A Mother’s Story from Nepal
Our journey with autism began in August of the year 2008, nearly 22 months ago. Before that time, I was a complete stranger to autism. I have to admit that even as a medical professional myself, I didn’t know about autism.
At that time, at the suggestion of one of our colleagues, we took our son to see one of our psychiatrist friends. Following our interview with him, he said that it seemed to be autism. I didn’t know about autism, so I returned home quietly and then sat on internet looking for information about what it meant. To my despair, all of the signs and symptoms of autism described were exhibited by my son. I couldn’t believe that such a severe thing was happening to my son, and I was not ready to accept the diagnosis.
We then met with a child psychiatrist. I was desperately hoping that he would tell me that my son was ok, but he reconfirmed that my son had autism. It was on 28th of August 2008. I felt as if my heart stopped beating, as if I were dead at that moment. But I knew he was right.
All of a sudden, I felt that I had lost my son. All of those beautiful and interesting characteristics and behaviors I noticed him engaging in (including different toe movements, attachments to objects, ways of playing with toys, spinning objects, etc.) were not his actual unique characteristics and behaviors, but were a result of him being trapped by autism. All of a sudden, I felt that I was with a completely different child.
After the doctor gave us the diagnosis, he didn’t have proper ways to show me what to do next. There was no center, no school, and no support group at that time. We didn’t have a centre to tell us what was best for us, and there was no parents group like today with whom we could share. It was complete disaster for us, and it was a very devastating situation for our whole family.
A friend’s relative had a son with autism who was doing quite well. I was very happy I met them, and they gave us lots and lots of information. They made me feel that if you tried hard, there was hope.
We then went to nearest centre in New Delhi, India called Action for Autism. We attended a workshop followed by training which helped a lot. Their trainings help parents understand autism and teach them how to handle and how to work with their children with autism.
After doing applied behavioral analysis (ABA) therapy for some time, my son has improved himself in many different ways. He can ask for a few things that he wants. He is toilet trained. I’m very proud of him and of his achievements so far. It was not only hard work from my side, but from his side as well.
So far I have learned that if you work with them, children with autism will definitely improve. We should have faith and hope, and we should trust in our children’s potential. This isn’t an easy journey for any of us, but it is the path that God has chosen for us to follow.
We got some other parents of children with autism together and started what is now called Autism Care Nepal (ACN). Autism Care Nepal was founded on April 2, 2008 on the auspicious occasion of World Autism Awareness Day. It is the only active autism organization in Nepal that is run by passionate parents who care for autistic children. ACN provides support and information services to persons with autism and people who work with autistic children in Nepal.
Currently, educational policies and strategies in Nepal do not sufficiently address the needs of school-aged children who are differently abled. We wish to work with organizations worldwide to share information and resources to assist families and children at a national level, and we look forward to continuing our contact with families and professionals worldwide. We intend to educate the public to increase awareness and advocate for the rights of autistic children throughout Nepal and hope to contribute to the achievement of Education for All goals and Child Rights.
Individuals with autism have normal life spans. Our child with autism will someday become an adult with autism. In the Western world, governments are spending a lot of money on autism. It is the duty of parents, communities, and national governments to help our children with autism in every way possible. It is our duty to help our children with autism to lead happier lives and become more independent, which will result in reduced economic and physical burdens on families and nations.
Sunite Maleku Amatya
Autism Care Nepal
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.