(Nairobi) August 7, 2015 — "In our culture, when people look at my children they believe they have been bewitched. Some people try to marginalize them. They don't understand my family," says David Bulambo, a Congolese refugee in Kenya who is the father of two autistic girls. "We often feel isolated."
Even though one percent of the global population suffers from autism, the disorder remains unknown to many. Like other disabled persons, people with autism are often excluded in society. For refugees who already face marginalization, raising a child with autism can be an enormous challenge.
David didn't know anything about autism until two of his three children, Zoe and Shekinah, were diagnosed with the disorder.
Autistic children can struggle to control their body movements, interact socially and express themselves, both verbally and nonverbally. Caretakers of these children often struggle with accessing proper information and services to assist. David is trying to ease this burden for refugee parents with autistic children in Nairobi.
Empowering refugee parents. "Since coming back to Nairobi I haven't been able to concentrate on anything except looking for services that can help my children,"said David. He began to wonder how other refugees with autistic loved ones might also be faring. "I know across the continent sometimes autistic children face human rights abuses.”
After doing research about the disorder, he proceeded to launch the Refugee Autism Project (RAP) in February to link refugee families in Nairobi with autistic children.
The group aims to educate parents through monthly meetings attended by medical professionals, share vital information, combat stigmatization and isolation, contribute to research on the disorder, and ensure autistic refugee children access quality education.
"I have realized that here in Kenya there are some private institutions dealing with autism, for example the Autism Society of Kenya. I visited to get more information and understand how they operate. Then I started networking more. Whenever I meet refugees I ask if they know anyone with family members with autism to identify these families," he said, emphasizing the message of Pope Francis at the Vatican's first conference on autism that forming a network is of upmost importance.
So far, he has been able to identify five other refugee families that have autistic children, but believes the group will grow. By staying connected, he says, parents can support each other by learning new ways to cope with the condition of their children.
Through his research, he was also able to find a program through Feed the Children that offers free occupational therapy sessions for children with autism. This is a lifesaving resource because the price tag of other services in Nairobi make them inaccessible for refugees. David can take his children there at least twice every week.
"Having two autistic children is not easy. I have been visiting families with kids with autism and it is not easy for them either. We should congratulate ourselves for trying to cope with this,"he said.
Overcoming obstacles. Finding education for his daughters, however, has proven more difficult.
"I have gone to visit the schools I can afford and am always told they can't accommodate the special needs of my children, so I must keep them at home. They have gone two years without attending school now; those with special needs programs are far out of my price range.”
Children who have autism can still learn and prosper.
"While autistic children are young , if they get good care, they can integrate in normal schools and become independent when they grow up. Albert Einstein himself was an autistic child,"said David. Ironically, Albert Einstein was also a refugee.
By raising awareness with community members, David believes he will be able to overcome the isolation and stigmatization that his daughters face. So far he's on a good track, finding ways to not only nurture his own children, but empower other refugee parents too.
JRS sponsored David to study journalism at the University of South Africa.
by Josemarie Nyagah, JRS Nairobi Education Intern