Nowhere to turn: The perseverance of Iraq’s autistic community in an age of government neglect

Despite medical advances in diagnosing autism, the condition’s indecipherability makes it the black box of neurological, developmental disorders. It discriminates against no one, impacting an estimated one percent of the global population, including Arab countries reeling from the whiplash of economic malaise and war.

Nineteen years ago in Iraq, with the onset of the US occupation, institutional care – the backbone of Iraq’s health system — shattered. 

Stunted, unrecovered and operating on a shoestring budget, practitioners lack the tools and clinical expertise to challenge the stereotypes mischaracterising Iraq’s autistic community of 72,000. 

"Autism was either the pink elephant in the room, or the only topic of conversation, underscoring society’s misplaced emphasis on prescription drugs and surgery to 'cure' the condition"

The ballpark figure is backed by research from the Baghdad University centre for education and psychological research. But Sheyma Ghassan al-Hashimi — mother to two autistic children — contends that the true figure could be as high as 150,000. Like other Iraqis, she believes that the spike in autism is associated with the observed increase of toxic environmental pollutants in post-occupation Iraq. 

Dozens of privately-funded specialist care facilities exist, from Baghdad to the Kurdish Region of Iraq (KRI), with the exception of a single government-funded clinic in the capital. 

Sheyma reeled off the list of centres where her eldest, Aya, had been enrolled for a short-lived period. She explained that the quality of private care had been plummeting steadily due to Iraq’s continuing brain drain, funding shortages, high worker turnover and the risk of closure in times of Covid-19. The struggle to find adequate care was also compounded by the need for vision therapy to treat her children’s optic neuropathy. 

The mother added that these factors had also started to unsettle the routine that kept Aya grounded, forcing her to make the difficult decision to homeschool her children. 

Sheyma transformed the family home into a sensory play park, helping to nurture Aya and Mohammed’s creative and musical talents, in a manner that private tuition could not. 

The difficulties Sheyma faced went deeper than Iraq’s health care crisis, however. 

Along the winding road she travelled, she met spin doctors and witnessed teacher violence and prescription abuse. She voiced concern that autistic children as young as three, were becoming dependent on the antipsychotic drug, risperidone, which she said is a popular choice among autistic carers hoping to subdue the condition.

"In more extreme cases, families mistreated autism as demonic possession, leading them into the hands of unqualified soothsayers and clerics, whose unorthodox methods are tantamount to child abuse"

Another taboo-fuelled practice has seen children with learning difficulties grounded inside their homes indefinitely — out of sight. Sheyma underlined that the practice is not exclusively practised by educationally deprived communities, adding that “affluent families, even physicians, are known for it.”

“Some families fail to understand that autism is not a problem in need of fixing. Still, I don’t blame them; they are without support.”

However, she was less forgiving of doctors fuelling drug dependency, due to their failure to caution families of the risks associated with risperidone. In an effort to prevent others from falling prey to profiteering hustlers, Sheyma and her husband launched Autistic Iraq, an Arabic-language Instagram page documenting their journey, sharing tips and experiences, and challenging popular myths. 

 The content centres around Aya and Mohammed’s struggles and creative talents. Since going live in April 2020, the page has amassed a following of 20,000, beyond Iraq, in Oman, Jordan, the Emirates, and Saudi Arabia. 

She attributed her children’s unfettered growth to the united front that she and her husband represent, adding that without him their journey would have been rough sailing. She has grown accustomed to government inattention, by a state she said has offered “little more than slogans.”

For the International Day of Disabled Persons, Sheyma said that the carers and families of autistic children had been invited by the state to attend “tokenistic festivities.”

“And you know what they gave us... a pack of crayons,” she said laughing in disbelief, while rhetorically asking  “what else has the state provided?” Her extensive efforts to lobby the government — Iraqi premier, Mustafa al-Kadhimi in particular — urging him to establish a non-profit care centre, amounted to very little.

She spent the next seven years in Amman learning nothing... She didn't laugh, she didn’t cry, she couldn’t even express her hunger

Insufficient care and societal ignorance also drove paediatrician and mother to 21-year-old autist Fatima, Dr N, to leave Iraq for Jordan in the late 90s. 

