Thirteen-year-old Sarah Qutob took her seat by the piano confidently at the Listen to Autism Beat event held in Dubai last year. As her fingers touched the keyboard, the melodious strain of Mariage d’amour drifted through the air. By the end of the performance, the audience had broken into a thunderous applause but her mother, Dr Hibah Shata, was struggling to hold back her tears.
Sarah was diagnosed with autism at the age of 15 months and Dr Hibah knew how much hard work and commitment her child had put in to perfect the piece that had just been played.
‘Sarah is my third and youngest child. When she was a baby, I always felt that she was distant and never had a relationship with me (unlike her siblings),’ says Dr Hibah. ‘When she did not speak in due time, it really set the alarm bells ringing. When she started to walk and I called her name, she did not answer or respond. I feared that she may have a hearing issue at first,’ recollects Dr Hibah.
But even as a child Sarah loved music and dancing, which made the mother conclude that her hearing was fine. Since autism was not a well-known condition back in 2007, Dr Hibah was clueless about what her daughter’s problem might be.
‘Once, my husband, Jalal Qutob, visited the Dubai Autism Centre with his company. He came back and told me that from what he had learned there, our daughter displayed symptoms of autism. We visited our pediatrician and he advised me to seek a psychologist’s opinion, and this is when I first learnt about autism,’ says Dr Hibah.
Autism is a neuro-developmental disorder that appears within the first three years of a child’s life and affects social and communication skills. In 2018, the US Centre for Disease and Control determined that approximately 1 in 59 children is diagnosed with an autism spectrum disorder (ASD). In the UAE, a 2017 report puts the rate of incidence at 1 in every 146 births.
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‘As soon as we found out, I started to read more about autism and the services that Sarah would need. I knew that we needed to find the right place to work with her, but at that time most of the services were offered for children older than three years and there were huge waiting lists in all centres. There were no early intervention services in Dubai or proper diagnostic centres. It was frustrating not to have support or to find any services to help my daughter. That is when the idea of opening a centre and finding a supervising agency came along,’ says Dr Hibah.
Dr Hibah graduated as a dentist from King Saud University in Saudi Arabia and went on to complete her Masters from the University of London and Fellowship from the Royal College of Surgeons in Ireland. In 2007, she did her Diploma in Business Planning from the University of Dubai and became European Foundation for Quality Management (EFQM) Certified in 2013.
‘Even though I have a fully operational dental clinic (the Dr Hibah Shata Specialized Dental Clinic in Dubai), I founded the Early Intervention Medical Centre in 2008 to throw light on the condition of children such as Sarah,’ says Dr Hibah who also serves as the CEO of the centre.
Autism Spectrum Disorder (ASD) presents differently in each child, but share a common set of symptoms or characteristics. These relate to reduced social interaction, social communication difficulties and repetitive behaviours. For some children, their difficulties are mild and relate to issues with communication and engaging with others. Other children will present behaviours that can be more challenging; including aggressiveness. The early symptoms parents often notice include reduced eye contact, limited joint attention, and language delays. Many children with ASD find it difficult to be surrounded by other children, be interactive during playing, or struggle to use their language functionally.
Some children may present with repetitive behaviours like flapping their hands or spinning in circles. Others may produce sounds that are not meaningful, or engage in ‘echolalia’, meaning they repeat things they have heard before. Many children who have ASD have difficulties with change, and transition between places or activities. Yet another common symptom relates to sensory difficulties that make them over- or under-sensitive to sounds, smells or bright light.
Dr Hibah’s centre helps children affected with developmental, cognitive and behavioural challenges and ASD, with individualised programs to each child.
They are also licensed as a training centre to offer parents, teachers and professionals the training they need to enable them to manage children and teach them new skills all the time.
When she started her centre, she found that many people were reluctant to say that they have a child with autism. The lack of awareness and the stigma and fear of the community made many families keep children at home without any services or education. ‘The first and most important thing I did was to talk openly about autism and give advice to families and promote the importance of early intervention,’ says Dr Hibah.
‘Our prime mission is to prepare these children with school readiness skills and support their inclusion in mainstream schools. In 2010, many children were ready for school but schools were not ready for them, so I established Child Learning and Enrichment Medical Centre to offer a learning day programme for children who were not yet in mainstream schools, ’ explains Dr Hibah.
In 2017, their third centre, Maharat Learning Centre, was established as a Behavioural Intervention and School Inclusion Support service provider to help children succeed in mainstream education. It was also designed as an alternative education centre providing students with education, social and communication and computer skills.
‘Today, we serve over 150 children across the centres and over the 10 years have provided services to over 3,000 children,’ says Dr Hibah with a hint of pride in her voice. And for the past 12 years, she has been relentlessly organising events such as the annual Listen to Autism Beat, awareness walks, TV and radio interviews to help support her mission.
The main impetus in Dr Hibah’s life to keep all these centres moving like clockwork is her struggle as a mother to provide the best for her child.
