In the Middle East, stigma surrounding autism persists

DUBAI: While awareness of autism has improved in the Middle East, the stigma surrounding it still lingers, according to experts and parents of children with the condition, who are using World Autism Day to call for more awareness, early detection and better inclusion.

The UN marks the day each year on April 2, and landmarks and buildings worldwide are lit up in blue to bring attention to, and acceptance of, the neurobiological disorder that affects communication, behavior and social relationships. 

Globally, the World Health Organization estimates that the prevalence of autism spectrum disorder (ASD) is one per 160 children.

The prevalence in the Middle East is still unknown, largely due to a lack of diagnoses or a lack of acceptance from parents.

“There’s a significant paucity of data on prevalence or scientific research in the field of ASD in Arab countries,” said Dr. Arun Sharma, medical director of Dubai’s Emirates Hospital Clinic.

Available reports suggest that the prevalence of ASD is 1.4 per 10,000 children in Oman, 29 in the UAE and 59 in Saudi Arabia, he added. 

“The lower incidence of ASD might be due to the shortage of specialists to diagnose it properly, and the lack of parents’ awareness to recognize symptoms and seek diagnostic clarification,” he said. 

Things are likely to improve with the advent of new health care facilities, more neuropsychiatric professionals and growing social acceptance, but the region has a long way to go, Sharma added. 

“The Middle East, when it comes to making a diagnosis of autism, doesn’t fare well compared to countries in the West,” he said.

“Some parents still evince little inclination in acknowledging that their child may have an autistic issue. When told by a neurologist / psychiatrist, their first reaction is to erupt in an emotional rage, followed by a long duration of denial. This goes on to prove that the stigma around the condition is almost as pervasive as the disorder itself.”

Rana Akkad Atassi heads the UAE-based special needs center Jad’s Inclusion, named after her autistic son who died in his sleep last summer. The center helps fill the gap between mainstream and special needs education.

“There has certainly been a huge improvement in the past five years when it comes to diagnosis, awareness and inclusion of autism in the Middle East,” Atassi told Arab News.

“We see the launch of new therapy centers, a number of awareness and support campaigns etc, but we still have a long way ahead of us,” she said.

“Despite the great advancement achieved in the region in the last couple of years, we still have a lack of diagnostic centers and therapists when compared to the rest of the world. Moreover, the quality of what’s available is still far from the benchmark.”

There have been many improvements across the Middle East. For example, Saudi Arabia’s first autism center was relaunched in Jeddah’s Al-Shatei district as an integrated facility for rehabilitating children.

The Jeddah Autism Center has been widely recognized as one of the leading facilities in the Arab world.

New rules launched by the UAE’s education regulator state that all private schools in Dubai must be able to cater for special needs children by 2020.

Last month, the country hosted the Special Olympics, which saw athletes with a range of mental disabilities — including those on the autism spectrum — compete against each other on a global platform.

They included Saudi national Abdulmalik Almuhayfith, an athlete with autism who competed in roller skating.

Those close to him highlight how much he respects punctuality, a common trait of those with autism.

In the future, Almuhayfith hopes to become a TV presenter. He relished the chance to shine at the Special Olympics, and parents of others with autism say they hope for more platforms that allow all children to showcase their skills, regardless of their ability.

“In the UAE, we’re lucky to have some good-quality centers with qualified therapists for those with autism,” said Zora M’salka, a 35-year-old Canadian living in Dubai whose 6-year-old twins Mak and Mow both have autism.

“One of the best examples of inclusion in the UAE was just last month when it hosted the Special Olympics. It was so amazing to see the leaders of this country get involved, and all the people of determination who did such an amazing job.”

However, “there are very long waiting lists for treatment, and the prices for assessments are very expensive,” M’salka said.

“As for inclusion, we’re so far behind. We’ve been rejected from so many schools without them even giving a chance for assessment. As soon as they hear ‘autism,’ it’s a ‘no’ or ‘we’re full’,” she added.

“There’s a stigma surrounding autism. Our kids are always being judged, and people stare and give unwanted advice,” she said.

“But the situation is slowly improving. People are getting to be more aware. I’m hopeful that things are taking a drastic change to a positive future for our kids.”

In her line of work, Atassi sees many issues surrounding autism, most chiefly misdiagnosis, which prevents children from receiving critical early intervention, and the cultural stigma. “A wrong diagnosis or treatment is worse than not getting any, and sadly I see many places taking advantage of parents’ ignorance and charging them exorbitant amounts of money for treatments that might be doing more harm than good,” she said.

“Unfortunately, it’s still a stigma among many people in the region. The fact that autism is a diagnosis that doesn’t show physically makes it easier for parents to hide it.”

April McCabe, an American expat who runs the Autism Mom Dubai support group, said while the Middle East has “come a long way” in the 11 years she has lived in the UAE, when it comes to improving detection and treatment, “we still have a long way to go.” She added: “Unfortunately, diagnosis is extremely expensive and many parents can’t afford to get a proper diagnosis for their child, which in turn leaves the parents lost and not knowing where to go for help.”

McCabe, whose 15-year-old son Owen has autism, said many doctors charge 7,000 UAE dirhams ($1,866) or more for a diagnosis, and support for autistic children can be even more expensive, starting at 10,000 dirhams per month for applied behavior analysis therapy. “It would be great if the government could regulate this and offer families some support,” she added.

Andrea Allen, a 45-year-old British expat living in Dubai, has a 12-year-old son, Oscar, with autism. She said there are still stigmas surrounding ASD.

“Many feel it’s a mental illness, whereas in fact it’s a neurological disorder. The individual was born this way, and instead of fearing their differences, we should embrace them, and we’ll learn so much about the world through their eyes,” she added.

Research has shown that early intervention can improve a child’s overall development. Children who receive autism-appropriate education and support at key developmental stages are more likely to gain essential social skills and react better in society. Essentially, early detection can provide an autistic child with the potential for a better life. 

Angela Geiger, president and CEO of the advocacy group Autism Speaks, said the focus is on lowering the age of diagnosis.

Autism can be diagnosed as early as 2 years old, but the Centers for Disease Control and Prevention (CDC), a US federal agency, found in 2018 that most children were being diagnosed at the age of 4.

“The important thing about that is that diagnosis gets you right into timely interventions, and the better that intervention is, you can be your best self,” said Geiger.