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Harsh realities of developmental disorder

Harsh realities of developmental disorder

With little information at hand, Bethlehem Tadesse began to suspect her first daughter was quite different than the rest of her children. Few years after she was born, her daughter began to have difficulty paying attention, was careless in her actions and had difficulties staying still.

Also, children her age shunned her and she needed to be supervised at all times. 

It was a family friend, a British medical doctor who first suspected her child might be suffering from attention Deficit Disorder. That was the first she ever heard about the developmental disorder.

She felt hopeless as she found more about the disorder from Google search. It broke her heart. The child she had on her graduating year, ignoring the call to abort and pre-longed her ambition to become a medical doctor so she could enjoy motherhood was becoming a burden and with little support and a growing need of her daughter, that would eventually end her ambition to study medicine and her relationship to a man she assumed would be her husband. 

“My daughter took much energy from me and my marriage was broken and I became hopeless for someone who has always been the pride of my family, the first to go to college and pursue higher education with distinction,” she told The Reporter. “When I found out she might be suffering from a deficit disorder and learned about it, all I did was blame myself, hid her from a society that saw her condition as a curse and I cried myself to sleep every night.”

“Then, as a personal defeat, I returned home to my parents, with a child who needed help and we became their burden,” she added, as she wiped tears from her face, whose hardship makes her look a decade older than her actual age.  

For Bethlehem and others in Ethiopia who have a child with a developmental disorder, life is very difficult. The challenges, the taboo and the stigma of the illness among Ethiopians – at home and abroad is still a pressing issue.

For a 37-year-old woman who asked to stay anonymous fearing the stigma associated to her child suffering from autism, which was her case. Thankfully, she discovered the Joy Center for Autism in the capital. Up until then, she was forced to tie her daughter as she went to work and was not sure if the child was alive when she returned from her job, as a local boutique hotel in the capital.

“Before I discovered the Joy Center for Autism and registered my daughter there, I had very little options,” she said. “Because I had limited financial resources and there was a need for me to work and I had little support.  I tied my child to her bed as I went to work. I came back home, not knowing she was alive or dead. Thankfully, there is now this center, which can help her and assist her and understand her needs.”

According to an academic article in Global Mental Health (Tekola et al., 2016), services for children with developmental disorders in Ethiopia are extremely limited and largely confined to Ethiopia's capital city, with a little provision in rural areas. Families of children with developmental disorders such as autism and intellectual disability experience practical and psychosocial challenges, including severe stigma. 

The center was opened in 2011 as a non-profit entity and was founded by Aberu Demas who had returned to the country from the United Kingdom with a son suffering from autism.

For her and others, in Ethiopia with a population of more than 100 million people and a scarce medical facility, a place to accommodate such a specialized treatment center has been elusive. However, there are few centers that have opened shop in the capital in the last decade, including the Nehemiah Autism Center.

While Ethiopia has made great strides to change its healthcare system to a population that still is poor and relies on its publicly funded general health care, with its lone mental health institution, Amanuel, Hana received little by way of professional help and with her condition, her mother’s marriage, livelihood became doomed and three years after living home as a newly minted graduate, Bethlehem moved back to her parents’ home, with a child whose need overburdened her and her aging parents.

Another father who also asked to stay anonymous says that the Ethiopian public still has misgivings of it and there remain challenges for many Ethiopian families.

“I live in Europe and one of my children has a mild developmental delay and my 9-year-old brother has severe autism in Ethiopia and goes to Nehemiah Autism Center,” he said. “Even though my son has not been diagnosed with autism, sometimes we isolate ourselves due to even his mild problems. There is an irony here, at our church, there are some kids with extreme autism and the church accommodates. But in many areas, with our Ethiopian communities, many people divorce because of the grief of having such a child and some simply disappear.”

“This is ironic that the general European society does not shame you, like the public in Ethiopia. Ethiopians in the diaspora faceless societal and cultural challenges but they still have self-castigation and embracement due to better life expectations, sensitivity and their false sense of public perception,” he added. 

Rosa Hoekstra, a senior lecturer at Kings College in the United Kingdom has been working on child developmental disorders in Ethiopia. When she and her team began work in Ethiopia, she recalled:

“My impulse as a researcher from a wealthy Western country was to teach what we know about the causes of autism. I instinctively rejected spiritual explanations and treatments, even though spiritual explanations for autism are common in Africa,” she wrote. “But my Ethiopian colleagues explained this might not be a fruitful approach. In Ethiopia, where biomedical services are scarce and most families first seek help from traditional healers, it is much more effective to work with the traditional institution than against them. Harmful treatments should be discouraged, of course. But many spiritual or religious ritual cause no harm and be helpful coping strategies for families.”

Yosef M. Kebed, in 2017 wrote a graduate thesis on the subject - Early-Childhood Intervention Strategies and Services: Situation of families of Children with Developmental disability in Addis Ababa.

With little reliable census, he used one from 2007 and noted the dire situation in the nation, including according to a 2007 census, the prevalence of disability is 1.0 percent for children with disabilities in Ethiopia, meaning around one million people in Ethiopia live with some form of disability and that according to Handicap International, only three percent of Ethiopians estimated 2. 4 to 4.8 million children with disabilities go to school.

“Poverty as a profound factor, lack of knowledge and skills, unavailability and inaccessibility of services, lack of qualified professionals and discrimination of developmental related disabilities in service delivery makes life tough for these families,” he observed. “They have lots of needs which are still unmeet bay any concerned bodies: specialized health service need, specialized educational need, psychological/ emotional need, knowledge and skill training need on how to help their child, economical need, and spiritual needs and spiritual needs and there is no much support both in policy and service delivery system.”.

There are now families, specifically in rural cities that are facing some kinds of challenges that is even worse that those situated in the capital.  

Teferi Tesfaye recalls the situation of his son in Adama a decade ago. With little knowledge of the subject, his son was neglected at family functions and was nicknamed as the “crazy boy” by many and was tied to his bed at all hours – if not for his regular visits to churches all over the nation.

“We thought to feed him good food and taking him to churches and offered him prayers and assumed that would cure him”, he said. “At times, we also suspected he was just playing us for stupid. If I knew what I know now about the issue, his sickness, I am sure he would be alive today”

His son died on his 13th birthday.