Analysis + Interview: Do We Care? The Challenges of Addressing Autism in Ethiopia

Surafeal and Beletech (Picture: Addis Standard)

By Etenesh Abera @EteneshAb

Addis Abeba, October 08/2020 – Beletech Kebeta, 57, a mother of four, is left with only three years to retire from a government office, while raising an autistic grandson, Surafeal, 15. According to Beletech, she received Surafeal under her care when he was only forty days old. “His parents had no clue about his being autistic. After I received him from his mother, I didn’t identify the problem either. But I was sure he was different from other children”, said the grandmother.

According to Beletch, because they didn’t know anything about autism they have been in a lot of places both to health centers and spiritual healers. “Until he reached the age four we were on the medical follow up. But then, my other son Zacharias [Surafeal’s uncle] brought a newspaper which had a piece about autism.  When we cross checked the article and Surafel’s symptoms it was very similar. We immediately took him to Joy Autism Center. Unfortunately, it was full at that time.”

“I thought it was only a problem of speech impediment but the problem was worse”, said Beletech in a heartbroken voice. “In between,” she added. “We began a medical follow up at Yekatit 12 Hospital. After a while, I heard a new autism center was opened, Nehemiah Autism Center, and I went to Rahel the founder. Glory to God! After she looked at the situation of my grandson, she decided to receive him even though the list was full.’’ Beletech was expecting to make payments but everything was provided for free. The center was covering all expenses for them including transportation.

“I have been praying to my God that if you take me don’t let my grandson suffer, take us together instead because who was going to take care of him if I die?” But after Surafeal joined the center he has showed a lot of improvements, according his grandmother. “He could eat by himself and go to the rest room by himself.” said Beletech.

After staying for 6 years at Nehemiah Autism Center, the center was closed. By this time, Surafeal was 15 years old and Beletech was nearing her 60s. After their return, however, Surafeal’s behavior began to change for the worst. He became very angry, aggressive and restless. It was getting harder and harder for an already frail grandmother. “While he was at the center,” says Beletech. “He was disciplined. He rushed to wear his uniform and waiting at the gate until the school bus was coming. Similar activities after he was back from the center too.”

After Coronavirus (COVID-19), Nehemiah was closed. “If the center will is not opened again. I will be forced to stop my work and take care of my son. Then, I don’t know how I will be able to feed the entire family”, said Beletech. She also said “the government was looking at cases that have media attention but they forget about autism and related problems”. “The government needs to look at us. While they try to solve problems related to the elderly and street children they forget totally about autism. We need the same treatment just like the others. If the government is negligent, what is the future of these children?”

Beletech also told Addis Standard that she has another granddaughter who is autistic, who is also Surafeal’s sister, five years younger than him. They share the same father but different mothers. She currently lives with her parents. Beletech told Addis Standard that this little girl cannot walk, cannot speak and cannot urinate properly although she is 10 years old. She said she is mostly kept at home. Addis Standard attempted to reach her family but did not succeed.

Understanding Autism

Autism or Autism Spectrum Disorder (ASD), according to the World Health Organization (WHO), refers to a range of conditions characterized by some degree of impaired social behavior, communication and language, and a narrow range of interests and activities that are both unique to the individual and carried out repetitively.

The US Center for Disease Control and Prevention (CDC) indicates that people with ASD often have problems with social, emotional, and communication skills. Signs of ASD begin during early childhood and typically last throughout a person’s life. They might repeat certain behaviors and might not want change in their daily activities. Many people with ASD also have different ways of learning, paying attention, or reacting to things.

Autism to Ethiopian context has been treated poorly as the children with these disorders are often isolated and hidden from society predominantly due to superstitious reasoning leading them to poor health and nutrition problems. Additionally it is addressed poorly as governmental or social stakeholders are not seen giving due efforts to the magnitude of the condition occurring nationwide that was estimated to be about 500,000 children, according to a study conducted by Burton (2016)[1].

Are Autism Care Institutions Expendable?

Nehemiah Autism Center (Picture: Nehemiah Autism Center)

Autism is one of the loosely treated conditions yet requiring an intensely continued and close attention of parents and special needs experts. In Ethiopia, there are two dominantly known nonprofit, nongovernmental organizations specifically working to address problems of children with autism by improving healthcare and special education services. One is the Nehemiah Autism Center that was established in 2010 by the “ReachAnother” Foundation and Rahel Abayneh in Addis Abeba and the other is Nia Foundation’s Joy Center that was founded by Zemi Yenus in 2003. Rahel Abayneh and Zemi Yenus, they both were determined to open their respective autism centers because they could not find schools willing to accept and provide services for their sons with autism.

Recently the Ministry of Education (MoE) of the government of Ethiopia has announced its plan to reopen schools in accordance with the precautions recommended by the Ministry of Health (MoH) and WHO guidelines, yet the MoE in its announcement has not indicated how the special needs demanding children are addressed within the school reopening framework. While all the preparations are undergoing to reopen schools, Nehemiah Autism Center was closed the last six months following the coronavirus pandemic and lack of budget is, however, on its way to stop it functioning completely, according to the founder Rahel Abayneh.

