Caring for the autistic child

Battling for rights of children with autism are their parents who are pushing for a life of dignity for them

For 13-year-old Aneesh, it was the happiest moment to welcome his brother, a companion he was longing for years. “I do remember the day my brother came into this world. I was too young to know when people said he was different, but my brother is more intelligent than I. He means the world to me,” said Aneesh expressing the joy that his brother’s smile brings to him. But Aneesh’s autistic brother has a long and arduous journey in front of him.

Autism is a neurological disorder that impairs one’s ability to communicate. Inspite of tremendous efforts put in by affected children’s parents to spread awareness about autism, even today over 90 per cent of the people remain ignorant about the issues of the disorder and the challenges faced by those who suffer from it. Battling for rights of individuals with autism are their parents who are pushing for a life of dignity for their children.

Autistic children stand to benefit from schooling, jobs, and welfare projects once the new disability act is approved. But for now, it is a disability not recognized as one. Despite many challenges, these parents do all they can to help their children lead a normal life.“I have been working extensively for the rights of my child. In the beginning, no school was willing to take him, because they saw this as a problem. Only after constant perseverance, finally a school nearby our place agreed to admit him.

But they believe they are doing us a favour by taking him. Although, I am sure they will subsequently appreciate my child’s talent,” says Sumitra Belde, parent of an autistic 12-year-old. The challenges these parents face don’t end with securing an admission in a school. Their travails continue during commutes, vacations and even during fun times at parks with their children.

Shabnam Fatima, parent of another autistic child, says, “Many schools are not willing to admit my child. So my husband and I have decided to admit our son at The National Institute for the Mentally Handicapped (NIMH). I come all the way from Masab Tank, and have to take two to three buses daily to reach my destination. We are not asking people to be sympathetic. But it really hurts when they look down upon our children.”

Autism has a strong genetic basis. Earlier there were very few institutes that provided speech and behavioral therapy. But now we have many more. Most of the parents rely on NIMH and Sweekar Upkaar for their children’s daily therapy. “Just like me, many parents’ have quit their jobs as they have to dedicate their times to their children. From the time my child wakes up to the time he is asleep, I am right beside him ensuring his every need is met.

We have to rely on these government centers as they are affordable. With this facility available here, children get treatment at one place and don’t have to go to different centers,” expressed Meena Ratna.While many parents stress on the need for awareness campaigns, Vishali Mohan says it was difficult for her when she realised her daughter was autistic. But she adds that the way the society looks at it makes it even harder for her.

"Sometimes people call me brave and applaud me. I really don’t wish to be considered so. That is not something I ever wanted. I have only wished to be just another mom with a child who acts differently. It just doesn’t end at this; the way people stare at our children makes them very uncomfortable.”

Rajesh Dulapally, parent of an autistic nine-year-old highlights the need for an awareness programme which he says should be initiated by both the state and the central goverment. “There is an absence of self - advocacy among autistic children and so parents act as advocates for them. I don't know what will happen to my kid after I die. Who will invest the amount of time that I do? That concerns me the most"

By:Navatha Y