ERBIL, Kurdistan Region - “People will never understand the sufferings of families who have autistic children unless they have one,” Hangaw Wahab said, expressing the depth of frustration felt by families in the Kurdistan Region with children who have developmental disabilities while trying to soothe his young son. He has three children on the autism spectrum. They have to spend their days behind four walls because they are not accepted at school and other kids refuse to play with them.
Wahab is a Peshmerga fighter, spending most of his long days and nights working far from the family home. “This has further increased the hardship,” he told Rudaw. His wife cannot handle their autistic and non-autistic children alone.
“They are socially isolated as well because no kid on the street is willing to play with them. Society further hurts their conditions. I have seen people asking their children not to play with our children ‘because they are crazy.’ This further damages their mental health,” said the father.
He received another disheartening blow when schools refused to admit his children on the grounds that they do not have specialised staff.
This is just the beginning of what will probably be a long, rocky life for the family as their sons Ahmed, 11, and Hezdar, five, and a 14-year-old daughter will all need more care as they grow older. The Kurdistan Regional Government (KRG) does not provide any support for the family.
Thousands of other families share the same situation as this Sulaimani family. Some have had even worse experiences in a society that has yet to understand the autism spectrum and its victims.
Unscientific diagnosing
The first autism diagnosis was made in 1938. Donald G. Triplett was from Mississippi, USA. Known as “Case 1,” he graduated from Millsaps College and enjoyed golf and travel. He worked in a bank for 65 years. The first autistic man is often seen as a figure of hope by parents with autistic children. He died at the age of 89 on June 15.
The World Health Organization (WHO) defines autism spectrum disorders (ASD) as “a diverse group of conditions. They are characterised by some degree of difficulty with social interaction and communication. Other characteristics are atypical patterns of activities and behaviours, such as difficulty with transition from one activity to another, a focus on details and unusual reactions to sensations.”
Autism diagnosis is difficult anywhere in the world. In Kurdistan Region, the issue is complicated by lack of public awareness about the condition, problems with services available, and societal stigma.
It takes many parents a long time to find out if their child is autistic due to lack of awareness about the spectrum. The most effective intervention is at or before preschool age when it can have major long-term, positive effects. But a great number of parents refuse to take their children to a diagnosis centre when they first notice mild symptoms of autism in their child because of the stigma and by the time they feel obliged to do so the child will likely have developed more symptoms, making it more difficult for therapy to be effective.
Varying results from different vocational centres and experts can also confuse the already-shocked parents. In the Kurdistan Region, diagnosis can also sometimes be rushed, with conclusions reached in just a matter of a couple of hours.
When I first noticed symptoms in my two-year-child, I did not know what autism was. People around me said the symptoms were normal and would fade with age. When my son’s condition deteriorated, I took him to a paediatrician who instantly decided that my child was autistic - a word my wife and I were not very familiar with. The doctor sent us to a vocational centre for confirmation.
At the centre, a young man said he was an expert from Turkey and in less than an hour he confidently concluded that my son was autistic and explained the costly therapy his centre offers. After spending thousands of dollars, we saw some improvements in our son. A few months later, however, two psychiatrists separately denied that he was autistic and said he could be cured if their methods were applied. Burdened with conflicting diagnoses and a suspicion that people were just after our money, we stopped paying for therapy.
Bamo Namiq is a dentist from Sulaimani province. He recently migrated to the UK seeking better care for his autistic child. He has temporarily returned, hoping to import his experience in the UK to the Kurdistan Region.
“When our child was diagnosed with autism, we did our best to seek therapy here, but after realising that all efforts would be in vain we chose to go to the UK - which was the best option at the time,” he told Rudaw.
He said it took multiple British health care professionals - a speech and language therapist, an occupational therapist, and a neologist - months to conclude that his child was autistic. This kind of thorough diagnosis does not exist in the Kurdistan Region, he said.