Nehemiah Autism Center

Rahel says autism is a neglected area by the government and the depth of the problem is not well researched yet. She said “We have been in the Ministry of Labor and Social Affairs but they could not even differentiate between Down Syndrome and Autism.” While referring to the Ministry of Health, Rahel said she came to learn “their negligence to autism as they consider conditions like autism as non-fatal and do not weigh enough to qualify for due attention.”

According to the founder, they do have more than 600 autistic children on the waiting list to join the center. “It is really heartbreaking returning the autistic children back to their home specially because most of the families are poor single moms who got divorced as a result of their child’s condition’’ added Rahel.

Nehemiah Autism Center

According to Rahel, after they closed the center they have been helping the family and follow up their children while they are at home. “Our donors are a group of families with autistic children who live in the United States. The government body said that they would give us a place around Akaki Kality, the eastern part of Addis Abeba which is very difficult for us to go such a far place with autistic children. “We, however, keep pushing to find a safe place in the central part of the city.” said Rahel. Rahel told Addis Standard, however, that they are not getting any kind of assistance from the government. “What the government currently has on hand is a piece of land. What we need is a land to build a center and receive a lot of students as much as possible”, said Rahel.

“As a taxpayer citizen,” she continued. “I am witnessing a situation in which the government is facilitating different development infrastructures that have lesser importance of priority than addressing problems related to autism. For example, there is no specialized health facility for autism. I know there are some private service providers which are expensive for the majority of us and mostly parents putting their effort solely to help their children.” She also mentioned their third branch found in Hawassa that was in danger of closing due to lack of budget. “I was the one who encouraged the parent of the autistic child to open the center. Currently she has 25 children to look after at the center.” In her final message, Rahel urged the government to support the centers and to give the proper attention before the social problem in connection with autism intensifies much wider than it is now.

The Interview

Bethlehem Tekola

 Bethlehem Tekola Gebru completed her MA degree in Social Anthropology at Addis Ababa University, Ethiopia and her PhD in the department of Psychology at University of Bath, United Kingdom. Since 2012 she has been involved in three autism research projects in Ethiopia, leading the design and execution of the qualitative research component of these projects. She is currently based in the Department of Psychology, King’s College London, United Kingdom.

Addis Standard’s Etenesh Abera sat down with Bethlehem Tekola Gebru, Researcher on Autism Research Projects in Ethiopia.

AS: What is autism?

Bethlehem Tekola Gebru: Autism is a lifelong developmental disability. According to the World Health Organization (2013), autism spectrum disorder (ASD) involves impairments in social interaction, communication and repetitive, stereotyped behavior. Autism can co-exist with conditions such as intellectual disability and Down syndrome.

Do you know the current estimated number of autistic children in Ethiopia and what the numbers are indicated?

The prevalence of autism is unknown in Ethiopia. Generally, in Africa, the precise prevalence of autism is unknown, though is likely to be at least as high, if not higher, than high-income countries. In the United States, for example, autism is reported to affect one in 68 children. The majority of autistic children in Ethiopia still remain without any formal diagnosis due to lack of knowledge and awareness, inadequate mental healthcare facilities and shortage of trained personnel, especially in rural Ethiopia. While the first clinical autism diagnosis in Ethiopia was formally documented in 1986, it was not until after the start of the postgraduate psychiatry training at Addis Abeba University in 2003 that autism became more widely recognized among health professionals in Ethiopia. Earlier, children showing symptoms of autism in Ethiopia would typically be misdiagnosed with intellectual disability.

What are the challenges of autistic children and their families in Ethiopia especially in the time of Covid19?

Autistic children and their parents in Ethiopia face multiple challenges. In our research, we have come across autistic children who were locked in their house. When no support is available, some parents resort to chaining up their autistic child at home when they have to go out. Autistic children are vulnerable to abuse and neglect. Most autistic children in Ethiopia do not attend school; often they are not accepted at mainstream schools or are expelled. Ethiopia’s fifth Education Sector Development Program indicates that only 4% of children with special needs are enrolled in primary school education. Even those children who have the opportunity to attend the few mainstream schools in Addis Abeba which provide inclusive education programs for these children, do not get adequate support that is geared specifically to their needs.

Generally, health and educational services for autistic children in Ethiopia are scarce, and largely confined to Addis Ababa and inaccessible to the majority (85%) of the population living in rural areas. There are only two governmental specialized child mental health clinics: Yekatit 12 and St. Paul’s hospitals, both located in Addis Abeba. In Addis Abeba, which has a population of more than four million, there are three centers for children with developmental disorders including autism. These centers have long waiting lists.

Autistic children and their parents also experience stigma (such as rejection, negative judgments and lack of support) within their own family as well as from the wider public. Mothers who often take the main responsibility of caring for their autistic child experience enormous challenges including exhaustion, leaving their work or working less hours and foregoing their career to care for their child. The fact that mothers are the primary caregivers of their autistic child also means that in the absence of support services mothers are forced to stay at home with their child without social life or being able to work outside home.

