Epidemiological Survey of Autism, ID and Common Psychiatric Disorders among Children and Adolescents in Uttarakhand

REPORT

Project implemented by

Centre for Public Health

Department of Epidemiology, NIMHANS, Bengaluru, Karnataka

2024-2025

In collaboration with

State Mental Health Authority, Government of Uttarakhand and

Government Doon Medical College, Dehradun, Uttarakhand

Running Title: Epidemiological Survey of Autism, ID and Common Psychiatric Disorders among Children and Adolescents in Uttarakhand.

Address for correspondence

Dr Pradeep B S, MD (KIMS), M.Sc., (Epi) (UK), MPH, (Epi & Global Health) (USA)

Deputy Medical Superintendent and Professor and Former Head,

Centre for Public Health, Department of Epidemiology, NIMHANS, Bengaluru, Karnataka National Institute of Mental Health and Neuro Sciences, Bengaluru – 560029, Karnataka, India Email: doctorpradeepbs@gmail.com. Phone: 080-26995867. Mobile: +91 9845452250

Team State Mental Health Authority, Uttarakhand

1. Dr. R. Rajesh Kumar, Chairperson (Secretary Health) SMHA

2. Dr. Sunita Tamta, Director General, Medical Health and Family Welfare

3. Dr Shikha Jangpangi, Chief Executive Officer, SMHA

4. Dr Sumit Deb Barman, Joint Director, SMHA

5. Dr Pankaj Kumar Singh, Assistant Director, SMHA

Ex-Officials

6. Dr Vinita Shah, Ex-Director General, Medical Health and Family Welfare

7. Dr Bhagirathi Jangpangi, Ex-Chief Executive Officer, SMHA

8. Dr K S Negi, Ex Joint Director, SMHA

9. Dr Mayank Badola, Chief Medical Officer, Lal Bahadur Shastri National Academy of Administration Mussoorie, Uttarakhand

10. Dr Kuldeep Martolia, Nodal Officer, State Health System Resource Centre, Ex Assistant Director, SMHA

Team NIMHANS

Principal Investigator

1. Dr Pradeep B S, Deputy Medical Superintendent and Professor and Former Head, Centre for Public Health, Department of Epidemiology, NIMHANS, Bengaluru, Karnataka

Co-Principal Investigators

2. Dr John Vijay Sagar, Professor and Head, Department of Child and Adolescent Psychiatry, NIMHANS, Bengaluru, Karnataka

3. Dr Gautham M S, Professor, Centre for Public Health, Department of Epidemiology, NIMHANS, Bengaluru, Karnataka

4. Dr Arvind B A, Professor, Centre for Public Health, Department of Epidemiology, NIMHANS, Bengaluru, Karnataka

5. Dr Rajendra K M, Additional Professor, Department of Child Psychiatry, NIMHANS, Bengaluru, Karnataka

Co-Investigators

6. Dr K Thennarasu, Dean, Basic Sciences, and Professor & Head, Department of Biostatistics, NIMHANS, Bengaluru

7. Dr Girish N Rao, Professor, Centre for Public Health, Department of Epidemiology, NIMHANS, Bengaluru, Karnataka

Project Team

• Dr Vrishabh, Project Coordinator, Uttarakhand Survey Project, Centre for Public Health, Department of Epidemiology, NIMHANS, Bengaluru, Karnataka

• Ms. Rithika, Data Manager, Uttarakhand Survey Project, Centre for Public Health, Department of Epidemiology, NIMHANS, Bengaluru, Karnataka

• Ms. Gunjan Pandey, Project Coordinator, Uttarakhand Survey Project, Centre for Public Health, Department of Epidemiology, NIMHANS, Bengaluru, Karnataka

• Ms. Manasa B Gowda, Data Manager, Uttarakhand Survey Project, Centre for Public Health, Department of Epidemiology, NIMHANS, Bengaluru, Karnataka

• Dr Aarushi Kaushik, MPH Scholar, NIMHANS, Bengaluru, Karnataka

• Dr Isha Madan, MPH Scholar, NIMHANS, Bengaluru, Karnataka

• Mr Varun Kumar D, Statistician, LSTCS Project, Centre for Public Health, Department of Epidemiology, NIMHANS, Bengaluru, Karnataka

• Ms. Dhanursha Dhruva, Research Coordinator, SMILE Project, Centre for Public Health, Department of Epidemiology, NIMHANS, Bengaluru, Karnataka

Team Government Doon Medical College, Uttarakhand

1. Prof (Dr) Ashutosh Sayana, Principal, Veer Chandra Singh Garhwali Government Institute of Medical Science and Research, Srinagar, Ex Principal, GDMC, Dehradun

2. Prof (Dr) Geeta Jain, Principal, GDMC, Dehradun

3. Dr Anupama Arya, Prof & Head, Department of Community Medicine, GDMC

4. Dr Richa Sinha, Associate Professor, Department of Community Medicine, GDMC

5. Dr Shiv Kumar Yadav, Associate Professor, Department of Community Medicine, GDMC

6. Dr Jaya Nawani, Associate Professor, Department of Psychiatry, GDMC

7. Dr Debabrata Roy, Ex Prof & Head, Department of Community Medicine, GDMC

Field Data Collectors

1. Ms.AnjaliTakiya

2. Mr. Jay Randhawa

3. Mrs. Kavita Joshi

4. Ms. Krishna

5. Ms. Madhu

6. Mr. Shubham Bhatt

7. Mr. Mahadev

8. Ms. Nirmala Bhatt

9. Ms. Priyanka

10. Mr. Ravi Singh

11. Mrs. Ritu

12. Mr. Suraj Khampa

Assessment team for diagnosis:

1. Dr Ashish Bhandari, Assistant Professor, Department of Psychiatry, GDMC, Uttarakhand

2. Dr Sankalp Dixit, Senior Resident, Department of Psychiatry, AIIMS Rishikesh, Uttarakhand

3. Dr Ranjitha R, Senior Resident, Department of Psychiatry, NIMHANS, Bengaluru, Karnataka

4. Dr Hetashri Shah, Senior Resident, Department of Psychiatry, NIMHANS, Bengaluru, Karnataka

5. Dr Shivender Singh, Senior Resident, Department of Psychiatry, NIMHANS, Bengaluru, Karnataka

6. Dr Sushmitha Anantha Murthy, Project Senior Resident, Department of Psychiatry, NIMHANS, Bengaluru, Karnataka

7. Dr Abhilasha, Senior Resident, Department of Psychiatry, NIMHANS, Bengaluru, Karnataka

8. Dr H N Pratibha, Senior Resident, Department of Psychiatry, NIMHANS, Bengaluru, Karnataka

LIST OF ABBREVIATIONS

NDDs Neurodevelopmental Disabilities ASD Autism Spectrum Disorder

ID Intellectual Disability

SLD Specific Learning Disability

GBD Global Burden of Disease

UNICEF United Nations International Children’s Emergency Fund NIMHANS National Institute of Mental Health and Neuro Sciences GDMC Government Doon Medical College

SMHA State Mental Health Authority

MESSAGE

MINISTER

Dr. Dhan Singh Rawat

Hon’ble Minister,

Medical Health and Medical Education, Co-operative, Higher Education, Sanskriti Education, School Education, Govt. of Uttarakhand,

Uttarakhand, with its diverse and vibrant communities, deserves comprehensive health insights to ensure the well-being of its children and adolescents. The well-being of our children and adolescents, who represent the future of this great state, is of paramount importance. Ensuring their mental health is crucial for building a strong, healthy, and vibrant Devbhoomi.

I congratulate the National Institute of Mental Health & Neuro Sciences, Govt. Doon Medical College and State Mental Health Authority team for conducting the survey in 4 districts of the state of Uttarakhand namely, Dehradun, Nainital, Almora and Pauri representing the geo-cultural diversity of the state.

I am certain that this report will be used constructively at National, State, District and Sub Divisional level for improving the lives of millions of children and adolescents. The team’s thorough research and analysis provide crucial insights into

the mental health challenges faced by our young population. This valuable information will guide us in improving mental health services and implementing targeted interventions to support these children and adolescents effectively.

I extend my best wishes for successfully conducting this survey, and I am confident that the team’s dedication and hard work will contribute significantly towards advancing the mental health initiatives in Uttarakhand. The government of Uttarakhand is prepared to completely support such evidence based initiatives for the cause of mental health of children and adolescents of the State.

Warm Regards,

Dr. Dhan Singh Rawat

Hon’ble Minister

Dehradun Medical Health and Medical Education

MESSAGE

SECRETARY

As the Secretary Medical Health & Medical Education for Uttarakhand, I extend my heartfelt gratitude to the team for conducting this comprehensive epidemiological survey of autism, intellectual disability and common psychiatric disorders among children and adolescents in Uttarakhand. This is the first ever child and adolescent mental health survey in the country.

This collaborative initiative between the State Mental Health Authority, Uttarakhand, National Institute of Mental Health and Neuro Sciences (NIMHANS), Bengaluru, and Doon Medical College, Dehradun, holds paramount importance in our collective efforts to enhance the mental well- being of our children and adolescents. It is an important step towards understanding the mental health landscape of our children and adolescent population. The significance of this survey lies in its potential to uncover critical insights into the prevalence, patterns and associated factors of mental health issues among the younger population. The data and insights gathered will be instrumental in shaping effective policies and interventions to support the well-being of our children and adolescents, who are the future of Uttarakhand.

Themeticulousresearchanddedicationtothiscausearecommendable. I extend my sincere gratitude to NIMHANS, Bengaluru for having technically guided the conduct of this survey, GDMC, Uttarakhand for scientific conduct of this survey and SMHA, Uttarakhand for taking the initiative forward. This survey is a testament towards the commitment of The Department of Health towards improving the health and future of our children and adolescents.

Our department is committed to utilise this evidence as a guideline for the State of Uttarakhand in shaping and rolling out children and adolescent mental health well-being program. I wish that the evidence generated guide effective policies, programs, and interventions that safeguard the well-being of our younger generations. I hope that through collective efforts of government agencies, health professionals, educators, and communities, we can ensure that every child and adolescent receives the care, support, and opportunities they deserve to thrive. My best wishes for the endeavour.

Dr. R Rajesh Kumar

I.A.S.

