Autism in Ethiopia – A Bigger Vision

The children at the Nehemiah Autism School represent a very small cross-section of children on the spectrum and their families. There is one other special needs school in Addis that has around 60 children with a variety of disabilities, including autism.  It is a private school and I am told it is quite expensive to attend. We tried to make arrangements to visit this school, and meet the founder but unfortunately the timing didn’t work out this trip.

Outside of the capital city there are no services or schools of any kind for children with autism.  Many Ethiopians that I spoke to had not even heard the term autism.

The founder of the private autism school in Addis did a big publicity push recently to raise awareness of autism. Rahel has also done some publicity work around autism education.  These are good first steps, and I hope both women will continue to be ambassadors for autism awareness in Ethiopia.

Through Dick Koening’s connections, out team made some steps of our own to improve services for autism in this country.  Dick and Rahel spoke to the head of psychiatry at St. Paul’s Hospital Medical College to discuss the possibility of getting the medical school involved in the diagnosis of autism.

Dick also managed to get us an audience with the Assistant Minister of Mental Health.  Our team spoke to the minister, Dr. Tedla, for about 45 minutes about ways to improve autism diagnostic and intervention services, increase awareness, and also how to move beyond Addis and reach children in other parts of the country.

Meeting with the Assistant Minister of Public Health
Ciara, Amy, Dick, Rahel, Dr. Tedla, Zelalem, and Hetty

The obvious conclusion was that we needed to empower Ethiopians for this task. Having locally trained special education teachers, psychologists, speech therapists and occupational therapists doing assessments and delivering services is a more effective way to address the problem than relying on intermittent help from volunteers.

Ethiopia has a long way to go to make this plan work, though. At present, there are no degrees for Speech Therapy or Occupational Therapy offered at Ethiopian universities.  A degree in Special Education seems to be a rarity as well.  Ciara and I  met with a mother who was looking for a place for her child to go to school. He is 3 1/2 years old, can write the entire alphabet, draw and identify a variety of shapes and is quite verbal.  Despite these strong academic skills, no regular education school will take him because of his diagnosis of autism.

Without Ethiopian educators, psychologists, and specialists on board it is hard to see how there can be effective intervention for children on the autism spectrum.  Ethiopia is a country of 80 million people, and currently there are 80 autistic children receiving help between the two autism schools in Addis. Barely a drop in the bucket. (The latest research says that 1 in 88 children are on the autism spectrum.)

I felt very privileged to have worked with the staff, families and children at the Nehemia School. They are making tremendous strides despite the numerous barriers they face. I am looking forward to watching (and helping) autism services grow for the Nehemiah School, Addis Ababa and beyond.

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Ethiopia Time

Did you know that it in Ethiopia the year is 2004? Ethiopia uses a different calendar than most of the Western world. When we visited the National Museum, I noticed that there were two separate and completely different years for a person’s date of birth and death. One set of dates for Ethiopians and the other set for those of us that use the Gregorian Calendar.

In addition to a different annual calendar, Ethiopians tell time using a 12-hour system rather than the 24-hour clock we westerners are accustomed to.  The day begins at 6:00AM; so instead getting to work at 8:00 in the morning you would start work at 2:00.  The same 1:00-12:00 system starts again at 6:00 in the evening.  It can be very confusing, especially when trying to clarify a time to meet.

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Exploring the Markets

On Sunday we had a little free time…the first free day of the trip.  Initially Ciara, Hetty and I thought we might try and take a bus down south to see some of the countryside outside of Addis, but realized that we were simply too exhausted from the week to make that happen.  Instead, we joined Dick and Gil for some shopping in the markets.

The first market we went to was fairly small, but we all managed to find some things to help us remember our trip.  There was quite a lot of bargaining going on, but I’m sure the shopkeepers still made out pretty well from our purchases.

The second market we went to was definitely not set up for tourists. The area is called Entoto, and the amount of poverty we saw was quite shocking. The five of us walked around the area for about an hour trying to process all that we were seeing.

Dick likes to show us things that really send us reeling.  We started the day seeing extreme poverty, blind and deformed people on the streets begging for money and then he took us to the Sheraton Hotel for coffee and dessert.

