Early detection, intervention can reduce severity of autism — experts

AMMAN — Experts have urged parents to monitor behavioural signs of autism in children as early identification and intervention can help them develop vital skills to navigate life.

Autism is a neurodevelopmental disorder that affects the central nervous system and a permanent cure has not been found. What exactly causes it is not known yet, but there are studies that indicate the presence of genetic or environmental factors for autism, but they’re all theoretical and there is nothing proven until now, experts told The Jordan Times.

“Science and experts have not yet found a clear reason behind autism. It is something a person would be born with, as there isn’t any hormonal defect or dysfunction, it is just a disturbance of behaviour and sometimes it could be genetic, but not necessarily,” Ala’a Al Baddawi, volunteer consultant at the Autism Mena Foundation in Amman told The Jordan Times.

Jemman Ammary, the CEO and founder of the Autism Mena Foundation (Amena) in Amman said: “I have started this foundation in 2014 to help other people with the issues I have faced with my son, as he is 13 years old now and has been diagnosed with autism when he was a child. Unfortunately, I have lost a whole year trying to get the right diagnosis as he has been misdiagnosed.”

Amena, she said, works on three main components: Advocacy and awareness, building local capacities by providing graduates from Jordanian universities with continuous education and training in the field ABA, and targeting and empowering mothers of children with autism.

There are no exact statistics on autism in Jordan, unfortunately, but based on the studies that Amena has done, there are around two million children under the autism spectrum in the Middle East.

 “Getting a child diagnosed is difficult resulting in a large number of unregistered autism cases, thus the real number is likely to be much more than the published figures,” said Baddawi.

A professional support team for a child with autism consists mainly of a speech therapist, occupational therapist, physiotherapist, special educational therapist, and an applied behaviour analysis (ABA) specialist. ABA is a science considered one of the best approach of therapy for children under the spectrum, according to experts.

 “As speech therapists, we work with children with autism according to their language level, we test their receptive and productive language and put the treatment plan accordingly. We work according to their linguistic age and start to teach them what they’re missing whether in language or communication, as autistic children sometimes have good language but are not able to communicate properly. The younger the child the better and faster the results,” Heba Haidar, a speech and language therapist in Amman, told The Jordan Times.

The financial situation of the family affects the treatment of their child immensely, as therapy sessions are expensive, resulting in neglect of treatment in many cases, Haidar added.

“When my brother suddenly stopped speaking, we took him to professionals and he was diagnosed with autism. My parents are both physicians so they already had an idea about it, but many children go undiagnosed due to the lack of awareness and assistance. We even had to contact experts from abroad,” Reem Faqih, whose brother has autism, told The Jordan Times.

On the challenges her brother faces, Faqih said what distinguishes people with autism is their behaviour only. “My 20-year-old brother looks like any other 20-year-olds but behaves more like a child, which sometimes makes people laugh at the way he eats, speaks or plays. This reaction is mainly due to the great lack of awareness in our community,” she noted. 

Amena’s officials note that autism is poorly covered in university curricula even in the special education field whose graduates are supposed to attend to children with autism in schools and otherwise.

“According to Jordanian laws, all children have the right for education regardless of any disability or disorder they might have. The reality, however, does not reflect the law. For instance, many schools do not accept children with disorders and most schools are not prepared to receive them in the first place,” Nermeen Albanna, project manager at Autism Mena Foundation, said.

A 10-year strategy for the inclusion of children with autism in schools has been launched by the Ministry of Education supporting the new law for persons with disability issued HCD headed by HRH Prince Mired Bin Raed

Autism warning signs can be seen in early childhood. Parents must pay attention to the symptoms that appear on their child such as lack of eye contact, weak response when called by their name, digestive problems or allergies to certain foods and sensory problems among others, experts told The Jordan Times.

“As autism has no definite cure, we teach the child to adapt. We too, learn to adapt,” Baddawi noted.

“About 80 per cent of a child with austim progress depends on their family, which is why we need to raise parents’ awareness,” Albanna added.

“There is not enough service and care in Jordan for autism, but there is slow improvement. Aumena is contacting the Higher Council for the Rights of Persons with Disabilities (HCD) to add a separate section for autism because it is in fact different from disabilities, as it is not a disability, it is a disorder,” Albanna noted.

“During the pandemic crisis, some special education and training centres continued their services to the children with autism online. Nevertheless, some centres could not go online and as a result many children experienced a relapse,” according to Albanna.