Autism is a neural developmental disorder characterized by impaired social interaction and communication, and by restricted and repetitive behavior. The symptoms become apparent before a child is three years old. Autism affects information processing in the brain and it is not yet well-understood condition of the brain. It is said to be not curable but the symptoms are manageable with proper interventions. It is one of three recognized disorders in the autism spectrum (ASDs), the other two being Asperger syndrome, which lacks delays in cognitive development and language, and pervasive developmental disorder, not otherwise specified (commonly abbreviated as PDD-NOS), which is diagnosed when the full set of criteria for autism or Asperger syndrome are not met.
I did my internship in Autism Care Nepal last year in March where I met children with autism in the day care facility. It was wonderful to see the children and how they behaved as if they were living in separate worlds within the same space we all shared. I did an interview with Ms. Sunita Amatya for this blog. Here it is, on the occasion of WORLD AUTISM AWARENESS DAY, with love and respect for all the children I met there:
Sujen Man Maharjan (SM): Namaste! Let’s start with the introduction.
Sunita Amatya (SA): Namaste! I am Sunita Amatya. Professionally, I am an anesthesiologist working in BhaktapurCancerHospital. I have five years old son with autism. He was diagnosed in 2008 and since then, I am also working in Autism Care Nepal (ACN). I studied in Bharatpur Hosptial and I stayed in my college’s campus and I had a lot of pediatricians around me. I did not know about autism and none of them ever told me about it even when my son was living with it. Autism was very new thing and still a very new thing in our society. Even being a medical professional does not mean they know about autism, even pediatricians are very unaware about autism in Nepal.
SM: How did it feel when your son was diagnosed with autism? How was it like when your son was growing up?
SA: He was very regular child in my sense at that time. Every other developmental milestone was attained on time, walking, running, he even did have few words when he was nearly 11/12 months old. When he was around 2 years old, I realized he was different from other children. As we were staying in hospital campus, there were other children of his age. He was very different from others, he was very indifferent to us, he was not that attached to others, he was not interested in playing toys, playing with other children, he was interested in doing only what he liked. Rather than playing with toys, he would pick up an object and keep running the whole day. He watched tv all the time. I noticed the difference in him. When I talked with the physicians, they said there is nothing wrong, he should be fine, there is some sound he is making and some words he is speaking so he should be fine. After coming to Katmandu, one of my friends suggested that I should see the psychiatrist. Then, I went to see him and when he uttered the word autism, I had no idea what autism was. It was completely new word for me. That day when I came back home and checked on the internet, I saw clearly the signs and symptoms of autism were there in my child. It was like a big nightmare. I did not know what was happening. All of the sudden, I felt like I lost my son and there was a new child.
SM: so it must have been very difficult experience for you.
SA: very, very, very difficult experience. I was totally helpless. The doctor just diagnosed him with autism and said he needed the occupational therapy. There were no centers related to autism in Nepal. That’s how our journey began. I went on searching in the internet. I had no idea what occupational therapy was. I did find the occupational therapist and took my son couple of times. But I did not find it being very helpful. Then I went to meet the person who had a child with autism and he suggested that there is a very good center in India. So, I went there and took the training.
SM: When did it occur to you that you should start Autism care Nepal?
SA: when I went for parents’ training in India, I knew something similar should start in Nepal as well. What I suffered and what others suffered is completely bizarre. You cannot imagine knowing your child has a problem but you do not know how to help your child. We don’t have even the basic services, we don’t have place to go and talk about it. It is a very critical situation. At the same time, I met 2 other Nepali parents there. And when we came back we decided we would get together and start something. We had couple of meetings and by that time we came to know Autism care Nepal was being registered by one of the parents. We meet and found all of our goals was same so we decided to get together and we started Autism care Nepal. We rented the space, we are still in the rented house. We did not have funding, we started from the scratch. And basically after coming back from the training, we just remodeled what we learnt there. We got together few other children with autism and that’s how we got started.
SM: it was registered in 2009?
