“Autism, what is that?”
It was about eight years ago when we first noticed that something was wrong with our son. He was 18 months old and started to speak. His first words included “mama”, “papa” and “chiam”, a word describing small geckos frequently found around the house in tropical countries. Around that time, he developed problems with toileting. It became worse and worse and was really a pain. Defecation only once every two or three days made the stool even harder so that toileting became a very painful experience, further discouraging the child from going to the restroom. We went to doctors in our hometown of Vientiane, the capital city of Lao PDR (People’s Democratic Republic). They knew what to do and recommended that we give orange juice to the child. The boy ate oranges by kilograms. Nothing changed. We went to Nongkhay, a city in Thailand just across the border. The doctors there also knew what this was all about and recommended more orange juice. No reaction. Other kids would have occupied the toilet day and night eating the amount of oranges we offered our son. We went back to the doctors and treatment went so far that the doctors checked his intestines, a very painful procedure for the small boy.
I started to search the internet for answers and the second medical website I opened gave a strong indication that this may be autism. I dug deeper into the matter and began to watch more carefully for any signs related to the disorder. We noticed regression in speech. The child who had at one point joked with us had not learned any new words recently and seemed to forget the old ones. He became very attracted to music and water.
Equipped with new knowledge and a sense of foreboding, we went back to the doctors and suggested that they think about autism as an option. They checked our son’s ears and tongue and concluded that there was nothing wrong. Most of them had never heard of autism and one started an argument with us regarding which of us was actually the doctor.
My wife consulted the older people who were around. Most of them tried to calm us down. “The boy is just starting to talk a bit late. You see the kids of Aunt X and Uncle Y? They were the same way and now they talk all day long. You best put a small frog on the boy’s tongue and everything will get better.” My wife sacrificed a number of frogs, and went further to the local shaman for incantation and other magic, but nothing improved.
We went further to Udon Thani, a larger town in Thailand. The pediatrician there spoke very wise words, enabling me to feel for the first time that I was on the right track. He said, “I don’t know what is wrong with your kid. I’m not an expert on autism, but I recommend that you go to Khon Kaen.”
Khon Kaen is a big town towards Bangkok. It has a large university and a medical center affiliated with it which contains a psychology ward specializing in children. This was our next stop to visit. After our third appointment, Professor Niramol invited us into her office. She seemed to be uncomfortable with having to explain to us what was wrong with our boy. This time, I could help her a bit. We were prepared for the diagnosis and were just there for confirmation.
The whole process from recognizing the first signs to receiving the diagnosis took us more than one year, a year lost for therapy. Unfortunately, having the diagnosis did not mean that people around us in Laos could provide any help. We traveled to Khon Kaen regularly to learn the basics of therapy. I ordered books from around the world, read them, and passed the new knowledge on to my wife. Often, she was not convinced that this was all we could do. Most people in Laos firmly believe that treatment must involve medicine. If the doctor does not prescribe some pills or give some injections, then the doctor is not able to deal with the disorder.
Next, Professor Niramol gave us addresses of some people in Vientiane with autistic kids who had also visited her ward and we went to visit them. Who can imagine how good it feels when one realizes that one is not alone in the world with a certain problem?
Some people from Thailand trained in special education and therapy also got our address and contacted us. They offered therapy, went from one family to the next, spending a maximum of two hours per day with one child. Progress was obvious.
Then, on Christmas 2006, disaster struck in Thailand. The tsunami which hit the coast indirectly resulted in autism becoming known to the larger public in Thailand and Laos. The Thai King’s grandson who died in the natural disaster was known to be autistic. The word was now introduced into the language of many Lao people, who had been watching Thai television every day.
This event did not change our situation, at least not immediately. Our kids, and by this we now mean the kids of families in our parent group, went to normal kindergarten and received additional therapy in the afternoon. In some ways, we wish it could have continued on that way for a longer time, but children grow and cannot go to kindergarten for their whole life. Finding a primary school which accepted children with special needs proved to be a hard task. Some did for a while, and then changed their minds. Others simply refused. Some accepted the kids but did not care about them or their needs.
So, we took the initiative to build a new house which would become a center for autism. The original idea was to concentrate family-based therapy in one place which would also provide the best range of tools and teaching aids, but the problems we faced in finding schools pushed us to go further. Now the Vientiane Autism Center is almost a year old. Currently, 12 kids from 3 to 10 years of age are enrolled and taught by six teachers, two of whom are from Thailand.
This is just the beginning and there is still much that needs to be done. At the present time, only wealthy families can afford the high price of appropriate therapies for their kids with ASD; however, autism spectrum disorders obviously do not focus solely on children of wealthy families. In a country with an average GDP per capita of about $ 800 dollars and about one-third of the population living on less than two dollars per day, very few are able to pay $280 USD per month, which barely keeps the center alive. We do not yet have an association which can help fundraise for the expansion of our center and provide support for kids from poor backgrounds. Of course, we would like to. We cannot afford to send Lao teachers for special education training abroad, although of course we would like to. But we did take the first step in that direction and we are very happy to hear parents say that their lives have become easier since they have enrolled their child in our center.
I almost forgot to write about what happened to our son. He attends a nearby primary school, accompanied by one of the center’s teachers in the morning, and is taken care of at the center for the rest of the day. Of course we love our son and we tell him so. Persons with ASD are said to have problems with emotions and they behave often more than strange. One day, our son almost drove me crazy and I was about to get really angry. He approached me, put his hand on my arm, and said, “Papa … love.” It was one of the happiest moments in my life.
Vientiane Autism Center
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.