Mariam Al Tunaiji always believed that her son had a bright future. Last Wednesday her faith was rewarded. It was the day when her nine-and-a-half-year-old autistic son was admitted to a regular school and was finally able to mingle with children of his own age.
Mrs Al Tunaiji has been fighting for her son Mayed ever since it was discovered he had Autistic Spectrum Disorder. From the start she wanted him to go to a regular kindergarten instead of spending his childhood in an autism centre.
After pleading with the kindergarten’s head teacher several times, she got approval to take up a place – with the condition that he would be accompanied by a nanny. Mrs Al Tunaiji also employed an autism practitioner.
Mayed’s story begins with his uncle noticing dysfunctional behaviour at the age of one and an half.
The boy would hide himself in a corner, cry for no apparent reason, and also had speech issues.
At first his mother refused to accept there was a problem. But soon after, she began to investigate and educate herself on the subject of autism.
“To be honest, I was ignorant about autism,” admits Mrs Al Tunaiji, the mother of five.
To confirm a diagnosis of autism, a series of tests were carried out on Mayed, including an MRI scan and hearing tests.
“I took Mayed to a few autism centres and he underwent a few medical tests,” she says. “All the tests proved that he was fine.”
Next, a doctor suggested that she take him to Kuwait because of the rising incidence of the disorder there. A psychiatrist diagnosed her son with moderate autism. He prescribed several drugs, but she found that they were making Mayed drowsy and tired.
“It was disheartening to see my son suffer. I’d rather die than see him like this. Each psychiatrist recommended another. Where do I go with this innocent soul,” she says, recalling those difficult years.
As it turned out, the answer was on her doorstep, at the New England Centre for Children in Abu Dhabi, through the recommendation of a friend whose own son had been helped with his autism.
According to Dr Dan Gould, chief clinical officer at the centre, the true number of cases of autism in the UAE is not known. “In Abu Dhabi, there are currently an estimated 1,466 Emiratis of an appropriate age for a specialised autism programme,” he says. “By the year 2020 there will be approximately 1,655 children in the capital alone of an appropriate age for a specialised autism programme.”
The prediction for 2013 through 2020 was based on the current population data from the 2012 Statistical Yearbook and an estimated population growth of 3 per cent.
Mrs Al Tunaiji is among those who took an early step to help her son, encouraged by the centre’s reputation. “The centre didn’t diagnose him immediately. It took them around two months to get back to us with their empirical research,” she says.
Unfortunately there was another problem. The centre had no space for her son. But Mrs Al Tunaiji wasn’t about to give up. “I approached Sheikh Mohammed bin Zayed Al Nahyan for the sake of my son,” she recalls. “The moment I stood in front of him, tears began to roll.”
“Please help my son get admitted to the New England,” she recalls telling him. “He granted my wish. I am forever indebted.”
The following day she received some good news. At the age of six, Mayed joined the New England Centre. “I was floored by the hospitality and receptiveness of staff at the centre,” she says.
Now Mrs Al Tunaiji attends classes along with her son to improve her knowledge about autism. This is one of the methods the centre uses to help parents communicate better with their children. “Whatever I learn from the New England, I implement it at home,” she says.
One of the techniques she learnt to help her son is the use of positive reinforcement. “If you do this, I will give you that. There is a ‘benefit’ awaiting you if you listen,” she explains.
“His fast recovery is like night and day. My boy is smart and speaks English better than I,” she says. “He loves everything related to space and science.”
Thanks to the early detection of the disorder, Mayed is slowly winning the battle and is now in the 5th Grade at Omair bin Yousef Primary School in Baniyas.
Ten years ago, it would be hard to find even a newspaper article about disability, says Sharifa Yateem, a consultant specialist at the New England Centre. These days, there are even specially reserved parking spaces for the disabled. Awareness is everything, she explains. “With increasing awareness, more people are being correctly diagnosed. Parents, caregivers and communities are becoming more aware of it and are seeking treatment,” she says.
To know what it is really like to raise a child with autism, ask Kafia Al Kaabi. Mrs Al Kaabi has seven children and Ayesha, her nine-year-old daughter, was actually the only one of her children who seemed to have no health problems after birth. “For the first nine months, Ayesha spoke a few words like ‘baba’ and ‘mama’,” she says. “For the next nine months, she stopped talking completely. The light in her eyes went off.”
Like Mayed, she became seclusive and would burst into tears. The family did not know how to handle the situation. Again there were tests, including hearing, that seemed to show nothing was wrong.
“I took her to a speech therapist, she didn’t know how to deal with my child. Ayesha was uncomfortable around her,” recalls Mrs Al Kaabi.
Ayesha was one of the first pupils to enrol in the New England Centre. The mother calls the centre her “Harvard University”.
What Ayesha and other autistic children struggle with most is the opportunity to be treated equally by society on a wider scale.
“If only Arab society knew the daily challenge of parents with special needs,” says Mrs Al Kaabi, who writes frequently on the subject for Al Khaleej newspaper. “If you can’t fully grasp my situation, at least, respect it.”
Ayesha was a difficult case to handle. When the family went out for entertainment, other children couldn’t enjoy their time because of her behaviour. But today, Ayesha is a different person.
With help from the New England Centre, her teacher has made a schedule for Ayesha to go out with the family and enjoy her childhood like any other girl.
“Ayesha loves water and she learnt swimming at her school,” her mother says proudly, adding: “Nine years old, and Ayesha now knows I am her mother. Oh my lord, when I rewind that moment of my life, I am over the Moon.”
aalhameli@thenational.ae