Men in top hats and tuxedos opened the doors for us, the floors were made of marble and classical music was being piped through the speakers.  We all felt very uncomfortable at the level of opulence surrounding us, and also a little bit of guilt at the pleasure of using a restroom where you could flush the toilet paper and use pristine white hand towels to dry your hands.

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The Nehemia School – Parent Training Day

On Saturday morning we did a training for the parents.  Happily, the projector worked just fine but 10 minutes before the training began the power went out.  We improvised and fortunately had enough battery life on the laptop and iPad to make it through the presentation.

Henok and Hisabu, two of the psychology students volunteering at the school acted as translators during our presentations. They did an amazing job, and we were so thankful for their skill and willingness to do this.

The psychology students were a tremendous help and did a great job translating our presentation to staff and parents.

All of the psychology students were graduating from Addis Ababa University that day at noon. Despite this important occasion, they showed up for our Saturday morning parent training to hear the presentation and to act as translators.  They came dressed in suits and ties and stayed until the last minute possible before taking off for their graduation ceremony.

I think nearly all of the parents were in attendance, and there were 4 parents that came whose children are on the waiting list to get in to the school.  It’s quite sad to hear some of their stories.

Families who have children with disabilities are ostracized here.  People tell them, “Your child is like this because you are a bad person, or a horrible mother”. Many people also think that autism is a curse on the child and their family.  Many times landlords turn them away when they see that they have a child with special needs, and it is next to impossible for children on the spectrum to be accepted in to mainstream schools.

In order to house and feed their family, parents must go out of the home and earn money.  Many cannot afford to hire someone to help with childcare, and they can’t take their special needs child with them to work. For the child’s own safety, the only option some parents are left with is locking the child up in their home while they are away.  Sometimes they bind the child’s hands behind his back to keep him from destroying the house or injuring himself. It is heartbreaking to hear some of the stories.

As part of an Autism Awareness campaign, Rahel interviewed a few of the parents last year and created a mini-documentary. You can watch a portion of it here.

The parents were really good about asking questions, both during the presentation and at break times.  Many took notes during the presentation and were nodding and smiling during our talk – especially while watching the videos showing the approaches we were teaching.

News of our presence at the school trickled out through word of mouth, and there were several new families waiting for us at the school with their child every day from there on out.  Families are desperate for any kind of help or guidance for their child. We are happy to help them in any way we can, but our time here isn’t enough.

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Driving

Driving in Addis is not for the faint hearted. There are very few traffic laws and street signs are almost nonexistent.  People navigate by well-known buildings, traffic circles and landmarks – not street names or maps.  Many of the streets have huge potholes, and some are just dirt and cobblestone. Since it is the rainy season, the dirt roads turn in to huge mud pits.

The road in front of the Nehemiah School after a heavy rain.

Traffic accidents are the number one cause of death in Ethiopia, and when you see the way people drive, you know it must be true. Cars are crisscrossing with no regard for lane position. People, goats, donkeys and cows are always walking alongside the road or trying to cross the street. There are no such things as crosswalks or pedestrian right of ways. It is a constant game of chicken.

The one thing that prevents even more motor vehicle accidents and deaths is the exorbitant price of cars and gas.  In the city, most people drive relatively slow.  It is quite common to pay $8,000-10,000 US for a car that is at least 15 years old.  If you buy the car outside of Ethiopia, there is a huge import tax added…$18,000 US dollars just to get an old beater car into the country.  It is ridiculous.

There are a lot of traffic accidents on the roads running between Djibouti and Ethiopia. Ethiopia is a land locked country so many goods are imported from the ports in Djibouti. Truck drivers chew Khat (a legal drug in Ethiopia) to help keep them awake, but it also makes them crazy and erratic drivers. You can imagine the results.

Dick and Gil hiring some taxis for a trip to the market. The man in the green pants turned out to be a very erratic driver.

Despite the chaos and lack of rules on the road, I felt relatively safe when riding in the taxis and mini buses – with one exception. One of the drivers we hired to take us to the markets on Saturday had several near collisions. I’m sure Ciara ended up with bruises that day from all the times I gripped her arm in terror.

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Staff Training Day

On Friday Ciara, Hetty and I did an all-day training for about 20 of the staff members.  Unfortunately, the day started out with some technical difficulties. We had arrived half an hour early to set up the overhead projector, but could not get it to work.  I almost always run into challenges when trying to connect a computer to a projector, and my bad luck with projectors continued in Addis Ababa.

