In Nepal, knowledge about autism is very low. The diagnosis is relatively new in the country and there is a great lack of competence in, among other things, healthcare and schools. Sangita Karki is one of those who want to learn more about autism.
Sangita works as a neurologist at Hope Center for Child Development and Research Nepal. The centre, which has been open for 8 months, provides support and habilitation to children with neuropsychiatric disabilities (NPF) and their parents. When Sangita found out that ACN offers training for educators, teachers and other professionals who work with children with autism, she immediately signed up. She tells us that the challenges with autism are many and that the lack of knowledgeable staff is great.
- I am grateful for the opportunity to develop my skills. It makes my work much easier to gain new knowledge and take part in research, says Sangita.
ACN is MyRight and Autism Sweden's partner organization, they work to strengthen the rights of people with autism in Nepal. This includes, among other things, work to improve access to education and social security for children with autism.
In addition to diagnosing children, educating parents and teaching children and young people with autism, ACN offers short but intensive training courses for teachers and other professionals working with autism.
Teachers from both special schools and general schools participate to get the right tools to teach children and young people with autism. Other professionals, like Sangita, also make great use of what they learn in their work.
"I need to be part of the change"
Sangita enthusiastically talks about what she learned during the two-week training. She now knows the importance of getting parents of children with autism to get involved and train with the children at home. The work that takes place at home has a big role in improving the children's lives. Sangita has also learned about what it's like to work with slightly older children with autism, and how much changes when they become teenagers.
- It is very important to talk early on about, for example, menstruation and hygiene, but also sexual rights and health. We have to teach them how to set boundaries themselves and accept the boundaries of others. For a person with autism, it can be difficult to understand, says Sangita.
Sangita is passionate about getting more people to understand autism and will spread what she has learned to her colleagues.
- I have to be part of the change, by gathering knowledge and sharing it with my colleagues I create a competent workforce that can in turn teach others, says Sangita.
If the government ensured that more people had the opportunity to learn about autism and other diagnoses, it would greatly facilitate children's right to education, care and habilitation, according to Sangita. But she has no high hopes for support from the government in the near future. That is why it is especially important with commitment from individuals.
Big challenges to reach children in rural areas
When Sangita tells about the situation of children with autism in rural areas, she becomes depressed.
- I can hardly imagine how children with autism feel in rural areas, it is a difficult situation and many are kept locked up, she says.
There are several reasons why the children in rural areas have it more difficult. Partly it is because awareness of autism and other disabilities is extremely low. But there is also a great shortage of doctors and other support resources in rural areas.
-Most doctors, speech therapists and special teachers are in Kathmandu, in rural areas parents have to fend for themselves, says Sangita.
The lack of professional support means that parents and school staff do not know how to deal with children with autism. An example of the consequences of that is that children who are disruptive are locked up or kept home from school. There are also prejudices in Nepal that boys start speaking very late, which in many cases prevents parents from seeking care for their sons. For children with autism, it is important that the diagnosis is made early so that the right support can be given as soon as possible.
With the right resources, children with autism can have more educational options
Parents of children with autism do not have many options when it comes to their children's schooling. The availability of special educators and assistants in the schools is low in the larger cities and in the countryside it hardly exists. The special schools are therefore very important, but Sangita also believes that it is not impossible for some children with autism to attend a general school together with students without autism. On the contrary, it can be developed and good for some children. She once again points out how important it is that more people get the skills to work with children with diagnoses at school.
- It's tough for teachers, children with autism have different needs than children without autism and, moreover, the needs look different for each individual, says Sangita,
Despite the challenges, Sangita looks to the future with hope and she believes that awareness of autism and NPF will increase as more people are diagnosed and the demand for knowledge increases. She hopes that it will be easier to get access to the training that ACN offers all over Nepal and that the knowledge and commitment will spread further. When asked what she believes is the most important thing to create change, she answers confidently:
-Acceptance is the most important thing, without that we have nothing.