Autism Spectrum Disorders in India: A Cross-sectional Survey".

Authors' Response to the Comments on "Cross-disciplinary Appraisal of Knowledge and Beliefs Regarding the Diagnosis of Autism Spectrum Disorders in India: A Cross-sectional Survey".

Authors' Response to the Comments on "Cross-disciplinary Appraisal of Knowledge and Beliefs Regarding the Diagnosis of Autism Spectrum Disorders in India: A Cross-sectional Survey".

Cross-Disciplinary Appraisal of Knowledge and Beliefs Regarding the Diagnosis of Autism Spectrum Disorders in India: A Cross-Sectional Survey.

Background:Many healthcare professionals, including pediatricians, psychiatrists, Clinical Psychologists (CPs), Occupational Therapists (OTs), and Speech-Language Pathologists (SLPs), are involved in the identification and intervention of Autism Spectrum Disorders (ASD) in children. Distinctive training backgrounds and professional exposure can result in contrasting ideas regarding the assessment, diagnosis, and treatment of ASD. Only a few studies have addressed the cross-disciplinary perspective of knowledge, belief, and awareness about diagnostic criteria required for diagnosing ASD.Materials and Methods:A total of 154 allied healthcare professionals (98 SLPs, 33 CPs, and 23 OTs) participated in the study. The survey tool used for this study was adapted from a previously available survey on the assessment of knowledge and belief about ASD and self-efficacy.Results:The overall knowledge and belief of allied healthcare professionals regarding ASD differed significantly across the groups. However, the knowledge of Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5) diagnostic criteria for ASD did not differ significantly between the groups.Conclusion:Our findings have salient clinical implications and advocates for the continued education of healthcare professionals in India regarding recent diagnostic criteria for ASD.

The Socio-Demographic and Clinical Profile of Individuals with Autism Spectrum Disorder in a Tertiary Care Teaching Hospital in South India

BACKGROUND Autism spectrum disorder (ASD) is an neuro-developmental disorder. There is a paucity of epidemiological data on ASD in India. This study is an attempt to understand the socio demographic and clinical characteristics of the individuals with ASD. METHODS The case records were perused to extract the datas. RESULTS The study revealed that two third of individuals with ASD also have Intellectual Disability, more than half the mothers of individuals with ASD did not breastfeed beyond 12 months, about one third of individuals with ASD have not availed any kind of services. It takes arounds 6 years of age for the parents/ individuals with ASD to seek treatment help. CONCLUSION Understanding the profile is essential for better treatment planning.

The Socio-Demographic and Clinical Profile of Individuals with Autism Spectrum Disorder in a Tertiary Care Teaching Hospital in South India

BACKGROUND Autism spectrum disorder (ASD) is an neuro-developmental disorder. There is a paucity of epidemiological data on ASD in India. This study is an attempt to understand the socio demographic and clinical characteristics of the individuals with ASD. METHODS The case records were perused to extract the datas. RESULTS The study revealed that two third of individuals with ASD also have Intellectual Disability, more than half the mothers of individuals with ASD did not breastfeed beyond 12 months, about one third of individuals with ASD have not availed any kind of services. It takes arounds 6 years of age for the parents/ individuals with ASD to seek treatment help. CONCLUSION Understanding the profile is essential for better treatment planning.

Prevalence of autism spectrum disorder in Indian children: A systematic review and meta-analysis.

Autism spectrum disorder (ASD) is a developmental disability and is of public health importance. It affects not only the child and the family. It also has direct and indirect cost implications on the nation that are incurred in providing health care, support for education, and rehabilitative services. There is a lack of evidence-based estimate of the population prevalence of ASD in India. Therefore, this systematic review was aimed at determining the prevalence of ASD in the Indian population. We conducted a systematic review and meta-analysis of the published studies evaluating the prevalence of ASD in the community setting. A search within the published literature was conducted from different databases (PubMed, OvidSP, and EMBASE). The analysis of data was done using STATA MP12 (StataCorp, College Station, TX, USA). Four studies were included in this systematic review. Of the four included studies, one had studied both urban and rural populations, and the other three had studied the urban populations only. The study from the rural setting showed a pooled percentage prevalence of 0.11 [95% confidence interval (CI) 0.01-0.20] in children aged 1-18 years; and, four studies conducted in the urban setting showed a pooled percentage prevalence of 0.09 (95% CI 0.02-0.16) in children aged 0-15 years. The scarcity of high-quality population-based epidemiological studies on ASD in India highlights an urgent need to study the burden of ASD in India. The proper acquisition of data related to the prevailing burden of ASD in India would lead to a better development of rehabilitative services in our country.

Predictive components in the structure of an intensive, parent mediated, early intervention for children with autism spectrum disorders in India.

Introduction:The predictive factors of parent mediated, Early Intervention (EI) for children with Autism Spectrum Disorders (ASD) have not been studied in India; we document the structural therapeutic factors, which predict the EI outcome.Methods:Data of 77 children with an ICD 10 diagnosis of Pervasive Developmental Disorder (ASD in DSM 5), and completed a 12-week EI with proven effectiveness was collected from the database of a teaching hospital. We studied the structural therapeutic factors associated with EI outcome, as measured by Psycho-Educational Profile-Revised (PEP-R), while controlling the confounders with multiple linear regression analyses.Results:The Fine-motor skills improved in residential patients (t = 2.54, P = 0.02; 15 units). As the duration of intervention decreased at home per day, there was a significant decrease in Gross-motor skills (t = -2.67, P = 0.02; -15 units). With increase in duration of intervention in hospital per day, there was a significant increase (t = 2.86, P = 0.01; 30 units) in the Eye-hand integration. Cognitive-verbal skills acquisition decreased (t = -2.90, P = 0.01; 33 units) as the duration of intervention decreased at hospital. The use of medication did not predict any of the outcome factors.Conclusion:The above mentioned predictive factors should be monitored and titrated in the family context when children with ASD undergo parent mediated, EI programme. It is important to that the multidisciplinary family medicine teams reinforce these parents, who are the main column of support in primary-care settings for children with neuro-developmental disabilities in India.

Assessing Social Skills of Children Diagnosed with Autism Spectrum Disorders in India: A Pilot Study

Assessing Social Skills of Children Diagnosed with Autism Spectrum Disorders in India: A Pilot Study