In rural, opposition-held Syria, a mother struggles to find treatment for her son’s autism

AMMAN: Umm Muhammad wakes up early each morning to prepare her son’s favorite foods and the games he likes to play. While all is quiet, she meticulously arranges the home where she, her husband and four children live, just a few kilometers from Syria’s northwestern border with Turkey. Nothing can be out of order.

If any part of the day’s schedule deviates too far from the norm, Umm Muhammad says, her six-year-old son—who was diagnosed with an autism spectrum disorder (ASD) during infancy—will break into a fit of anger that only ends when he has tired himself out.

“My son is very much a child of routines,” she tells Syria Direct about Muhammad, a pseudonym for the six-year-old. Umm Muhammad asked that her son’s name not be included in this report.

The mother of four says that she has to be “entirely available” for her son from the moment that he wakes up each morning. “It’s as if I am a part of his routine world.”

Muhammad’s ASD is severe. At the age of six, he does not speak but instead uses hand gestures to communicate with his parents and siblings. Like many children with an ASD, he is easily upset by changes, even minor adjustments, in his routines or surroundings.

But although Umm Muhammad does what she can to regulate her son’s environment, there are variables she cannot control. The family of six is originally from Damascus, but fled to Idlib province after Abu Muhammad, the six-year-old’s father, was arrested and detained for two years in the Syrian capital.

Once a sparsely populated agrarian region, Idlib province—now largely controlled by a hardline Islamist rebel coalition—is home to an estimated 2.9 million residents, many of them displaced to the northwest as part of reconciliation agreements with the Syrian regime.

In Idlib, the family does not fear arrest like they did in the government-controlled capital city, but a move to the rebel-held corner of Syria presents its own challenges: the threat of airstrikes, a lack of trained specialized medical professionals and social stigma surrounding autism.

And while autism poses its own unique challenges, many of the difficulties that Umm Muhammad and Muhammad face are endemic to Syria’s rebel-held northwest, where many residents with chronic and mental health conditions find it all but impossible to receive adequate care in a medical sector that barely has the capacity to treat emergency, life-threatening cases.

The Dar al-Arqam center for children with disabilities in Idlib on August 17. Photo courtesy of Dar al-Arqam.

No cures exist for ASDs, three developmental, or neurodevelopmental, disorders now diagnosed under one umbrella term. However, a variety of health care professionals can provide assistance for people with an ASD and its wide-ranging symptoms: speech-language pathologists, behavioral specialists, occupational therapists and psychiatrists.

But after six years of war, the number of medical specialists available, particularly in rural areas, has dwindled.  Only an estimated 70 psychiatrists remain in Syria, the majority of them based in the capital Damascus, reported the UK-based NGO Save the Children in “Invisible Wounds,” a March 2017 study on the impact of the Syrian war on the nation’s youth.

In Idlib province, where Umm Muhammad and her son now live, the near absence of specialized providers is the main obstacle to obtaining adequate medical care for an ASD, an opposition health official and two staff members at centers for mental health and special needs in the province told Syria Direct.

‘Constantly changing situation’

Umm Muhammad first grew concerned about her son’s health when he was seven months old. At that stage, he had not said basic words like “mama,” and did not show any signs of speech development.

“He was completely silent,” Umm Muhammad says, and even when she tried to get his attention by talking to her infant son or moving her hands, he would only look at her for a few seconds at a time.

Umm Muhammad struggled to get her son to eat or drink regularly. Muhammad cried continuously, and obsessively bit the wooden furniture in the family’s Damascus home, she says.

When Muhammad’s speech delay and aversion to foods continued, Umm Muhammad took her son to a doctor in the Syrian capital.

The symptoms the baby displayed—his difficulties communicating and obsessive behaviors such as biting—were textbook signs of autism, the physician informed her.

When Muhammad turned two years old in 2013, Umm Muhammad started taking him to a medical center in Damascus, where therapists and mental health workers worked to alleviate the social difficulties and speech delay caused by his ASD.

Muhammad responded well to the treatment at the Damascus medical center, his mother says, showing early signs of improvement. But his progress was short-lived.

The year Muhammad started receiving treatment, his father was arrested by Syrian regime security forces and detained for two years. The family does not know the exact reason for Abu Muhammad’s arrest, but Umm Muhammad and her husband believe it was the result of a falsified accusation of terrorism by a member of the security forces.

The sudden, unexplained absence of his father—who the six-year-old is closest to—sparked an immediate deterioration of Muhammad’s condition.

“He began having these fits of uncontrollable anger, as if he were looking for something of his that was missing,” his mother says.

When Abu Muhammad was finally released in 2015, he decided to bring his family more than 300 km north to Idlib city in Syria’s rebel-held northwest, fearing that the security forces would arrest him again.

However, within six months, the family moved again, this time fleeing increased Russian and regime airstrikes on Idlib city. They moved north to the town of Harem, seeking relative safety close to the Syrian-Turkish border.