Secretary, Medical Health & Medical Education Government of Uttarakhand

MESSAGE

DIRECTOR GENERAL OF HEALTH

As the Director General of Health for Uttarakhand, I extend my heartfelt gratitude to the team for conducting this comprehensive epidemiological survey of autism, intellectual disability and common psychiatric disorders among children and adolescents in Uttarakhand. This is the first ever child and adolescent mental health survey in the country.

This collaborative initiative between the State Mental Health Authority, Uttarakhand, National Institute of Mental Health and Neuro Sciences (NIMHANS), Bengaluru, and Doon Medical College, Dehradun, holds paramount importance in our collective efforts to enhance the mental well-being of our children and adolescents. It is an important step towards understanding the mental health landscape of our children and adolescent population. The significance of this survey lies in its potential to uncover critical insights into the prevalence, patterns and associated factors of mental health issues among the younger population. The data and insights gathered will be instrumental in shaping effective policies and interventions to support the well-being of our children and adolescents, who are the future of Uttarakhand.

The meticulous research and dedication to this cause are commendable. I extend my sincere gratitude to NIMHANS, Bengaluru for having technically guided the conduct of this survey, GDMC, Uttarakhand for scientific conduct of this survey and SMHA, Uttarakhand for taking the initiative forward. This survey is a testament towards the commitment of The Department of Health towards improving the health and future of our children and adolescents.

Warm Regards,

Dr. Sunita Tamta

Director General, Medical Health and Family Welfare, Government of Uttarakhand

MESSAGE

CHIEF EXECUTIVE OFFICER

As the Chief Executive Officer of the State Mental Authority of Uttarakhand, we are pleased to acknowledge the comprehensive epidemiological survey of autism, intellectual disability, and common psychiatric disorders among children and adolescents in our state, which is the first-ever such inititative in the country.

This survey provides crucial insights into the mental health challenges faced by our young population. The detailed data and analysis conducted in this survey will play a pivotal role in guiding our policies and interventions to support the mental well-being of Uttarakhand’s children and adolescents. The number of children and adolescents with autism, ID and common psychiatric disorders are considerable and reminds us of the responsibility that the State Mental Health Authority has towards these children and adolescents of the state.

The State Mental Health Authority has supervised and monitored this survey throughout its conduct ensuring scientific rigor and representation. I would like to thank NIMHANS, Bengaluru and GDMC, Dehradun for their invaluable contribution to this essential work. We commit to carefully consider the findings and recommendations of this report to enhance our mental health services and ensure that our future citizens receive the care and support that they need.

Best regards,

Dr. Shikha Jangpangi

Chief Executive Officer,

State Mental Health Authority of Uttarakhand.

MESSAGE

DIRECTOR, NIMHANS

I am pleased to highlight the importance of the first ever epidemiological survey on autism, intellectual disability and common psychiatric disorders among children and adolescents in India, conducted in the state of Uttarakhand.

This survey is an important step in understanding the mental health issues of our children and adolescents. By providing comprehensive data and insights, it allows us to identify the burden and distribution of these conditions, which is crucial for effective planning and focused intervention.

This survey is of utmost importance as it marks a significant stride in our ongoing commitment to understanding and addressing mental health challenges among children, adolescents and youth in India and beyond. NIMHANS, being at the forefront of mental health research and initiatives, has a rich history of contributions in the field. NIMHANS has played a pivotal role in shaping the National Mental Health Program since its inception in 1982. The institute’s expertise and dedication have been instrumental in the development and implementation of policies and programs aimed at promoting mental health and well-being on a national scale. Furthermore, NIMHANS has conducted the first-ever National Mental Health Survey in 2016, a ground-breaking effort that provided invaluable insights into the mental health landscape of our country. This current survey is the first-ever state-wide representative survey on Autism, Intellectual disability and common psychiatric disorders among children and adolescents in India.

The findings from this survey will surely result in the development of comprehensive services in the area of mental health for children and adolescents in the state.

I would like to thank the team for their valuable contribution to this initiative, and I look forward to the positive outcomes that will emerge from our collaborative efforts. I also congratulate the State Mental Health Authority of Uttarakhand, Government Doon Medical College, Uttarakhand and Department of Epidemiology, Centre for Public Health, and Department of Child and Adolescent Psychiatry, NIMHANS for collaborating and successful conduct of an important endeavour.

Wrm regards,

Dr. Pratima Murthy Director, NIMHANS

MESSAGE

INVESTIGATORS

As the investigators of the epidemiological survey of autism, intellectual disability, and common psychiatric disorders among children and adolescents in Uttarakhand, we are pleased to share the results of our comprehensive research.

This survey holds immense significance as it represents a pioneering effort in the field of Child and Adolescent mental health in India. As investigators, we wish to shed light on the crucial contributions of our respective departments- the Department of

Epidemiology and the Department of Child and Adolescent Psychiatry, NIMHANS.

The Department of Epidemiology, with its rich history in conducting large-scale surveys, has been at the forefront of epidemiological research aimed at understanding public health challenges and designing and implementing large-scale community- based mental health promotion initiatives and care models across various levels of healthcare. The expertise garnered from conducting surveys on a national scale, including the first- ever National Mental Health Survey in 2016, positions us to coordinate and conduct this important survey effectively.

In parallel, the Department of Child and Adolescent Psychiatry is dedicated to serving the cause of Child and Adolescent mental health. Our commitment extends beyond clinical care to pioneering research and advocacy initiatives. This survey, being the first-ever of its kind on Child and Adolescent mental health in Uttarakhand, is poised to become a benchmark for such nationwide surveys in the future.

This survey estimates that approximately 35,746 children and adolescents in Uttarakhand have at least one mental health morbidity. Although this seems a small number, the impact such problems have on the family and society is immense and needs to be effectively addressed. Another important observation of this survey is low awareness among respondents regarding the welfare schemes and benefits available for such children and adolescents. These would be the first-step towards the cause of child and adolescent mental health for the state.

We hope that the findings and recommendations presented in our report will be instrumental in shaping strategies for mental health of child and adolescents ensuring a brighter future for them in Uttarakhand. We formally thank the State Mental Health Authority and the Government of Uttarakhand for their continued commitment to this important cause.

Warm regards,

Dr. Pradeep B S

Deputy Medical Superintendent and Professor and Former Head of Epidemiology, NIMHANS

Dr. K John Vijay Sagar

Professor and Head, Department of Child and Adolescent Psychiatry, NIMHANS

ACKNOWLEDGEMENT

STATE MENTAL HEALTH AUTHORITY, UTTARAKHAND

We gratefully acknowledge the landmark achievement of conducting the first-ever Epidemiological Survey on Autism, Intellectual Disability, and Common Psychiatric Disorders among Children and Adolescents in India, carried out in the state of Uttarakhand.

This pioneering effort marks a significant step towards understanding the mental health needs of children and adolescents and provides vital data to guide effective planning, policy formulation, and targeted interventions.

We extend our sincere gratitude to the Department of Epidemiology, Centre for Public Health; the Department of Child and Adolescent Psychiatry, NIMHANS and the Government Doon Medical College, Uttarakhand for their exemplary collaboration and dedication in successfully

completing this important initiative.

Our heartfelt appreciation also goes to the team members whose commitment, expertise, and hard work have made this survey a reality. Their collective effort contributes meaningfully to strengthening mental health research, policy, and practice in India.

This survey marks a significant milestone in our continued commitment to understanding and addressing mental health challenges among children, adolescents, and youth in India and beyond. NIMHANS, as a national leader in mental health research and innovation, has a longstanding legacy of contributions in this field. Since its inception, the Institute has played a pivotal role in shaping the National Mental Health Programme and has been instrumental in developing and implementing policies and programs aimed at promoting mental health and well- being across the nation.

Dr Sumit Deb Barman Joint Director

SMHA Uttarakhand

Dr Pankaj Kumar Singh Assistant Director SMHA Uttarakhand

CONTENT

1. INTRODUCTION ……………………………………………………………………………………………. 3 2. OBJECTIVES………………………………………………………………………………………………… 5 3. METHODOLOGY …………………………………………………………………………………………… 6

Sampling Strategy……………………………………………………………………………….. 6 Sample Size………………………………………………………………………………………….. 6 Selection of Households and Study Subjects ……………………………………..7 Data Collection Instruments ………………………………………………………………. 11 Training and Implementation of Data Collection ………………………………..15 Monitoring of Data Collection ……………………………………………………………..16 Project Coordination and Communication………………………………………….16

4. ETHICAL CONSIDERATIONS ……………………………………………………………………….. 17 5. DATA ANALYSIS …………………………………………………………………………………………. 18 6. RESULTS …………………………………………………………………………………………………….20 7. CONCLUSIONS……………………………………………………………………………………………. 27 8. RECOMMENDATIONS………………………………………………………………………………….28

EXECUTIVE SUMMARY

INTRODUCTION

a pre-tested, semi-structured schedule administered on digital tablets in Hindi or English. When feasible, children were also interviewed.

RESULTS

The survey achieved a high response rate of 98.8%, with 802 children and adolescents ultimately participating. Mothers were the primary respondents in the majority of households (90.9%). The analysis provides a clear picture of the distribution of mental health and neurodevelopmental conditions among children and adolescents in Uttarakhand. Intellectual Disability emerged as the most common condition, with a weighted prevalence of 56 per 10,000, translating to approximately 14,790 affected children statewide. Specific Learning Disability followed closely, with a prevalence of 55 per 10,000 (around 12,369 children). The near-equal prevalence of ID and SLD underscores the urgent need for school-based screening and intervention programs.

Anxiety and depression were the next most common conditions, with a prevalence of 23 per 10,000, affecting an estimated 5,067 children. Autism Spectrum Disorder was reported at 8 per 10,000 (2,445 children), while Attention Deficit Hyperactivity Disorder was the least prevalent, at 4 per 10,000 (1,075 children). Collectively, ID, SLD, ASD, ADHD, depression, and anxiety were estimated to affect approximately 35,746 children and adolescents in Uttarakhand.

Background information was also collected on maternal health and child nutrition, which revealed that most mothers reported normal nutrition during pregnancy (98.75%), and most children were of normal nutritional status (96.26%).

