A Sibling’s Journey to Autism in Eritrea

In 2014, the satellite television program Eri-TV aired a three-minute segment that highlighted the experience of a mother whose child was denied entry into primary school. In the clip, the mother recounts a teacher’s reaction: “kemey gerna kinhisyom…k’hisyom ayki’ilina.” How will we accept them? We can’t have them.

Her son is disabled.

Other parents spoke. But the strongest voices at the gathering were silent. Many of the children in the footage looked inattentive, or as some would call in the zone. I stared harder because I knew that look. I know it quite well, actually. My brother flashes the same look on his face when he wants to disengage, or avoid speaking with you. His eyes shift and he will proudly avoid eye contact.

For all that I didn’t comprehend, I understood the look on the children’s faces. I realized the woman was the parent of a child with autism.

Autism is a complex brain disorder that now affects the speech, motor, and cognitive skills of one in 68 individuals in the United States. Autistic individuals, or autists, are characterized as having a set of repetitive behaviors, and boys are more likely to be diagnosed at higher rates than girls, up to five times more. No two people with autism will experience it the same way and nobody is certain how it’s caused.

A person’s autism usually develops before the age of four, although research over the last decade credits early childhood intervention and intensive therapy as effective prevention methods and, in some instances, has led to diminished signs of autism in individuals who received such care. As a result of a myriad of theories, therapies and debate over educational and employment prospects, autism can be incredibly puzzling and stressful for the individual and their family to navigate.

Once I learned that autism had made its way to Eritrea, my parents’ native land, I was determined to know more about how the country was gaining ground with autism. And Kiflay Gebremichael was the right person to help me do just that.

Months later I found myself in Asmara’s charming Ketema, and living within a few feet from a tall building with tinted windows where Kiflay was stationed. But I didn’t know it at the time. After I had memorized the route to the National Association of Intellectual and Developmental Disabilities in Eritrea’s (NAIDEE) office, and called to let them know that I was heading there, they arranged to have their receptionist – a short woman with a beautiful, gaping smile – escort me to Kiflay’s suite.

We were soon greeted by his secretary, Almaz, who didn’t shy away from engaging in afternoon gossip and told me a few melodramatic anecdotes about Eritreans in the diaspora, i.e. a friend’s daughter who doesn’t speak Tigrinya and married a Black American. Although I sided with Almaz who seemed utterly displeased, I actually didn’t have any judgment on this woman and her life choices. I solely entertained the secretary for the sake of improving my Tigrinya.

Soon walked in a lean man with a sharp chin wearing a french beret. We grasped hands – a greeting used to communicate friendship and respect.

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Kiflay’s journey with autism began in 2007, when his youngest son received the diagnosis. Since then, he has worked with families affected by autism and other disabilities as the chairperson of the parent’s organization, NAIDEE, which formed in October 2010. (The association changed its name to NAIDEE earlier this year.)

Among his duties are linking families to physicians. He collects personal information from those seeking psychiatric perspective in a standard form – name and telephone number of the patient, the country’s region and city, the caregiver’s occupation, etc. The form is then funneled to an operating hospital in Eritrea, and presumably, a diagnosis will be given.

NAIDEE is recognized and supported by the Eritrean government. With backing from three agencies: Ministry of Education, Ministry of Health, and Ministry of Social and Human Welfare, NAIDEE solicited views from these departments to release a parent’s handbook that explains and examines the behaviors associated with autism, down syndrome, and other disabilities late last year.

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At the time of my visit, the office didn’t have an official count of the number of people who have been diagnosed with autism in Eritrea. To get those numbers is a goal, Kiflay told me. I believe the nation would benefit from having this data, which will help organizations and ministries understand how to support and serve this community. Considering that Eritrea is one of the newest countries in the world and has a drastically smaller population than U.S.’s 320 million, the probability and prevalence of autism in the Horn of African nation is far lower.

Given the total population in the States and its rise of autism, I have estimated that the potential number of autistic individuals has reached 4,705,882 people. As my mother pointed out to her sister over boon one day, that number means that almost all of Eritrea – a country with a little more than six million inhabitants – has autism.

Mental health in Eritrea is generally frowned upon, and parents may not vocalize frustrations about their child’s developmental stage and even completely disregard it in the company of relatives, neighbors or strangers. It is often considered a sign of misfortune, spirit possession, and, circumstantially, may even shame the family name. All of these cultural attitudes are dangerous and further perpetuate social stigmatization among the disabled population, which may prevent an individual or caretaker from seeking support and services.  

I now recite my mother’s words on how Eritreans may view those with autism and other mental disabilities: “[they] will say you are possessed by the devil.”

In Tigrinya, an official language of the country, the common vocabulary used to describe such an individual are humum and tsulul – the English equivalents of “sick” and “crazy”.

As I sit and think of all that I have seen and experienced in Eritrea(n) circles, I wonder if a history of speech and sentiment associated with developmental disabilities could be eradicated. I don’t doubt such mentality remains etched into the minds of many. However, after interacting with Kiflay, I believe those days are shrinking. I stood in his office that August afternoon, illuminated by his ray of light and conviction to respect and honor a special population in Eritrea, and I thank God that the increased acceptance of autism in my ancestral homeland will help others accept my brother.

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6 thoughts on “A Sibling’s Journey to Autism in Eritrea

  1. Ariam; I read your article, it made me lough and cry at the same time. As they say there is a reason for everything. and i do strongly believe this is one of your callings, because you have lived, experienced and also have a very strong understanding of Autism. Please Continue and help inform our people. write about it extensively and i am confident you will get to the bottom of it. I am proud of you and your accomplishments. This is just the beginning…….

    Michael

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  2. Hi
    Its great you used kiflay to tell the story. We need more people like him. They are the foot soldiers in educating the people. I hope imthis is just part: )

    Feysel Muktar

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  3. Thank you for this beautifully written piece. And for going there and learning more to bring back to us. My little brother has autism and I always wonder how he would be treated back home when it is so frowned upon here in the US by our people. Good to know there is work being done.

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  4. This made me so happy, Ariam.

    I’m not sure what the autism rates are in Somalia, but there are a lot people with mental health disorders. And the same sentiment is expressed towards them, they must be possessed by the devil. They are mistreated and dehumanized, and I always hoped there was a way to make it stop.

    I’m happy there is an organization like this in Eritrea, and I hope Kiflay succeeds in his quest of educating the masses about autism.

    Like

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