For aid to Ethiopia’s autistic, the numbers don’t add up

by Zelalem
Men and women on the steps of the Church of St. Mary of Zion in Axum, Ethiopia. A deeply religious nation, Ethiopians ascribe much of what happens in life — such as having a child who displays behavioral differences — to God’s will. Photo by: A. Davey / CC BY

A church in Ethiopia’s ancient northern city of Axum claims to guard the biblical Ark of the Covenant, replicas of which occupy the center sanctum of churches throughout the East African country.

Ethiopia is a deeply religious nation, and people ascribe much of what happens in life to God’s will. So when a child who displays behavioral or developmental differences is diagnosed with autism — assuming the family has access to such a diagnosis — it can be equivalent to learning that a family or parent has been cursed by God for some sin they are assumed to have committed.

That perception, combined with a desperate lack of health services — particularly in rural areas — and limited accommodation for autistic children in schools, can leave parents feeling like they have no way out. Fathers of autistic children often abandon their wives to start over, and mothers often find themselves alone to balance an extremely demanding home life with the need to put food on the table.

And those few aid organizations that do provide services to Ethiopia’s autistic children face a difficult paradox: Their students require highly individualized, focused attention and low staff-to-child ratios, while most donors want to see big beneficiary numbers before they agree to provide any financial support.

“I was shocked,” Rahel Abayneh told Devex, recounting her realization that she was a parent of an autistic child as we drove through the construction-torn streets of the Ethiopian capital Addis Ababa, a bustling hub of African development and security coordination.

Abayneh noticed that her second child of three, a boy, displayed behavior consistent with depictions of autism she had seen in public service advertisements on TV. She spoke to a doctor, who confirmed the diagnosis.

“I cut off my hair,” she said. “I didn’t want to see anybody.”

In far too many cases, that’s where the story ends. But for Abayneh, though, it was a beginning. After the initial shock wore off, she surveyed her options. They were limited to one — one center for autistic children in a country of nearly 95 million people. The wait list at that center was 491 students long.

Instead of waiting indefinitely, Abayneh sought out other parents of autistic children. She found five others in her village, and together they became the six founding partners of the Nehemia Autism Center.

Now there are two centers for autistic children in Ethiopia.

Fighting stigma

In 2011, the six founding mothers together rented a house for 11,000 Ethiopian birr (about $500) a month. The house was unfurnished except for a television. The six children played on mats while the mothers discussed their challenges and shared their experiences. It began as more of a space for mutual support than a formal behavioral and educational center.

An initial private donation allowed Nehemia’s founders to undertake a more concerted fundraising campaign. A dinner event garnered further support, and the group received a one-time donation of 200,000 birr from World Vision.

Today, the Nehemia Autism Center occupies a small compound not far from central Addis Ababa. It employs staff and volunteers to provide services to 40 autistic kids aged 2-12 at two students per teacher.

More than half the students come from low-income families and attend the center for free, Tewedros Getye, the Nehemia Autism Center’s program manager, who holds a degree in psychology, told Devex in the center’s sparse main office. Some of them travel 20 kilometers every day to get there and back, no small feat given the often poorly maintained and congested roads.

An estimated 600,000 Ethiopians are living with autism, he said.

That estimate is actually somewhat lower than global autism rates would suggest, and the number for Ethiopia could be significantly higher, Getye noted. A general lack of knowledge — even among Ethiopia’s health professionals — about what autism is, the fact that data from rural areas is largely missing, and the sad reality that autistic children are often concealed from public view due to the stigma attached to mental disability in Ethiopia all combine to impede accurate reporting.

Getye cited instances of autistic children in rural villages who have been locked away — even chained — indoors, or taken away for religious treatment instead of for medical diagnosis and mental health and behavioral care.

“So we don’t hear about them,” Getye said.

Families with autistic children also tend to move around a lot. Many Ethiopians rent their homes from landlords who share the same house are not always tolerant of autistic children living there. The center’s program manager recounted the story of one mother of an autistic child who was forced to change houses eight times.

Geyte showed Devex the classrooms, where students — most of them in pairs with intensely focused staff volunteers — were working on matching pictures with words, on art projects or on maintaining eye contact. The kind of familiarity with each of the students, their background, progress and struggles can only come from a lot of time and energy.

That close attention and low staff-to-student ratio is both vital to the quality of the Nehemia Center’s services and an obstacle to its growth and sustainability, according to both Abayneh and Getye.

Funding challenge

The center, Abayneh explained, has so far relied on a precarious combination of self-funding and one-off donations from organizations and individuals. It does not serve enough students to qualify for sustained aid from big international donors.

She recounted a meeting she was able to secure — after much effort — with an official from the U.S. Agency for International Development’s Ethiopia mission. When she requested financial support for Nehemia, the official asked her how many students were enrolled, and when she told him there were fewer than 50, he responded that they would need to serve at least 5,000 in order to receive funding from USAID.

“Can you imagine 5,000 students with autism?” Abayneh asked.

Getye noted that USAID advised Nehemia to form a network with other autism support centers in order to make their case as a more robust potential aid recipient. But, as Abayneh encountered when she first explored options for her son, there is only one other autism center in the entire country, despite the fact that the need for those services is much, much higher. For now, Nehemia’s networking prospects remain slim.

“Although USAID does not have any autism specific programs in East Africa, it does not mean that we do not include persons with autism in our programming,” Charlotte McClain-Nhlapo, USAID coordinator for disability and inclusive development, wrote in response to an inquiry from Devex. “The agency’s approach is to support disability in its diversity. USAID disability policy requires programs to reach all persons with disabilities including persons with intellectual/developmental disabilities.”

The Nehemia Autism Center serves students from ages 2-12. The goal is to work with them on behavior and communication skills so that the students can be accepted into the national education system’s inclusive learning schools, where children with other learning disabilities are accommodated in special education programs.

But even in those inclusive programs, teachers and administrators are often unwilling to accept students with autism, due to the unique and demanding behavioral challenges they often pose.

Nehemia’s waiting list is now 190 students long, and the center, will hold another fundraiser on Jan. 26 next year.

Getye said that if they are able to raise enough money to strengthen the center and secure its future, the next step will be to open others, including centers to serve students older than 12 who do not make it into the country’s inclusive learning schools. They are also hoping to purchase their own vehicles to provide transportation for some of the center’s more distant students.

Nehemia trains its own staff and suffers from a lack of available professionals, Getye — who is beginning a masters degree in developmental psychology — explained. But professional opportunities for psychologists are lacking in Ethiopia, so few regard the field as a viable career path in the country.

That is the case across many professions, Getye said, “except accounting.”

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