Patterns of care-seeking behaviour showed that two- thirds of respondents sought services from government or municipal hospitals (66.21% for general health; 65.83% for mental health/neurological conditions), while one-third (32.04%) relied on private hospitals, clinics, or doctors. Awareness levels were mixed—while 78% of respondents had heard of depression, knowledge of government schemes was negligible. Only 0.26% of participants had heard of the Unique Disability ID (UDID), and none were aware of its associated benefits. This highlights a substantial gap in disability-related awareness and service utilisation.

India, with an adolescent population of nearly 253 million, faces a critical challenge in safeguarding the mental health and developmental well-being of its younger generations. Neurodevelopmental conditions such as autism spectrum disorder (ASD), intellectual disability (ID), and specific learning disabilities (SLD), along with psychiatric conditions such as depression, anxiety, and behavioural disorders, pose a significant burden on children, adolescents, their families, and society at large. Globally, one in seven adolescents is affected by a mental health disorder, and more than 317 million children and adolescents are estimated to live with neurodevelopmental conditions. In India, prevalence estimates for neurodevelopmental disorders range between 7.5% and 18.5%, with autism affecting approximately 1 in 68 children and ID affecting around 2%. Despite the magnitude of this problem, state-level data are scarce, limiting the capacity for locally relevant interventions.

In response to a directive from the Honourable High Court of Uttarakhand, an epidemiological survey was conducted to generate state-specific evidence on the prevalence of autism, ID, and common psychiatric disorders among children and adolescents in Uttarakhand. The study was jointly undertaken by the Department of Epidemiology and the Department of Child and Adolescent Psychiatry, NIMHANS, in collaboration with the State Mental Health Authority, Uttarakhand, and Doon Medical College, Dehradun.

METHODOLOGY

The study adopted a cross-sectional survey design and targeted children and adolescents aged 0–17 years across Uttarakhand. A stratified multistage cluster sampling approach with probability proportional to size was used to ensure representativeness. Four districts—Dehradun, Pauri, Almora,andNainital—werepurposivelyselectedtoreflectthe state’s geo-socio-cultural diversity. Two talukas were randomly chosen from each district, and within them, 10 clusters were selected proportionate to rural–urban distribution, resulting inatotalof80clusters.Fromeachcluster,11eligiblechildren were systematically sampled, yielding a target sample size of 880.

Data were collected from parents or guardians using

CONCLUSION AND RECOMMENDATIONS

Effort to document the prevalence of neuro developmental and psychiatric conditions among children and adolescents in Uttarakhand, revealed that developmental and mental health challenges are widespread.

newspapers, community radio, social media, and local cable networks, supplemented with posters, brochures, street plays, wall paintings, and school- based drives to improve understanding, reduce stigma, and encourage early help-seeking.

l Schools should foster inclusive environments by appointing special educators, providing peer- support groups, and ensuring access to counselling services, with strategic planning for the equitable placement of special educators across districts.

l Intellectual disability and specific learning disability are the most common conditions, collectively affecting over 27,000 children, while depression, anxiety, autism, and ADHD, though

less prevalent, contribute substantially to the overall burden. l

Parental and caregiver education should be integrated into antenatal and postnatal visits, immunisation sessions, and community outreach programs to facilitate early recognition of developmental and mental health concerns.

Programs such as RBSK, District Early Intervention Centres, and adolescent health clinics should be strengthened with counselling, referral mechanisms, caregiver support groups, and skill- building initiatives to reduce caregiver burden.

Finally, awareness and utilisation of disability- related schemes, particularly the Unique Disability ID (UDID), must be prioritised by guiding families through the application process and ensuring that eligible children can access available entitlements.

Collectively, these measures can help Uttarakhand develop a comprehensive, inclusive, and sustainable approach to safeguarding the mental health and developmental well-being of its children and adolescents.

l The findings highlight the urgent need for state- specific, evidence-based interventions to ensure early identification, timely support, and access

to appropriate services for affected children and adolescents. l

l To address these challenges, routine screening for intellectual disability, specific learning disability, autism, ADHD, depression, and anxiety should

be integrated into existing programs such as the Rashtriya Bal Swasthya Karyakram (RBSK), school l health initiatives, and adolescent health clinics.

l Frontline health and education workers, including ASHAs, Anganwadi workers, teachers, and primary healthcare providers, must be trained to recognise early signs and facilitate prompt referral and l management.

l Large-scale awareness campaigns and Information, Education, and Communication (IEC) strategies should be implemented using television, radio,

1. INTRODUCTION

India has the largest adolescent population globally, estimated at 253 million, and one out of every five individuals is between the ages of 10 to 19 years(1). As these adolescents will become the adults of tomorrow, investing in their safety, health, education and life skills is crucial for India’s social, political and economic growth. Ensuring their well-being will influence the country’s trajectory in the coming decades(1,2).

In recent years, there has been growing recognition of the significant impact of neurodevelopmental and common psychiatric disorders on the well-being of children and adolescents worldwide. Among these, autism spectrum disorder (ASD), intellectual disability (ID), and various psychiatric disorders are gaining more attention because of their profound effects on individuals, families and society.

According to UNICEF, in 2019, around 317 million children and adolescents globally were affected by health conditions that contribute to neurodevelopmental disabilities(3). The prevalence of Neurodevelopmental disabilities (NDDs) in India ranges between 7.5 and 18.5 %(4,5).

Autism spectrum disorders (ASD) are a group of diverse conditions characterised by difficulty with social interaction, communication and atypical patterns of activities and behaviours(6). Worldwide, about 1 in 100 children have autism. In India, the prevalence is higher, with 1 in every 68 children aged between 2 to 9 years being affected by autism(6,7). Systematic review and meta-analysis by Chauhan et al emphasised the need for region-specific epidemiological studies to understand the burden of ASD(8).

Intellectual disability is when a child has major difficulty or delays in acquiring skills in areas such as motor skills, communication, social interaction, play and learning(9). The Global Burden of Disease (GBD) study reported a global prevalence of intellectual disability at 2% in 2019 and the prevalence was higher in lower and middle-income countries(3). A study found that the prevalence of intellectual disability (ID) among children and adolescents in India was 2%(10). ID makes a person incapable of living an independent life, particularly for parents who have to bear the main burden of caring

for such children(11). However, research on this issue is limited in the Indian context.

Additionally, common psychiatric disorders such as depression, anxiety, and behavioural disorders significantly impact the mental health and well-being of young individuals. Globally, one in seven 10-19 year olds experiences a mental disorder, with depression, anxiety and behavioural disorders being the most common(12). The prevalence of mental disorders in India was 14.17% in the year 2021(13). The reporting systems for these disorders are inadequate in India for children and adolescents(14).

India has a vast and diverse population, so national- level data does not capture the unique social, cultural, geographical, and healthcare realities of individual states, as health is a state subject(15). State-specific information on the prevalence of neurodevelopmental disorders such as autism spectrum disorder (ASD), intellectual disability (ID), and common psychiatric disorders is therefore essential as it enables the development of locally relevant and context-specific interventions, which are more likely to be effective. It guides state- level policy decisions and budget allocations, ensuring that resources are directed where they are most needed. Regional epidemiological data can highlight disparities between states and identify underserved or vulnerable populations that may be overlooked in broader national estimates. With this in mind, the present study focuses on Uttarakhand to generate critical data that can inform targeted action and support improved outcomes on child and adolescent mental health & well-being.

Conducting epidemiological surveys focused on these conditions is crucial for designing evidence- based interventions, policy-level changes, healthcare planning and resource allocation to cater to the needs of these children and adolescents. With this background, this study aims to estimate the prevalence of autism, intellectual disability and common psychiatric disorders among children and adolescents in Uttarakhand, while also exploring help-seeking behaviours. It also seeks to provide recommendations for improving care and support for these individuals in the state of Uttarakhand.

STATE OF UTTARAKHAND

Uttarakhand is a unique state in India, with a population of 10,086,292 (Census of India 2011) (Figure 1). Located at the foothills of the Himalayan Mountain ranges, it is largely a hilly State, having international boundaries with China (Tibet) in the north and Nepal in the east. It consists of 13 districts, 113 tehsils spread over 53,483 Sq Km. Dehradun is the Capital of Uttarakhand. The town lies in the Dun Valley, on the watershed of the Ganga and Yamuna rivers. With literacy levels higher than the national average, the state has an abundant supply of quality human resources.

With these unique features, Uttarakhand demands particular focus on children and adolescents’ mental health, focusing on the age groups of 0-17 years.

A recent judgement from the Honourable High Court of Uttarakhand has directed the government of Uttarakhand to conduct an epidemiological survey of children and adolescents with intellectual disability, or mentally disturbed in the state of Uttarakhand. It has also specifically directed the Department of Epidemiology from the National Institute of Mental Health and Neurosciences (NIMHANS), Bengaluru, to conduct the survey.

This survey was conducted by the Department of Epidemiology, Centre for Public Health, NIMHANS and Department of Child and Adolescent Psychiatry, NIMHANS, in collaboration with the State Mental Health Authority of Uttarakhand and Doon Medical College, Dehradun, with the following objectives:

Female Literacy

70.01%

Male Literacy

87.40%

Male

51,37,773

Approximate Population 1.01 Crores

Literacy Rate

78.82%

Female

49,48,519

Sex Ratio

963

Figure 1: Profile of Uttarakhand State (Census 2011) (16)

2. OBJECTIVES

1. To estimate the prevalence of autism, intellectual disability and common psychiatric disorders among children and adolescents in Uttarakhand.

2. To understand help-seeking among children and adolescents with autism, ID/mentally disturbed and common psychiatric disorders in Uttarakhand.

3. To provide inputs and recommendations regarding the current status of such children and adolescents and ways to provide/improve care and support for such children in Uttarakhand.

3. METHODOLOGY

STUDY DESIGN

We conducted a cross-sectional survey of parents/ guardians and/or children and adolescents aged 0 to 17 years residing in Uttarakhand.

