SULAIMANI, Kurdistan Region - A two-day conference was held in Sulaimani to raise awareness about autism in the Kurdistan Region, where stigma largely remains, attended by Iraqi and Kurdish officials, NGOs, as well as families of children with autism.
The National Autism Conference in Iraq (NACIQ), was organized by MERG Foundation for Training and Strategic Studies, and was the first of its kind in Iraq and the Kurdistan Region.
“The conference started after we had a study on autism last year in the cities of Erbil, Sulaimani, and Halabja. The results of our research showed us that only a report of the results of our studies is not enough,” Hemin Khasraw, president of MERG foundation, told Rudaw on Wednesday.
“People concerned with the topic come and talk about autism in a different manner,” he added regarding the importance of combining personal experiences with research.
NACIQ is a gathering of experts, advocates, researchers, and care-givers aimed at enhancing the broader understanding of autism in Iraq and the Kurdistan Region.
The lack of support and tolerance renders the Kurdistan Region a difficult place to live in for autistic children and their families, and their daily lives are aggravated by the absence of plans, and funding as well as a shortage of healthcare, health centers, and training facilities.
Plight and Prejudice: families taking the matter into their own hands
Ashna Omar Saeed is a mother of an autistic child and a trainer of people with autism. Her son was diagnosed with autism in 2009 after spending a fortune travelling to several countries. At the time of the diagnosis of her child, the term autism was unheard of in the Kurdistan Region.
“What is the next step after diagnosis? There is training and education for the child and creating parent societies where we spent a lot of energy,” Saeed told Rudaw English, adding that since then, she has established Autism Blue Organization, where she helps train parents of children with autism and helps in raising awareness.
“I personally can say that I have helped over 1000 families. Once every three months at Autism Blue organization, we have had courses for parents to teach them how to deal with their children and their treatment,” she said.
Speaking from personal experience, she stated that one of the most brutal challenges they face as families of children with autism are the stigma from society and that their isolation from social gatherings.
“My son is 20 years old. He loves to get on swings, and when he gets on one, he makes different moves and noises that attract the attention of others, which also breaks our hearts.”
Antigone Mara, an advanced professional educator in special needs, learning difficulties and syndromes who spoke at the conference, said the most important thing needed in the Kurdistan Region is to teach empathy to the people and to the society.
“We are different in our ways, and these people are different in their ways. We just have to treat them like equals and give them the opportunity to have a nice life,” she said.
Lack of funds deters KRG’s abilities compared to the federal government
Iraq is one of the signatories of a 68-article of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which entails the rights of people with special needs and integrating them with the rest of society.
“Iraq has completed the majority of the articles agreed upon in this convention,” Khlood Faris, head of the department of people with disabilities in Iraq’s Ministry of Labor and Social Affairs told Rudaw English.
Faris said that in its annual budget, the Iraqi government has provided salaries, services and special privileges for people with autism, while specialized centers and facilities are nearing completion.
Guardians of people children with disabilities receive a monthly allowance of 300,000 Iraqi dinars (around $200) for each child. However, those who reside in the Kurdistan Region, cannot benefit from it, as issues between the KRG and the federal government resulted in the latter halting the Region’s share in the federal budget.
“If you have noticed, they have talked in the panel about several forms of aid that we cannot provide in the Kurdistan Region unless the share in the budget and its financial entitlements are sent by the federal government,” said Zakia Seyid Salih, KRG’s deputy minister for labor and social affairs, adding that the government has its own plans which it can follow.
“We have the same issues they have in Iraq, but they are more open-handed in terms of aiding,” she added.
Raising awareness as a form of treatment
Autism diagnosis is difficult anywhere in the world. In the Kurdistan Region, the issue is complicated by a lack of public awareness about the condition, problems with services available, and societal stigma.
“We are newly acquainted with the autism spectrum and its diagnosis is not easy,” said Dr Khamis al-Saad, Iraqi deputy minister of health, adding that having a low number of specialists in autism and child psychiatry has doubled the burden of the government.
Dr Rahel Faraidun, deputy health minister of the KRG also agreed with Saad, saying that the main obstacle in the Kurdistan Region is having a limited amount of psychiatrists.
“In Sulaimani we have around 15 to 16 psychiatrists and they have more responsibilities other than this one, for detecting this abnormality,” Faraidun said.
The deputy ministers agreed that raising awareness about the disorder is one of the most effective forms of treatment, as important as establishing the necessary health centers and facilities.
“Every community in the world needs public education before other treatments. If we want to have a normal community we need to have strong rules and systems working to raise awareness about family healthcare and the autism spectrum,” Faraidun said.
“What is talked about here is not an illness, it is a matter of differences,” Salih added. “There must be coordination to raise awareness in society through the media, civil society organizations and even the related ministries in the government.”
No specialized schools, or curriculum
The atmosphere at many schools is one that autistic children do not thrive in, lacking bright artwork and appropriate toys. An advisor to the KRG’s education minister said that currently, the Kurdistan Region does not have schools for 534 autistic children, but the government has established schools for 8,602 children of special needs who require special education, which also faces its own challenges.
“The issue of special education is that the children who attend the schools do not have grave conditions, those in such conditions require special management and learning centers,” said Najmadin Ali Ahmed, advisor to the education minister of the KRG.
Ahmed said that the ministry currently cannot provide a special curriculum since the education process requires tests and certifications, and autistic children are not fit for such standards.
“We certify students based on our curriculum, and we cannot make a separate one,” he said.
Salih also praised Rudaw Media Network’s efforts to raise awareness about autism. Earlier this month, the American Autism Society, one of the oldest and most influential advocacy groups in the United States, commended Rudaw for its campaign to raise awareness towards the people with Autism in the Kurdistan Region.