But even in the family’s new home, the sound of airstrikes and artillery fire still come, shattering the carefully-constructed environment that Umm Muhammad sets up for Muhammad each morning.

The most recent airstrike to hit Harem came on September 29. Syrian regime and Russian aircraft regularly launch airstrikes against Idlib province and adjacent territories. Bombings continue despite the establishment of a “de-escalation” zone in northwestern Syria, the fourth such ceasefire area in the country.

The sounds of warplanes and artillery in and around the border town of Harem make Muhammad “incredibly tense,” Umm Muhammad says.

When she hears the rumble of an aircraft approaching, she quickly takes her son to his room and sits by his side, attempting to brace him for the piercing sound of the plane as it flies overhead or, sometimes, the sudden shriek of an airstrike. But she can rarely keep Muhammad calm.

“His siblings understand what is going on around them,” Umm Muhammad says. “But [Muhammad] need special care, especially with the constantly changing situation that we are living in.”

Aftermath of a purported Russian airstrike on Harem, September 29. Photo courtesy of RFS Media Office.

‘Their eyes say it all’

The walls of Muhammad’s house in Harem, Idlib are the boundaries of his support network.

Within the home, his mother spends every moment she can anticipating her six-year-old’s needs and ensuring that each day plays out like the last. Abu Muhammad meanwhile spends most of the time he is at home by his son’s side, offering a comforting presence.

Muhammad’s siblings—13, 15 and 18—are responsible for the “games,” as Umm Muhammad calls them.  They take turns doing everyday tasks—helping prepare the day’s meal, personal hygiene, dressing themselves—in front of him, trying to get their brother to imitate their behaviors and learn to support himself.

The goal of these family activities is to bring Muhammad “out of his own world and into ours,” says Umm Muhammad.

The family home both shelters and protects Muhammad. Within its walls, his family can build a safe, secure environment for Muhammad while simultaneously protecting him from the world outside, the social stigma surrounding autism or, more generally, mental health and developmental disabilities.

In a rural countryside town in northwest Syria like Harem, “it’s impossible for someone with autism to be seen as a normal member of society,” Umm Muhammad says.

The mother of four no longer brings her son along on the rare occasions when she runs an errand outside the house. She has heard far too many hurtful comments directed at Muhammad, or towards her as his mother.

At best, Umm Muhammad says, neighbors and local residents in Harem pity Muhammad. But the worst, she says, is when members of the local community chastise her because they consider her son’s ASD as a sort of divine punishment for previous misdeeds: “If you were not at wrong with God Almighty, then your child wouldn’t be this way.”

“If they don’t say it with their words, their eyes say it all,” says Umm Muhammad, “that he is something less than human.”

Few options

“We can secure the funding” for autism treatment, Dr. Mustafa al-Aido, deputy director of the Idlib Health Directorate, told Syria Direct, “but the problem has to do with autism specialists.”

Idlib residents with ASDs “need special support and supervision by specialists and trained staff,” said al-Aido, which the opposition-run directorate cannot provide.

Syria Direct asked the deputy director for any available statistics on Idlib residents with autism spectrum disorders. He replied that the health directorate has not been able to complete a full survey of residents with autism spectrum disorders due to the organization’s focus on trauma and primary health care in the province.

But there are still a handful of centers in the province that take in cases of ASD in an attempt to provide psychosocial support and organize activities for Idlib residents.

Umm Muhammad brings Muhammad to the Sweida Charity Project, a center in the province’s northern countryside near Harem that oversees children with physical, psychological and speech disabilities, including seven cases of ASD.

The staff is comprised of physical therapists and a group of young college graduates from the area with degrees in health-related fields, the project director, who asked that his name not be mentioned, told Syria Direct. Most of the staff learned the basics of treating children while on the job.

“There are cases we are unable to take in,” says the project director, such as autistic children who also have epilepsy, “because they require a specialized physician.” The center cannot procure medication either.

Muhammad’s sessions at the center are “effectively a way for him to get his energy out and nothing else,” his mother tell Syria Direct.

What her son really needs, she says, is treatment by specialized medical providers: a speech therapist and a psychiatrist to prescribe medication for the symptoms of his ASD. But, with government-held areas like Damascus off limits, those types of services are only available across the border in Turkey.

Umm Muhammad last attempted to cross Syria’s northern border with Muhammad six months ago. It was her sixth attempt to reach Turkey since the family moved to Idlib province.

But the trek through a mountainous smuggling route proved too much for Muhammad to handle, even after his mother gave him a sleep aid to calm him for the trip.

“Any sound will aggravate him, and he’ll begin to scream,” said Umm Muhammad, who carried Muhammad in her arms for long portions of the journey. “We had had to turn around and go back.”

But Umm Muhammad says that she is determined to attempt the journey again to get her son the treatment he needs.

“I am watching him grow up before my eyes, and I am unable to give him anything,” she says.

“All I want is to hear him say the word ‘mama,’ just once.”

 

With additional reporting by Justin Schuster.