By Fatima Khaled
RAQQA, Syria (North Press) – Over the past eight years, Khawla al-Faraj has never had a good sleep at night, especially after giving birth to her daughter, who suffers from autism. Since then, she has had interrupted sleep due to the difficulty in dealing with her daughter’s illness that needs great effort and attention.
Sufferings of the 40-year-old al-Faraj, a resident of Kasret Muhammad Ali, a village southern Raqqa Governorate, northern Syria, began after giving birth to her youngest daughter due to her “bad” health condition that affects the family’s life.
Autism – also referred to as Autism Spectrum Disorder – constitutes a diverse group of conditions related to development of the brain that affects a person’s ability to perceive others and interact with them socially. It is characterized by some degree of difficulty with social interaction and communication, including restricted and repetitive behavioral patterns.
In light of the lack of centers dedicated for patients with autism, al-Faraj is forced to take her daughter to a treatment center in Raqqa every day since it is the only center in the region.
The “Future Visions” center, specialized in providing care for patients with autism and those with special needs, is the only center in the city that offers free treatment and care. However, the cessation of support provided to the center by the sponsoring organization has affected its work.
Amid deteriorating living conditions, al-Faraj has to bear the expenses of transporting her daughter to the center, especially after the stop of funding.
The mother told North Press, “She cannot eat normally and she needs assistance with eating.”
Integration difficulty
The mother demands the establishment of specialized centers for patients with autism in particular, since they face difficulty integrating with community, going to school, or having a normal life like others amide the scarcity of support and care provided by the Autonomous Administration of North and East of Syria (AANES).
Autism begins in early childhood and causes social problems in school and work. Symptoms often appear during infancy or childhood, few children grow normally in the first year; however, they show the symptoms between the age of 18 and 24 months.
Amlak Hilal, 30, a resident of Raqqa, suffers the same like al-Faraj because her son “Ibrahim” suffers from autism spectrum disorder.
Hilal’s son was diagnosed with autism after the death of his father during the Syrian war.
The mother told North Press that her sufferings have begun following the death of the father because Ibrahim “showed no symptoms” before.
Studies indicate that the cause of autism spectrum disorder is unknown and scientific evidence suggests that various factors, both genetic and environmental, contribute to the onset of autism.
So far, science has not been able to discover specific genes causing autism. It is likely that they result from the interaction of several genes, according to reports.
Other studies indicate that autism symptoms appear in the first two years, but mild forms may not be distinguishable until the age of school.
Each autistic child is likely to have a unique pattern of behavior and severity level.
Al-Hilal added that before receiving free treatment in the “Future Visions” center, she and her son suffered because it was impossible to treat him in expensive private centers.
A group of volunteers provides care and assistance in the center in term of teaching the autistic children. However, it is still insufficient they need specialized schools or at least special classrooms within public schools, according to al-Hilal.
Empty box
Upon his experience with his autistic daughter “Norhan,” the 37-year-old Mamdouh Ali describes the autistic children as “empty boxes” that need to be filled.
The intelligence quotient of some autistic children ranges from normal to high, as they learn quickly. However, they have difficulty in communication and applying what they know in daily life and adapting to social situations.
Ali added, “Children with autism are unique, but their families face significant challenges. Those children are unable to express their needs.”
Ali and his wife “discovered” their daughter’s illness at the age of 21 months.
He noted, “I and my wife were shocked and we did not know what to do exactly as we had no idea about autism.”
By going to the center, Ali managed to provide his daughter with the necessary care, but he stresses that the center alone is not enough, but they need more to help them integrate with their peers.
The father appeals to and urges relevant authorities to provide care for children and patients with autism, as they suffer greatly because parents may be unaware of how to deal with their autistic children amid their need for specialists to care for and train them.