SAMPLING STRATEGY

We adopted a stratified multistage cluster sampling design with probability proportional to urban-rural distribution of population size covering the whole state. All children aged 0 to 17 years and their parents/ guardians residing in Uttarakhand were the study subjects. This sampling design is a time-tested, scientifically rapid, and adaptable survey design to estimate the burden of health problems within a community when a thorough sampling frame is not available (17,18). (Figure 2)

SAMPLE SIZE

The total sample size calculated for this survey was 880. The cluster size was determined as 11 subjects per cluster with a total sample size of 880. Within each taluka, 10 clusters were identified, resulting in a total of 80 clusters. The sample size was calculated assuming a prevalence of 50%, an absolute precision of 5%, a design

effect of 2, and an anticipated non-response rate of 15%. The prevalence of 50% was assumed as the sample size estimates for absolute precision is largest, and there was no precedence for such surveys.

SELECTION OF DISTRICTS, TALUKAS AND VILLAGES FOR THE SURVEY

The districts were selected based on expert recommendations regarding the geo-socio-cultural diversity of the state. Four districts, namely, Dehradun, Pauri, Almora, and Nainital, were selected for the survey based on expert input representing the geo- socio-cultural diversity of Uttarakhand (Figure 2). Two talukas from each of these four districts were randomly selected using simple random sampling (total 8 talukas), namely, Kotdwara, Pauri, Dwarahat, Almora, Haldwani, Nainital, Dehradun and Rishikesh (Table 2). From each of these talukas, 10 clusters were selected. The cluster was defined as a village in rural areas and an urban ward in urban areas. The number of urban and rural clusters was selected proportionate to the rural-urban distribution of child and adolescent population of the state. These clusters were selected using the data

Dehradun Pauri Almora Nainital

Figure 2: Map of Uttarakhand showing selected districts for the survey 6

District

Taluka

Clusters

Dehradun

Doiwala, Pittuwala, Nanur Khera, Nakraunda, Banjarewala Mafi,Balawala, Markham Grant, Doiwala(NP), Dehradun(M.corp+OG)

Rishikesh

Kuthar, Bhogpur, Garhimay Chak, Shiddar Wala, Athhoorwala, Mazri Grant, Hrishikesh, Rishikesh (CT), Haripur Kalang, Rishikesh(MB).

Nainital

Haldwani

Banskhera Iswaridatt, Ramrijasua, Nandpur, Lachhampur, Dhaula Khera, Kisanpur Range, Lohariasal Talla, Fatehpur Range (Dhamua Dunga Area), Mujhani, Haldwani-cum-kathgodam(MB+OG),

Nainital

Dhweti, Almotha, Bhalyuti, Jantuwal Gaon, Saur, Gahna, Beluwakhan, Nainital(CB),Bhimtal(MB), Nainital(MB).

Almora

Dwarahat

Kiroli Talli, Rana, Dadholi, Prkote, Gwar, Bhatora, Irha Avam Chak Malla, Dwarahat(NP).

Ranikhet

Ranikhet(CB), Dwarahat(Nainital),Bhowali(MB).

Almora

Poth Free sample state, Bhatkot Gunth Kamleshwar, Mungal, Tuleri, Jyoli, Gauli Mahar, Ligurata, Almora (CB), Khatyari(CT), Almora(MB).

Pauri

Damaili, Panchali, Dadogi, Sula, Raidul, Bunga, Wajali, Devaprayag(NP) (PART), Pauri(MB)

Landsdowne

Table 1: Selected Clusters and Talukas for the survey by district

from the Census of India 2011. If sufficient number of clusters were not available within the selected taluka or district, next nearest taluka or district was selected. Thus, talukas Lansdowne in Pauri district, Ranikhet in Almora district and Bhowali in Nainital were selected as urban clusters due to lack of adequate urban clusters in the initially selected talukas.

SELECTION OF HOUSEHOLDS AND STUDY SUBJECTS

The study team used a uniform approach throughout the survey to select households and respondents for the survey (Figure 3, 4 & 5). All the children and adolescents between 0 to 17 years in sampled villages and urban blocks constituted the sampling frame. The study team, after confirmation of the cluster from the local administration, went to the centre of the cluster and identified all the streets and numbered them serially in clockwise direction starting from the north

east corner of the cluster (Figure 3). The first street was selected randomly using the currency method (Figure 4). The first household within the street was selected randomly using another currency note (Figure 5). Household information was collected from the most reliable respondent available within the household during the time of the survey. All eligible respondents who were available at the time of the survey were interviewed using digital tablets. This was done even if the requisite numbers per cluster exceeded in the last household. After the survey was completed in the household the interviewers went on to the next nearest household (the household which has its door closest to the interviewed household) as done in the conventional coverage evaluation surveys(19). If adequate number of respondents were not available in a particular cluster, the survey team went to the next nearest village to collect data for the remaining number of subjects.

Figure 3: Schematic representation of identifying households for data collection

Go to the selected village

Identify and confirm the name of the village by talking to people in the village

Go to the centre of the village

Draw a rough map of the village identifying all the streets from the centre of the village

Number all the streets from the north east corner of the village in clockwise direction

Randomly select a street to select the 1st household using currency methods (Figure 3)

Count the number of household in the selected street. Select the 1st household randomly

Ask whether there is any person between 0-17yrs living in the household

Use household information sheet YES and start the interviews

Go to the nearest household (household which has the door closest to the previously selected household)

Figure 4: Process of selection of the first street in the selected village

Illustration of the currency method for selection of the first street

Take a currency note and record its serial number. Select the last digit number starting from the right from that serial number and select the first street from the list which is numbered the same as the selected serial number. For e.g. in the above figure, there are 8 streets. In the currency note, the serial number is 28A 885161. Hence, starting from the last digit number on the extreme right of the currency note, we need to select street number 1. Hence, the first street to be surveyed is the one which is numbered as 1 in the list. (Note: we included last digit from the extreme right of the currency note for selection of the street because the number of streets are in single digits i.e 8). If the total number of streets are in two digits (≥ 10), then we will have to select two numbers from the right hand corner of the currency note.

Illustration of the currency method for selection of the first street

Take another currency note and record its serial number. Select the last two digits starting from the right from that serial number and select the first household from the census list which is numbered the same as the selected number from the currency serial number. For e.g. in the above figure, there are 11 households. In the currency note, the serial number is 00F 021803. Hence starting from the last digit in the extreme right of the currency note, we need to select household number 03. Thus, the first household to be surveyed is the one which is numbered as 3 in the households list. (Note: we included last two digits of the currency note for selection of households because the number of households are in double digits i.e 11)

Uttarakhand State

2 Talukas per district

(Total 8 Talukas)- Randomly

4 districts (Dehradun, Pauri, Almora, Nainital)

135 24

11 subjects per cluster (Households within each cluster was selected) Final Sample Size- 220/ district (Total 880)

Figure 6: Flow Chart for Sample Size Calculation.

10 clusters in each taluka (Total 80 clusters) – Proportionate to Urban- Rural

Figure 5: Process of selection of the first household in the selected street

INSTRUMENTS FOR DATA COLLECTION

A pre-tested semi-structured, partially open-ended interview schedule, specifically developed for the purpose of this survey, was used to collect the data. The data was collected using a digital tablet. Copies of the hand-held pen and paper survey schedules were

Table 2: Section-wise details of the survey schedule

provided to the field data collection team to use them in case of problems with the digital tablets. The interview schedule was available both in Hindi and English with an option provided in the tablet to select the required language. The schedule had 13 sections as detailed below:

This section consisted of household details, including details of members in the household, their socio-demographic details and habits, along with identifying information about the household.

This section collected information on anxiety and depression using RCADS. RCADS is a validated instrument that includes 47 items, each scored on a 4-point Likert scale (0 = never, 3 = always), with a minimum score of 0 and a maximum score of 141. It assesses symptoms across several subscales: Generalised Anxiety Disorder (GAD), Separation Anxiety Disorder (SAD), Social Phobia (SP), Panic Disorder (PD), Obsessive-Compulsive Disorder (OCD), and Major Depressive Disorder (MDD). Higher scores indicate more severe symptoms. Children were considered positive if any of the disorder or syndrome T-scores were ≥65.

Section Number

Section Name

Administered to

Description

Household Form

Parent/Guardian

Socio-Demographic Characteristics

Parent/Guardian

This section delved into socio-demographic characteristics of all eligible participants (age, gender, religion, marital status, education, etc).

Anxiety and Depression Revised Child Anxiety and Depression Scale (RCADS)(20)

Children (8-17 Years)

The Alcohol, Smoking and Substance Involvement Screening Test (ASSIST)(21)

Children (10-17 Years)

The Alcohol, Smoking, and Substance Involvement Screening Test (ASSIST) 10 was used to screen for hazardous, harmful, and dependent use of alcohol, tobacco, and other substances. It provides scores indicating the risk level for substance use problems, guiding interventions and further assessments. If the total score from the responses to the alcohol- related questions was ≥ 11, it was considered positive.

If the total score from the responses to the substance (other) score was ≥ 4, it was considered positive.

If the total score from the substance (injectable) score was ≥1, it was considered positive.

5A.

Maternal Information

Parent/Guardian

Maternal Information was asked to the parent or guardian. It included questions about the mother’s nutrition during pregnancy, any pregnancy complications, type of delivery, preterm birth, newborn health issues requiring medical attention, and the child’s birth weight in kilograms.

Screening for Intellectual Disability (NIMHANS-ID Screener) (22)

Parent/Guardian of children aged 6-17 years

The NIMHANS Intellectual Disability Screening Instrument (NID Screener) was developed by the Department of Child and Adolescent Psychiatry based on clinical experience, literature review, and expert consultation. The instrument comprises of six items for screening Intellectual Disability. Parents or guardians of children aged 6-17 were asked to respond “Yes” or “No” to each item. A child was considered screened positive if any response in Section A or Section B was “Yes”; otherwise, the screening was considered negative.

Screening for Autism Spectrum Disorder (MCHAT) (23)

Parent/Guardian of children aged 2-3 years

Screening for Autism spectrum disorder (ASD) was done utilizing the Modified Checklist for Autism in Toddlers (MCHAT). M-CHAT is a reliable and valid screening tool consisting of a series of questions aimed at identifying early signs of ASD, focusing on social, communicative, and behavioural development. A child was considered positive if the total score from the responses to the questions was ≥3.

Screening for Autism Spectrum Disorder (IASQ)(24)

Parent/Guardian of children aged 4-17 years.

