Children with autism suffering stigma in absence of awareness
By Ajita Rijal
Kathmandu, Apr. 2: Laxmi Aryal had moved from Biratnagar to Kathmandu seven years ago in search of a better school for her autistic daughter Shreya.
She was compelled to come to the capital after Shreya was denied continuing her study in a primary school, citing her different behaviour, said Laxmi, recounting her painful moment.
“We should not have gone through such difficult situation if the government had had rehabilitation centres and special schools for autistic children like my daughter,” she said.
Now that Shreya is 18, Laxmi has her hands full in taking care and handling a grown up girl: as Shreya cannot take care of her, does not communicate, and sometimes act aggressively. As she has grown older, our worries have increased, said Laxmi.
Dr. Anil Ojha, a pediatrician at Patan Hospital, said that many autistic children and adults remain undiagnosed or are considered as ‘mentally retarded’ and are often left stigmatised for the rest of their lives due to lack of awareness and early intervention.
The symptoms of autism vary from people to people. The symptoms include- difficulty in social interaction, communicative challenges, preference to stay in isolation and repetitive behaviors among others, said Dr. Ojha. He added that the treatment is based on the specific needs of a child.
Accurate diagnosis of autism is very important at childhood stage before a child grows into adolescence, he said. Managing autism needs a multidisciplinary approach, which comprises medication and therapeutic measures, caretaking, and teaching from trained teachers, he added.
“Most of the parents visit doctors late for the diagnosis of their autistic children. It will be difficult for a youngster to adapt to the skill and therapy. Since every milestone of the baby will be developed within the Golden 1,000 days,” Dr. Ojha said.
Dr Sunita Maleku Amatya is taking care of her autistic son. Chairperson of Autism Care Nepal Society, a non-governmental organisation working to support autistic children, Dr Amatya said it was difficult for a privately owned care centres to reach out to or serve all autistic people. “There are limitations in providing support,” she said.
Talking about the gravity of the problem, she said, “We do not know how many autistic adults are suffering from or possibly facing terrific problems (by virtue of being misunderstood) and social ill treatments in the remote nooks and corners of Nepal, so the state must be accountable and provide them safe shelters and better training, therapy and education.”
“There is economic burden, emotional bonding problem and lots of issue parents go through with having an adult son or daughter with autism,” she added.
“During childhood autism seems normal, but as the boy or girl with autism grows older, it is difficult for both the autistic adult and his/her family to see them acting differently in the public. People will think they are rude and violent, not understanding the condition they live with,” said Dr. Amatya.
According to the Special School for Disabled and Rehabilitation Center (SSDRC), another organisation that runs care center for autistic children, “It is a fundamental human rights of every child with autism to be able to access necessary therapies and education as per their capacity.”
Sabita Upreti , founder of the SSDRC, said that autistic children had not been able to easily access basic health and education services , due to lack of general awareness on autism among public.”
“Dealing autism among adults is a real challenge. Parents or even trained caretakers can’t always figure out how to treat an autistic adult once they head into adulthood,” said Upreti and added that SSDRC only enrolls autistic children upto 12 years.
Some people with autism have exceptional abilities and we need to recognise them through their interest, Upreti added.
SSDRC, which currently has 45 autistic children at their special school, has declared its slogan for this year’s WAAD as ‘Understand Autism, Help Other Understand it and Spread General Awareness.’ April 2 is marked as the World Autism Day.
On a positive note, the Persons with Disabilities Rights -2074 BS has categorised the ten types of disabilities, mentioning Autism Spectrum Disorder at the ninth number.
There is no official data on the number of persons suffering from autism at present. According to Autism Care Nepal Society, one in 68 children is born with the condition of autism worldwide and it is estimated that there are around 300,000 persons with autism in Nepal.