When Semira Ali left for Saudi Arabia about 20 years ago, she went in search of better opportunities, like thousands of her countrymen and women. There she met her husband, an Ethiopian, who was working as a driver and they decided to settle there and have a family.
Things seemed to have fallen in place. Her husband was making good money and she was able to stay home and raise their three children. A few years later, her two youngest sons were diagnosed with Autism Spectrum Disorder.
“We were saddened when we found out,” said Semira. “We were living far from home and life became difficult for us.”
Semira first noticed that something was amiss when her sons didn’t start speaking by the age of four and five; they had difficulty focusing and were not active in play. Taking care of two children with Autism became too expensive, even with the support of an organization there.
"The organization was helping us with school,” she said. “I only paid a third of the school fees for my children.”
Three years ago, Semira was deported back to Ethiopia and came back to her hometown Adama, 100 km from the capital. Now, her two sons spend most of the week at Bethel Adama Autism Center, where a majority of the 31 students there come from Middle Eastern countries born from parents in similar circumstances.
The center, opened in 2015, provides life skill training and communication education for children who struggle with learning disabilities. Though the Center takes care of these children, whose cases vary from mild to severe, there is no formal structure to the education it provides, according to Genet Neguse, founder and head of the Center.
“We don’t have a uniform curriculum,” said Genet. “We’re using online resources and what I have learned through training.”
Autism Spectrum Disorder, an umbrella term for a range of brain development disorders, is not well studied in the country and the patient-care alternatives are limited. The disorder affects how people communicate, learn, behave, and socially interact.
Currently, Bethel Adama Autism Center is the only center in Oromia Regional State.
“We use the previous medical reports of the children when we can, but most of the time they have none,” said Genet. “We use observation from our experience.”
For mothers like Semira, the center, which provides its services free of charge, is godsend. Her husband is still in Saudi Arabia, and unable to get a job because of Covid pandemic. She strives to make a living by renting out three small shops, adjacent to her house.
The center is fully funded by volunteers and though its work has been instrumental, it’s struggling to get government support. Adama City Administration had promised to give land to the center a few years back, but it has not yet materialized, and unable to alleviate the 14,000 Br. monthly rental fee of the center, according to Genet.
The center has 14 rooms, comprising class rooms, toilets, a dining room, a store and a room where the children watch TV. The narrow yard makes it difficult to undertake physical exercise and provide vocational training to the students. Currently, there are 32 children on the center’s waitlist.
"There is no community awareness and this holds back our progress,” said Genet. “The families of the children don't know what Autism is. There is no data about Autism and related neurodevelopmental disorders in the country."
One in 160 children have Autism Spectrum Disorder according to the World Health Organization. The prevalence in low and middle income countries, like Ethiopia, is unknown.
“The work that we do at the school needs to be supported by family,” said Bethelem Degefu, one of the center’s seven person staff. Some of the children suffer abuse at the hands of family members, according to the psychology graduate who started working there six months ago.
Other families expect quick changes and get frustrated when it doesn’t happen.
"The children learn from their peers and the time they spend with each other,” she said. “They observe how they are treated at home and they replicate that with other children. We have one student who lives with his grandmother and she treats him very badly. Then he comes to the school and repeats that.”
The movement to gain better recognition and support by the government for special needs education recently gained a new momentum. Twelve organizations, including Bethel Adama Autism Center, Nehemiah Autism Center, Dibora Foundation, and Fikir Ethiopia are forming a consortium aimed at working on neurodevelopmental disorders, according to the Coordinator, Rahel Abayneh.
“We’re evaluating the state of the institutions working on such disabilities and how we can supplement each other’s work,” said Rahel, who is the founder of Nehemiah Autism Center. “The biggest issue we want to work on is awareness of Autism.”
Nine of the Autism centers are in Addis Ababa, two are located in Hawassa, Sidama Regional State and one is in Oromia Regional State.
Autism care has advanced since the first center, Joy Autism Center, was opened in Addis Ababa, in 2002. Founded under Nia foundation by Zami Yenus in 2002, it provided care and support to 80 people in its two decades of service. Currently, Joy is raising funds for a new center that can work with 500 autistic children in Addis Ababa.
In Adama, which is home to nearly half a million people, Adama Hospital Medical College is the central source of data on Autism. The Hospital, which is the main referral hospital for 6 million people across five nearby cities, comes across Autism cases incidentally.
"Autism is a real problem in the community, but here there are no studies and research and we don't have any treatment specifically for Autism,'' said Dr Tegene Bekele, a pediatrician at the hospital. “Our patients come for different reasons, and we find out along the way. We only give medical treatment when they show aggressive behavioral changes and acute disease."
The data from the hospital shows that an average of 10 people with the disorder come to its doors every month.