The Indian Autism Screening Questionnaire (IASQ) was used to Screen for autism spectrum disorder. Derived from the Indian Scale for Assessment of Autism (ISAA) (24), the IASQ is a 10-item, yes /no questionnaire designed for use by minimally trained workers in the general population. Children were considered positive if the sum of the responses to the questions was ≥ 1; otherwise, they were considered negative.

Screening for Specific Learning disabilities (NIMHANS-BRIEF SLD Tool) (25)

Parent/Guardian of children aged 8-17 years

The NIMHANS-BRIEF SLD tool comprises of five items designed to identify specific learning disorder. For each item, the parent or guardian of the child was asked to rate the response on a scale from 1 to 5, where 1 indicates “strongly disagree”, 2 “Disagree”, 3 “Neutral”, 4 “Agree”, and 5 “Strongly Agree”. A child was considered to have screened positive if the response to any one of the questions was ≥4.

Attention-Deficit/ Hyperactivity Disorder (ADHD) Oppositional– Defiant Disorder (ODD) (SNAP IV) (26)

Parent/Guardian of children aged 4-17 years

Attention Deficit/Hyperactivity Disorder (ADHD) and Oppositional Defiant Disorder (ODD) were screened using the SNAP-IV scale. Each question was rated on a 4- point Likert scale, with 0 meaning “not at all” and 3 meaning “very much”. The child was considered inattentive if the sum of the responses for the questions was ≥ 13. Hyperactivity was positive, if the sums of the responses for those questions score ≥ 13. ODD was considered positive if the sum of the responses for the specified questions was ≥ 8.

Conduct Disorders (VANDERBILT) (27)

Parent/Guardian of children aged 6-12 years

Anxiety and Depression (RCADS) (20)

Parent/Guardian of children aged 8-17 years.

This section probed parents about their children’s anxiety and depression using the RCADS scale.

Help Seeking Behaviour

Parent/Guardian

For children who tested positive, parents were questioned to determine their awareness about all the benefits of having UDID such as travel benefits, admission to special schools, health insurance, income tax benefits, and others. They were also asked if they were aware of the following rights.

The National Trust Act 1999, (28) enacted by the Indian Parliament, establishes the National Trust for the welfare of Persons with Autism, Cerebral Palsy, Mental Retardation, and Multiple Disabilities. The Act aims to:

l Enable and empower individuals with these disabilities to live independently and as fully as possible within and as close to the community to which they belong.

lStrengthen facilities to provide support to individuals with disabilities and their families.

l Extend support to registered organizations to provide need- based services during the period

The Vanderbilt scale was used to assess conduct disorders and consisted of two parts: behaviour questions and performance questions. A child was considered positive, if the response to 3 or more behaviour questions was ≥2, and the response to at least one performance questions was ≥4; otherwise, the result was considered negative. If the child was positive, a pop-up message would appear in the digital questionnaire indicating that the child should be referred to a psychiatrist for further evaluation.

This section investigated help- seeking behaviours, shedding light on participants’ tendencies to seek assistance for mental health issues or related concerns.

of crisis in the family of persons with disabilities.

l Promote measures for the care and protection of persons with disabilities in the event of the death of their parent or guardian.

lEvolve procedures for the appointment of guardians and trustees for persons requiring such protection.

l Facilitate the realization of equal opportunities, protection of rights, and full participation of persons with disabilities.

Rights of Persons with disabilities (RPWD) Act, (29) 2016, is a comprehensive law enacted in India to uphold and protect the rights of persons with disabilities. Here are some key points of the act:

lIncreased Categories of Disabilities: The act recognizes 21 disabilities compared to the previous 7, including autism, cerebral palsy, and hemophilia.

l Education and Employment: It ensures inclusive education for children with disabilities and mandates reservation of 4% of government jobs for persons with disabilities.

l Accessibility: The act emphasizes making public buildings, transportation, and information accessible to persons with disabilities.

lRights and Entitlements: It guarantees equal rights and non- discrimination in all areas including education, employment, healthcare, and participation in public life.

l Guardianship: It provides for a limited guardianship acts as a joint decision- maker, protecting the interests of the persons with disabilities.

lPenalties and Punishments: The act specifies penalties for discrimination and violations of its provisions.

l Social Security: It includes measures for social security, health, rehabilitation, and recreation for persons with disabilities.

l Grievance Redressal: It establishes mechanisms for grievance redressal, including setting up of special courts for speedy trial of offenses.

The Mental Health Care Act, 2017, (30) is landmark legislation in India aimed at improving access to mental healthcare and safeguarding the rights of individuals with mental illness. Here are its key features:

l Rights of Persons with Mental illness: The act guarantees the right to access mental healthcare and treatment, protection from inhuman and degrading treatment, and the right to live in, be part of, and not be segregated from society.

lAdvance Directive: Individuals can make an advance directive specifying how they wish to be treated and who their nominated representative should be in case they are unable to make decisions.

l Mental Health Review Boards: The act establishes Mental Health Review Boards to oversee the implementation of the law and to protect the rights of persons with mental illness.

l Decriminalisation of Suicide: Attempting suicide is no longer a criminal offence, recognizing that such individuals need care and treatment, not punishment.

l Confidentiality: The act ensures the confidentiality of mental health records and treatment, protecting the privacy of individuals with mental illness.

l Community-Based Treatment: It emphasizes providing care and treatment in a community setting rather than institutionalising patients, promoting their integration into society.

l Free services: Individuals with mental illness living below the poverty line are entitled to free mental health services.

lNon-Discrimination: The act prohibits discrimination against persons with mental illness in various spheres, including employment, education, and health services.

l Legal Aid: Provision of legal aid to persons with mental illness to ensure they can exercise their rights and seek redressal for grievances.

lProhibition of Electroconvulsive therapy: Electroconvulsive Therapy (ECT) without anaesthesia or muscle relaxants is prohibited, and ECT on minors is allowed only with the consent of the guardian and the approval of the Mental Health Review Board.

The Juvenile Justice Act (Care and Protection of Children), 2015, (31) is a significant legislation in India aimed at addressing legislation in India aimed at addressing the needs and rights of children in conflict with the law and those in need of care and protection. Here are its key features:

l Juvenile Justice Boards: The act mandates the establishment of juvenile justice Boards (JJBs) to deal with children in conflict with the law, ensuring a child-friendly approach to justice.

l Children’s Courts: Special Children’s Courts are established to handle cases involving children, ensuring speedy trials and child-friendly procedures.

l Age of Juvenility: The act distinguishes between children below 18 years, with specific provisions for those aged 16-18 involved in heinous offenses. These children can be tried as adults after a preliminary assessment by the JJB.

l Child Welfare Committees: The act provides for the establishment of child welfare committees (CWCs) in every district to deal with children in need of care and protection.

lAdoption: The act streamlines the adoption process, incorporating provisions for the adoption of children by prospective parents, both domestic and international, and ensuring their rights and welfare are safeguarded.

l Foster Care: The act encourages foster care as an alternative to institutional care, providing guidelines for placing children in family- based care.

l Rehabilitation and social Reintegration: The act emphasizes the rehabilitation and social reintegration and social reintegration of children, including provisions for education, vocational training, and counselling.

The investigators from NIMHANS and GDMC, Dehradun made regular monitoring visits to the field and ensured efficient and appropriate conduct of the survey. About 5% of the data collected was randomly checked by investigators from GDMC for accuracy. Any deviation more than 10% called for a repeat survey. However, the data collected was reliable and accurate and there were no repeat surveys done. The project team within NIMHANS monitored collected data remotely. Any discrepancies related to the data was clarified from the field through the investigators from GDMC and edits made in consultation with the Principal Investigator at NIMHANS. Every access into the server and edits made for the database was logged.

ETHICAL CONSIDERATIONS:

This survey was approved by the Institutional Ethics committees of both NIMHANS vide letter NIMHANS/41ST IEC (BS & NS DIV.)/2023 dated 24/04/2023 and GDMC, Dehradun vide letter dated 20/11/2023. All children and adolescents who screened positive for any of the assessed disorders or disabilities were provided with a referral form to visit their preferred mental health care provider. In addition, all respondents who screened positive were approached for assessment by a team of trained psychiatrists and psychologists from NIMHANS, GDMC and AIIMS, Rishikesh. They conducted assessments either in-person or through teleconsultation. Those diagnosed positive were referred either to their preferred mental health care provider or to the nearest district mental health program for further assessments, treatment

and support services.

TRAINING AND IMPLEMENTATION OF DATA COLLECTION

A team of 12 field data collectors

conducted data collection for this

survey. The field investigators were

trained for 4 days. (12th December-

14th December, 2023). The

training consisted of classroom

and field training sessions. The

team was trained in the beginning

on interviewing skills, protocol of

the study, research ethics and their

job responsibilities. This was followed

by explanation of the questionnaire that

focused on ways to ask questions, mark the answers both using the pen and paper questionnaire and the digital data collection tool.

All data collected was stored in password protected file within a cloud-server based within India. These files were accessible only to designated investigators within the project. The data collected was monitored both on the field and remotely at NIMHANS.

The data collection was supervised during training by the Principal investigator and field staff. The project coordinator was trained on supervising field activities, scrutinizing data and liaisoning with the Uttarakhand State, NIMHANS and field team. The investigators from NIMHANS have made repeated visits to Uttarakhand for supportive supervision and training with review of field activities and planning.

MONITORING OF DATA COLLECTION

Digitization of data collection and uploading the data onto the server on a periodic basis ensured remote monitoring of data collected at Uttarakhand and NIMHANS, Bengaluru. The project coordinator and data manager situated at NIMHANS verified the data on a daily basis and any data entry errors were flagged and clarified with the field team and changes informed to the Principal Investigator. The changes were approved by the Principal Investigator at NIMHANS after verification.

PROJECT COORDINATION AND COMMUNICATION

Monthly meetings were conducted both offline and online with project members to discuss the on-going status and address any arising issues. Efforts were made to ensure that all the members were consistently updated about the project’s progress.

4. ETHICAL CONSIDERATIONS

Informed consent was obtained from parents/guardians before conducting interviews with children/adolescents. Confidentiality of respondents was strictly maintained, and data was anonymized during analysis. Assent was obtained for all children aged 7-17 years. Parental consent was required for all children. All filled consent and assent forms were scanned daily and sent to the GDMC office, where they were securely stored with access limited only to GDMC investigators. The hard copies of the filled assent and consent forms were sent by post/courier service to GDMC, Dehradun once a week. They were stored in a secure locked safe with access only to the study investigators.

