BANGALORE, INDIA – Siddhart Roy, from Bangalore, a city in southwestern India, says his son Dev, 4, is autistic. At first, he says the family assumed Dev was just late to start speaking.
“The pediatricians diagnosed that Dev was autistic at a very late stage, as there was a notion that male child speak late,” he says.
But he says that although diagnosis is strong here, care is lacking.
“After my son was diagnosed, I and my wife had to do a lot of running around searching for the right place for his treatment,” he says.
But they found few trained professionals who were qualified to work with Dev, he says. His voice changes as he becomes emotional about finding a school for Dev, which he says generated significant turmoil. He says he was scared because he had heard from other parents that many schools treat students with different needs as cattle.
After an extensive search, they were finally able to find a school for Dev with professionally trained teachers. He says he is happy that his son’s abilities have been developing through the therapy sessions the teachers provide.
“My son has shown improvements after the therapy sessions,” he says.
But it is difficult to afford such care.
“These therapy sessions are very expensive, and I feel that people of less economic status will find it difficult to afford them,” he says.
Roy says that autism is growing at an alarming rate in India. As such, there should be more awareness programs to educate parents about signs of autism and ample programs to provide care for autistic children. He says that he knows of many schools that do not have trained professionals to take care of autistic kids, which he says is unfair.
A major challenge that parents of children with special needs face is finding programs and schools qualified to provide their children with the care and education they deserve. Because of a lack of available and affordable options, various citizens have taken it upon themselves to volunteer in or even start their own schools and centers. The government is implementing a strategy to train more teachers to work with children with special needs.
Quantitative information on autism in most countries in Southeast Asia is limited, according to a 2010 World Health Organization report.
Sarva Shiksha Abhiyan is a government program that aims to universalize elementary education by ensuring basic education to all children. Still, there are many children with special needs who don’t receive the care they need or who never go to school at all.
Anjali, 34, who declined to give her full name to protect the privacy of her family, is a working mother in Mumbai. She says her younger sister is autistic, and her son, 8, is mentally disabled. She says she is afraid to have another child because of the increased chances that he or she would have a disability or disorder as well.
“I think it is hereditary,” she says.
She says that her son’s problems aren’t acute, but his disability causes him to struggle in school.
“He is having difficulty in picking up things in his normal school,” she says. “But I and my husband have decided to allow him to study in the normal school. We are yet to decide on how far he can pull in such normal school.”
But for other children with more severe disabilities, standard school is not an option. Many parents of these children say suitable schools are either unavailable or unaffordable. To fill this void, some citizens have taken it upon themselves to start their own schools and care programs or work as volunteers.
Since 1978, Dr. Sunipa Roy, a psychiatrist with no relation to Siddhart Roy, says she has been responding to her heart’s calling by working with children with special needs. She eventually set up Uttarayan, a trust that aims to provide support and guidance for people with developmental disorders and other associated learning disorders.
Uttarayan operates a school in Salt Lake City, a satellite town in northeastern India. The 25-year-old school has 50 students.
The trust also has a residential complex in Arambagh, a town in northeastern India. Opened nearly 15 years ago, the facility provides 24-hour assistance to 24 residents. Roy says staff members call it a “home away from home” for the residents. The residence has even taken legal guardianship of some residents who are orphans.
Roy says her passion for working with children with special needs began with her niece, Monjeera Sen, who is mentally disabled. Roy’s mother used to take care of her niece and on her deathbed made Roy promise to take over caring for her. At that time, Roy says there were few schools for children with special needs, so she decided to start one herself.
Roy says that the school differs from traditional schools in that it offers functional academics rather than traditional subjects. She says the teachers don’t give marks or report cards, but they rather aim to make students more self-sufficient. She says it’s not possible to make the students completely independent, but she strives to make them less dependent.
“For example, we teach them how to read clock time, how to do simple money calculations, block printing, how to commute and many other functional activities,” she says. “Regular cultural activities like singing and dancing sessions are held, which also helps them.”
Roy says they also design individual programs based on each student’s needs.
“We design individual programs in consultation with the child’s parents,” she says. “Every individual has a set of learning goal as per his/her disorder, and this goal is revisited and revised frequently for the child’s development.”
She says that these individualized programs have even prepared some of the more independent students to work.
“Some of our students are even working in real life,” she says. “For instance, our student Jaideep now works in a photocopy shop and thus earns some living. Another student Neelabhor learned well about money calculations and commuting in local transports and now works in a factory. One girl sings very well and has been interviewed for her unique talent.”
Roy says that parents must have patience to help develop the different abilities of their children based on their individual needs.
“I have a message for the parents that some of them have less patience and expect their children to show great improvements in a short time,” she says. “Some parents do school shopping and doctor shopping. They change schools and doctors very frequently, which is not good for [the] child’s development. It is beneficial for the children if they are kept in one school where they are given great care and where their development can take place.”
For example, she says that some parents thought their children were hopeless because they could not speak or were extremely hyperactive. But after these children were enrolled in the right programs for them, they began to be able to speak up or calm down.
She says that society also needs to improve its attitude toward children with special needs. She says people must remember that these children have emotions too.
“Acceptance,” she says. “They need acceptance.”
She says some organizations and institutes have reached out to connect with the children at her school, which she says improves awareness in society.
“For example, [B.P.] Poddar Institute of Management Studies had invited Uttarayan kids to perform cultural programs for them,” she says. “Similarly, other corporate and institutions can invite our students as well. As more and more people would see these children, act, dance and sing, their awareness would grow.”
Aside from patience and acceptance, she says the children also need more space to learn, grow and develop. Roy says she would like to accept more students at her school, but space is a major concern.
“Space crunch is one of the challenges we face,” she says. “In our schools, although the activities are different, but due to space crunch, the young students and elder students have to be together. This might also be a matter of concern for the elders, as they need separate space for their activities. I have not been able to incorporate more activities for the older students due to space crunch. We need more schools for such children, and we need more help from government and corporate people.”
Like Roy, C.S. Laxminarayana also felt called to work with children with special needs. Laxminarayana founded Rahasya Trust, a school in Bangalore for children with special needs. He says that because many parents of these children work full time, they face great challenges in caring for and educating them. So he decided to step in.
“I taught them simple things like going to the toilet or knowing what is edible and what is not edible,” he says. “So far I have taken care of 150 kids.”
Samira Rai, who requested her name be changed, is also involved in a school for students with special needs.
“I have been serving as volunteer in special schools from two years, and it is a very humbling experience,” she says. “I have learn[ed] to be more patient and resilient in my personal life after this job. It is a very difficult job, and I received training to do so.”
The Indian government has developed in recent years a four-tier strategy for training more personnel to work with children with developmental disorders such as autism, according to a 2010 World Health Organization report on a meeting of autism experts in Southeast Asia. The strategy has been so effective that the report from the meeting recommended its implementation in countries across the region.
The Rehabilitation Council of India, the autonomous body charged with governing the training of rehabilitation professionals, established an undergraduate course in special education and autism spectrum disorders in 2003 and gave permission to start a degree course on autism in 2010, according to the report. As of 2010, nearly 1,200 teachers had been trained. More than 40,000 teachers had also received training on autism under the council’s Continuing Rehabilitation Education program.