In the time of Covid19, autistic children and their parents can be vulnerable to social isolation and the associated mental health problems that come with this (including depression, anxiety and psychological distress). Single mothers raising their autistic child without much support from their family and other support networks are particularly vulnerable to these challenges. Single mothers raising autistic children may also struggle to make ends meet as it is difficult to bring income for their family by working outside home.

Is there any policy currently including autistic children? If not, what kind of policy should be implemented?

With regards to children with disabilities in general there are a number of legislation and policies. Article 41(5) of the constitution of the Federal Democratic Republic of Ethiopia states “The state shall, within its available means, allocate resources to provide rehabilitation and assistance to the physically and mentally disabled.” In relation to international conventions, Ethiopia is a signatory party to the United Nations Convention on the Rights of Persons with Disabilities (ratified in 2010) and the Convention on the Rights of the Child (ratified in 1991). There are also legislation and policies of key government departments such as health, education and employment that are relevant to children with disabilities. The Ethiopian National Mental Health Strategy (2012/13–2015/16) presents a plan for scaling up mental healthcare and recognizes children with mental disorders as a vulnerable group. This is useful in improving services for autistic children in future. Government and other stakeholders should work together in implementing these policies in a meaningful way.

What should be done to create awareness of autism in the community, which includes paradigm shift towards problems related to autism (especially relating the issue with some kind of punishment from God)?

I think as a society there should be a change in the way we see disability. There is lack of acceptance and shame in relation to having an autistic child or a child with intellectual disability. The parents we spoke to say their family and relatives are embarrassed to be associated with their autistic child or their child with intellectual disability. A mother of a daughter with intellectual disability told us that her family told her not to bring her child to their house during daytime when people can see her. She said her family are worried about their dignity. Another mother said her mother told her to take her son to the back of the house whenever someone comes to their house because she was ashamed of being associated with her child and that her family only cared about their family name. Parents told us that their family sees their child’s condition as something they brought because of their sin, as punishment from God or as a curse or possession by evil spirits and they felt stigmatized by their family, neighbors, relatives and when they go on the street with their child. Mothers are often blamed for their child’s condition. Autistic children sometimes are forced to leave public buses, and taxis are not happy to take them. Sometimes it is also difficult for parents to find rental accommodation because as soon as landlords know about their child’s condition, they would force them to leave.

Parents of autistic children such as Zemi (Founder of the Joy Centre for Children with Autism) and Rahel (Founder of Nehemiah Autism Centre) have done lots of remarkable work in terms of raising awareness about autism and supporting autistic children and their families. They should be encouraged and supported. Local nongovernmental organizations (NGOs) such as Cheshire Services Ethiopia and religious charities also contributed to an increase in autism awareness and service provision in Ethiopia. Each of us can also make a difference by challenging social and cultural norms/practices that contribute to stigma such as the use of stigmatizing language to describe these children. Our previous work in Ethiopia also suggests that a brief training intervention for community health workers decreases negative beliefs and stigmatizing attitudes about children with developmental disorders such as autism.

What is the experience of other countries towards autism and would you share with us some?

Many of the challenges I described above are not unique to Ethiopia. Studies from other African countries show that, as it is the case in Ethiopia, autistic children and their parents face many challenges such as lack of health and educational services, lack of awareness, financial and caring burdens, social isolation and stigma. One study in Kenya, for example, reported that caregivers of autistic children experienced social isolation and stigmatization, and mothers in particular experienced rejection from partners, family and the community as they were held responsible for their child’s condition. It is important to add that stigma and social isolation are also experienced by autistic children and their parents in many regions of the world including Asia and Western, high-income countries. Although the situation in terms of health and educational services for autistic children is much better in Western, high-income countries such as the UK, parents in these countries also face difficulties in terms of accessing appropriate services for their autistic child. This is particularly challenging for migrant communities such as Ethiopian and Eritrean migrant communities in the UK.

What is the future for autistic children?

Many parents we spoke to express that due to lack of adequate health and educational services for their autistic child, lack of understanding about autism and stigma life is really difficult for them and their child. But parents are also hopeful about the future. In addition to the initiatives I mentioned above by parents of autistic children and other stakeholders such as NGOs, there are other encouraging initiatives. For instance, the World Health Organization has developed a low-cost, scalable Caregiver Skills Training (CST) for caregivers of children with developmental disorders including autism. This program aims to support families by teaching the caregivers strategies to engage their child in communication and play, promote learning and reduce problem behaviors. Our research team based at Addis Abeba University and King’s College London led by Dr Rosa Hoekstra have adapted and piloted this program for use in the Ethiopian context. Recently, our team has also received funding from the National Institute of Health Research (NIHR) to improve the identification of children with developmental disorders including autism in Ethiopia and Kenya at community level and their continuous referral to the CST program. We hope this would make a difference in the lives of autistic children and children with other developmental disorders in these countries. AS

[1] Burton, A. (2016). Ethiopia: Educating everyone about autism. Lancet Neurology, 15, 1307–1308. doi:10. 1016/S1474-4422(16)30297-6

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