SA: it was registered by a parent in 2008 April 2nd on Autism Awareness Day. But the activities and services of Autism care Nepal started only in 2009.
SM: how many children have benefited from the services here so far?
SA: we are getting more and more children now. We have registered over 200 families (inside and outside of Kathmandu) who have visited us for consultation. We are also providing the parents training since 2009 and we have completed the six batches of training for parents till now. With each batch, we have five to six mothers who are trained.
SM: I noticed that there are some children who have been here since the beginning of ACN. What are the changes that occur in the children over time under the supervision of special education?
SA: It has been proved that the early intervention for children with autism is very beneficial. It brings very good prognosis so, it depends how early how the children was diagnosed and received the intervention. If you look at autism spectrum, no single child is similar to others having autism. They are all different. They all have similar difficulties, communication difficulty, social difficulty, and inflexibility in their behavior. So, their development depends upon their own potential, how they have been provided with the therapy or intervention. So far there has been a lot of improvement, there are children who are now going to the regular school, pre-school. However, there are also kids who are developing slowly. I should mention frankly, our teachers and parents are also improving so, things are going side by side. We are learning each day. All children are different but all parents have improved. It is difficult to say subjectively how much and how but all of them are improving. Being able to take care of them is like blessing for the parents. You cannot imagine how difficult it can be with multiple roles and responsibilities and at the same time you have a child with autism to care of. Both children and parents are improving but that’s not the end, there are a lot of space for more improvement.
SM: as we all know, we human beings are different and unique so, it’s natural that the children are also developing on their own pace.
SA: yes, they are all different, they feel differently. Autism is core impairment in communication and inflexibility of certain behavior but they all are able to learn. It is just that they have different way of learning.
SM: you said you did not know about autism before. I believe it is true for many of us in Nepal. What is the situation like in our country?
SA: the prevalence is very high but we don’t have the national data. But we do follow data given by center for disease control and prevention in US, they say it has similar pattern worldwide, 1 out of 110, more in boys than in girls. Keeping that in mind, we suspect there are many persons with autism in Nepal. After massive awareness programs we have been doing, more and more people are coming to know more. There are also more people coming outside of Kathmandu to learn about it. We estimate there might be 2 to 3 lakhs out of the total population.
SM: definitely we lack the proper data. You said for a child to get the diagnosis on time is helpful, the parents get to know how to intervene properly but on the other hand, what could be the disadvantages of the diagnosis?
SA: definitely, at first when the child gets diagnosis, parents don’t know about it so, they think it is a disease. So, they visit doctor to doctor for the intervention thinking that the child will be cured. It is very critical that the parents get the clear message that autism is not a disease, it is a condition, developmental condition of the brain that as long as person remains, it will be there. It is a life long disability. Yes, it is very difficult when they come to know gradually what the autism is like. The disadvantage of diagnosis is mother being blamed for having such children, not taking care enough of the child. It might affect the parents relationship and put them in more stress. There are the scenarios in our society. I don’t know if we call it disadvantage but the parents come to accept that they have to live with this condition of the child as long as they live. There is economic burden, emotional bonding problem and lots of issue parents go through.
SM: they might be very hopeless as you said. This is a special condition of the brain, pervasive developmental disorder. Is there a possibility because the child is diagnosed with autism, parents lose hope and don’t expect much from them.
SA: it is possible. When parents have more than one child, they might think ok this child has got autism then, why spend more resources on him, let him be. They might have low expectations on the child which might negatively affect the development of the child. We have seen this kind of situation. They don’t put efforts for this child with the problem. So, the child will be lagging behind. I would say it wont be worthless to start intervention for the children, it makes the difference. earlier the better like before the age of six, as soon as you notice something remarkable in your child falling in the autism spectrum, it is wise to start as soon as possible and that comes with the diagnosis, so it is very crucial. For that, awareness is very important.
SM: how do the child develop as an adult?
