The arrival of a child brings a wave of happiness for every parent. The arrival of the first child is especially important. The deep joy that comes with the happiness of a child, the joy of holding him in your arms, and the joy that his smile brings are unforgettable for a lifetime.

Within two years of the birth of my first child, there were some signs that made him different from other children. Constant anger, communication barriers, and delayed speech, among other behaviors, started to raise some doubts in our minds. We also started to fear that something had happened to him.

The Covid era had begun, and due to the lockdown, we had to stay at home, and on top of that, he gradually started showing some behaviors that seemed strange to ordinary children. We also found his behavior strange, such as his body moving around, his ability to move around no matter what he was given, and his special interest in moving things, his ability to line up his toys, his ability to play in strange ways, his constant sleep disturbance, his ability to walk on his toes, and his need to feed himself only by squeezing his jaw when sitting down to eat. His habit of banging his head against the wall made us very suspicious. Meanwhile, society kept telling us its stories, and most people felt that these behaviors would gradually change. This provided some relief to the aching mind.

He did not know that he had autism. He only ate milk. When he was hospitalized for seven days due to food poisoning, he was not allowed to eat milk as per the doctor's advice. As a result, he had to be treated by giving him constant vomiting medicine.

Regression (forgetting learned skills) is an important one among the many symptoms of autism. The first word he uttered while pointing to a crow was ‘taat’. But as he grew older, that word disappeared. Such innocent words were replaced by regular and constant anger. By now, we had suspected that he might have autism or ‘ADHD’. And, the doctor pointed out this problem while diagnosing him.

It is very difficult to explain everything we have experienced since that day in detail. We tried to manage our lives and work while hiding the reality from the rest of the world. But, it was definitely not easy.

We had to take turns eating. We had to drive 3-4 times in the same place in the car for at least 40-50 minutes so that our son could sleep during the day and get the rest he needed. After he fell asleep while rolling around, we would get back to work. After midnight, he would scream again. Sometimes we would cry with him, sometimes alone.

Regression (forgetting learned skills) is an important symptom of autism. The first word he uttered, pointing to a crow, was ‘taat’. But as he got older, that word disappeared. Such innocent words were replaced by regular and constant tantrums. Eventually, he started speaking words again and things improved somewhat. However, challenging behaviors remained. In fact, as his understanding of the world grew, some of our behaviors, such as tantrums, excessive anger, and head banging, intensified. This led to painful and sleepless nights.

Not having the answer to his child's desire to wake up at 2 am and bring the sun, not being able to explain that he had to walk home because the road was being repaired, and his subsequent frustration, which made him unable to control himself and repeating such days and nights for 2-4 days, was extremely difficult . 

We called a small group of relatives and friends on his birthday and told them about autism and our son's condition . At least we told our friends and relatives the reality that our life as parents was not easy . After that, my heart became lighter, and the fear of what others would say also disappeared a little .

We had to take a lot of care of our son . There were many behavioral challenges such as not eating everything, not being able to go anywhere, having to take him to the zoo every day, and on top of that, my wife decided to quit her job so that she could attend therapy sessions anytime, anywhere . We even moved four times to be closer to his school or therapy center.

Today, our son's condition has improved a lot. People have started praising our hard work and his improvement. This gives a little satisfaction. However, such satisfaction cannot dull the challenges that lie ahead.

Looking at the data of neighboring and high-resource countries, about 1 in 6 newborns is recorded to have developmental delays. However, not all developmental delays are autism. The rate of autism is found in the United States at 1 in 32. Even in India, it is said to be 1 to 1.4 percent. If we take the birth rate given by the census as a basis, an estimated 14-15 thousand people in the 25-year-old age group in the Kathmandu Valley alone may have autism. But every autism center in Nepal has a long waiting list. There is also an acute shortage of qualified therapists.

Many autism centers sing this song and it is this belief that keeps the hope within us alive – ‘We will overcome, we will overcome, O deep in my heart, I do believe, we will overcome – some day.’

Autism is a very different kind of developmental disorder. It is hidden, but it comes to light from time to time. It is unknown. But sometimes it becomes serious. After playing with autism for a few years, I also left mine. And opened organizations working in the field of autism.

In the past 16 years, Nepal has achieved some important milestones in terms of autism. These include the formation of leading organizations like ACNS, SSDRC, the government officially classifying autism as a disability, the establishment of the first ministerial-level task force to prepare national guidelines on autism, and the beginning of preliminary work with special interest at the municipal level. But this alone is not enough. We must get rid of the mentality that ‘something is better than nothing’. I strongly expect this government to include it in its party manifesto and fulfill the commitments it has made regarding autism. Since parents of children with autism are also represented in parliament, I would like a special discussion on this.

There are some aspects that parents should pay attention to. The most important treatment they can give their child is time. Along with continuous therapy, ways of improvement outside of this should also be found. Therapy is necessary, but the available capacities are inadequate. For example, in the US, ABA therapy can cost up to $7,000 per day, making it nearly impossible to access without proper insurance or social security. We have seen parents go through various stages of acceptance. We have seen some parents move beyond the initial self-blame and reach a state of genuine happiness and even a small smile from their child.