UAE family's Dh1 million autism care bill highlights challenges for parents

Parents of children with autism have told of the challenges of funding vital treatment running into tens of thousands of dirhams each month. Doctor's visits, therapy and school fees combine to pile pressure on the finances of parents eager to give their children the support they require. On World Autism Awareness Day, Dr Mohammad Raad told The National he had spent more than Dh1 million ($272.200) to date on his seven-year-old's treatment and education. He is happy to do whatever it takes to ensure his son thrives, but is only too aware it comes at a price. “If you have got this diagnosis, you are going to be spending a fortune," said Dr Raad, a senior academic and physician who divides his time between UAE and the UK. "It's Dh450 an hour for the therapy. Literally, I spent Dh1 million and more over four years on getting the best result for my son. "To see my son thrive, is worth a million every day. "I get a monthly bill of Dh50,000 which includes Dh24,000 for therapy, another Dh4,000 for his school, Dh3,000 for speech/language, and Dh6,000 for a shadow teacher [a teacher providing one-on-one support to boost academic, social and behavioural development]. "Plus I pay for private swimming lessons as he loves water. I have a specialist nanny, who is a paediatric nurse, and that also costs Dh5,000 per month. "We also have to be buying sensory materials. This is not to mention a special organic-only diet, totally sugar free, with only freshest ingredients as advised by a nutrition specialist for neuro-development." He advised parents to educate themselves about the condition and do their research on the most cost-effective support methods available. He said CLM, or competent learner model, a system used in the US, can be effective. "I did it the expensive way because I didn't know about CLM [Competent learner model]. It costs very little to join CLM compared to everything else and you don't waste any time," he said. "If you can't afford it, you have to learn how to support your child yourself. The great thing about CLM is you can learn and it will cost you Dh1,000 to Dh2,000 to learn online. "You always have to allow for your own education as a parent, that could be buying books, or it could be joining an online course. There's a lot of free stuff out there, a lot of resources and charities too." About one in 100 children globally is believed to be on the autism spectrum, the World Health Organisation says. The condition 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. 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, and community awareness and empowerment. Humaira Adnan, whose 10-year-old son Muhammad Omar Khan has autism, said the high costs of therapy and educating her child meant that her family have not been able to save for their future or their retirement. The family spends between Dh150,000 and Dh180,000 on their child’s education and therapy every year, but at times are not able to access all the therapy their child needs. “The financial burden is that we are not like other families who can afford vacations every once in a while. We cannot spend on lavish things and buy a new car or something like that," said Ms Adnan, who is from Pakistan and lives in Dubai. "Resources are there but our first priority is our child. His father had to cut down on his favorite things in order to get him the best treatment, the best therapy and the best shadow teacher." Ms Adnan, a freelance digital marketer, is also an autism advocate who guides and helps parents who get an autism diagnosis for their child. She said she pays Dh3,000 to her son’s learning support assistant, Dh3,000 for schooling, and another Dh8,000 on therapy every month. Apart from this, hidden costs can emerge when additional tests are required. A single test can cost up to Dh2,000. “If they request for some new intervention or a new therapy, that's an added burden, so we have to cut down on something," said Ms Adnan. She said centres often asked parents to repeat assessments, which means spending out again. She spent close to Dh7,000 on training herself by taking an 48-hour-course on a specific autism treatment. "I thought that is better to get myself empowered because I'm the only one who's working with him constantly," she said. She went back to Pakistan to attend the courses. Nipa Bhuptani, founder of Autism Support Network in the UAE, said: "The cost is phenomenal and it's detrimental. It breaks families. "I have known families who have had to move from a three-bedroom apartment to a one-bedroom apartment just to be able to pay for these. Doctors tell them to go back to their home countries, because this cost is prohibitive." Shadow teachers can charge between Dh1,500 to Dh10,000 per month based on their training and the needs of the child, she said. Ms Bhuptani said Applied Behaviour Analysis, the gold standard treatment would cost anything between, say Dh200 to Dh500 an hour. The recommendation could be anything between five to 40 hours a week "The two biggest worries for parents are finances and future," she said. She said the initial doctor's diagnostic process cost almost Dh4,000. "My advice to them at that point of time is kind of do as much as you can before they get into school, so that you will need less support at school, at least letter of support at school," said Ms Bhuptani. "If you look at the studies that have been done on the return of investment for children with autism into therapy, then the more you invest into therapy in the earlier years, that over over time, there's lesser need as they grow up. "I find that there is a huge dependency on the supposed experts. The most important investment, I think is parents training themselves. "The way to reduce cost is by building your own capacity building capacity of the entire family, learn how to work with your child, learn how your child learns, and then you're able to teach them."

UAE family's Dh1 million autism care bill highlights challenges for parents

On World Autism Awareness Day, parents have outlined the cost of funding key treatment for their loved ones