A mother of autistic twins has said insurance coverage for crucial therapies would be a “game changer” for families across the UAE.
Ambreen Suhaib, 35, and her husband spend more than Dh300,000 ($81,600) a year on care for their nine-year-old boys, Ahmed and Hadi.
She told of the huge challenges the couple face as they seek to do the best they can for their sons.
Mohammed Al Emadi, director of Dubai Autism Centre, last month called for insurance companies to be mandated to provide coverage for key autism treatment to ease the financial burden on families.
He stressed the need for assistance to be in place for behavioural and speech therapies, which are key to the development of young children with the condition, in an interview with The National.
Ms Suhaib and her husband, who live in Dubai, saw their prayers answered when they welcomed twins.
Within months of their birth, she suspected both may have autism.
“I noticed they sat late, walked late, were not socialising, stared in space for hours, and were really irritated with loud noises,” Ms Suhaib told The National.
Concerned, she began to read about the symptoms.
“Like many parents, I didn’t know what autism is and the first definition online really scared me, so I thought this could never happen to my kids.”
It wasn’t before 2017 that a diagnosis was provided and Ahmed and Hadi were found to have moderate to severe autism.
“My husband was in denial and I was numb and depressed, because having two kids with special needs all their life was a very big thing for me to accept.”
What is Autism?
Autism is a lifelong neurodevelopmental condition affecting verbal and non-verbal communication, social interaction and behaviour.
About one in 100 children globally are believed to be on the autism spectrum, the World Health Organisation says.
In April 2021, the UAE Cabinet approved the National Policy for People with Autism.
It set out ways to provide people with autism with easy access to services, to ensure their inclusion in education and wider society and to train more qualified professionals while bolstering community awareness.
Family's financial challenges
Since the diagnosis, Ms Suhaib and her husband have spent a fortune on care centres — moving their children from one to another in search of the best support.
They tried to secure insurance for costly treatments but were told the therapies their children need almost every day are not covered.
“The financial aspect of autism is the most draining and frustrating part for a parent, because the only therapies that can help your children are not covered,” she said.
Hadi and Ahmed have been attending a school readiness centre in Dubai’s Al Satwa area for the past three years.
The family pays Dh146,000 per year for each child.
They need one-on-one therapy that costs between Dh6,000 and Dh10,000 a child every month, which the family can’t afford. One of the boys is now regressing in his speech, said Ms Suhaib.
“If therapies were covered, it would be a game changer for parents who see their autistic kids struggle and know what they need but can’t give it to them,” she said.
“I tried to get the children into mainstream schools but many didn’t accept them because they thought they are not a perfect fit for them.”
She believes a new law mandating insurance coverage is required.
Ms Suhaib also believes more work must still be done to create a more inclusive society for those with autism, as there remains a lack of understanding and acceptance.
“Inclusion is considered a favour, not a right, for autistic children and much work is needed for that,” she said.
She called for more awareness campaigns to help better integrate people with autism into everyday life.
To help spread a message of hope and positivity among other parents with special needs children, Ms Suhaib started the Warrior Mommy Instagram page.
On this, she shares her family's story, provides useful resources and aims to raise awareness about autistic children and to bridge the gap between them and wider society.
“I wanted to create a space where parents could find support, share their stories, and learn from each other,” she said.
“I also wanted to raise awareness and promote acceptance and inclusion of autistic children.”
There has been some negative feedback, said Ms Suhaib.
“People want to come on social media and have fun, while my topic is saddening. But I didn’t give up, because I believe we always find support around us.”
It's OK to be different
Her hope is for a kinder world, where all are made to feel at home.
“Teach your kids that if they see a child jumping or clapping or stimming or making loud sounds, it's fine. I want the normal world to stop judging them and be more accommodating and more humble and kind,” said Ms Suhaib.
“Teach them that it's OK to be different.”
It is not enough to be aware of autism, she says, it is important that awareness is complemented with action that give these kids a chance, like inviting them to birthday parties and play dates.
“It takes a lot of courage and patience for families with moderate to severe autistic kids to go out,” she said.
She called on other families to be more sensitive to autistic children.
“Because they deserve it and autism doesn't make them any less,” said Ms Suhaib.
“Yes, different. But not less.”