It is one of those memories that will haunt me until I am nothing but ashes. I remember the day vividly, as if it were yesterday. I stand in the living room in my white kurthi with an earring in my hand and the other one dangling from my left ear. The dusk is near as the sun rays leave shadowy patterns on the white rug, turning it slightly red.
Abruptly, I hear my mother yell, “He is nowhere to be found; Kastup is lost.” I feel numb. I know I should go comfort her but I could not move my feet. The world stops for a while and leaves me gasping for air. I go and hold her tightly, her tears wetting my curls. I cannot process anything with all the racket and noise. I finally feel something, a warm yet wet sensation on my cheeks. And it didn’t stop the whole night.
We always knew that Kastup was “quirky” — that something isn’t quite adding up.
When Kastup was a toddler, he never actually communicated, he liked staying aloof. Even by the time he was two years old, he showed no interest in communicating, and never called for “Mama” or “Dada.” He used to sit on the corner trying his best to flutter the bits of torn up newspapers. He did like crayons, but all he did was scribble all over the paper. He usually stayed calm but when we changed our routine even by the tiniest manner, he was outraged. Sadly, since he didn’t know how to use words to express his feelings, he shouted. Looking at his arrogant nature, we presumed that we pampered him a bit too much. His side of the story was never understood.
Nine years ago, finally, our family had an answer. Kastup was diagnosed with Autism.
On 21st April 2014, Kastup was not home. He wandered off home and couldn’t make his way back.
We spent the evening visiting police stations and local radio stations pleading with them to broadcast the notice that he’d gone missing. Calls flooded our phones; I picked up every one with a glimpse of hope of news about him, which faded away as soon as I heard a voice on the other end saying, “Don’t worry. He will be fine. We understand what you are going through.”
He was not fine. He is scared of the dark. I imagined him bundled up in a cold dark place over a thousand times. Others would not understand what we were going through. That is the day I realized that Nepal just doesn’t have services that could help differently able kids like Kastup. If only there were Autism-friendly services, my brother wouldn’t have gone missing the whole night.
“We found Kastup”, my dad says, over the phone. A pedestrian had found him on the road, crying and reported it to one of the police stations. When I caught a glimpse of him, I was relieved but angry. Not angry at him — but at the fact that we were so helpless.
Those 14 hours without him were the darkest hours of my life. And it changed me.
Fast forward three months, I am here in Seattle. It is different from home. While most notice the differences in food and air, I notice the differences in services people are provided. Specifically, the ones given to individuals on the Autism spectrum.
According to the research by American Psychological Association (APA), early diagnosis and intervention services can help kids move out of the Autism spectrum or at the least improve. Laura Schreibman, PhD emphasizes “Delaying a diagnosis can mean giving up the significant gains of intervention that have been demonstrated before age 6. Early intervention can even prevent regression of communication and social skills in some cases”.
Supriya Tamang, who is currently pursuing her undergrads at St. John’s College, Santa Fe, has an autistic sister back in Nepal. “After coming to the States, I could easily observe the stark inconsistencies in the situation of autistic kids in Nepal from here. There are so many institutions specializing in various facets offering services in form of training, treatments, financial aid and interventions to make autistic kids as qualified as the rest. Sometimes I wonder how easy it would have been for my family, especially my sister, if we would have been born here. But it is not only about her. What would the rest of the kids do?”
“Even though the organizations like Autism Care Nepal (ACN) and the Government have been doing a great deal of work, it almost seems impossible to bridge the gap that is seen between these countries. Even if we had 25 percent of the privileges provided here, the situation would be so much better.”, says Tamang.
Arzu Forough, a mother of an autistic child from Kirkland who founded Washington Autism Alliance and Advocacy, wrote on the blog of WAAA “A child should be able to be evaluated, be assessed, get a treatment plan and for that treatment to be covered by insurance without this unending hoop that families and providers have to jump through.” If her statement would come true, more underprivileged families could get a better shot at treatments which will undoubtedly improve the situations of families and individuals with Autism.
In well off nations, various institutions are found catering to autistic kids, in the form of rehabilitation, education, insurance, training, interventions and even allowance. People aren’t privileged with such services back home and have to fly off across borders to get them.
The flashback to three months ago hits me again. If only he was trained enough, he wouldn’t have been lost. He could have found a way back home! And we wouldn’t have had to feel the way we felt. If only we had the services, Kastup could have been diagnosed early on and could have a chance at an early intervention. He could have experienced improvements which could have landed him a seat in one of the ‘normal’ schools.
If only had we gotten such services, our family would not have had to go through the devastation.
But the reality revolves around ‘can’; not ‘could’. This is why I have been doing what I can. Be it telling my closest of friends to not use the word ‘retarded’ or advocating for Kastup or others like him. I feel responsible, not only for him but all the others. I almost feel like a defender in a soccer game, preventing my team from getting hit by goals; protecting them from the unfairness in the world.
However, there is still hope.
“A barren land has a capacity to produce more yield. Lack of opportunities means that you have a greater chance of creating your own. Nepal might experience the same thing,” says Tamang.
When I visited the Bill and Melinda Gates Foundation, one of its walls said “What will your dream organization do?” and a girl had written. “My organization would strive for an autism friendly world.” Hopefully, a day will come when wishes take shape of reality.