5. DATA ANALYSIS

Data analysis comprised of descriptive analysis of data by the different sections in the schedule. The prevalence was estimated for autism, intellectual disability and common psychiatric disorders.

SAMPLING WEIGHTS

To ensure that the findings of this study are representative of the population of children aged 0 to 17 years in Uttarakhand, sampling weights were calculated and applied during data analysis. Given the multistage sampling design employed in this study, the final sampling weight was constructed by combining weights from each stage of the sampling hierarchy—district, taluk, cluster, and household.

The sampling weight for each individual (denoted as SW) was derived as the product of the inverse probabilities of selection at each stage using the formula:

SW=DW×TW×CW×HW Where:

DW denotes District Weight. This is the Inverse of the probability of selecting a particular district.

To account for the over-representation of high- population districts, weights were calculated using population proportions. This ensured that districts contributed to estimates in proportion to their actual population size.

District proportion = (Total population in District)/ (Total population in state)

DW = (District proportion)/ (sum of 4 district proportions)

Since the four selected districts were among the most populous in Uttarakhand, traditional inverse probability weighting would have underrepresented their significance. By using population proportions for district weights, the analysis ensured that:

1. The larger districts contribute proportionally to estimates.

2. Results remain generalizable to the entire state.

TW denotes Taluka Weight. This is the inverse of the probability of selecting a specific taluk within the selected district.

TW = (Total taluks in selected districts)/ (selected taluks)

CW denotes Cluster Weight. This is the inverse of the probability of selecting a specific cluster within the selected taluka.

CW = (Total villages in selected taluks)/ (selected villages)

HW denotes Household Weight. This is the inverse of the probability of selecting a household within the selected cluster.

HW = (Total households in selected villages)/(selected households)

These weights were designed to correct for unequal probabilities of selection due to the sampling design and to allow the results to be generalized to the entire population of children and adolescents in the state. After applying these weights, the sum of the final sampling weights closely approximated the estimated total population of children aged 0 to 17 years in Uttarakhand, confirming the validity of the weighting process.

6. DIAGNOSIS

Data was collected by field workers using questionnaires. Children who screened positive were referred to a psychiatrist or a child and adolescent psychiatrist for further evaluation. A team was set up for this process, which included trained psychologists and psychiatrists from NIMHANS, GDMC & AIIMS, Rishikesh. Under the guidance of child and adolescent psychiatrists from NIMHANS, they diagnosed the screened-positive children through interviews, conducted either in person or by tele-consultation. For tele-consultations, the provided phone number was contacted, and the parent or guardian was interviewed using both audio and video. Where the child was willing, the child was also interviewed. Each interview lasted an average of 30–45 minutes. The analysis was descriptive, using frequencies and proportions to show both crude and weighted prevalence. Psychiatrists were given the child’s name, district, age, gender, screening status, and phone number to arrange the consultation.

7. RESULTS

Table 3: Child and adolescent (8 to 17 years) interview response status of participants of child & adolescent mental health survey, Uttarakhand (2024-2025)

Table 4: Socio-demographic characteristics of participants of child and adolescent mental health survey, Uttarakhand (2024-25)

N (%)

Weighted prevalence (p) (%) [95% C.I.]

Age in years (n=815)

9.31±4.81*

0-5

214 (26.26)

28.96 [22.77,36.02]

6-11

297 (36.44)

38.37 [31.14,46.18]

12-17

304 (37.3)

32.67 [23.96,42.77]

Gender (n=815)

Boys

402 (49.33)

46.17 [40.37,52.12]

Girls

413 (50.67)

53.83 [40.37,52.12]

Education (n=600) $

Pre-Primary

28 (4.67)

7.96 [1.88,28.11]

Primary

216 (36)

39.57 [22.81,59.19]

Middle School

191 (31.83)

30.22 [24.74,36.32]

High School

98 (16.33)

11.85 [6.09,21.78]

Intermediate and above

67 (11.17)

10.35 [6.17,18.15]

Occupation (n=600) $

Business

1 (0.17)

0.065 [0.008,0.52]

Housework

1 (0.17)

0.48 [0.043,5.07]

Student

587 (97.83)

97.09 [88.31,99.32]

Not working/ Unemployed

11 (1.83)

0.49 [0.081,2.84]

Locale (n=815)

Rural

571 (70.06)

20.33 [10.41,35.99]

Urban

244 (29.94)

79.67 [64.01,89.59]

Interview response

Child and adolescent interview response n (%) (N = 508)

Parent interview response n (%) (N = 815)

Completed

502 (98.8)

802 (98.4)

Interview partially completed

4 (0.78)

1 (0.1)

Respondent refused to take part

2 (0.39)

6 (0.7)

Not eligible/ Did not respond

307*

6 (0.7)

Respondent (N= 802)

Mother

–

729 (90.90)

Father

–

49 (6.11)

Guardian

–

24 (2.99)

*Only children aged 8-17 years were eligible for child and adolescent interviews

The child and adolescent interview survey had a response rate of 98.8%. Four respondents partially completed the interview, and two respondents refused to participate. The parent interview survey had a very high response rate (98.4%). One interview was partially completed, six respondents refused to participate, and six were not available for contact. Majority of the respondents for parent interviews were mothers (90%) (Table 3).

*Mean age + SD; %-Percentage; p-Weighted percentage; $Only Children >5 years are considered.

Overall, 815 children and adolescents participated in the survey. Their mean age was 9.31 years (SD=4.81), with more girls (50.67%) compared to boys (49.33%). The majority were students (97.83%), had completed primary and middle schooling (67.83%) and were mostly from rural areas (70.06%) (Table 4).

Screened Positive n (%)

Screened Negative n (%)

Diagnosed positive n (%)

p [95% C.I.]

Total N (%)

Locale

Urban

12 (8.63)

127 (91.37)

0 (0.00)

139 (27.36)

Gender

Girls

28 (10.29)

244 (89.71)

0 (0.00)

272 (53.54)

Variable

n (%)

Mother’s nutrition during pregnancy (N= 802)

Over nourished

4 (0.50)

Problem during pregnancy (N=815)

Type of delivery (N= 802)

Child born pre-term (N= 802)

Baby cried immediately after birth (N= 802)

Newborn baby had health issues (N= 802)

Nutritional status of the child (N= 802)

Diabetes

2 (0.24)

Seizures/convulsions

1 (0.13)

Caesarean

135 (16.83)

Under weight

24 (2.99)

Table 5: Anxiety and depression among children and adolescents (aged 8-17 Years) in Uttarakhand (2024-25) (N=508) (RCADS-Child)

Rural

Boys

Total

50 (13.55)

34 (14.41)

62 (12.2)

319 (86.45)

202 (85.59) 446 (87.8)

2 (0.54)

2 (0.85) 2 (3.9)

23 [1.9,264]

23 [1.9,264] 23[33.45,78.81]

369 (72.64)

236 (46.46) 508 (100)

*N/n=Frequency; %- Percentage; p-Weighted prevalence per 10000 children between 8-17 years

Among 508 children aged 8-17 years assessed, their mean age was 12.46 years (SD=4.81). 12.2% screened positive for anxiety and depression. More boys (14.41%) than girls (10.29%) showed signs. Only two children (3.9%) were confirmed to have the condition, both of them were boys from rural area (Table 5).

Table 6: Substance use among children and adolescents (aged 8-17 Years) in Uttarakhand (2024-25) (N= 405)

*Tobacco products – cigarettes, chewing tobacco, cigar; *Alcoholic beverages – beer, wine, spirits; *Others – cannabis, cocaine, amphetamine, inhalants, sedatives, hallucinogens, opioids and others*N/n- frequency; %- Percentage

Among 405 children aged 8-17, only 0.74% had used tobacco, 0.49% had used alcohol, and 0.25% reported using other substances. Recent use (past 3 months) was equally low, with 0.25% each use of tobacco, alcohol and other substances. None of them had used injectable drugs (Table 6).

Table 7: Maternal health information of participants of Uttarakhand Child and Adolescent Survey 2024-25 (N= 802)

Normal

Under nourished

Hypertension/high blood pressure Infection

Uneventful

Normal Others

Yes

Normal Over weight

792 (98.75) 6 (0.75)

10 (1.23)

5 (0.61) 797 (97.79)

667 (83.17) 0 (0.00)

95 (11.84)

781 (97.38)

21 (2.61)

772 (96.26) 6 (0.75)

Most mothers had normal nutrition during pregnancy (98.75%) and their pregnancy was uneventful (97.79%), Complications such as hypertension (1.23%), infections (0.61%), diabetes (0.24%) and seizures (0.13%) were rare. Normal delivery was the predominant mode of delivery (83.17%), followed by caesarean section (16.83%) and

majority of babies cried immediately after birth (97.38%). Preterm births were reported in 11.84% of respondents. The reported nutritional status of children showed that 96.26% were normal, 2.99% were underweight, and 0.75% were overweight (Table 7)

Table 8: Intellectual Disability among children and adolescents (aged 6-17 Years) in Uttarakhand, 2024-25 (N= 601)

Screened Positive n (%)

Screened Negative n (%)

Diagnosed Positive n (%)

p [95% C.I.]

Total N (%)

Locale

Rural

Boys

Total

58 (13.52)

40 (13.84)

69 (11.48)

371 (86.48)

249 (86.16)

532 (88.52)

4 (0.93)

3 (1.04) 6 (1.00)

32 [12,85]

37 [12,109] 56 [0,115.83]

429 (71.38)

289 (48.09) 601 (100)

Urban

11 (6.40)

161 (93.60)

2 (1.16)

24 [1.9,297]

172 (28.62)

Gender

Girls

29 (9.29)

283 (90.71)

3 (0.96)

19 [6,57]

312 (51.91)

Out of 601 children aged 6-17, 1% had intellectual disability. About 1.04% of boys and 0.96% of girls had ID. ID was more common in urban children (1.16%) compared to rural children (0.93%) (Table 8).

