One year ago, the Autism and Asperger's Association started a project together with the Autism Care Nepal Society, which runs the center in Nepal.
- It was incredibly fun to come to Nepal and see the great commitment of the members and those who work at the center. Despite the lack of resources, they have a will to change the situation, not only for their own children, but for everyone with autism throughout the country, says Anna Calissendorff who is responsible for operations and active in the project.
The center's activities are aimed at both children and their parents. They have parenting courses where they teach what autism spectrum disorders are for something and how you as a parent can handle the difficulties that arise in everyday life. For parents, it is valuable to meet others who are in the same situation. All the teachers at the center also have children with autism.
The Autism and Asperger's Association contributes with practical knowledge
- The teachers at the center know a lot on a theoretical level, what we can contribute is to connect the theories to the practical knowledge, says Carina Pettersson. We support teachers in developing their ability to make individual assessments and to relate the content and structure of the activities to the individual needs.
Both Kripa and Jyoti agree with what Carina says.
- We have learned a lot here in Sweden, especially from seeing how the practical work works. The adults are included as support, but the starting point is always to let the children and young people be as active as possible.
It is obvious what a great impression it has made on Kripa and Jyoti. In Sunne, they met Johanna, a young woman who has been able to move to her own home with assistance. They say that they were both impressed and hopeful to see how involved she is in all the housework.
- Meeting Johanna and her father and visiting daily activities for people with autism has made us realize that we do far too much for our children instead of supporting them to do things themselves. The most important thing we take with us from here is probably to dare to believe more in the children's own abilities, so that we can stimulate them to develop.
They have both seen how meaningful pursuits reduce children's and young people's problematic behavior.
There was no one in Nepal who could investigate and diagnose
Kripa tells about his son who is now twelve years old. They understood quite early on that he was different from other children, but there was no doctor in Nepal who could do an investigation to give him the correct diagnosis. She and her husband searched for information on the Internet and were advised to go to a hospital in India. There, their son was diagnosed with autism and Kripa was given the opportunity to attend a parent education.
- At first I was very shocked when I understood that it is not possible to cure but is something he will live with all his life. But during the training, I felt more and more hopeful when I realized that the family's attitude has a huge impact on how he feels and develops.
Decided to pass on the knowledge
When Kripa came home from India, she started holding her own parenting courses for her parents in the Autism Care Nepal Society. Jyoti attended my first training, she says, turning to her colleague, who has also been to India with her son, to investigate and establish his diagnosis.
Today, the organization can assist in investigations as there is a person in Nepal who knows the diagnostic tool ADOS, which is linked to the center. It is a great improvement, but there is still a lot of work to be done to change the situation of people with autism spectrum disorders in Nepal.
- We need to inform the public and educate both parents, teachers and healthcare staff, says Jyoti.
Through various collaborations with actors, they set up a street theater earlier this year that was much appreciated and was involved in making a film that has been shown on TV.
We use our own experiences as good examples
The teachers' own experiences mean that they know how to respond to the families who apply to the center.
- When the parents come to us, they often become very sad when they understand that we can not cure their children, Kripa says. We recognize ourselves in all their reactions and use our own children and our own experiences as good examples. As they go through their education, they begin to feel better.
How does it feel now that you are so far from home, I wonder.
Oh that's wonderful, they both say and laugh. We have time for ourselves, at the same time as we learn a lot. Our children are happy with their fathers, they add, and smile.
Kripa reaches for her mobile and wonders if I want to see a movie that her husband sent yesterday.
- A few years ago, no one thought he could talk, but he can now and check it out here, here he sings a whole song with his father, she says and proudly shows the film of her son singing in front of the camera.
Picture and text: Lina Jakobsson