As the first child of this doctor couple, Krit brought them happiness and a sense of completion. Krit had a fascination with things that spin and would focus constantly for hours on the wheels of his toy cars. [break]
The Amatya couple saw this as one of the one-year-old´s unique characteristics. Other were an attachment to objects such as toys and different toe movements.
“A child psychologist, who is also a friend, told us that Krit could have autism,” says Dr Sunita. “Puzzled by what it meant, despite being in the medical profession myself, I looked it up on the internet and was devastated by what I found.”
Similarly, Sarina Ranjit, a housewife, and her engineer husband had Ejem, their first-born, eight years ago. Ejem started showing difficulties with his speech, which created difficulties for him at school. The Ranjit couple, worried that their son had a learning disorder known as dyslexia, went to great lengths to find treatment. “It has been nine months since I have learnt of Ejem´s real problem through a psychologist,” says Sarina with a sad smile. The boy has autism.
Petite Noor Shrestha, 5, on the other hand started showing difficulties when she began to walk at two and half years. “She would start walking and then fall on her face,” said her businessman father Sahadev Shrestha. Noor also started having problems with her speech and showing unnatural responses to sensation. After months of visiting doctors´ clinics and going to Delhi for a thorough checkup, she was diagnosed with autism.
Krit, Ejem and Noor all suffer from a neuro-developmental disorder which normally occurs in the first three years of life and is called autism. “This lifelong disorder is caused by lack of development of the area of the brain that controls social skills, communication (verbal as well as non-verbal) skills and thought and behavior,” says Dr Sunita, who runs Autism Care Nepal (ACN) with her husband and other parents with autistic children.
These cases, especially that of Krit, whose parents are doctors, show how little we know about this disorder, and the lack of specialists adds to the woe of parents whose dreams and aspirations for their children have been shattered because of it.
Autism is also known as a spectrum disorder as the symptoms range from mild learning disorder and social disability to severe impairment along with multiple problems and highly unusual behavior.
"Some children will speak a lot while some will completely stop talking and some others might be hypersensitive or hyposensitive with the senses. They do not have an understanding of rules and regulations, have a hard time making friends and lack imagination that children without autism show," explains Dr Sunita. Though autism cannot be completely cured, early intervention can effect positive changes in the child´s behavior, she informs.
"Therapies that come under Developmental, Individual difference, Relationship-based (DIR/Floortime) model, Applied Behavior Analysis (ABA) and Treatment and Education of Autistic and related Communication Handicapped Children (TEACHC) can help a child with special needs develop better if not completely," Dr Sunita further says. ACN offers special education and art, music and occupational therapies to help the children cope better in life.
Specific data on the number of individuals living with autism in Nepal is not available, but according to the US government´s Center for Disease Control, one child out of every 110 has mild or severe forms of autism. "That statistic is in itself a huge number but it is sad that there is a lack of information and proper care," she says. ACN currently has one occupational therapist who had to be brought from India, a music therapist and a special educationist to help the children who come to its daycare center.
"Children with autism live in a world of their own with their own reasoning and unusual behavior, and as an occupational therapist I give them a sensory diet," says Roshan Ronghang, an occupational therapist from Meghalaya in India who was specially brought to Nepal as this country does not have one yet.
Similarly, Sijan Shakya, the only special educationist in the country at the moment, helps autistic children learn. "These children do not understand the notion of learning and as a special educator I help them and their parents learn," she says. According to Sijan, who was trained at Action for Autism in Delhi, those children with severe conditions have to be taught even how to hold a glass and take it to their mouths. Therefore, a special educator works as a bridge between the two worlds.
"When a doctor friend suggested that my daughter Aproova could have autism I did not understand what it meant," says Binita Pokharel. She later accessed the term on the internet and she was led to ACN a couple of months ago. There she met Dr Sunita and many more mothers and fathers with autistic children and is currently taking a 12-week Mother Child training at ACN, which helps the parents care for and help their special needs children better. ACN offers this training four or five times a year“
"When I learnt more about autism, I felt that I had lost a child," says Dr Sunita as her eyes well up, "but then I realized that my Krit just lived in a world that had a different culture. He did not understand our world like we did not his."
"Ejem´s ways at times frustrate me but I am more frustrated by society which does not understand him and judges him, and me as a mother," says Sarina. At the moment there is no learning center in Nepal specially dedicated to children with autism.
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