Lack of experts in the Kurdistan Region has compelled occupational centres to bring in people from other countries, especially Turkey, Iran, and Jordan. These experts spend a few months training young people from various backgrounds and then employ them as trainers in their centres. The entire treatment of autistic children falls under the care of these new trainers, with occasional check-ins from the experts.
Education
The Kurdish education system is woefully unprepared to educate a child with autism. Schools have a limited number of what are called social researchers whose responsibility is to help students catch up with lessons they missed. They cannot cater to the specific needs of an autistic child in a classroom with anywhere from 30 to 60 students, often including several with learning disabilities. The atmosphere at many schools is one that autistic children do not thrive in, lacking bright artwork and appropriate toys.
Facing the same problems that confront most families with autistic children, my son missed school last year. This year, I renewed my efforts to get him registered. I decided to convince a public school to accept him and they said they would if I could prove through medical tests that my son - who has mild symptoms - could learn. After visiting some of the schools dedicated for people with special needs, I came to the conclusion that the schools might in fact cause more damage to my son than helping him.
A principal told me that the school cannot pay special attention to my child because there are numerous students in a single room and the social researcher can sit down with my son only once a week only to help him with lessons he missed. “What if my son does not sit in the classroom?” I asked. His answer was disappointing: “We can’t do anything about it.”
I was shocked by the principal’s admission, but did not give up. I visited the education directorate several times to learn more about what they offer autistic students, but they failed to provide details and said “If you are not satisfied with our system, take your son to a private school.”
Finally, I found a private school that agreed to take him in. The international school says it has employed foreign experts and has a section for children with special needs. The fees are high, but with a discount offered, I am hopeful.
Schools only accept students with mild symptoms of autism and the limited number of schools dedicated for children with special needs discourages many parents from sending their children to their facility due to distance and poor quality of education and care.
Lack of services at public schools and bullying by other students forces many parents to turn to private ones where, if their child is accepted, the tuition could cost an arm and a leg or the parents may be asked to pay for an assistant to work with their child. These fees are impossible for many parents to afford as the financial crisis in the Kurdistan Region is worsening and people’s monthly incomes are shrinking.
Over a million people in the Region are civil servants who have not been paid on time and in full for nearly a decade due to the financial crisis. Most of these employees received their June salaries just a few days ago despite several budget deals between Erbil and Baghdad.
Naji Ali, head of the High Committee for Autism at the Ministry of Labour and Social Affairs, told Rudaw that the ministry has registered 3,561 autistic children but only 385 of them receive a 150,000 IQD ($98) allowance from the government. The rest are pending approval from the Council of Ministers. Registration has been suspended.
He said that the number of autistic children could be higher, but that lack of funds means they cannot conduct a survey.
Yadgar Sardar, head of special education at Sulaimani’s education directorate, said they help students find schools and follow up on their cases, but admitted that there are still problems.
“Our work is administrative, which includes sending students to schools. The rest is up to the teachers. We have opened training sessions for the teachers,” he said, adding that not all principals follow their instructions.
The official also acknowledged that the environment in public schools is not suitable for autistic children.
Amanj Mohammed is the head of a kindergarten. He told Rudaw that the decision to accept the registration of a student rests in the hands of the principal. “As per rules, all children should be registered, but the problem is that the final decision is made by principals,” he said.
Sabir Abdullah, an advocate for autistic children’s rights, said the first step to improve the lives of these children is through providing a suitable education. He referred to some families who migrated to Europe where, after receiving a proper education, their child’s condition improved.
Some families take the risk of drowning in the merciless waters of the Mediterranean en route to Europe in pursuit of better futures for their autistic children.
The situation for autistic children in the Kurdistan Region is “terrible,” according to Bahar Ali, principal of Sarshaqal school in Sulaimani. She criticised the authorities for treating special needs and special education alike.
“People with special needs are those who have a physical issue and we need to help them in this regard. However, special education is for those who have issues with their behaviour, brain and nerves,” she explained.