‘At the beginning when Sarah did not speak, it was difficult to understand her needs or what she wanted when she cried. I taught her to say ‘wawa’ so I could know if she was in pain. But even when she did, it was hard because I had to think of all possible reasons she cried as she could not communicate properly. I then started to use PECS (Picture Exchange Communication System) to help her communicate what she needed, and it was much easier, she started to speak at the age of 4 and kept on developing her language since then,’ says Dr Hibah.
Today, Sarah is in grade 7 at the Al Mizher Academy for Girls. Her favourite subjects are math and science. She thoroughly enjoys Art and Music. Her hobbies include swimming, tennis, going to the gym and boxing.
At the age of five, she took to the piano and has since played for many events like Autism Awareness Dinner 2014, Listen to the Autism Beat 2015 and 2018, We-Walk 2019, and at school concerts and talent shows.
Sarah is also an avid painter and for the last four years her art teacher has given her a wall to display her work. Apart from this, she makes movies and composes songs. She is currently in grade 4 at the Associated Board of the Royal Schools of Music. She also loves writing stories and journals.
‘Sarah has received the perseverance award from her school and many other certificates for her talents in music, art and sports and for her academic performance. She consistently works hard and studies the best she can in all subjects. She enjoys reading, exploring and learning new things. She forces herself to try new things and push herself to overcome her challenges, especially with loud noises and change of routines. She goes with her school on trips and amazingly enjoy all activities the girls are doing,’ says Dr Hibah.
‘She is a happy child and has an amazing sense of humour that makes her popular within her school and with friends. She gets along very well with her siblings. She loves to go out and enjoy playing in fun areas. She is disappointed when her favourite games are not working. Most of her disappointment stems from the fact that she has a plan and works hard towards it; when this changes, she is upset. But now she is learning how to cope and doing great so far.
‘It was difficult when some of her teachers kept pointing out her faults and ignored her strengths. I was lucky because this happened only with few teachers during her early school years. It was important for her teachers to understand how she learned and how she is motivated. As she grew, her teachers were amazingly supportive and recognised her talent and encouraged her creativity,’
In 2011, Dr Hibah won the Emirates Woman Award for Leadership for her persistent efforts in pioneering a path for autism rehabilitation. ‘It was the first award I received in 2011, and it opened the doors for me to learn about quality in management.’ Now she volunteers for Dubai Quality Group and participates in assessing organisations for excellence. ‘This is important as it inspires people working with me and help them see opportunities to be creative and innovative.’
A recipient of several awards, including the DHA Excellence Award and the Female Leader of the Year 2018 and 2019 DHCC Award for the Best Pediatric Rehabilitation Centre in 2017, The MEED Excellence Award 2017 and Female Leader of the Year 2018. ‘This year, I have just been shortlisted for the global Cartier Women Initiative Award 2019 (among 21 women entrepreneurs from across the world),’ says Dr Hibah.
For a mother who was told that her child would never ‘grow out’ of autism, Dr Hibah has surely come a long way.
‘The president of an overseas children’s society once told me there was absolutely no treatment. Well, here I am today, telling him that my child is going to school and she is so independent and successful. Today the entire community is aware and supportive of children with autism to be in mainstream schools, which is a big change that took many years of constant and persistent work.’
For all her endeavours, Dr Hibah has staunch support from her husband, who believes that children with autism are equal but different in their own unique way. ‘He is very supportive and proud of my work and he constantly encourages me and helps me develop new ideas.’
‘Autistic children have beautiful minds that see and hear things different then we do,’ says Jalal, who works as an engineer and shares a strong bond with Sarah. ‘When she was little, I was the only one who could make her try new foods (a challenge for children with autism),’ says Jalal. ‘I like to take her out almost every day. We go walking and she talks to me about her school, her activities and the things that go on in her daily life. It is amazing to see how well she comprehends certain things, which even we don’t think about,’ he says.
For parents who may be apprehensive that their child might fall in the ASD spectrum, Dr Hibah has a few words of advice.
‘I strongly recommend new parents to read and learn about developmental milestones, and to seek advice if they notice that their child is struggling or not meeting their typical milestones.
‘I urge them not to wait and to start intervention when it is needed. The first six years of the child’s life are very important as the brain continues to grow and build connections, and it is possible for the child to overcome a lot of the challenges that they may face based on the services they get at this early stage.’
The doctor’s aim is to build a unique platform that enables and encourages an open dialogue about autism from all stake holders including, parents, caregivers, teachers, organisations and the government, ‘After having established ourselves in the UAE and Saudi, we are hoping to grow our services to the GCC region and grow our school support services within all of the UAE,’ says Dr Hiba.
Maharat Learning Centre will be conducting a free event called Maharat Autism Carnival 2019 on April 2 at Marsa Plaza Beach, Dubai. For more info visit cameliciousautismcarnival.com.