Living with autism

Living with autism
PHOTO: Living with autism

Ms Rachel Tan, 24, is like a third parent to her older brother Ryan, who is autistic. In fact, she admits to being his "discipline mistress" as Ryan, 26, tends to obey her more than their parents.

The human resource executive says: "Ryan knows my parents and maid spoil him, so he takes advantage of that. For example, if he dislikes something and throws it away, he will pick it up if I ask him to. But if the three of them make the same request, he will walk away."

Her mother Raleigh Tan, 53, says her daughter has always been mature beyond her years. Mrs Tan, an administrative assistant, is married to Mr Ronald Tan, 54, an army warrant officer.

The Tans, who live in a condominium in Pasir Ris, also have a younger son Reuben, 22, a national serviceman.

Both Rachel and Reuben were told from childhood they have to be responsible for their elder brother. Mrs Tan says: "We have always taught them that Ryan is different from their friends, so they need to take care of him and protect him in every way."

Diagnosed with severe autism when he was two years old, Ryan is unable to speak and communicates only through gestures.

According to Mrs Tan, "Ryan is totally dependent and needs someone to attend to him all the time. He has no self-help skills and cannot eat on his own".

She says: "We have gotten closer together as a family because of Ryan's condition. Otherwise, everyone would most likely be away most of the time because of his own busy schedule."

The family will be participating in this month's FairPrice Walks With U, a walking event organised by NTUC FairPrice for the second consecutive year.

Rachel adds fondly: "Ryan's like the sun and all of us are the planets around it. Whatever we do or whatever it is, we will always think about him and his needs."

How did you find out Ryan was autistic?

Mrs Tan: When he was a baby, he could say simple words such as "ma", "pa","apple" and "fish". It was only after he turned one year old that he suddenly stopped talking. We noticed something was wrong when he would not make any sound when we tickled or played with him.

How were the children like growing up?

Mr Tan: Rachel has always been the obedient one, whereas Reuben is more naughty.

Mrs Tan: But now that Reuben is older, he has changed, especially after entering the army.

Ryan is a happy-go-lucky child and has been easy to manage since young. When he throws the occasional tantrum, all you need to do is hold him, look into his eyes and count from one to 10 for him to calm down.

Rachel: Though I am the second child, I've always felt like an elder sister to both my brothers. The environment I grew up in forced me to be more mature for my age.

What was the toughest time for the family?

Mrs Tan: There have been a lot of tough times, but one of them was when Ryan developed epilepsy at seven years old. That was very frightening for us because it was the first time he had fits.

The fits caused him to fall and he had to be hospitalised for hitting his head. It was difficult because we had to find a way to look after our two younger children and also take care of Ryan in hospital.

Rachel: I was very young then but it was a major thing. I remember coming home from school and being told my brother was hospitalised.

The incident scarred my mum and she is very afraid it will happen again.

Were Rachel and Reuben always understanding regarding Ryan's condition?

Mrs Tan: Rachel was, but Reuben was not when he was younger. When he was in primary school, his friends visited us and they were scared of Ryan because he was laughing to himself.

So Reuben told our helper to take Ryan into the room and not let him out till his friends had gone home.

After that incident, we explained to Reuben that Ryan is very special and if his friends could not accept that, they could not come to our place.

Now both Rachel and Reuben will protect Ryan if people stare or say unpleasant things about him when we go out.

How do you discipline your children?

Mrs Tan: We don't cane our children.

Mr Tan: Most of the time, we use reasoning, such as telling them the consequences of their actions.

Mrs Tan: For Ryan, it's different. We have never scolded him. There's no point in scolding him when he does not understand anything. How do you spend time together as a family?

Mr Tan: Ryan does not go anywhere, so we often stay at home and accompany him.

Mrs Tan: We always have meals together as a family on weekends.

Every year, we will visit the zoo or Jurong Bird Park and take Ryan to nearby attractions in Malaysia such as Sunway Lagoon or Genting Highlands. He cannot take the plane because he cannot sit still for more than a few minutes.

Rachel:To a normal teenager, going to places such as the zoo or bird park repetitively every year is really boring. But we think about Ryan, so no matter how mundane it is, we continue our yearly trips because we want to keep him company.

If the parent-child roles were reversed, what would you do differently?

Mr Tan: I wouldn't do anything differently from Rachel and Reuben.

Mrs Tan: I would have done the same as my children.

Rachel: I'd probably be stricter with Ryan because they are spoiling him so much.

This article was first published on August 4, 2014.
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