SA: yes, children with autism develop as an adult with autism. As a child, there are little social demands on him or her, they understand they are just children but as they grow older, there are more social demands on them. Most difficult part for adult with autism is, physically they are okay, autism is invisible, just seeing a person or talking there standing you cannot figure it out but they have difficulty in social adjustment. It is difficult for both adult with autism and the family to see him act differently in the public. People will think they are rude and violent, not understanding the condition they live with. Also in teenage, physical and emotional needs are the same but because of the social deficiency they cannot make the friends. They cannot initiate and maintain the friendship. They cannot get in a relationship they want to and that’s really frustrating. So adults with autism go through a lot of frustration and depression. That is very painful and difficult to handle.
SM: there are a lot of challenges in adult life. We have seen the individuals with autism with special talents in particular areas. What is it like here in ACN?
SA: yes, it is called savant talent. Nearly about 10% of people with autism are highly talented. As the kids are very small, we have seen it yet. We don’t know among them who will show such kind of talent in the future because it is very difficult to predict what the child will be able to do or not do in the future. It depends upon how they progress, what kind of environment they get. There are some individuals who are not in ACN but are in touch with us who are extraordinarily good in mathematics, in solving puzzles. So, we have to really wait and watch. We just don’t know yet.
SM: let the time unfold the talent and possibilities for these children. What are the differences compared to the point of time you first came to know about autism and now that you know pretty much about it?
SA: Over time, I have realised autism is too complex. There is a need for more awareness and education related to it so that people understand about it and become able to help the people living with autism.
SM: let me share my own experience of coming here and meeting these children. I have learnt more about autism by visiting here and interacting with them rather than reading the textbooks. I think ACN is doing a very good job. It is wonderful to see how each child is unique and behaves so differently as if separate worlds exist for them at the same time. What are the future plans of ACN?
SA: right now, we are able to provide basic services, there is a lot to be improved and a big space for growth and further development. We need more resources, infrastructure and people. We really want to tie up with the government because just being an NGO it is very difficult. We don’t expect government to do all but at least if we could have some kind of official relationship and they would acknowledge what we are doing, that would be great thing for us. We are working towards that. We are also working and taking part in constitution making to ensure the rights of people with autism. And we definitely have plans to start vocational training center for our children which they will need when they grow up. At the moment, we are focused on children-specific services. And as a parent (very much same for all parents with such children), we are very much concerned what will happen to our children when we are gone. We have to plan for the residential house where they can live with dignity even when they don’t have their parents. That is a very big goal we have in our heart, that makes us work hard and motivate us to make that dream come true. ACN will always stand for them, we are up to work more and more.
SM: the point you mentioned before, the official recognition from the government is also very important. I think I have asked you the questions I had in my mind, is there anything else that you would like to share with us (in the blog)?
SA: autism is not rare case anymore. People are recognising it more and more, before we did not recognise it so, we thought it did not exist. More and more people are knowing about it. People with autism are wonderful, they are differently-abled people. They have learning difficulty but they learn in different way. they have a lot of social issues, they don’t understand the way we behave, and what we do. But they can learn to adjust themselves among us as much as possible. We have the culture, the way we eat, the way we act, the way we do things. Similarly, autism is a culture, they have their own ways of doing things, and a way of being. So we have to respect them, the way they are. We cannot expect them to be normal person, that’s impossible. It is a life long disability. We can change ourselves to accommodate them and they will try as much as possible from their side. it is like going to foreign country, you stay here for 20 years in Nepal and you go to other country, you have to learn their ways and you try to be like them but in heart you are always Nepali, it is similar. The people with autism might learn to be like us as much as they can but they are still with autism. Person of autism will never be free of autism. They can live normal lives if we can accept them and accommodate with us. Acceptance is great thing,
SM: so instead of trying to change them, we need to change our attitude and accept them as they are.
SA: we have to respect their condition and accept them, we must learn to adjust with them.
SM: thank you very much.
(35 minutes interview in English, transcribed as expressed in the interview, all photographs taken by myself during the internship. thanks to Raj Kaji Prajapati for the arrangement and support, thanks Ms. Sunita for her time and I appreciate the important work she is doing along with many other parents).