Autism
Adil and Talha look forward to fasting during Ramadan Image Credit: Supplied

Safeeja Anwar

Mother of Adil, 12.

Back in 2012, Safeeja, a Behavioral Analyst, was working as a Residency Coordinator for the Dubai Health Authority. Adil was only two and a half years old at the time. Not very vocal, he seemed to be in his own world.

Safeeja remembers being concerned that he was was not speaking and, keen to ensure that he was developing correctly, took him to several doctors to find out if everything was fine.

‘I knew something was very wrong, because he never came to us when we called him or addressed us as mumma or dada,’ she says. However, the doctors dismissed her concerns as the effect of Adil being being the first child and being alone at home.

His play routine was also very typical as he would line his toys all the way from the living room to the bedroom. When they got him a tricycle, he would turn it over and play by rotating the wheels rather than try to ride it.

He would not express any of his needs and was very cranky in crowds.

Finally, a psychiatrist hinted to them that their child could be on the autism spectrum. ‘We were in complete denial for a year,’ says Safeeja. ‘They were using terminology that we haven’t even heard before and I felt completely lost.’

Even after the diagnosis, since there wasn’t much awareness back then, the Anwars were confused how to move forward. A doctor advised to enrol him in a nursery, but his situation worsened as it triggered too many stimuli for him. He became more aggressive and crankier. ‘Now we realise that his crankiness was just his way of communicating,’ remembers Safeeja.

What put things in perspective was a coincidence that happened at work one day. Safeeja was assessing the documents of a student who had applied for Escort Leave since her son was autistic. Reading through the symptoms Safeeja felt she was reading Adil’s story – repetitive behavior, no eye contact, no name call response, crowd shyness, lining up the toys, rotating the wheels of a toy car or cycle....

‘It was like a sign from God and it spurred me to take action about Adil,’ she says.

Safeeja
Adil with his parents and sister

Safeeja resigned her job and moved to Bangalore to enroll Adil in a center called Behaviour Momentum. Safeeja did her parental training programs from there and later went on to do her professional ABA certification.

On returning to Dubai, Adil developed an academic sense and became a good learner. His challenges were more behavioral. Presently he is in seventh grade at The Ambassador School.

Adil was introduced to the concept of fasting four years ago. He initialy began fasting for half a day and gradually went on to fasting on weekends.

Since he is a foodie, Safeeja says that it was difficult to wean him into the process of giving up food.

She remembers using techniques she learned in ABA and set up reinforcers for him. ‘He has dietary restrictions as he is allergic to casein (milk protein) and gluten (wheat protein). But he loves donuts. So, the reinforcer was that if he completes his fast, he would get donuts,’ she says.

For the past three years, Adil has been fasting for the entire month and even observes his daily five prayers.

There were times when he would forget and take sips of water or complain that he was hungry, but this year, he has become a lot more conscious of the concept.

‘One day we missed Suhoor and I asked him if he wanted to end his fast, but he was adamant he wouldn’t,’ says Safeeja.

Adil is also keen to attend Taraweeh prayer with his father Anwar in the masjid every day.

Safeeja notes that fasting has also taught Adil patience. Since he would often squabble with his younger sister Ayasha, who is 4, Safeeja set a reinforcer that if Adil doesn’t fight with her, he can go to his friend’s place for iftar. ‘It worked like a charm, and I am enjoying a very peaceful Ramadan,’ says Safeeja. ‘Even if Ayasha tries to trouble him, he keeps his calm.’

Safeeja states that though there is a gap between him and his peer group, Adil loves his school and hanging out with these friends.

‘When he reached seventh grade, he was so excited, he couldn’t sleep. He has already calculated when he will finish 12th grade and is looking forward to it,’

A few years ago, Safeeja joined a parental support group called Heavenly Angels which helped her hone Adil’s skills. Currently they have parents across UAE, who conduct stage programs to train children in singing, dancing, fashion shows and other skills. Being a good singer, Adil has done many stage programs in singing.

Safeeja is glad that the UAE has taken great strides in raising awareness for autism and she hopes children like Adil will be able to live a productive life here in the future.

For more information, visit Heavenly Angels - HA | Facebook

Uzma Akser

Mother of Talha, 13

Born in the UK in 2010, Talha and his family moved to Abu Dhabi the very next year. As the boy grew, his mother Uzma, instinctively knew that something wasn’t quite right with her first born. He was not meeting certain milestones that were appropriate for his age. ‘Naturally, as a mother, I would compare him to other children. When we went out to playgroups and gatherings, he would flap his arms, not make eye contact, would be fixated on certain objects (in his case it was vacuum cleaners) and indulge in echolalia,’ explains Uzma.

Even though she and her husband sought professional help, back then they struggled to find an expert in Abu Dhabi who could shed light on what exactly what was wrong with their son. Rather than giving up or splitting the family by going back to the UK with Talha, Uzma decided to take the lead and start researching on what was going on.

Back in the UK, Uzma had her own immigration and human rights practice. After moving to the UAE, she wanted to continue her legal career, but once she noticed that Talha was not hitting his milestones she decided to stay home as a full-time mother and give him all the time and attention he needed.

‘This was the best decision we as a family could ever make,’ says Uzma. ‘I could closely observe what challenges he was facing.’

They got their complete diagnosis of autism only when Talha was almost seven years old, but it wasn’t a shock to any of them.

‘With him being on the autism spectrum everything is black and white. Once you explain a rule to him, he will follow it.

- Uzma Akser

For Uzma it was more of a reassurance that she could now confidently do two things; one, create a roadmap for the next set of goals in his life and two, feel more confident as a parent explaining to others that he is on the autism spectrum, when a situation may arise in public.

‘In occasions of a meltdown, we would often be told by others he is a ‘spoilt or naughty child’. This is sadly a common misconception and the more we raise awareness in this and move towards acceptance we will still struggle with individuals being judgmental,’ explains Uzma.

Talha started his first fast when he was eight. However, since he turned 10, he has been fasting for the entire month of Ramadan.

Uzma recollects that Talha found his first fast challenging and would often ask how long he has left before he could end it for the day. ‘Once we explained the religious and spiritual reasons behind Ramadan, he was very keen to observe fasts,’ she says.

‘With him being on the autism spectrum everything is black and white. Once you explain a rule to him, he will follow it. He loves to keep the environment clean as he read about pollution. Since then, he will never throw garbage on the floor and gets extremely upset if he sees someone else doing it.’

Talha understands that fasting is part of his religion and reminds him of people who are less fortunate and don’t have food to eat every day. He enjoys doing charity work in this month like offering food and hygiene kits to workers in the compound or distributing meals with his family at labour camps. ‘Fasting is difficult, but I have become used to it,’ he says.

Talha started homeschooling when they faced many rejections from schools because ‘they didn’t have the resources for his needs’.

During the early years of homeschooling, Uzma created a system at home that was tailormade for Talha. As she realized he was more of a visual and tactile learner, she gathered resources that worked for him and took more of an eclectic approach to his learning.

However, this meant a long career break of 10 years for Uzma. ‘Deep down I missed going to work but knew that during this phase I needed to be home with him and his younger siblings Ubayd and Hadi,’ she says.

During Covid, she decided to take an Autism Certification from the UK and open her own coaching and training practice.

Two years on, Uzma Akser Coaching and Consulting has grown to deliver training programs in neurodiversity and neuroinclsuon for corporate organizations and the community at large.

‘We have also created a CSR called ‘Bridging the Gap’ where we hold community events for families who have children with ASD, learning disabilities or other sensory challenges. It aims to move towards a community that empowers neurodiversity,’ she says.

For more info visit coachingwithuzma.com