How UAE can help families raise kids with autism

Parents in the UAE are looking up to the National Policy for Persons with ASD, hoping for more support for their children

Raising a child with Autism Spectrum Disorder (ASD) comes with challenges only families and caregivers could understand. And when the UAE government announced a comprehensive policy covering several needs of people with ASD, many felt their concerns were understood.

Families in the UAE are looking up to the National Policy for Persons with ASD, hoping for more support for their children.

Announced in April this year, the new policy was approved under the ‘United for Autism’ vision to create an integrated system of procedures and standards to provide persons with ASD with easy-access services, facilitate and ensure their inclusion across all educational institutions, train more qualified professionals, and strengthen community awareness.

It includes 14 initiatives across five pillars, namely, diagnosis, healthcare, human resources, inclusive education, and community awareness and empowerment ­— all to ensure the best quality of life for those with ASD,

Residents are hoping that the programmes set to be rolled out under the policy could solve some of the challenges they are facing.

One of the biggest issues for families is the steep cost of raising kids with ASD and providing them with services that can ensure their overall development. “A lot of people find special schools on the higher end of the pricing spectrum. Besides, many children need behavioural therapy, speech therapy and occupational therapy. Not everyone, of course, can afford these expenses,” says Barbara De Podestà, health coach for families.

Lack of insurance is also a concern among many. “There should be some kind of insurance support or financial support for families because I see many parents face challenges in terms of caregiving,” says Dr Mona Youssri, clinical director at Hayati Healthcare Centre, DHCC.

“In case of autism, early interventions make a huge difference. But many a time parents are unable to afford it. For example, if the recommended sessions are say 10 per week, many can afford only three. Now sessions and interventions are basic rights of a child with ASD, but what if parents cannot afford them,” Dr Youssri said.

Bobby Thompson, mother of a child with ASD, said school fees were also higher than usual.

“In schools, every child with ASD needs a shadow teacher to be with them all the time, the cost for which has to be borne by the parents, which is over and above the usual tuition fee. The costs of various therapies range from Dh200 per session per week to Dh500 and above. I have a community card issued by the government, which needs to be annually renewed at a cost, but there are no benefits on that card. The medical insurance, on the other hand, also doesn’t cover much of the medical expenses for my child,” Thompson said.

A lot of children apparently do well at the therapy centres but are unable to exhibit the same progress at home. “To change this, we need to be able to carry on the training at home, too. We need to be able to give the parents the tools to learn, how to handle the child at home,” says Podestà.

With its new autism policy, the UAE is determined to support parents. It will provide a reliable source of information about autism for the community and an interactive way to respond to enquiries.

The emotional roller-coaster ride faced by parents is yet another prominent challenge. They go through denial and a very exhausting emotional journey, which requires counselling support.

For De Podestà, taking care of people of determination goes beyond specific aspects like academic skills, social skills, communication skills. “We need to look at the overall wellbeing and take a more holistic approach,” she said.

“In order to cope with everyday challenges, we have the duty to make the society more aware of special needs and more inclusive. The new policy of the government is proof that as a society, we are trying to do something to meet their needs,” she added.

If the new policy irons out the issues families face, it would be a great help to parents and caregivers of children with ASD. Measures taken by the government and support offered by the society can go a long way in building inclusive communities where every individual is able to maximise their potential.

suneeti@khaleejtimes.com

• UAE