QAMISHLI, Syria (North Press) – Five hard years passed before Midia Jemo saw her six-year-old child, Shiyar, stare into her eyes and repeating for the first time the word "mama." This is a word that she has always hoped to hear after constant attempts to find an accurate diagnosis of his condition, which doctors have been unable to understand for more than four years.
"Your son has moderate autism," was how Damascus doctors diagnosed his case. Jemo told North Press "I had a lot of thoughts in my mind before hearing that diagnosis, but I never felt afraid or despaired."
After exhausting years of searching for an accurate diagnosis, she will start a new search for treatment in the light of the lack of special care centers for these children in a community that sees her son's case as a mental disorder.
What is autism?
The World Health Organization (WHO) defines autism as a disturbance in linguistic, behavioral, emotional, and expressive growth. This definition does not cover the simplest challenges that families of these children face, especially in war-torn countries like Syria.
WHO statistics show that autism is common, and that one out of every 160 children has autism. Yet most people still are unsure of how to deal with children with autism.
Due to their unfamiliar behavior, children with autism and their families often face bullying. An autistic child often makes frequent noise and may scream, while others tend to be hyperactive or unresponsive to their parents’ calls, so specialists see it as easy to label them as mentally ill.
During the past years, Shiyar's mother heard terrible words describing her son's behavior, such as "Your son will not enter school because he is mentally retarded...he will not get married, will not get friends...you do not properly raise him."
Moreover, schools and kindergartens did not accept her son in the light of the lack of care centers specializing in the rehabilitation and development of those on the autism spectrumain North and East Syria, and the country at large.
Only one center
Maher Jaalo works in the Bisan center for children with autism and speech disorders, in cooperation with a group of volunteers and specialists to deal with dozens of autism cases since the establishment of the center in 2018. It is the only center in northeast Syria, and recently a new center was established in Amuda city east Qamishli.
Jaalo told North Press that "Bullying of these children and their families leads them to ignore and never mention their children's cases."
Many families reject the idea of sending their children to the center by the special buses, fearing verbal or physical abuse if their relatives and neighbors know that their children go to the center, while most of the families treat their children secretly, and other families register their children in the center with fake names.
Hasna Ahmad, mother of an autistic child, said "I wish to build a private city which in my children and I live alone, where we could walk without verbal or physical abuse, and no one will ever give our children those miserable looks full of pity and shock."
Jemo refused to hide her child's case or feel ashamed to talk about it, and decided to support him by reading about autism and recording her son's steps and stages of development.
She kept in touch with her son by her passion and heart, and described her happiness when Shiyar finally looked into her eyes and said "mama."
She added "I became more patient and mature than before as well, as my priorities and interests changed; I no longer care about people's talk and aspects of life."
After her experience, she found ambition to search for and help autistic children, so she decided to join a training workshop for children with autism to develop her skills at the Bisan center.
She established a Facebook account that is called "My autistic child, my beautiful angel," in which she shared her child's activities, aiming to provide a message to all mothers that "Your children are the most beautiful gifts of God; love them despite their differences."
Due to her efforts in this field, Bisan center give her the Ideal Mother Award in July, one of a series of monthly awards that the center provides for mothers who are most closely following the cases of their children.
Different, not deranged
Maysam Hosary, the only specialist in northeast Syria who works in Bisan center, said, "these children are not mentally retarded, but different and distinguished. They can live their lives normally, enter schools, and be involved in the community after they receive the proper care. Moreover, they have distinctive mental talents and abilities that can be developed."
No statistics, no specialists
There are no accurate statistics of the number of autistic children in northeast Syria. There are small numbers that are registered in centers and organizations concerned with autistic children.
In Bisan center, there are 125 children, of which 18 joined in 2020. 53 left the center in 2018 and 2019.
The absence of support
Those who work with autistic children believe that special centers for these children reduce the burden of travel and high costs for the children's families in northeast Syria. However, the center said that it did not receive any support from international organizations concerned with children.
Maher Jaalo added that the center relies mainly on children registration drawings, and the Amuda center was recently threatened with closure due to high rent, but a local media organization provided support to continue the center's work.
Bisan center prepares specialized therapeutic crews according to courses of six levels, "starting from a trainer for autistic children to educational and behavioral therapist. At the end of each level the trainees undergo a test, and academic certificates and training courses, in addition to test results, are required,"
according to the center's administration.
(Reporting by Zozan Hasan; Editing by Lucas Chapman)