Nepali parents don’t have the knowledge or resources to take care of children with disorders like autism, but support is on its way
When Dr Sunita Maleku Amatya and Kapendra Amatya’s six-year-old son was diagnosed with autism
in 2008, the couple who are doctors by profession had no clue how to move ahead. Like Sunita and Kapendra, many parents in Nepal don’t have the knowledge or resources to take care of children with developmental disorders.
“Can you imagine being a parent, having heard of autism, but with no access to any kind of help or service? We felt helpless,” recalls Sunita, ananaesthetist at Bhaktapur Cancer Hospital.
While physical disabilities can be seen and easily identified, autism is ‘invisible’. The government does not even recognise autism when issuing disability identity cards rendering autistic people ineligible for state sponsored monthly allowance. And when children act aggressively, have trouble communicating or interacting with others, and engage in repetitive behaviour, parents wrongly blame bad temper or poor discipline for these symptoms. As a result, hundreds remain undiagnosed or are lumped in the ‘mentally retarded’ category and stigmatised for the rest of their lives. Since there is very little support for families, mothers in particular are often forced to quit their jobs to take care of their autistic children full-time.
Fortunately Sunita and her husband found a solution abroad. After undergoing a three month training course in Delhi, they started a parents’ support group called Autism Care Nepal (ACN) in 2008 in Gairidhara. Run by parents with autistic children, ACN provides counselling and training in disability care for families as well as diagnostic assessment tests. There are currently 15 students at the school and daycare centre, where they are taught art and music therapy and the older ones are given vocational training classes.
Among the parents working at ACN is Sijan Shakya who is the first autism education specialist in Nepal. “I had to go to India for one year for training. It was very difficult to leave my son for that long and not everyone can afford it,” explains Sijan. “But there was no support system for families with autistic children, so I decided to do something about it.”
Patan Community Based Rehabilitation Organisation (CBR) is another institution that serves children with autism and other neurological development disabilities. Established in 1995, classes are designed with the aim of eventually integrating students into mainstream schools. At CBR children develop physical and cognitive skills, build self-esteem, and learn to make candles, artificial flowers, incense, and decorative items during their vocational training classes.
According to Autism Speaks, a science and advocacy organisation in the US, around 67 million people worldwide fall under the autism spectrum (ASD). There is no data on Nepal, but ACN estimates there are anywhere between 10,000 to 50,000 autistic children and adults in Nepal. Although the country is a member of the South Asian Autism Network, it has yet to fulfil its obligations.
However, there are hopeful signs. Recently, the Ministry of Education granted Rs 90,000 to ACN for teacher support. The organisation is also working with the ministry to conduct training workshops for teachers both in and out of Kathmandu. “The training helped build a bridge between me and my child,” says Kreepa Shrestha, parent trainer. “Although it is a slow process, my son can now express himself better. I can tell he is happier.”
As the world gears up to celebrate Autism Awareness Day on 2 April, Nepal should look to provide opportunities and services tailored to autistic children so they can become fully productive members of society. Introducing mandatory autism screening for children aged 18-24 months like in the US is the first step in helping families and health care providers. A comprehensive health and education policy that calls for special schools and outlines ways to help integrate and support children with developmental disorders into mainstream schools and community should follow next.
Here are some ‘red flags’ you need to look out for that might indicate your child is autistic. ASD can sometimes be diagnosed as early as 14 months. If your baby shows two or more of these symptoms, visit your paediatrician as soon as possible. Early diagnosis and intervention is crucial in promoting your child’s development.
Impairment in social interaction:
**Lack of appropriate eye gaze
**Lack of warm, joyful expressions
**Lack of sharing interest or enjoyment
**Lack of response to name
Impairment in communication:
**Lack of showing gestures
**Lack of coordination of nonverbal communication
**Unusual prosody (little variation in pitch, odd intonation, irregular rhythm, unusual voice quality)
Repetitive behaviours and restricted interests:
**Repetitive movements with objects
**Repetitive movements or posturing of body, arms, hands, or fingers
A care in time
(Updated 2 April 2013)