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Taking good care, The National 29.04.2009

A recent beach clean-up helped promote awareness about autism. Jo Wadham reports

“Maybe we’ll find some treasure,” says Fiona Margesson, encouraging her 14-year-old autistic son, Gavin, to pick up litter on Al Mamzar beach in Dubai.

Dubai Autism Center invited students, their families, and teachers to join the clean-up last Wednesday. The event was organised by the staff at City Centre Hotel and Residence to mark Earth Day.

In the morning sunshine, the children, their families and carers, together with about 30 City Centre Hotel employees, comb the sands looking for rubbish to put in their black plastic bags. Parents walk hand in hand with their children explaining the importance of looking after the environment. Some kids break away for a paddle, unable to resist the lure of the cool water. The idyllic scene belies the difficulties these families have being accepted as part of the communities in which they live.

This month, DAC launched the Third Annual Autism Awareness Campaign. As Sara Baqer, DAC’s community service unit co-ordinator, explains, “Our first campaign was to spread awareness about autism. Many people did not know what it was and the seriousness of the disorder. One in 150 children are diagnosed with autism. The second campaign was more, ‘we told you about the statistics, now let us tell you about the characteristics’ – what parents should be looking for.”

This year’s campaign addresses how the community treats children with autism and their parents. “Society can be very judgemental on parents,” Baqer says. “People think they are not bringing their children up properly, and that’s why they are naughty. We want to help integrate them in society. Whether they are in the parks, in Ski Dubai, going around a mall, these behaviours are OK, so accept them. This is just a child with autism.”

Margesson is full of praise for DAC, which Gavin has been attending since 2006. She is particularly encouraged by the beach outing. “It is good to get out and do ‘normal’ things. The more we are out in the community, the more commonplace it will be to see autistic children around, and the easier it will be for Gavin, and, selfishly, me. The hard part is when others judge. Gavin can be very noisy. You know when he is around.”

For parents, taking autistic children out in public places can be traumatic and difficult. They endure stares and comments from other children and parents. There are also practical challenges such as dealing with a teenager who cannot go to the bathroom on his own.

Hana Awad, whose seven-year-old son, Yousuf, has been attending the centre since he was two, says she worries about going out in public with him. “I feel anxious about how he will behave, how people will look at us. In general, parents of autistic children find it stressful. They worry about what they will do if the child starts screaming, rocking and disturbing others.”

Awad, who has two other children aged five and 11, finds that she has to explain Yousuf’s behaviour. “At the beginning, I was happy for people to think he was naughty, but now he is bigger and I can’t get away with it, so I explain that he is autistic, that they will have to bear with us.”

Autism is a life-long developmental disorder that affects the way an individual communicates and relates to others. Many diagnoses occur when a child is around 18 months old, but depending on the severity, autism can go undiagnosed for years.

According to the UK National Autistic Society, people with autism experience three main areas of difficulty: verbal and non-verbal communication, social interaction, such as understanding and expressing emotions, and social imagination such as predicting other people’s behaviour. Problems with social imagination can also mean difficulty understanding abstract ideas, like danger and a dislike of unfamiliar situations.

The cause of autism is not known, but it is thought to be a mixture of genetic and environmental factors. Although there is no cure, Baqer points out that an early diagnosis is very important, as intervention can help a child learn to cope and the parents adjust.

Some classic signs of autism, Baqer says are: “flapping hands, rocking, no speech or gibberish, a loss of speech or behavioural problems.” She says a seemingly “normal” child can reach the age of 18 months and then “turn 180 degrees, as if they are not in this world, as if they have suddenly become deaf or blind.”

DAC is a non-profit organisation founded in 2001. It has 43 students, between the ages of four and 21, and 50 staff members, including 10 professionals. Eleven classes take place five days a week. Speech therapy, art therapy, and occupational therapy also are available. There is a waiting list of 180 children and new, larger, premises are being built. “It will be a gradual expansion,” says Baqer.

The centre also runs a family support group on the first Thursday of every month. Following a diagnosis of autism, “there is trauma, shock, denial and acceptance,” says Baqer.

Iman Younis, the mother of Ahmed, who will be seven next month, remembers what it was like to be told her son was autistic. “My life completely changed. I was a pharmacist. All your projects stop and you think about how to help your child. I read every book, tried every therapy for him – quantum therapy, auditory integration training, I put him on gluten-free and then casein-free diets. The experience of other parents is helpful.”

Marjorie San Juan, who works in City Centre Hotel’s marketing department, says the company’s desire to help the environment dovetails neatly with DAC’s campaign to involve autistic children in society. “I knew it was Autism Awareness Month and thought maybe we could join up and do the clean up drive together. It’s good. We are hitting two birds with one stone.”

With the beach looking considerably tidier, the children and their parents join the hotel staff for a picnic under the trees. There is not a huge amount of interaction between the employees and the autism group, but these things take time, and the staff undoubtedly learnt a little about the care and time it takes to look after an autistic child. For the parents, it was an opportunity to bring their children out in an unthreatening environment with other parents and teachers. 

Younis takes Ahmed by the hand. “He likes to go out to open spaces: parks, the beach. I take him out all the time.” She takes a deep breath and draws herself up. “I like to face it. Just go and it will be OK.”

For more information on autism visit: www.dubaiautismcenter.ae, www.nas.org.uk

or www.autism-society.org

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