Abu Dhabi mother reveals tough realities of raising a severely autistic child

Maria Lami-In longs for more support to help improve her son's quality of life

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  Saud, 14, is severely autistic. He is cared for by his family, mainly by his mother. All Photos: Maria Lami-In

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  He had autism diagnosed after he started to attend school. He is no longer enrolled as he struggles to blend in with other children.

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  Saud with his sisters, Sarah, 15, left, and Shahana, 12. The girls are both 'aspie's', short for Asperger’s syndrome, a high-functioning form of autism.

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  Saud is largely non-verbal and communicates mainly through grunts and gestures. He is not usually violent but can be when he is frustrated, squeezing or biting his parents and siblings. He also chews on furniture, flushes things down the toilet and tears labels off clothes.

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  Saud with his mother and sisters at Expo 2020 Dubai.

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  Saud with his father, mother and sisters.

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  Ms Lami-In cares for her son all alone while her husband is at work.

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  The family cannot afford therapy for Saud but they dream of being able to help him to improve his communication skills.

If there is one thing Maria Lami-In wants people to know about raising an autistic child, it is that it is not the way it is often portrayed.

Her son, Saud, 14, is largely non-verbal and communicates mostly through grunts and pointing.

He is not usually violent, but he can be when he becomes frustrated, squeezing or biting his parents and siblings.

He also chews the furniture, flushes things down the toilet and tears the labels off clothes.

“All our furniture has been chewed,” said Ms Lami-In, who is known as MJ Maria on the Abu Dhabi Q&A Facebook group, of which she is an administrator, and other Filipino community groups.

“We have a joke that we have a beaver in the house. He chews and chews and chews. We are afraid for his health. But thankfully there seems to be an angel looking after this kid.

“Our clothes, no matter how nice they look, you will find holes in the neckline. It’s itchy for him. But even if they’re not his clothes, he will remove them.”

He does not understand the consequences of his actions, and once threw his father’s work laptop out of the window, because he could not operate it, she said.

“It’s frustrating. But what can you do?" said Ms Lami-In, who frequently has to stop to compose herself as she speaks of the challenges the family faces.

"This is your child. It’s no return, no exchange."

She loves her son and there are many happy moments. But the challenges feel relentless at times.

Ms Lami-In cares for him entirely alone while her husband is at work, without even a home helper to assist her or give her a break.

It upsets her that many of those associated with autism in the media, especially on awareness days, are the high-functioning type, who can hold down jobs and succeed on their own with a little help.

Autism affects about one child in 100, according to the World Health Organisation. It is a wide spectrum and estimates suggest about one in three people with autism have a severe form of it, like Saud.

Maria Lami-In works tirelessly to support son Saud, 14, who has a severe form of autism. Photo: Maria Lami-In

Causes of autism still confound medical world

Ms Lami-In’s pregnancy was uneventful, and Saud was an easy baby who cried very little.

He did start to go through the early childhood milestones and was beginning to make the "ma" sound when a kettle with burning water was spilt on him in an accident when he was about two.

All developmental progress stopped after that.

“Maybe a shock triggered it, but I don’t know. There are so many theories," said Ms Lami-In, who is half Filipina and half Chinese. The family have lived in Abu Dhabi for the past 14 years.

“All these years you think about it and you don’t share it. But you wonder, is it my fault? And when you get into an argument with your husband you think, was it his fault? Whose genes caused it? What triggered it?”

The diagnosis was made when Saud was six, after he started school. He no longer attends because he could not blend in with the other children.

Ms Lami-In’s two older children, both girls, have Asperger's Syndrome, a high-functioning form of autism.

Experts say the cause of autism is complex and not fully understood.

But genes are known to play a significant role.

Saud with his sisters. Photo: Maria Lami-In

“We don’t have a single cause of autism. We know for sure there are genetic factors which play a significant role,” said Dr Ioannis Delipalas, a Swedish Board-certified consultant in adult psychiatry at Thrive Wellbeing Centre by Dr Sarah Rasmi, in Dubai.

“For example, we know specific genes are involved in the development of autism.”

Environmental factors – although not vaccines – can also sometimes be associated with it, such as viral infections in pregnancy or exposure to heavy metals.

Treatment is complex. There is no cure and drugs are not effective, unless there are comorbidities to treat, Dr Delipalas said.

A mother anxious to help her son

Therapies can be effective and should be started as early as possible. Saud does not receive any therapy because the family cannot afford it.

But his mother dreams of receiving help to improve his communication skills.

“My biggest frustration is his communication,” she said.

“I am not so sure if it’s in that stage that something can be done with language skills. That would open up a level of safety for him to be able to express himself. He can say yes or no. Or he can say some things but not verbalise pain.”

Ms Lami-In dreams one day of being able to open an assisted living community in the Philippines for people with special needs, who are often hidden from view by their families.

“In my own country it’s even blamed on superstition and curses. Many autistic people back home, and even here, if you are not considered normal, you are automatically labelled abnormal.

“It’s something we have to deal with,” she said.