In Nepal, Autism Spectrum Disorder (ASD) remains a lesser-known fact. According to the WHO, Autism Spectrum Disorder (ASD) constitutes a diverse group of conditions related to development of the brain. ASD is characterized by some degree of difficulty with social interaction & communication. Many regard autism as a mental illness or a disease or even something akin to craziness, overshadowing what it really is. Although a diagnosis can be made at any age, autism is classified as a developmental condition as most of the symptoms usually manifest in the first two years of life. To promote inclusivity and support for people with autism and their families in Nepal, it is imperative that knowledge and understanding of autism be raised.
It is estimated that worldwide, 1 in 100 children has autism. The latest data as of 2023 from the Centers for Disease Control and Prevention (CDC) shows that 1 in 36 children is diagnosed with autism – which shows a 178% growth since 2000. In Nepal, the 2021 census reported approximately 4,800 individuals with autism based on a partial sample of the population surveyed. Autism Care Nepal Society (ACNS) in Lalitpur itself has diagnosed over 1600 patients. A reliable set of data is not available, however, ACNS estimates that there are about 300,000 individuals living with autism in Nepal.
“Autism awareness has slowly but gradually changed over the past ten years; what was once a lack of awareness is now minimal understanding, which means that while many people are increasingly familiar with the term, many still do not completely grasp it, and it remains unknown in many remote areas of Nepal,” shares Surendra Bajracharya, Chief Administrator and Project Manager at ACNS. Having been active in the field since 2013, he further expresses how it has taken nearly ten years filled with challenges to bring autism knowledge to light in Nepal and to categorize it as a separate entity, rather than having it be merged with various misconceptions that exist among the people in our society.
Many associate autism primarily with delayed speech, and while it is a typical symptom, its complexities go beyond. Some parents believe that once their child starts speaking, the condition will go away. This misconception leads them to seek cures through religious rituals and temple visits, unaware that autism requires support and integration into daily life. Financial constraints heighten the situation, pushing some parents to extreme measures, including bankruptcy, in futile attempts to ‘recover’ their child. These struggles, highlighted by Bajracharya, have even led to tragic cases like parental suicides and violations of human rights. Additionally, fear of societal rejection prompts some parents to resort to isolating behaviors, such as restraining or ignoring their children, and in extreme cases, even resorting to physical punishment, further hindering acceptance and support.
However, it is essential for parents not only to acknowledge but also to comprehend the condition and guide their child’s journey accordingly. When inquired about common symptoms indicating a possible presence of autism in children, Bajracharya, who has observed autism diagnosed as early as 18 months, suggests considering three pivotal questions: Why does my child not speak? Why does my child not respond when called? Why does my child avoid playing with others? While these questions may not solely determine autism, as it is a vague condition, seeking professional medical guidance would be beneficial rather than adhering to common misconceptions and/or disregarding it.
Moreover, societal acceptance of individuals with autism is equally crucial. Misconceptions about autism being contagious instigate misguided fears among some, leading to discrimination. Such misunderstandings have prompted instances where parents refuse to accept children with autism in educational settings, perpetuating the cycle of exclusion and marginalization. Furthermore, false ideas that put the blame of a child’s autism on their mother also contribute to societal misconceptions and heighten the stigma associated with autism. Bajracharya further shares his experience in the field, where once on an awareness campaign in the Sudurpaschim province, he saw an unfamiliar case of a 46-year old male with autism. Due to insufficient knowledge and awareness, this individual had unknowingly navigated through life without appropriate support to manage his autism. This case likely mirrors numerous instances across Nepal, where limited awareness and resources result in individuals with autism living without sufficient support or understanding of their condition.
In addition, education remains another foundation for a child’s development. But what efforts can be made to promote inclusion and support in schools? A significant change is required to adequately incorporate autism within Nepal’s educational system. Bajracharya emphasizes that education specialists need to understand the difference between true inclusion and the existing state of integration in schools. The system must change to a need-based strategy that gives priority to individual needs. It would be extremely beneficial to learn from global models that place a high priority on inclusive education. Currently, the emphasis on performance-driven success and high stakes exams in Nepal’s educational system presents difficulties for children with autism. The rigid nature of assessments inhibits their ability to showcase their talents fully, potentially stifling their capabilities. Rather than focusing on prestige and ranking, school staff should make a team effort in order to create a friendly environment for children with autism by providing proper intervention, monitoring system, and evaluation.
Additionally, the challenges surrounding autism extend to healthcare systems and governmental attention. Doctors’ limited understanding often results in cases of misdiagnosis, contributing to inadequate support for individuals on the spectrum and their families. Even within medical academia, there is a noticeable lack of emphasis on autism-related studies, leaving medical professors ill-equipped to address these concerns. Regrettably, the insufficient attention from government bodies further perpetuates the narrative of autism as an unwanted matter, hindering the necessary societal changes and support systems needed for individuals with autism to thrive. Although recognized in parts of the constitution, ie The Act Relating to Rights of Persons with Disabilities, it has yet to be implemented in real life scenarios where individuals with autism are not met with discrimination.