Opinion

Searched for, but too late

A father in the US who once lost his autistic son for two minutes asks why a ten-day search for Saket Jha came too late.

By Gyanendra Joshi

Saket Jha, 7, of Devdiha, Dhanusha. Photo from a missing-child appeal shared on social media during the search.

Saket Jha was seven. On Dashain Tika day, when every Nepali family is meant to be together, he walked out of his home in Devdiha, Dhanusha. For ten days his family, neighbours and the police combed villages, ponds and bushes, and followed leads as far as Bihar. On Saturday he was found dead in a paddy field five kilometres from his house. The missing-child poster that circulated before the news carried one line that stopped me cold: 'Unable to communicate properly.' Saket was autistic. So is my son. I read that line and did not see a stranger's child. I saw mine. I had to put the phone down. Two minutes Every parent of an autistic child carries a particular fear. Many of our children wander. They slip through a door or a gate in seconds. Some do not respond to their own name. Some cannot tell a stranger where they live. Some hide when frightened instead of running towards the voices calling for them. I know that fear first-hand. One day my son sneaked out of our house. He was out of my sight for only a couple of minutes. When I spotted him, he was heading towards our neighbour's backyard. I called his name, and he kept walking. He was not ignoring me. He simply did not understand what I was asking. I could not barge into someone else's yard after him, so I dialled 911. The police arrived quickly. The team surrounded the area and found him. My boy had no idea anything had happened. I was the one shaking. Two minutes was all it took, and I still think about how differently those minutes could have ended. Our home changed that day. The front door stays closed and locked. We fenced the yard, and the gate is always secured. I still check every lock twice. So when I read about Saket, I knew exactly what his parents felt in that first hour. The difference is this. When I picked up the phone, a trained team knew exactly what to do in the first few minutes. Saket's family had police and neighbours searching too, but nobody trained to look for a child like him. Ten days of searching came too late. What a system looks like I live in Connecticut, and the American system is far from perfect. There are waiting lists, insurance battles and mountains of paperwork. But the basic promise is written into law. Paediatricians are advised to screen every child for autism at 18 and 24 months. Autism is not treated as rare: the US Centers for Disease Control and Prevention estimates that one in 31 eight-year-olds is on the spectrum. Under the Individuals with Disabilities Education Act, every state must provide early intervention from birth to age three, often with therapists visiting the family at home. From three to 21, the same law guarantees every child a free, appropriate public education. Each autistic child gets an Individualised Education Programme, a written plan agreed by parents and teachers that spells out the speech therapy, occupational therapy or classroom aide the school must provide. A public school cannot simply turn an autistic child away. Safety is part of the system too. After Avonte Oquendo, a 14-year-old autistic boy, walked out of his New York school and was later found dead, Congress funded a programme that pays police and local organisations for tracking technology and wandering-prevention schemes. Many police departments now train officers to approach autistic children, and families can register a child's photo and details in advance. None of this guarantees a happy ending. But when a child goes missing here, the people searching already know what autism is. What Nepal is missing Nepal's 2021 census counted 4,886 autistic people. AutismCare Nepal Society puts the real figure at between 150,000 and 300,000. That gap tells the whole story: most autistic children in Nepal are never diagnosed, especially outside the cities. Most hospitals do not screen for autism. The country has roughly 150 psychologists and even fewer trained therapists. Dhangadhi has no permanent speech or behavioural therapist; one visits from Kathmandu for a day or two. Services cluster in the capital, so rural families travel or relocate. One family told the Kathmandu Post it spends Rs 80,000 a month on therapy, a sum far beyond most Nepali households. The Rights of Persons with Disabilities Act exists on paper, yet mainstream schools still turn disabled children away. Stigma runs deeper. Children who do not speak or who avoid eye contact are called lazy, stubborn, even cursed. Many families hide them, or take them to a traditional healer first. And there is no plan for a missing autistic child. Saket's community did not abandon him. Police, neighbours and volunteers searched for ten days, and the appeal spread across social media. But goodwill is not a method. The search reached as far as Bihar, while Saket lay in a paddy field five kilometres from his own door. There was no registry, no trained team and no protocol telling searchers that an autistic child may not answer when called, may hide, or may be drawn to water and open fields. When a child who cannot ask for help goes missing, the first hours matter most. By the time anyone looked in the right place, it was too late. There are signs of progress. In April the government announced an autism model school in each of the seven provinces, and a draft National Autism Guideline reached the Health Ministry last September. But seven schools for several hundred thousand children is a start, not an answer. Parents who cannot clock out One burden rarely makes the news: holding down a job while raising an autistic child. My wife and I both work in hospitals, where shifts do not bend easily. Autism does not keep office hours. Therapy falls in the middle of the workday, school meetings pile up, and the classroom calls asking a parent to come at once. Few babysitters or daycare centres are trained, or willing, to care for a child who needs watching every second. I cut my own hours so one of us is always available. Many parents I know have done the same, and more often than not it is the mother who leaves work altogether. Families lose an income just as therapy costs peak. The US offers some protection. The Family and Medical Leave Act gives eligible workers up to 12 weeks a year of unpaid, job-protected leave to care for a family member, and the Department of Labor has confirmed it can cover a parent attending a child's school planning meeting. But unpaid leave does not pay the rent. In Nepal there is almost nothing: no caregiver leave and almost no specialised daycare. A parent who must watch a child every minute cannot also earn a living. Without support, families are forced to choose between income and safety. What Nepal can do now Much of what matters costs little. Add a simple autism checklist to routine child check-ups at health posts, and train female community health volunteers to spot the signs. Pass the National Autism Guideline and give it a budget line, not just a press release. Enforce the disability rights law and place a trained resource teacher in every municipality, so autistic children can learn alongside their neighbours. Fund respite care and trained daycare so parents can keep working, and encourage employers to offer flexible hours. Above all, build a protocol for missing autistic children. Teach police that such a child may not respond to their name and may hide. Search water, fields and enclosed spaces first. Let families register a photo and description with their ward office and local police before tragedy strikes. Every one of us can help, too. If you see a child alone who seems lost, does not respond normally or looks distressed, do not walk past. Stay with them and call the police. For Saket Saket should be home tonight, eating the Dashain food his mother cooked, understood by the people around him in whatever way he could be. To his mother and father: I cannot know your pain, but I know the love beneath it. I live with that same love, and that same fear, every day. Let his name outlast the news cycle. Let him be the reason a health worker in Dhanusha learns the signs, a teacher keeps her classroom open to a child who is different, and a police officer searches the paddy fields on the first day, not the tenth. Rest in peace, little one. Gyanendra Joshi, PharmD, is a clinical pharmacist in Connecticut, USA, and the father of an autistic son.