Confessions of fathers and mothers with autistic children

Autistic children are not well understood by society, are still discriminated against, and do not enjoy any priority, so parents have to "single-handedly" raise their autistic children.

According to Dr. Vu Song Ha, Deputy Director of the Center for Population Health Initiatives: In Vietnam, autistic children face many difficulties in life because services for them are still extremely limited. Vietnam has very few centers for autistic children. In addition, society does not yet fully understand autism, so there are prejudices, fears, and discrimination against autistic people. In particular, the State does not have any specific policies aimed at this vulnerable group.

"Single-handedly" raising an autistic child

Ms. Nguyen Mai Anh in Hoang Mai district (Hanoi) has a son named Nguyen Trung Hieu, who is 17 years old and has had autism since childhood.

Ms. Mai Anh and her autistic son

She said that for over 17 years, she has been raising and educating her child almost single-handedly, without any outside support. Many times she fell into a state of despair and gave up because she felt that no matter how hard she tried to raise her child, she could not escape autism.

She sought out other mothers in similar situations and sought advice from experts, which, combined with her boundless love for her unfortunate son, gave her renewed energy.

Ms. Mai Anh said that since childhood, Hieu was a very good boy, talented in painting and music. He helped his mother with almost all the housework. She assigned simple tasks or wrote down on paper the things he had to do every day, so Hieu could do them without having to be urged.

However, when he was 15 years old, entering puberty, he changed completely. First, Hieu lost weight very quickly, one month he lost 5kg. His personality also changed, he deliberately disobeyed his mother and did what she told him to do. What made her extremely afraid was that Hieu tried every way to hurt himself. He often used hard objects to hit his chin and face with great force, causing his face to swell and turn purple. Hieu put his hand into the rotating fan blade; lifted the table leg, put his hand in and then slammed the table down to hit it, sometimes causing blood to splatter...

“It was an extremely difficult time for my family. I had to use many measures to reduce the risks for my child. Now Hieu is 17 years old and has almost returned to his previous state. I understand that for autistic children, puberty is very difficult. The emotions and senses of autistic children are very disturbed, so he always looks for strong feelings to feel that he exists; has attitudes to assert himself such as not listening to his mother, proving that he is an adult” – the young mother confided.

Can't Understand Everything About Autism

Mr. Ha Dinh Long, an architect in Hanoi, also has an 11-year-old son with autism. When he first discovered that his son was not developing normally, he was shocked and it took him 3-4 years to get used to it and realize that having an autistic family member was normal. With that mindset, all difficulties he and his family will overcome will be easier.

Mr. Ha Dinh Long and Nem (Photo: American photographer Debbie Rasiel)

Talking about Nem, his son, Mr. Long shared: “It is very difficult to understand autistic children. Even my own child, I do not fully understand him. Autistic children are very special. Each child has a different manifestation, so to fully understand them, it takes a long time. The community still does not have a positive view of autistic people and their families. People only interact with autistic people at some point, so sometimes parents do not have time to explain, or even if they do explain, people do not fully understand.

“For example, while sitting at a coffee shop, my son grabbed the phone of the customer sitting next to me. I couldn’t immediately explain why my son was acting this way or that way. Many people might think that these parents are too indulgent with their children, or more negatively, they might think that I don’t know how to raise my children. This is one of the pressures that makes life more difficult for people with autistic children,” said Mr. Long.

Reporters met Nem at a photo exhibition about autistic people in Hanoi. It is easy to see that Nem is a very active boy, "always busy" and "ignoring" the curious eyes around him. In particular, Nem has a talent for painting and in 2014, he had an exhibition "Nem's World" with the message "Every child is a seed containing innate potential, blossoming thanks to love".

Mr. Ha Dinh Long admitted: “Drawing is a way for autistic children like Nem to relieve their stress, just like when we are upset, we go out to play or play sports. Autistic children have very limited thinking and activities, so Nem can sit and draw continuously. We have to understand and sympathize with that and try to create conditions for Nem to develop, and I always make him interested.”

Drawing is how Nem communicates with the world around him.

Worrying about the future of autistic children

What Mai Anh worries about is Trung Hieu's future. If it were a normal person, at the age of 17 he would be a grown man, even a solid support for his mother. But with Hieu, she still has to follow his every step, worry about his every bite of food and sip of water.

“I also think a lot about my child’s future. Of course, it depends on his abilities. Hieu has a talent for music and painting. That’s why I dream of opening a coffee shop and teaching him service skills. In the shop, I can put musical instruments for him to play for customers, or hang pictures he draws. In addition, I also have to teach him to live independently, such as going to the market, cooking, and taking care of himself so that when his parents get old, he can still be independent,” said Mai Anh.

For Mr. Ha Dinh Long, the future of autistic children is a difficult problem for everyone. In developed countries, whether autistic adults can take care of themselves and integrate into the community is still a big question.

Mr. Long said: “In Vietnam, I see that autistic people in the previous generation are almost forgotten. Now, mainly people of Nem’s age or a little older are considered autistic. I know that some mothers have spontaneous activities, forming groups. First, supporting autistic children, then orienting their children’s future. They can form groups to make products similar to those of disabled people. Of course, this requires support from the community. My child will probably be like that too, later he can join a group to make products to support himself.”

According to Dr. Vu Song Ha, the Ministry of Labor, Invalids and Social Affairs still considers autism as a part of disability. However, the documents are not clear and application is still difficult and challenging. Therefore, autistic people do not have their own regime or policy. Ms. Vu Song Ha hopes that in the future, the government will have more specific policies for autistic people.

A mother with an autistic child also said that when she went to the ward to confirm her child had autism in the hope of receiving policy support, she was told that "autism is not allowed" and that if it was, autism must be associated with a disability, such as autism with developmental delay./.

According to VOV