Table 9: Autism Spectrum Disorders among children (aged 16-30 months) in Uttarakhand, 2024-25 (N= 72)

Screened Positive n (%)

Screened Negative n (%)

Diagnosed Positive n (%)

Total N (%)

Locale

Rural

Boys Total

18 (39.13)

14 (41.18) 31 (43.06)

28 (60.87)

20 (58.82) 41 (56.94)

0 (0.00)

0 (0.00) 0 (0.00)

46 (63.89)

34 (47.22) 72 (100.00)

Urban

13 (50.00)

0 (0.00)

26 (36.11)

Gender

Girls

17 (44.74)

21 (55.26)

0 (0.00)

38 (52.78)

*N/n=Frequency; %- Percentage

Among 72 children aged 16-30 months, none were diagnosed with ASD. However, about nearly 43% were screened positive, indicating potential cases and opportunity of early evaluation (Table 9).

Table 10: Autism Spectrum Disorder among children and Adolescents (aged 4-17 Years) in Uttarakhand (2024-25) (N=737)

Screened Positive n (%)

Screened Negative n (%)

Diagnosed Positive n (%)

p [95% C.I.]

Total N (%)

Locale

Rural

Boys

Total

160 (30.95)

116 (32.40)

235 (31.89)

357 (67.35)

221 (67.60) 502 (68.11)

2 (0.39)

1 (0.28) 2 (0.27)

7.60 [3.3,19]

4.10

7.60 [3.3,19]

517 (70.15)

358 (48.58) 737 (100.00)

Urban

75 (34.09)

145 (65.91)

0 (0.00)

0.00

220 (29.85)

Gender

Girls

119 (31.40)

239 (68.60)

1 (0.26)

3.50

379 (51.42)

*N/n=Frequency; %- Percentage; p-Weighted prevalence per 10,000 children between 4-17 years

Among 737 children aged 4-17, overall, ~8 per 10000 children were diagnosed positive for ASD, which was predominantly among rural children (Table 10).

Table 11: Specific learning disabilities among children and adolescents (aged 8-17 Years) in Uttarakhand, 2024-25 (N= 508)

Screened Positive n (%)

Screened Negative n (%)

Diagnosed Positive n (%)

p [95% C.I.]

Total N (%)

Locale

Rural

Boys

Total

37 (10.03)

19 (8.05)

44 (8.66)

332 (89.97)

217 (91.95) 464 (91.34)

5 (1.36)

3 (1.27) 6 (1.18)

32 [12,87]

36 [2.7,444]

55 [0,155.709]

369 (72.64)

236 (46.46) 508 (100)

Urban

7 (5.04)

132 (94.96)

1 (0.72)

23 [0.97,518]

139 (27.36)

Gender

Girls

25 (9.19)

247 (90.81)

3 (1.10)

20 [6,66]

272 (53.54)

*N/n=Frequency; %- Percentage; p-Weighted prevalence per 10,000 children between 8-17 years

Among 508 children aged 8-17, 55 per 10000 children were diagnosed positive for Specific learning disabilities. More cases were reported from rural (32 per 10000 children) than urban area (23 per 10000 children) (Table 11).

Table 12: Attention Deficit and Hyperactivity disorder among children and Adolescents (aged 4-17 years) in Uttarakhand, 2024-25 (N= 695)

Screened Positive n (%)

Screened Negative n (%)

Diagnosed Positive n (%)

p [95% C.I.]

Total N (%)

Locale

Rural

Boys

Total

24 (4.90)

17 (5.04)

34 (4.89)

466 (95.10)

320 (94.95) 661 (95.11)

2 (0.41)

1 (0.30) 2 (0.29)

3.5 [1.5,8.4]

1.6 [0.21,13]

3.5 [0.48,6.58]

490 (70.50)

337 (48.48) 695 (100.00)

Urban

10 (4.88)

195 (95.12)

0 (0.00)

205 (29.49)

Gender

Girls

17 (4.75)

341 (95.25)

1 (0.28)

1.9 [0.081,44]

358 (51.51)

*N/n=Frequency; %- Percentage; p-Weighted prevalence per 10000 children between 4-17 years

Of 695 children aged 4-17, 4.89% of children showed signs of ADHD. 0.41% (n=2) children were diagnosed, both

from rural areas. Boys and girls had nearly equal diagnosis rates (Table 12).

CONDUCT DISORDER

No child was screened positive nor diagnosed positive for conduct disorder (n=353).

Among 353 children, no positives were screened or diagnosed, indicating an absence or extremely low prevalence of conduct disorder.

Table 13: Anxiety and Depression among children and adolescents (aged 8-17 Years) in Uttarakhand (2024-25) (N= 508) (RCADS-Parent)

Screened Positive n (%)

Screened Negative n (%)

Diagnosed Positive n (%)

p [95% C.I.]

Total N (%)

Locale

Rural

Boys

Total

63 (17.07)

37 (15.68) 82 (11.14)

306 (82.93)

199 (84.32) 426 (83.86)

0 (0.00) 0

0 (0.00) 0 0 (0.00) 0

369 (72.64)

236 (46.46) 508 (100.00)

Urban

19 (13.67)

120 (86.33)

0 (0.00)

139 (27.36)

Gender

Girls

45 (16.54)

227 (83.46)

0 (0.00)

272 (53.54)

*N/n=Frequency; %- Percentage; p-Weighted prevalence per 10000 children between 8-17 years

Among 508 children aged 8-17 years, 11.14% children showed signs of anxiety and depression, but diagnosis was nil. Girls had a slightly higher screening rate than boys (Table 13).

Table 14: Help-seeking behaviour among the participants of Uttarakhand child and adolescent survey, 2024-25 (N = 802)

For both general and mental/neurological illnesses, the majority of respondents sought care from government or municipal hospitals (66.21% and 65.83% respectively), while nearly one-third (32.04%) sought care at private hospitals, doctors, or clinics. Utilisation of NGO or trust hospitals was very low, accounting for less than 1%. Similarly, reliance on traditional healers, vaidya/ hakim/homoeopathy, or drug stores was minimal, each reported by less than 1% of respondents (Table 14).

Table 15: Knowledge/Awareness regarding Mental and Neurological Illnesses among the participants of Uttarakhand child and adolescent survey, 2024-25

Facility type

n (%)

General Illness

Government/municipal hospital

Private hospital/private doctor/clinic

Traditional healer

531 (66.21)

257 (32.04)

0 (0.00)

NGO/trust hospital/clinic

3 (0.37)

Drug store

11 (1.37)

Indicator / Response

n (%)

Heard about the mental andneurological illnesses (n = 815)*

Mental/Neurological Illness

Government/municipal hospital

Private hospital/private doctor/clinic

Traditional healer Others

528 (65.83)

5 (0.62)

257 (32.04)

6 (0.74) 1 (0.12)

Autism

Attention Deficit/ Hyperactivity Disorder

Conduct disorder Depression

Other mental illnesses like psychosis

186 (22.82) 44 (5.40)

60 (7.36) 637 (78.16) 100 (12.27)

Intellectual disability

99 (12.15)

NGO/trust hospital/clinic

Oppositional Defiant Disorder

48 (5.89)

Vaidya/hakim/homeopathy

3 (0.37)

Anxiety disorders

278 (34.11)

Tobacco, Alcohol and Drug Abuse

473 (58.04)

Drug store

2 (0.25)

Table 16: Knowledge / Awareness about welfare initiatives for children and adolescents with disability among screened positive participants in Uttarakhand survey, 2024-25

Have you ever heard/visited (YSPK)/Adolescent Clinics/ARSH/Kishori Clinics (n = 814)

Heard, not visited Neither heard nor visited

Yes

Government/municipal hospital

Private hospital/private doctor/clinic

Traditional healer

Yes

Mental health

4 (0.49) 810 (99.39)

19 (2.36)

16 (84.21) 1 (5.26)

2 (10.53)

6 (31.58)

7 (36.84)

Aware of UDID (n = 385)

Received any support for child’s disability (n = 385)

Aware of where disability assessments are done (n = 385)

Obtained disability certificate (n = 385)

Awareness about

National Trust Act, 1999

Mental Health Care Act, 2017

1 (0.26)

2 (0.52)

16 (4.16)

14 (3.64)

4 (1.04)

3 (0.78)

0 (0.0%)

Knowledge / Awareness about welfare initiatives

Yes n (%)

Visited

0 (0.00)

Ever visited a health facility or doctor of any kind to receive services or information on mental illness (n = 802)

Knowledge about the benefits of having UDID*

783 (97.63)

Last Visit (n = 19)

NGO/trust hospital/clinic

0 (0.00)

Vaidya/hakim/homeopathy

0 (0.00)

Posters of Mental Health in healthcare facility (n = 19)

Aware of any NGO working for your child’s cause (n = 385)

Undergone any assessment for disability (n = 385)

Rights of Persons with Disabilities (RPWD) Act, 2016

0 (0.0%)

13 (68.42)

Reason for visiting (n = 19)

Juvenile Justice Act, 2015

0 (0.0%)

Others

12 (63.16)

*Multiple responses possible. Missing values not shown

Depression was the most widely known mental health condition, with over three-fourths of respondents aware of it (78.16%), followed by substance abuse (58.04%) and anxiety disorders (34.11%). Awareness of other conditions, such as autism (22.82%), intellectual disability (12.15%), conduct disorder (7.36%), oppositional defiant disorder (5.89%), and ADHD (5.40%), was much lower. Almost all respondents (99.39%) had neither heard of nor visited youth-focused clinics like YSPK, ARSH, or Kishori Clinics. Very few (2.36%) had ever visited a health facility or doctor for mental health services or information, and among them, 31.58% reported seeing posters related to mental health. About 36.84% visited specifically for mental health concerns, while 63.16% did so for other reasons (Table 15).

*Enquiry on benefits was focused on benefits related to travel, admission to therapy centres/ special schools, health insurance, income tax benefits etc.

Awareness and utilization of disability-related schemes and services were found to be extremely low among respondents. Only 0.26% of respondents were aware of the Unique Disability ID (UDID), and none knew about its associated benefits. Support for children with disabilities was reported by just 0.52%, with only half of them receiving assistance from schools. Awareness of NGOs working in the area of disability was limited to 4.16%, while only 3.64% knew where disability assessments are conducted. Very few had undergone assessments (1.04%) or obtained a disability certificate (0.78%). Notably, none of the respondents were aware of key legislations such as the National Trust Act (1999), RPWD Act (2016), Mental Health Care Act (2017), or the Juvenile Justice Act (2015) (Table 16).

