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MAURITIUS Thursday, April 21, 2011

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AUTISM, according to the medical definition, is a developmental disorder that appears in the first three years of life, and affects the brainʼs normal development of social and communication skills. In Mauritius, there is no reliable data on the number of cases. According to Geraldine, one percent of the population is supposed to suffer from this condition. “Unfortunately, there are no statistics available from authorities for autism. Our association is in contact with some 300 such families

DEVELOPMENT DISORDER

but I am sure the number is much higher,” she tells NEWSNOW. This is backed up by Dr Joffrey Bodet, a psychologist attached to Association des Parents des Enfants Inadaptes de Maurice (APEIM). “One out of every 1,000 children is autistic. This is the international norm of evaluation. In Mauritius I believe there should be over 5,000 patients, both children and adults, suffering from autism but they are not registered anywhere.”

Yasmin and Ilyas
‘I cannot talk for others but when it comes to me, I know that my future plans cannot be dissociated from my son’s future. I will make sure he gets all the love, attention and care I can give him’

“We had gone to South Africa on holiday and we consulted doctors there.” Yasmin then decided to take things in hand and started digging for the appropriate information. “That was not easy. As it is, as parents we are already very vulnerable in such circumstances. On top of that there was no appropriate structure to advise us… it was not easy.” Then fate took a positive turn. Says Geraldine “One day I took my son for a haircut at the hairdressers. There I heard one of the hairdressers talking about Yasmin’s son. I approached her and requested her to put me in contact with Yasmin.” The two mothers met and despite their different backgrounds, they formed an instant bond. “We talked about our sons and since the two are of the same age, it was very easy for each of us to understand each other. “After many months I had finally found somebody who understood me and who, like me, did not want to hide my son from the

world. He is as human as anyone of us. It’s just that he is unique – not different. He is unique. “And his uniqueness makes him the more lovable and unfortunately more vulnerable,” says Geraldine. After their first contact, both Geraldine and Yasmin decided they had to do something positive. That was the birth of Autism Mauritius. “We started talking in our own circles and looked for parents who had children like ours. In less than two years – the association was co-founded by Yasmin and me in November 2009 – we have been able to group some 24 parents, that is 24 children,” explains Geraldine. Since April 2, following the media campaign for World Autism Day and the week of activities that the association organised, many more parents have come forward. “We now have 32 couples, that means eight more children. But I am optimistic that many more will come forward.”

Both Geraldine and Yasmin believe that when parents discover they have autistic children, it is the parents who need more support than the children themselves. “The parents must have the necessary support and encouragement for them, in turn, to be supportive and loving to their children.” Geraldine says in her case, her husband has been “just wonderful”. “He has been constantly present and very reliable. As a mother, I have more than one time given way to my grief and cried, but he never showed his grief. He keeps everything inside while still being very supportive.” The same applies to Yasmin’s husband, Iqbal. “He understood that this is not something that we asked for and he is very attentive to Ilyas’ needs and demands.” However, says Geraldine, one thing that a family tends to forget is the effect it has on brothers and sisters. “Even today my heart aches for Anais. I feel that I have missed her childhood,” says Geraldine. “She was deprived of the attention and love that she needed at that time.” When Evans was born, Anais was barely four, an age when she needed cuddling and special attention just like any other child. By the time she was going to primary school, her brother had been diagnosed as autistic. “I feel I have not been there for her like I should have been. This is maybe a regret that I have and that I will carry for some time,” Geraldine adds. But she stresses the love and special bonding that unite both Anais and Evans. “She is very protective of him, though he can sometimes give her a very rough time. He would, for example, tear pages from her story books to make paper boats and this gets her mad. He sometimes plays roughly with her. He is not to be blamed as he has no

The struggle to make life better for the children

notion of what can or can’t hurt her.” To compensate for the “lost” time, Geraldine regularly takes Anais out. “This is something I cannot do with Evans, so I make the most of it with Anais. I try to make up for her lost childhood.” For Yasmin, it is the same situation with daughters Zainab and Sakeenah. “Both sisters now understand Ilyas’ condition and they make sure he has no stress.” In fact Ilyas, unlike Evans, is not too hyperactive. And unlike Evans, he can talk more. “I mean, he will not be able to make a complete sentence but at least he can make himself understood.” Both Yasmin and Geraldine deplore the lack of appropriate structures to accommodate such children.

“I had to send Evans to a ‘normal’ kindergarten and didn’t help him much. Now he is in a special school and since last year he has made remarkable progress. I know of other parents who have to send their children to private specialised schools, but the fees are expensive so they not accessible to all parents.” Geraldine and Yasmin are both gnawed with concern about the uncertain futures facing Evans and Ilyas, “I will now say something that can shock many parents. But I think I must say it and I know it must be the same feeling that Yasmin has deep down her heart... “I must be the only mother who wishes that her son leaves the world before her…” cries Geraldine. “While I am here, Evans will lack for nothing. He is my son, I will never abandon him. “I keep thinking about what will happen to him after me. People can say they’ll be there for him, but how can I be sure? I will not be able to go if I know I am leaving him behind. In fact, I refuse to go before him…”

Kindergarten