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Miracle mum puts autism in the spotlight

Update: March, 26/2013 - 10:25
Hieu plays with his grandmother at his house. Love and support from his family helped Hieu by Nguyen Thu Hienovercome the challenges of autism. — VNS Photo Thu Hien

by Nguyen Thu Hien 

HA NOI (VNS)— Fourteen-year-old Nguyen Trung Hieu stares unblinkingly at the music sheet before him and gently rests his fingers on the piano. Then he takes a breath and begins to play, his hands dancing over the ivory keys.

He speaks conversationally over the sound of the music without turning back or looking downwards at his fingers. "I play this piece everyday. I call it Love."

His daily music performances (in which he also performs on the flute, guitar and harmonica) give him a platform to express himself in the clearest way he knows how.

Hieu has autism, a condition described by scientists as a developmental disorder affecting the brain's normal development of social and communication skills. With the endless support of his mother, Hieu is making progresses in overcoming what is incorrectly misunderstood by many in the country as a "disability".

Associate Professor Nguyen Thi Hoang Yen, deputy director of the Viet Nam Institute of Educational Sciences, says that the number of children diagnosed with autism in Viet Nam is on the increase. Her latest statistics show that the figure rose by 50 times between 2000 and 2007.

Lauren Elder, an assistant director at Autism Speaks, a US-based NGO, said that scientists generally agree that about 1-2 per cent of the global population is affected by autism, judging from available data.

According to experts this means that one in every 88 children in Viet Nam has autism.

Hieu's mother Nguyen Mai Anh recalls that when he was about six months old, she found him different from other babies who regularly cried out or burst into laughter. Her son showed no such reactions to the world around him.

"I felt my baby had no feelings and no response to sound and images. He was unable to babble as a one year old and he had no interest in playing with toys," she says.

"My heart was heavy with worry."

Anh took her son to the Ha Noi-based National Paediatrics Hospital for a check-up. They found no problem and suggested that he was just a little slower at speaking than others.

It was the beginning of a long and tough road for Anh. At that time doctors in the country had little knowledge about autism and could not diagnose it early on.

Road of patience

Anh finally had a stroke of luck when by chance she came across an encyclopedia about children's conditions which mentioned a developmental disorder matching Hieu's symptoms. She took him to a neurologist who finally confirmed a diagnosis of autism.

"We finally knew what the problem was but the disorder was too new for them to prescribe any treatment for him," she remembers.

Refusing to give up, Anh started researching autism and travelled to meet the family of a boy who had received treatment for the condition for over 10 years in many countries. Later she also found a class in which an American mother who had successfully treated her child shared her knowledge.

In those years Anh accompanied her son everywhere. She created colourful flashcards and other visual aids to teach him about his surroundings and created imaginative short stories so that he could learn conversational sentences.

Hieu's learning accelerated incredibly until it took her just two days to teach him things that before would have taken weeks. He soon learned to express his needs to others without crying like he used to.

Lauren Elder says parents play a crucial role in autism treatment, and if they receive training about intervention techniques they can have a positive impact on their children's behaviour and development as they grow up.

While therapists may see a child a few hours a week, children with autism require intensive attention which is best provided by family members, she says.

After several months of teaching him alone at home, Anh sent her child to a kindergarten and also hired an expert to tutor him for one hour every day. At the age of five years old, he could speak fluently. Elder says that this kind of team approach is required in order for the child to reach their potential, and both parents and teachers should be involved.

When he was seven years old, Hieu attended a mainstream school, but he failed to keep up with his peers.

After a year, Anh joined with five other mothers to form a special class for their autistic children. They drafted out the content of textbooks on their own based on the interest, personalities and level of their children and three professional teachers were hired.

When, four years later, Hieu began to pursue an interest in music, he left the class to devote his time to this.

"Music is the best way for him to interact with others and integrate into society. When people see him play, they do not even recognise his so-called ‘disability,'" Anh says.

Experts agree Hieu is lucky. Many other autistic children his age shut down their door to the outside world as they were never allowed to develop in the manner that they required.

Hanoian Nguyen Hong Van, 43, says: "I wish I could turn back the clock to start again with the intervention and treatment for my 16-year-old son."

Van's son, who has been sent to boarding treatment centres since he was seven years old, is now unable to speak or do anything by himself.

She detected his unusual symptoms when he was two years old but was too impatient to follow even the simplest measures recommended by doctors, such as teaching him to babble.

"We felt tired of his situation all the time. We let things pass by."

At the centres he also did not receive any specialist treatment because they said it was too much of a time commitment.

"No one is more important than the parents for helping their autistic children," Van now acknowledges sadly. "I wish we had had more patience."

Now, however, with every year that passes there is more and more support for parents, with 100 centres for autistic children currently open in Ha No.i.

Anh is optimistic about the future. "Parents must not give up. They just need to find the time to be with their children. Their sons and daughters are precious stones with a scratch. They need to fix this and shape them as perfectly as possible." — VNS




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