Table 17: Co-morbidities present in children and adolescents of all age groups in Uttarakhand (N=802)

additional disorder. Only 1.75% (n=14) of children had two co-existing conditions, with a weighted prevalence of 76 per 10,000 children, while 0.25% (n=2) had three or more concurrent conditions, with a weighted prevalence of 8.5 per 10,000 children (Table 17).

Table 18: Disorders present together in children and adolescents (N= 2)

Anxiety, depression 4 & SLD

Among the children screened positive, one of them had anxiety, depression and SLD and one had both ID and SLD (Table 18).

Comorbidity count

Frequency (n%)

No co-morbidities (0)

Presence of 3 or more conditions together (2)

786 (98.00) 9915

8.5

Presence of at least 2 conditions (1)

14 (1.75)

2 (0.25)

Disorders

Frequency (n%)

1 (0.12)

* n-Frequency, %-Percentage, P-Weighted prevalence per 10,000 children

The majority of children and adolescents in Uttarakhand were found to have no comorbidities. Out of the study population, 98% (n=786) did not present with any

Table 19: Prevalence of Autism, Intellectual Disability, and Common Psychiatric Disorders Among Children and Adolescents in Uttarakhand (2024–2025)

ID & SLD

1 (0.12)

Disorder Name

Intellectual Disability

Anxiety and Depression

Attention Deficit Hyper Activity Disorder

55.66

22.68

3.50

Age range of assessment (Mean age in years)

6 – 17 (11.54)

Diagnosed Positive

6 (0.998)

Weighted prevalence

0.56

Total population in the age group

2657179

Total children and adolescents living with the disorder/ problem

14789.59

Total children and adolescents living with the disorder/ problem per 10,000

601

Specific Learning Disability

8 – 17 (12.46)

508

6 (1.18)

0.55

2233956

12368.52

55.37

8 – 17 (12.46)

508

2 (0.39)

0.23

2233956

5067.06

Autism Spectrum Disorder

4 – 17 (10.58)

695

2 (0.29)

0.08

3071639

2445.02

7.96

4 – 17 (10.58)

695

2 (0.29)

0.04

3071639

1075.07

The prevalence of autism, intellectual disability and common psychiatric disorders among children and adolescents in Uttarakhand shows that Intellectual Disability was the most common, with approximately 56 per 10,000 children and adolescents living with ID. This is followed by Specific Learning Disability at 55 per 10,000. The prevalence of anxiety and depression was 23 per 10,000, ASD was 8 per 10,000, and ADHD was 4 per 10,000 children and adolescents. In terms of the total number of children and adolescents living in the state of Uttarakhand, it amounts to 14,790, 12,369, 5067, 2445 and 1076, respectively, for ID, SLD, anxiety and depression, ASD and ADHD (Table 19).

8. CONCLUSION

The analysis of the 2024–2025 data on the prevalence l of specific mental health problems and learning disabilities namely autism, intellectual disability and common psychiatric disorders among children and adolescents in Uttarakhand reveals a clear picture in

Attention Deficit Hyperactivity Disorder had the lowest prevalence among the studied conditions at 4 per 10,000 children and adolescents, affecting around 1,075 children and adolescents in Uttarakhand.

the distribution of these conditions.

l The child and adolescent interview survey had a response rate of 98.8% with 802 children and adolescents participating in the survey. Their mean age was 9.31 years (SD=4.81), with more girls (50.67%) compared to boys (49.33%).

l Among the 802 respondents, the majority were mothers (90.9%). Most mothers had normal nutrition during pregnancy (98.75%). Reported nutritional status of children showed that 96.26% were normal, 2.99% were underweight, and 0.75% were overweight.

l Intellectual Disability emerges as the most common l disorder among children and adolescents, with a weighted prevalence of 56 per 10,000 children and adolescents, translating to approximately 14,790 children affected across Uttarakhand.

l Closely following is Specific Learning Disability, with a weighted prevalence of 55 per 10,000 children and adolescents an estimated 12,369 children living with the condition in Uttarakhand.

l The near-equal prevalence to intellectual disability suggests that academic performance-related issues in children may be significantly under-recognized without early targeted screening, especially in school settings.

l Anxiety and Depression represent the third-largest group of conditions, with a weighted prevalence of 23 per 10,000 children and adolescents, affecting about 5,067 children in Uttarakhand.

l Autism Spectrum Disorder is present in 8 per 10,000 children and adolescents affecting an estimated 2,445 children and adolescents in Uttarakhand.

Overall findings of our study indicate that mainly Intellectual Disability and Specific Learning Disability contribute to developmental and mental health challenges among children and adolescents in Uttarakhand, collectively affecting over 27,000 children. Mental health concerns such as anxiety and depression contribute substantially to the overall burden, while autism and ADHD, though less common, represent important targets for specialized interventions.

l For both general and mental/neurological illnesses, most respondents report to seek care from government hospitals or municipal hospitals (66.21% and 65.83% respectively), while nearly one-third (32.04%) sought care at private hospitals, doctors, or clinics.

l Depression was the most widely known mental health condition, with over three-fourths of respondents aware of it (78.16%).

l Awareness and utilization of disability-related schemes and services were found to be extremely low. Only 0.26% of respondents were aware of the Unique Disability ID (UDID) and none knew about its associated benefits.

9. RECOMMENDATIONS

Based on the findings of the survey, the following are the recommendations for consideration by the State of Uttarakhand:

1. ID, SLD, ASD, ADHD, Depression and Anxiety disorders collectively contribute to approximately 35,746 children and adolescents in Uttarakhand. All these can be identified early and either prevented or supported to have minimal impact on the child/adolescent or their care givers. Integrating regular screening for autism, intellectual disability and common psychiatric disorders into existing programmes like RBSK (Rashtriya Bal Swasthya Karyakram), school mental health programs is needed. This will ensure early identification and appropriate support for children and adolescents.

2. Field level health workers like ASHAs, Anganwadi workers, community health officers etc and primary healthcare providers need to be sensitised and trained to recognize early signs of intellectual disability, learning difficulties, autism and psychiatric disorders in the community to enable early detection, prompt referral and management.

3. There is a need to roll-out community-based awareness campaigns on mental health issues, intellectual disability, autism, specific learning disabilities and common psychiatric disorders to improve understanding, reduce stigma, and encourage early help-seeking. These campaigns should focus on information related to early signs and symptoms of these disabilities/disorders with details of where to access free or low-cost treatment (District Mental Health Program, government hospitals, helplines). This is likely to be beneficial as most people in Uttarakhand utilise government health facilities as their preferred health care facility for both general and mental health issues. However, private health care facilities need not be ignored where free and/or low-cost treatment is available (Eg: NGOs, not-for-profit organisations etc).

4. There is a need to educate parents and caregivers about developmental milestones and learning difficulties, enabling early identification, timely

screening, diagnosis, and referral for children with ID or learning disabilities. Integrating such education during the antenatal and post-natal visits to clinics or during home visits looks feasible.

5. Utilising child immunisation visits for opportunistic screening of specific learning disability, autism, ADHD, intellectual disability, depression and anxiety facilitates early identification and appropriate management.

6. It is important to integrate mental health and developmental disability modules into school health programs to promote early detection, support provision and referral.

7. Programs like school mental health, RBSK, adolescent friendly health clinics, adolescent reproductive and sexual health clinics, District Early Intervention Centres (DEIC) need to be equipped for referral services, counselling services to support caregivers, formation of care giver support groups, skill-building programs and mapping of such support services to reduce caregiver burden and support families in managing children’s developmental and mental health needs.

8. Schools should foster child-friendly and inclusive environments with teachers trained/sensitized on identifying and screening children for disabilities and early referrals. It is also prudent to strategically have a pool of special educators for such children to provide need-based services for such children ensuring accessibility and reach.

9. Public institutions, non-government organisations, philanthropies can be roped in to facilitate peer- support groups, provide counseling and support services for children with learning disabilities ensuring access until the last mile. Engaging these organisations also ensures cultural and social adaptations required for such children and adolescents.

10. There is a strong need for an effective IEC campaigning related to disabilities and psychiatric disorders among children and adolescents given the finding that the respondents were largely

unaware about these disorders as well as welfare schemes related to the same ensuring visibility and penetration of information in both urban and rural settings. In addition to the disorders/disabilities these IEC campaigns need to focus on creating awareness about disability-related schemes and services should be promoted as a large-scale campaign, given the current lack of information among families and communities. These campaigns should proactively disseminate information on the Unique Disability ID (UDID) cards, its benefits, the application process along with the official portal: https://swavlambancard.gov.in. Families and caregivers should be guided step by step to ensure eligible children access available entitlements.

STRENGTHS AND LIMITATIONS

l This first-ever community-based child and adolescent survey on ID, SLD, ASD, ADHD, and psychiatric disorders in the country was conducted, ensuring geo-cultural representation of the state of Uttarakhand. The results of this survey are generalizable to the children and adolescent population of Uttarakhand.

l Unlike other mental health surveys, this survey ensured diagnosis of screened positive individuals, thereby providing prevalence estimates based on accurate specialist diagnosis.

l This survey also utilised reliable and validated instruments for the assessment of respondents. These instruments were available in the local language, and data collection for the survey was conducted by trained data collectors from within the community, ensuring uniform and standardised data collection

l Regular monitoring mechanisms by experts in the field and remote monitoring through effective data management have ensured reliability of the data collected.

l Employing personal and tele-consultation for final diagnosis ensured maximum possible response rate within a short time frame, which is a strength of this survey. However, this had some limitations in terms of internet connectivity in some remote areas. The specialists were able to adapt to such situations and conduct need-based multiple sessions, ensuring completeness of assessments.

l The Weighted estimates of prevalence in this survey is based on 2011 Census data. This may need correction once the new census estimates are available.

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Address for Correspondence

Dr Pradeep B S, MD (KIMS), M.Sc., (Epi) (UK), MPH, (Epi & Global Health) (USA) Deputy Medical Superintendent and Professor and Former Head,