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Coping with autistic spectrum disorders

Dubai - One family's struggle and journey with high functioning autism spectrum

A mother's instinct and desire to see her special child not being a misfit in the society is what keeps Uzma Akser going each day.
The journey started since Talha, now seven, was born and it had not been an easy one. Since Talha's birth, the family had been struggling to understand why their son was different from other children of his age until recently when he was diagnosed with high functioning autism spectrum.
Uzma shares her experience with Khaleej Times in the hope of helping other parents who could be undergoing the same experience and are as confused as she and her husband had been at the start of their journey.
New to the UAE six years ago, Uzma and her husband Tariq Yasin were trying to cope up with the new place and an 11-month-old baby who was different in many ways.
"He had a certain fixation," said Uzma. "He was fixated with certain toys and objects. I noticed his repetitive behaviour and a lack of eye contact."
Talha was put in a playgroup but Uzma noticed that leaving that for another was problematic. "He had a great meltdown as if the transition was a problem."
Despite being a nagging thought at the back of her mind, Uzma swept her feelings aside. At three and half years, Talha started attending nursery but he wasn't meeting goals. He was shifted to montessori a year later that allowed him to choose activities that he liked.
"We thought this might help but it didn't and the teachers were concerned," said Uzma.
Talha exhibited proper verbal skills but lacked in social skills and also needed support in academia. "We had an assessment done and Talha was diagnosed with Social Language Pragmatic Disorder which meant that he had a communication disorder even though he was very normal with us," said Uzma.
By Kindergarten Two, Talha was struggling at school. "He was overwhelmed with the surroundings and the fact that he had to follow orders. He wanted to build always."
He managed to complete two terms in school but during the time, he lost confidence, didn't have friends and spoke only to his teacher.
"The worst was that he had become aggressive and this was something we could not believe and couldn't figure out because he was very different at home," said Uzma. "We needed to take a decision urgently and this is when we decided to home-school Talha last April."
It was not an easy decision for Uzma who is a lawyer by profession and had no experience in teaching. "The first day at home he was crying but I let him do that and also let him to play - he created and built while I researched how to make learning fun and interactive for him."
Soon after, Uzma's efforts at home schooling paid off after a special educator was hired to give one-on-one lessons to Talha. "He has become more confident since he left school. At that time, the thought of writing was even scary for him," said Uzma.
While Uzma suspected that Talha was special for a long time, her husband was in denial. "We didn't want a label for our son I guess and that is the reason we did not have a complete investigation done," said Tariq. "But now we understand."
In January this year, the couple finally decided to reach out for help. Dr Binu George, consultant paediatrician (paediatric neurodevelopment and neurodisability), King's College Hospital London, Medical and Surgical Centre, Abu Dhabi diagnosed Talha.
"Our lives changed after this diagnosis and I was actually relieved because I now had answers to many of my questions."
Since then Uzma has also found help from support groups on Facebook. "It's a whole community out there who have children like mine and are very helpful," she said.
A friend, Muna Sadaqa, helped Uzma meet the right people in the community.
"There is an FB page called Autism Support Network that provides support to people who have been touched with autism."
Uzma says despite the high costs of treatment, there has been enough support for her child. She also feels that more should be done to provide special children with extra-curricular activities and after school programmes.
Talha is currently with the New England Centre for Children in Abu Dhabi that provides training to teachers, parents shadow teacher etc teaching social, motor, self help, life skills etc to children with autism.
He will join school in September and will be followed by a shadow teacher.
asmaalizain@khaleejtimes.com
Tips from Uzma
> Build a team: Work with professionals such as psychologists, doctors specialising in neurodevelopment, occupational therapists, speech therapists, ABA therapists etc
> Social interaction: Select your environment carefully, assess what upsets your child or overwhelms him or her. Avoid theses places or even people.
> Talk to friends and family: If you feel comfortable talking about your child's condition let your close friends and family know in order for it to be easy for your child. I guess people become more tolerant and adapt better to why he or she is having a 'meltdown' rather than labeling them as a 'spoilt child' and you as a 'bad parent'.
> Best is to get a diagnosis: It is best to get a diagnosis as the parent will know how to handle meltdowns and to manage his or her surroundings well. You can also choose the right people who will support your child.
> If a child attends school then request an Individualised Education Plan (IEP)
> Take breaks as a couple. Autism is not going to go away, you will make progress but you need breaks