Even after Fatima's diagnosis at the age of two [in 2003], her mother says that she spent the next seven years in Amman “learning nothing.”

“She didn't laugh, she didn’t cry, she couldn’t even express her hunger.”

Politics at the time had taken centre stage; particularly the war on Iraq which preoccupied even doctors who listened but only passively to Fatima’s unmet needs. She was initially treated as ineducable, but the tipping point that impelled the family to migrate (this time to Canada) were the societal attitudes that bred effusive ignorance and shame. 

Commenting on his own experience as a father to an autistic adult, UK-based doctor, Ihsan Tarzi, said that “in Iraq giving birth to an autistic child is a serious affliction,” arguing that conventional wisdom denigrates the community as “mentally challenged and retarded”.

Dr N added that neurological disorders did not feature in the medical syllabus at the Baghdad-based college of medicine from which she and Dr Tarzi graduated in the late 80s.

Autism was either the pink elephant in the room, or the only topic of conversation, Dr N said, underscoring society’s misplaced emphasis on prescription drugs and surgery to “cure” the condition.

 "Neurological disorders did not feature in the medical syllabus at the Baghdad-based college of medicine in the late 80s"

The other fear she spoke of was Fatima’s inability to comprehend and observe religious rituals in a conservative society, and the inevitable risk of sexual harassment. “I decided that I needed to remove her from this environment to secure her future.” 

Founder of the Mesopotamian-inspired, graphic novel, The Epics of Enkidu, Kuwait-based, Iraqi writer and comic artist, Ahmed al-Amin, decided that the protagonist of his work would be a neurodiverse individual. His autistic nephew was his muse, whose unmistakable sui generis inspired the novel. “His brain works so fast that the world around him looks so slow, and that’s why he acts differently,” Amin explained. 

Despite the lack of care available in Iraq, Amin commended the resilience of the Baghdad-based, Al-Duha Centre for Speech and Development, which by some unexplainable miracle was able to restitute itself after its survival was threatened by the pandemic. The centre, founded in 2014, is reliant not on cash handouts but on donations of technical equipment and resources, to teach the skills needed for the meaningful participation of autistic children in their respective societies. 

In this manner, independent centres and families alike have learned how to survive in an age of government neglect, but the precarity of the care they provide has endured. 

Aspiring paediatricians and students at the University of Dohuk, specialising in neurodisability told The New Arab that undiagnosed children are misplaced in mainstream schools, and subjected to discriminatory practices and bullying by peers and staff. 

Dunya’s diagnosis, which came 14 years too late, deprived her of basic education and a stable home after her condition contributed to her parent's eventual divorce. Aged 13, Dunya’s father took her to a Kurdish consultant who recognised her condition immediately and recommended a specialist school where she has studied ever since. 

In more extreme cases, families mistreated autism as demonic possession, leading them into the hands of unqualified soothsayers and clerics, whose unorthodox methods are tantamount to child abuse. 

"Upon entering the field a decade ago, Dr Ali recalls that at least 95% of families impacted by autism had never heard of the condition"

Rayyan, who studies psycho-social care at Dohuk University, noted that though it is rare, some families had taken advantage of their child’s condition to secure a one-way ticket out of the country – “using their child as an exit strategy”.

The technical director of the Naz Dohuk Autism Centre, Dr Delshad Ali, identified financial deprivation and insecurity as the main causes for the lack of specialist care in the KRI. “Interventions such as applied behaviour analysis are costly,” he said, while adding that compassion and care towards autistic individuals also remain in short supply, as a result of medical misdiagnosis.

Upon entering the field a decade ago, Dr Ali recalls that “at least 95 percent” of families impacted by autism had never heard of the condition.  The absence of laws to protect the rights of autistic children or those care providers was another major concern Dr Delshad underscored. “Anyone can open a centre and perform diagnostic testing.” 

As societal attitudes change, trainee doctors in Erbil, Dohuk and governorates in central and southern Iraq, and above all else unpaid careers, predominantly the mothers who provide 24/7 care, are the real game-changing cultivators of a healthy, equitable society where autistic children are not forced to hide, but can instead thrive.

Nazli Tarzi is an independent journalist, whose writings and films focus on Iraq's ancient history and contemporary political scene.

Additional reporting by Mosaab. K. Ali in Dohuk