More support is needed to prevent parents of children with autism from being priced out of "essential services" to improve their quality of life, a UAE health chief has said.
Mohammed Al Emadi, director of Dubai Autism Centre, 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 crucial to the development of young children with the condition.
He said the cost of annual treatment can typically run to Dh120,000 ($32,670).
The non-profit organisation, established in 2001, is able to charge about half this amount due to the donations and other support it receives.
“Many families, Emirati in particular, struggle to afford these essential services, which can significantly impact the child's development and quality of life,” Mr Al Emadi told The National.
“We charge about Dh62,000 because we receive support and donations but the actual cost can be over Dh120,000 per year for each child.”
Nipa Bhuptani, founder of Autism Support Network in the UAE, told The National last year of the financial pressures families face.
"The cost is phenomenal and it's detrimental. It breaks families," she said.
"I have known families who have had to move from a three-bedroom apartment to a one-bedroom, just to be able to pay for these. Doctors tell them to go back to their home countries because this cost is prohibitive."
Autism is characterised by difficulty in communication and restrictive or repetitive behaviour.
Experts say symptoms can include repetitive speech or phrases; lack of imitation of other people’s actions and emotions; atypical, repetitive and restricted play; engaging in repetitive movement such as hand flapping or finger flicking and oversensitivity to sound.
Mr Al Emadi said an extensive team of psychiatrists, paediatricians, psychologists, occupational therapists and speech-language pathologists was required to help young patients.
“We have three nurses, a physician and more than 120 therapists,” he said.
“The centre’s medical team conducts a full physical check-up on all our children twice a day after drop-off and before pick-up hours.”
Staff shortages pose a challenge
Mr Al Emadi said a dearth of trained professionals affected quality of care, leading to longer waiting lists, delayed diagnosis and reduced access to treatment.
“It's a real challenge for us to find enough qualified professionals to work with our children,” he said.
He wants Emiratis to form the backbone of autism treatment in years to come and called for more to take up studies in special education, speech therapy, occupational therapy and other related fields "because Emiratis will not leave the country one day".
But he said there were not enough incentives for residents to get involved in the field, "such as scholarships or guaranteed employment opportunities".
The centre had humble beginnings in a small office but now has a state-of-the-art building with equipment to match, in which it can train staff and support patients.
It now serves more than 150 children, having had the capacity to support only 16 at first.
Sheikh Hamdan bin Mohammed, Crown Prince of Dubai, visited the centre last year.
To develop the communications and social skills of autistic children, who may not be responsive to traditional human intervention, four robots have been programmed to provide tailored therapy in both Arabic and English.
“We are proud of what we have achieved so far and are committed to continue empowering children with autism and their families," said Mr Al Emadi.
One of the more unique aspects of the centre is its first floor, part of which has been transformed into a three-bedroom apartment designed to teach autistic children how to care for themselves.
Its is fully equipped with a kitchen, bathroom and living area, allowing children to practise basic life skills such as preparing their own meals, showering and tidying up after themselves.
The centre also has classrooms, a soothing sensory room, a barber shop, swimming pools, computer lab, gym, and even a photography studio and a cinema to help children learn and practise socialising and independence in a safe and supportive environment.
An outdoor round-shaped play area not only meets the specific needs of autistic children but also aims to enhance their safety and comfort.
“The round shape provides a sense of security and protection, making children feel as if they are in a hugging environment,” said Mr Al Emadi.
He spoke of the need to better integrate people with autism into everyday life.
“It's a blessing to have these children and it's the community that needs rehabilitation to better embrace autistic children and accept them.”
What is Autism?
Autism is a lifelong neurodevelopmental disorder affecting verbal and nonverbal 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.
The policy comprises 14 initiatives across five pillars of diagnosis — health care, human resources, inclusive education, community awareness and empowerment.
In a 2021 end-of-year report, the Ministry of Community Development said 4,396 people were registered as autistic in the country.