Autism in Nepal: Prevalence, Etiology, and Management

Autism, also referred to as Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder that unfolds in the early stages of childhood, persistently impacting individuals throughout their lives. Its hallmark features include challenges in social interaction, communication difficulties, and repetitive behaviors. Study on Autism in Nepal is still in its infancy but with increasing interest of scholars, more and more research is being planned and published which will help clarify the scenario in coming future.

Autism is referred to as Autism Spectrum Disorder (ASD) because of the substantial differences in the skills, abilities, and needs of individuals suffering from it. ASD, a paradigmatic neurodevelopmental disorder, manifests in a spectrum of presentations. From individuals with exceptional talents in specific areas to those facing significant communication and social challenges, the diversity within the ASD spectrum is vast. Some cannot speak and some speak fluently, some have severe disabilities and require lifelong care while others can live a fairly independent life. Moreover, ASDs are neurodevelopmental disorders and are a life-long condition. There are very little studies conducted in Nepal on Autism in Nepal, many of its important variables are still to be determined.

Autism is diagnosed based on the DSM criteria ASD

Prevalence of Autism:
The prevalence of autism has undergone a remarkable escalation, challenging earlier perceptions of its rarity. Contemporary estimates propose a prevalence of approximately 1 in 54 children in the United States (Jones & Brown, 2017). However, global prevalence varies, and in Nepal, where data collection remains a challenge, more studies are required to estimate prevalences. Governmental and Non Governmental organizations as well as Universities and institutions should sponsor research work on Autism in Nepal which can shed light to different factors on causes, risk factors and prevalence can be known.

The worldwide prevalence of Autism is around 1%. Autism is more prevalent in males with an average male-to-female ratio of 4.3:1

However, in some recent studies that are based on revised diagnostic procedures, the prevalence is found to be increasing. Center for Disease Control (CDC) reports about 1 in 36 children in the US (4% of boys, 1% of girls) as diagnosed with Autism Spectrum Disorder (ASD)¹. Thus boys are four times more likely to suffer from ASD than girls. ASD is found to occur with the same prevalence in all racial, ethnic, and socioeconomic groups.

One research in 2022 reviewed 74 studies with 30,212,757 participants and the prevalence of ASD in the world was found to be 0.6% (95% confidence interval: 0.4-1%). Subgroup analyses indicated that the prevalence of ASD in Asia, America, Europe, Africa, and Australia was 0.4% (95% CI: 0.1-1), 1% (95% CI: 0.8-1.1), 0.5% (95% CI: 0.2-1), 1% (95% CI: 0.3-3.1), 1.7% (95% CI: 0.5-6.1) respectively².

One study found that the prevalence of ASD was 7% among children who were born preterm³.

Thus studies present a different rate of prevalence depending on the tools used and the methodology followed.

Autism in Nepal
One study estimated a prevalence rate of 3 in 1000 in a sample of 4098 rural Nepali Children⁴.

According to Autism Care Nepal Society and Ministry of Education, there are around 300,000 individuals in Nepal currently living with ASD⁵.

Another study highlights the issue of delayed help-seeking behavior of parents. The mean age of children at which age the help was sought from medical centers and a diagnosis of Autism was reached was 55.6 months. The most common reason was delayed verbal / language development. The time length between help-seeking to diagnosis was 29.4 months with the longest time lag of 13 years. The reason stipulated was a lack of awareness⁶.

While comprehensive data on autism in Nepal is limited, preliminary studies suggest a growing recognition of the condition within the country. Challenges such as limited awareness, stigmatization, and insufficient diagnostic resources contribute to underreporting. Organizations and professionals in Nepal are working collaboratively to enhance awareness, diagnosis, and support systems for individuals with autism and their families. Cultural factors also play a role, in influencing perceptions and responses to autism within the Nepalese community.

Most of all there is a dire need for research into this area.

Cause of ASD
The exact cause of ASD is not known. Autism, however, is highly heritable and genetic. However, the age of parents and other environmental factors also play a vital role.

Children with ASD have other co-morbidities such as Attention Deficit Hyperactivity Disorder (ADHD), Epilepsy, and Intellectual Disability.

Signs to Watch for During Early Childhood:
Identifying signs of autism during early childhood is crucial for timely intervention. Early indicators may include challenges in social engagement, being more interested in objects than people, delayed or absent speech development (occurring in around 40% of children with ASD), repetitive behaviors, and intense focus on specific objects or topics. A lack of response to their name or reduced interest in others may also be observed. Recognizing these signs early on enables caregivers and professionals to initiate appropriate interventions, fostering better outcomes for individuals with autism.

The common signs of Autism Spectrum Disorder (ASD)

• Not responding to their name
• Not smiling when you smile at them
• Little or inconsistent eye contact
• More interested in objects than people
• Highly reactive or unusual reactions to how things sound, smell, taste, look, or feel
• Not showing interest in indicated objects or people
• Having difficulty in sustaining two-way communication
• Lack of desire to play reciprocal games (e.g. peek-a-boo)
• Flapping hand, rocking body, or spinning self in circles
• Delayed language skills (e.g. having delayed verbal milestones and having a smaller vocabulary than peers or difficulty expressing themselves in words)
• Repetitive motions or movements, including stimming
• Delay in motor and social milestones
• Delayed learning or cognitive development
• Highly reactive or unusual reactions to how things sound, smell, taste, look, or feel
• Resistance to changes in routine
• Repetitive, limited, or otherwise unusual usage of toys (e.g. lining up toys)
• Persistent pointing to show something interesting rather than telling it verbally
• Little interest in the emotions of others

The symptoms generally appear in the first 2 years of life. The first 2 years of life in any child is then crucial and parents must be sensitive to the features of ASD.

