Imagine living your life wearing earphones with the volume set to maximum, or being tetchy every time you try to walk on grass or do basic activities, and even worse considered apathetic & cold-hearted simply because of not being able to express your emotions as easily as others and ultimately getting exhausted trying to navigate in a world that doesn’t seem like yours. This is how challenging and perhaps even much more difficult than this, is what an autistic person has to experience; a much different view of life than most of us.
While every individual’s experience with autism is unique and distinctive, Autism Spectrum Disorders are characterized by impairments in social interaction and communication skills, and obsessive and repetitive patterns of behaviors, interests, and activities. Autism is a neurodevelopmental disorder referring to a broad range of symptoms that usually manifests in the early stage of development, resulting in hampered personal, social, and academic abilities.
On one end of the spectrum are high-functioning kids with an extraordinarily high IQ, and on the far end of it, we find kids with severe learning disabilities, who are unable to function by themselves in daily life. Their neurodivergent brain, which finds it difficult to maintain & understand social relationships, is highly sensitive and amplifies every single stimulus. While they might be eager to build connections, their heightened sensitivity & inability to grasp basic human emotions makes normal social settings overwhelming for them leading to other mental conditions like anxiety and depression.
The West, as always, has been a step ahead in diagnosing and working on the disorder, unlike our Indian subcontinent where the majority of people don’t even know such a condition exists. But ignorance doesn’t magically erase the fact that the prevalence and incidence rate of Autism in India is as high as in any other country, yet not even half of it gets diagnosed. Several studies have shown that about 1 in 100 children are autistic in India, a whopping 18 million people.¹ What’s more heart-wrenching is the statistics of suicide inclinations among Autistic people; they have more than three-fold higher rates of suicide than the general population. The alarming fact that about 1 in 10 of them have attempted self-harm [²], reveals the misanthropic and hostile environment we have created for people who are simply a little different than us.
The stereotype begins from the misunderstood cause of autism, wherein parents blame themselves for the obstructed growth of kids, often trying to ‘fix them’ by simply talking them out of it. But this serious developmental disability has no single known cause, however, several studies have shown that it is a combination of developmental, genetic, and environmental factors. Researches suggest various genetic mutations as well as complications during birth could be responsible for ASD. Genetics plays a central role in the causation, for example, a certain fragile X syndrome or tuberous sclerosis could increase the risk of having autism. Recent findings have also proven that pollutants like mercury and other harmful chemicals could also be one of the causes.
Contrary to popular belief, autism isn’t a disease, but rather a lifelong neurodevelopmental condition, which cannot be cured but rather maintained and worked on. As grave as it may sound, no cure exists for this disorder, but the treatment is focused on maximizing the children’s ability to function by reducing the symptoms. Autism isn’t just undiagnosed but also a highly misdiagnosed disorder, which is why timely intervention is the key to reducing chronic disability. Support in the development and learning during the early intervention can improve behavioral, social, communication, and functional skills.
While the world is working on making life easier for autistic individuals, our benighted Indian citizens still remain unaware of scientific knowledge regarding basic mental health conditions, and even if they do, it’s mostly gathered from stereotypical portrayal by the media and hence the same is the case with Autism. The media likes to show extremes in order to make it to the top and therefore usually portray only a certain type of autistic individual, usually, a different-looking protagonist who’s highly irritable, chaotic, and quirky, finally ‘fixing’ themselves and becoming an inspiration. But in real life autistic people could just be as normal looking as everyone and may not always have an extraordinary skill or talent to prove their existence matters in the world of ‘normal’ people.
In the Indian context, the stereotypes are much more severe, where even the parents remain in denial, afraid to give their child a diagnostic title, often stating ‘nothing is wrong’ with their beloved kids. But the general public is great pseudo-psychologists and can very effortlessly diagnose them as crazy, psycho, or even possessed. Such an outlook is extremely common in rural areas, where autistic people are considered a disgrace and often subjected to public bullying and harassment. But the grass gets a little greener since awareness in the field of mental health has led to more recognition and various governmental and non-governmental organizations have come up to support these beautiful atypical individuals. The government has laid concessions in tax and other areas for autistic people alongside setting up schemes and a national trust for the welfare of persons with Autism and other disabilities.
One of India’s most important initiatives has been the establishment of autism centers and clinics that give specialized treatment to people with autism. These centers provide a variety of services, including diagnosis, therapy, and family support. Nevertheless, these services are frequently concentrated in urban areas and are inaccessible to families living in rural or remote places.
The ice broke when golfer Ranveer Saini made it to the headlines by winning a Gold in Special Olympics. And since then, the sun has finally begun rising for kids with special needs. The website developer and entrepreneur Prem Sankar and various such individuals have made it to the success ladder, radiating inspiration to a million such children. Various NGOs have done extraordinary work in empowering people with Autism.
In the same spirit and effort in highlighting this matter, the UN has declared 2nd April as World Autism Awareness Day. The goal isn’t to cure them or change them but to simply give them the necessary tools and skills to lead a much better, easier, and normal life.
Improving access to diagnosis and treatment for people with autism, particularly in rural and distant regions, is a vital step. This can involve more healthcare professionals being trained to diagnose autism, as well as additional resources and support for families.
Education and awareness-raising campaigns are important tools for promoting the inclusion and acceptance of people with autism. This can include autism awareness and support training for healthcare professionals, teachers, and parents. Public awareness initiatives that challenge stereotypes and promote positive attitudes toward people with autism can also be included.
World Autism Awareness Day is an important opportunity to raise autism awareness and encourage the inclusion and acceptance of people with autism in society. There is still a long way to go in India to guarantee that people with autism have access to the resources and care they require to fulfill their full potential. However, there are many initiatives underway that are working to improve awareness. In the words of an autistic person, “We do not want sympathies or handouts, we just want to feel included and valued in society.”
A Postgraduate student of Psychology, Bushra is a literature enthusiast who finds solace in reading & quilting words. She has translated a number of articles from Urdu to English & vice-versa for national magazines. She also volunteers as a task force member in ISIP-India (Int’l Students of Islamic Psychology). She’s currently looking to work & develop in areas of Islamic philosophy, Psychology & Politics. You can reach out to her at [email protected].
Commendable work ✨❤️