Bishan and Aayush with their friends outside the Center for Autism Care Nepal Society in Chitwan.
MyRight accompanied Autism Sweden during their visit to Nepal where, together with their partner organization, it works to strengthen human rights for people with autism. Despite difficult challenges and obstacles, they persevere and their work makes a difference.
In the small and warm room, around 20 expectant parents sit close together on low children's chairs. It's a bit uneasy in the room, the staff at the center have a hard time getting the curious children not to enter the room and disturb their parents who have prepared many questions for today's lecturer Eva Nordin-Olson from Autism Sweden. We are in the city of Chitwan, south of Kathmandu, where one of the local associations of the Autism Care Nepal Society (ACNS) operates.
Since 2013, Autism Sweden has a project together with ACNS in Nepal whose overall goal is to improve the opportunities for education and social security for people with autism in Nepal. Over the years, they have worked to strengthen ACNS as an organization, increase doctors' and psychologists' knowledge regarding early diagnostics and teachers' special educational skills, and influence authorities in Nepal to improve conditions for people with autism in the country.
Today's workshop at the center in Chitwan is held for parents of children with autism who are in the middle of a 12-week training aimed at both the children and their parents. During the training, ACNS teaches what an autism spectrum disorder is and how you as a parent can use different tools and strategies to communicate with your child to deal with the difficulties that arise in everyday life. The teachers at the center are all parents of children with autism and for the parents it is valuable to meet others who are in the same situation.
After Eva has finished her lecture, the word is free and many parents are eager to ask questions. Parents tell many difficult and gripping stories but at the same time show a willingness to understand more in order to help their children with autism to feel and develop in the best possible way. The meeting continues a couple of hours longer than planned and Eva answers many of the questions with examples from her own experiences of being a parent of a child with autism.
- It is so clear that challenges in family and everyday life that parents of children with autism face are so similar around the world despite such different conditions.
Eva Nordin-Olson answers the parents' questions with tips and advice from her own experiences as a parent of a child with autism.
Lack of knowledge in care and education
Most parents express that they have not received sufficient help and guidance from Nepalese authorities, as doctors and psychologists often lack sufficient expertise on autism. Ten-year-old Sadishree Bhattarai and her parents are one of the families participating in the education in Chitwan. Sadishree had difficulty walking and talking at an early age and when his parents tried to get help, they had to go to New Delhi in India to get help with investigation and diagnosis. They were told about ACNS's center in Chitwan and mother Pramila Gyawal makes sure that the skills they learn at the center they also continue to practice when they get home.
- It is good that Sadishree can learn the simplest everyday chores so that she can take care of herself a little more.
Another family participating in today's workshop is Narahari Puri and his two-year-old son Ronav, who accompanies his father wherever he goes. Narahari is grateful for the help of the center to learn to handle and help her son with is at the same time frustrated that they do not get any support from the authorities.
- There are no special schools for children with autism in Nepal, there is a lack of competence and it is difficult to get help.
Although education is a fundamental right enshrined in the UN Declaration of Human Rights, the Convention on the Rights of the Child and the UN Convention on the Rights of Persons with Disabilities, many children with disabilities in Nepal share the experience of not being able to attend school.
Ten-year-old Sadishree Bhattarai and her friends in the playroom at the center in Chitwan.
New team with hope for change
In recent years, there has been some positive change. Together with other disability organizations in Nepal, ACNS is working to increase the awareness of autism among politicians and other decision-makers. A major success for their advocacy work was when The Disability Act was adopted in Nepal in 2007. It is a law that for the first time has a clear rights perspective for people with disabilities, where autism is mentioned as an individual disability.
The law is an important milestone in the implementation of the UN Convention on the Rights of Persons with Disabilities (CRPD) and the aim is that it will lead to improvements for people with disabilities regarding access to basic human rights, such as access to inclusive health care, education and employment.
Teacher education creates a better environment for children with autism at school
When we return to Kathmandu from our trip to Chitwan, we visit ACNS school where in addition to regular school activities for children with autism, we also offer teachers in Nepal to conduct a two-week training on special education in autism. Several of the teachers say that the regular teacher training in Nepal does not teach about autism or intellectual disabilities and how one characterizes it as a teacher. But recently, more schools in Nepal have drawn attention to the lack of knowledge about autism and are enrolling their teachers in ACNS training, something they do not have to take time off from their regular service to participate in.
Principal Pushpa Kumari Sunar at ACNS Schoolyard in Kathmandu.
One of the course participants is principal Pushpa Kumari Sunar, who has worked as a teacher for 14 years and experiences that children with autism are often ignored at school because teachers lack knowledge about how to help them. She notices that misunderstandings often arise between teachers and students due to lack of knowledge and communication, which creates an insecure environment for students. Prior to the training, Pushpa and her colleagues did not know that they could, among other things, use visual aids to show and explain with pictures to the children what to do.
- Now I can more easily see if a child needs extra help and can provide the support they need.
ACNS's work to spread its activities throughout Nepal is in full swing and local organizations or activities are now located in five of Nepal's seven provinces. Eva Nordin-Olson is impressed by how the organization has developed and believes that parts of their operations and working methods, especially the teacher training courses in special pedagogy for autism, are more and better developed than those in Sweden.
- I am still very impressed by ACNS's work, their commitment, seriousness and perseverance. They work tirelessly on despite repeated setbacks and new obstacles. I have had the privilege of working with them on the project for 8 years and clearly see how their work makes a difference.
Facts about autism (from Autism Sweden's website)
(autistic syndrome, infantile autism, Kanners syndrome)
Autism is a congenital or early-onset severe disability, the symptoms of which appear before the age of three. Autism is often associated with other disabilities such as developmental disabilities, epilepsy, visual and hearing impairments. There are more boys than girls who are diagnosed.
Autism comes from the Greek word autos, which means self. Autism is one of the diagnoses in the autism spectrum that also includes Asperger's syndrome, atypical autism and disintegrative disorder.