The American Academy of Pediatrics recommends that all children be screened for ASDs at their 9, 18 and 24 or 30 months.

Key developmental milestones, such as language acquisition, social interaction, and motor skills are very important markers of healthy brain development. All parents should be able to identify and assess if they have been attained within the right framework of development.

Etiological Factors:

Biological Etiology and Genetic Effects:
Genetic factors play a decisive role in the etiology of autism, with recent advances in molecular genetics pinpointing specific genes associated with an increased risk of ASD. The heritability of autism has been a central focus, with studies indicating a robust genetic component in the development of the disorder. Unraveling the intricate interplay between genes and environmental factors is paramount for comprehending the biological underpinnings of autism.

Environmental Etiology:
Environmental factors during pregnancy have been a pivotal focus of research in understanding the etiology of autism. Anderson et al. (2015) investigated the impact of prenatal exposure to certain chemicals, such as pesticides, on the risk of autism. Their findings underscore the imperative need for increased awareness of environmental influences and their potential role in shaping neurodevelopment, contributing to a more comprehensive understanding of autism spectrum disorder.

Types of ASD:
Autism spectrum disorder encompasses a spectrum of conditions, each characterized by unique features. Classic Autism is typified by substantial challenges in social interaction, communication difficulties, and the presence of repetitive behaviors. In contrast, Asperger syndrome often manifests with milder social difficulties and a heightened focus on specific topics. Pervasive developmental disorder-not otherwise specified (PDD-NOS) serves as a category for individuals exhibiting significant impairments in social functioning without fully meeting the criteria for Autism or Asperger syndrome. Recognizing these subtypes contributes to a more nuanced and individualized approach to diagnosis and intervention strategies.

Adulthood Manifestation of Autism:
While much attention is often focused on early childhood, understanding how autism manifests in adulthood is equally crucial. Individuals with autism may continue to face challenges in social situations, employment, and independent living. However, many develop coping mechanisms and strengths that contribute to a fulfilling life. Adult manifestations may include difficulties in forming and maintaining relationships, challenges with executive functioning, and sensory sensitivities. Comprehensive support and tailored interventions are essential to address the evolving needs of individuals with autism as they transition into adulthood.

Management of Autism:
Effectively managing autism necessitates a holistic and personalized approach, integrating a plethora of therapeutic interventions and educational strategies. Early intervention programs, such as the Early Start Denver Model (Dawson et al., 2018), have demonstrated promise in mitigating the impact of autism symptoms, particularly in enhancing social and communicative skills. Behavioral therapies, including applied behavior analysis (ABA), play a pivotal role in shaping adaptive behaviors and improving the overall quality of life for individuals with ASD.

The journey through neurodevelopmental disorders thus is one of complexity, diversity, and resilience. By embracing the unique qualities of individuals affected by ASD we pave the way for a more inclusive and compassionate society. Understanding, acceptance, and early intervention are key components in unlocking the potential of every individual on their neurodevelopmental journey.

In conclusion, autism stands as a complex and heterogeneous condition influenced by a confluence of genetic, environmental, and psychosocial factors. A holistic understanding of these factors, coupled with an awareness of the diverse types of ASD, is paramount for developing targeted interventions and support systems for individuals with autism and their families.

Read more:

Autism Spectrum Disorder | Psychology Nepal

Differences among Rett’s Syndrome, Tourette’s Syndrome, Autism and Down’s Syndrome: An Overview/

Understanding Rett Syndrome: A Rare Neurodevelopmental Disorder

DSM criteria for Autism Spectrum Disorder

References:

1. CDC (2020-03-27). “Data and Statistics on Autism Spectrum Disorder | CDC”. Centers for Disease Control and Prevention. Retrieved 2023-12-19
2. Salari N, Rasoulpoor S, Rasoulpoor S, Shohaimi S, Jafarpour S, Abdoli N, Khaledi-Paveh B, Mohammadi M. The global prevalence of autism spectrum disorder: a comprehensive systematic review and meta-analysis. Ital J Pediatr. 2022 Jul 8;48(1):112. doi: 10.1186/s13052-022-01310-w. PMID: 35804408; PMCID: PMC9270782.
3. Agrawal S, Rao SC, Bulsara MK, Patole SK. Prevalence of Autism Spectrum Disorder in Preterm Infants: A Meta-analysis. Pediatrics. 2018 Sep;142(3):e20180134. doi: 10.1542/peds.2018-0134. Epub 2018 Aug 3. PMID: 30076190.
4. Heys M, Gibbons F, Haworth E, Medeiros E, Tumbahangphe KM, Wickenden M, Shrestha M, Costello A, Manandhar D, Pellicano E. The Estimated Prevalence of Autism in School-Aged Children Living in Rural Nepal Using a Population-Based Screening Tool. J Autism Dev Disord. 2018 Oct;48(10):3483-3498. doi: 10.1007/s10803-018-3610-1. PMID: 29855757; PMCID: PMC6153945.
5. Children with autism face a long, hard road to acceptance [Internet]. [cited 2024 Aug 28]. Available from: https://kathmandupost.com/health/2019/07/30/children-with-autism-face-a-long-hard-road-to-acceptance
6. Shrestha M, Shrestha R. Symptom recognition to diagnosis of autism in Nepal. J Autism Dev Disord. 2014 Jun;44(6):1483-5. doi: 10.1007/s10803-013-2005-6. PMID: 24293038.