The principal blamed lack of trained staff for some of the issues and called on the government to hire experts.
According to the most recent information from the Ministry of Labour and Social Affairs, roughly 40 private centres exist in the Kurdistan Region, assisting approximately 2,000 individuals with autism.
Jailed at home
Vocational centres do not accept teenagers with the disorder.
Aras Osman, the head of the Kurdistan Autism Association, has a 27-year-old son with autism. He has appealed for the government to establish vocational training centres for children aged 12 and above. This would provide them with opportunities to learn skills and uncover their talents.
Osman said vocational centres are of high importance because, with them, in the future those with autism “will not need us to look after them."
He has to constantly accompany his adult son.
The Ministry of Labour and Social Affairs advocates for sending these children to private schools instead of the centres.
"Autistic children should be at the centre until they reach the age of six. Unfortunately, until now, we do not have a special governmental school designed for taking in autistic children," said the ministry’s Naji Ali.
There are around 200 registered autistic children in Halabja province, but there are only two vocational centres, which are funded by philanthropists.
Sozan Mohammed, director of Halabja Education Centre for Children with Special Needs, told Rudaw that her centre has a lack of trained staff.
“We have been working in this centre since 2007 and our staff has not increased. We have five trainers working on children with special needs, including autistic children. This number is very low for autistic children. According to international standards, an autistic child should have four trainers. We had a trainer who was responsible for ten autistic children,” she said.
Her five trainers work with about 100 autistic children. “We have financial, scientific and humanitarian issues at the centre,” she said.
Private centres can cost up to $1,000 per month, depending on how serious the case is and the quality of the service. Only a limited number of parents working in the public sector can afford this. Many parents have to take on part-time jobs to make ends meet.
When schools, public vocational centres, and neighbourhood children do not accept children with autism and parents cannot afford expensive private therapy, there is no other option for these children but to spend their whole day at home. Some of them are lucky to have smart phones, iPads, and televisions to kill time with - although experts warn that these tools can further desocialize the children.
Warvan Rubat is on the autism spectrum. His hyperactivity and the prospect of causing harm meant his mother had to quit her job. She has not left him unattended in the last 13 years. He has an uncontrolled tendency to eat anything edible in the home.
“We do not celebrate Eids. I cannot make my other children happy by taking them out. I do not visit anyone. My mother is our neighbour, but I cannot visit them because in my absence he will cause harm to the house and children,” Chinar told Rudaw.
Warvan has two brothers and a sister. His mother fears he could harm them if unattended.
The family lives in Duhok province’s Domiz.
His father has visited numerous schools, but none of them was willing to accept Warvan. “I tried in Duhok and Domiz but they did not accept him on the grounds that his case was serious. We are disappointed and decided to endure him,” Rubat said.
About 900 autistic children have been officially registered in Duhok province, but the real number is estimated to be around 7,000.
Public schools have closed their doors for the registration of new students this year, but the process continues in private schools until early next month.
Despite all of the obstacles, people living with autism in the Kurdistan Region have shown some incredible abilities. Rasan Jalilzadeh, 23, was denied an education, but he has been an inspiration for many parents who were despondent after their children were turned away by schools. He plays the piano and his condition is apparently improving, though he lives within the confines of his home like many other people with the disorder.
Fayaq Ahmed is another example. He has learnt five languages via television and mobile phone in addition to his Kurdish mother tongue.
As a parent, it is extremely heartbreaking to see your child being treated as an outcast because of their disorder. Like every child, those on the autism spectrum each have unique potential. My son started to speak, write, and read English before the age of five, without assistance from anyone. He puzzled a registration officer at one of the private schools when he drew her picture and wrote her full name in English on the white board. Yet, they refused to accept him.
Rudaw presenters Ranj Sangawi and Hemn Abdulla and reporters Naif Ramazan, Nzar Jaza, and Sazgar Salah contributed to this article.
