This summer I worked in Vietnam for an organization whose aim was to help the children of this country. The director of the organization knew that I am a psychology major. She assumed I was in school to be a clinical psychologist. It was partially my fault that I didn’t clarify that I am in undergrad, but she believed I was more of a professional than I really am. The point being that she set up a meeting between I and woman who was trying to organize a way to get help for families who were dealing with autism. This woman herself had a young son with autism. She explained to me about autism in Vietnam and how difficult it was to deal with autism.
She wrote me a letter that I have translated and I thought you would all like to see what it is like to live with autism in Vietnam for yourself. There are subtle cultural idealogies that I picked up while reading and you tell me if you find see them too. For example, autism is viewed as a “disease” and in the U.S we would avoid using the term “disease” to describe a mental disorder. So, here is the letter:
“In December 2007, I discovered that my son was autistic. Before this, I just recognized that he was slow to talk, and his other symptoms were considered “special” characteristics. Sometimes, he would be hospitalized because of normal illnesses but even when we saw the doctors they did not recognized nor explained to me his unusual behaviors. It was by chance that I came across information on the internet that the painful truth dawned on me-that my son had autism. I took my son in for an examination and a simple 20 minute test by the hospital concluded what I already discovered. The diagnosis for autism by the hospital did not seem so difficult-it only took them less than a half hour!
I wondered why they could not have discovered this earlier. Why couldn’t they have information to help parents who have children with autism? By the time a child who is three-years old and is diagnosed with autism the golden time to treat them has passed. The blame for the late discovery of a child with this disorder lies in the hands of the parents who are then strongly disgraced.
And now, at this time, I find myself asking what can any of the largest pediatric hospitals do for a child with autism and a hysterical mother? I took my son to a therapeutic based hospital for three weeks. The treatment was only a 15minute session per day-that is barely enough time for a child to stop crying in front of strangers! When I took my son to hospital for treatment, I could easily recognize that the facility was poorly staffed with medical officials and the materials were inadequate. Research on autism here has just started and I found that the hospital did nothing to help or improve my son.
I was displeased with the situation, but there were mothers who came to this hospital bringing their children from far away, and they became very bitter when they found out that the hospital could not help them. I can still remember the mother who came from Thanh Hoa with her two year old child. For two days she could not take her child into the consulting room because the child would burst into loud wails and struggle violently whenever he saw the doctors. He was scared of people who wore the white jacket blouse because of the memories of sometimes being treated and injected.
The reaction towards autism is always strong and obstinate. If the doctors would only take their white blouse off and come out, they surely could get in touch with that child. However, no one did that and the doctors would just say with a cold voice, “If you can not comfort your child, you take him to your home. We are very busy!”
The day I discovered that my son was autistic I also recognized that I was abandoned. Even though the rate of autism is 1/65 children this is not a concern for doctors or even educational institutions. There is no professor for autism, no program for treatment and no way to assess the level of the disease. No center provides treatment program that satisfy children as patients.
If you do not recognize on your own that you should be a doctor for your child, if you are not active in search of information on the internet, if you do not find parents who share the same experiences, and if you do not have money to pay for treatment which can last many years, then the golden time will past through and your child will sink into that disease.
Though there is a lot of information about autism on the internet. Each autistic child is a special case and he needs method and program that individually is created for him and his family. Parents are short of help from professors and it is hard for parents to learn the information on their own. Taking care of a strange child, researching information and finding those with experience, going to work to pay for treatment fee… I don’t understand how I can do all this in time.
Things that make me feel hurt and angry is that there are some people who exploit these difficult times to get profit on behalf of hurting the children and the family. These people charge high fees to treat disease, to train what they call treatment methods to bring to us false hope. I have gone to some centers that teaches autism however I am not impress by these clinics. These center are not much different from nursery schools but the children don’t have contact with each other. There are individual lesson for each child, but teachers who train the children are impatient and are not thorough. Children may be advancing in awareness a little bit, but almost all of them are not advancing in communication between friends. Teachers feel tired because they manage a class full of children who don’t obey anyone.
I choose to let my son study at a normal nursery school and invited a teacher to come home to teach him. The teacher comes home to teach awareness for my son. I teach him communication and the school is place he “practices”. This may seem simple but it is a very difficult arrangement.
At nursery school, it took me many days to convince the teachers, to explain to them about autism, and tell them what my son needs help in. The teacher accepted him happily, but I became dizzy when this teacher called my son names. She talked to many parents about my son. I also know two other autistic children studying at 1st grade and talked to two teachers who teach them directly. They recognize the unusual thing and want to help them but both of them ask me “So, what happen to them?”
If there is a day, no, just an hour, an hour of education to learn about autism as part of their curriculum to read a short document about autism this will spread knowledge of autism. If there were such a case this would help hundreds of autistic families who for many years. We just want one minutes of an “hour” to talk to say we need help like a person sinking in the bog that needs a hand from a stranger.
Maybe there is someone who would ask the question, why don’t we open a special school for autism? Parents can do that and there have been some schools like that opened, but this is a final solution. Autism is a syndrome and the world of the autistic is unusual and special. To treat autism, we need to create chances to help them come back into this life and function in our society. Can a mother create a normal world for her son? Of course she cannot, that is beyond her ability.
Now my son is five years old. The first stage has passed with struggle and by trial and error. I wonder what to do next. On the internet I read stories about miraculous recovery of some children in America and Europe. Children are followed and treated by professors for many years. There are more than 40 lessons in a week and they apply lessons that are designed for the individual. In Vietnam, I have found new documents and have attended some speeches by foreign professors but to apply what I have learn to my son is still far away. I have read about the RDI method and I am eager to learn more about this and have recognize that my son needs this type of approach. However, the language barrier and the shortage of professors who come to Vietnam to give consultation and explain these methods are expensive. Moreover they never stay long enough to help.
All children know how to talk and say what they want to their mother. All of them are very excited to play with their friends and they feel happy when they receive education to live in this world. But for our autistic children it is hard for them to do those simple things. To help my son I try my best. I can climb a mountain only to come to another mountain that autism has built. Sometimes I feel it is over my ability to help my child. I feel the roads is too long and the mountains are too high. I really want to shout at “I need help! I really need help!”