Hetty charms the crowd.

After much trial and error we finally got the projector working, but we were now an hour behind schedule. Naturally, Ciara, Hetty and I were quite concerned about the delay and weren’t certain we would be able to fit all the information in, but no one else seemed terribly bothered by it.

Lunchtime rolled around and we ate a delicious meal prepared by the cook at the school. After lunch I went to find Rahel (a parent and head staff member) and told her I thought we should get started again on the presentation – we were an hour behind schedule after all.

She looked at me a bit quizzically and said, “But we haven’t had coffee yet.”

Drinking coffee is a very important part of Ethiopian culture.  It is seen as an opportunity to chat and spend quality time with family and friends.  Coffee is not something to be forgotten or rushed.  So I put aside my American “the clock is ticking” mindset and had some delicious Ethiopian coffee.

Having coffee Ethiopian style

At 5:00 we headed back to the hotel and started preparing for the parent workshop we were holding the next day.45 minutes later, Dick knocks on the door and says “c’mon. We are going to celebrate Shabbat. Our taxi driver is waiting”.So we cram in to the taxi.  Literally cram in. It is a small sedan and we have 4 people in the back seat and Dick is in front with the driver. I sit on Ciara and Hetty’s laps for the ride.

Crammed in to a tiny taxi

The home we went to for Shabbat is that of an American surgeon. He is from New York and has lived here in Addis for 20 odd years. Apparently he is very well known in the American medical community. When we arrived, the house was filled with young Ethiopians he has operated on (and adopted, I think?), visiting doctors from Emory University Medical School, medical students, and couple of traveling Israelis.

We got home around 11:00, finished preparing our presentation and finally fell in to bed around 12:30. Most of our days were jam packed like this. It is fun, fascinating, rewarding, and exhausting all at the same time.

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Ethiopian Coffee Ceremony

During the 1930s, Ethiopia was briefly occupied by the Italians,which helps explain why practically every restaurant in Addis is equipped with an espresso machine and pizza is almost as common on restaurant menus as shiro wot. Ethiopians love coffee, and if you can afford it, you drink it several times a day. But coffee is more than just a caffeinated drink to get you through the day.  It is a way to savor the pleasure of good company.

Coffee has been grown in Ethiopia for many centuries. Drinking an espresso every morning at my hotel was lovely, but it did not impart the same level of camaraderie, relaxation and enjoyment as the traditionally brewed coffee we drank at the Nehemia School and family homes. Ethiopians roast the coffee beans themselves in small batches over a coal-fired brassiere.

After the roasting is complete, the pan is passed around so everyone can appreciate the aroma. The freshly roasted beans are ground with a mortar and pestle and then brewed in a clay pot.

The resulting brew is very strong.  While watching Sambrawit make our coffee at the Nehemiah School, I counted 23 heaping teaspoons of coffee added to a pot that held about ten espresso sized servings. The coffee is served with lots of sugar and a pungent herb called tena dam, which helps to enhance the flavor of the coffee.  This herb is also used as a natural cure for stomach problems.

Although I did not have the opportunity to try it, I was told that butter is sometimes used in place of sugar in the coffee.  Ethiopian butter apparently is different from western butter, but I’m not sure how. More salty perhaps?

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The Nehemiah Autism School

On our first full day in Addis Ababa we met Rahel and Zelalem at the Korean Hospital.  We all had macchiatos and got to know each other.  Both Rahel and Zelalem are quiet spoken, but very kind and friendly.  They run the school, and they each have a child that attends the school.

Amy, Zelalem, Rahel, Ciara, and Dick in front of the Korean Hospital in Addis.

On Wednesday and Thursday Ciara, Hetty and I spent the day getting to know the kids and staff. We also wanted to learn more about the curriculum and teaching approaches being used with the students. Lindsay Perez, the special education teacher that helped start the school last year did a great job laying the foundation for the teachers and children.

When Lindsay arrived in Addis Ababa, the school was just an empty house with no desks or chairs, much less teaching supplies and a set curriculum.  She helped select many of the students that are now in the program, and also helped the staff set up a teaching curriculum, a schedule and a plan for how to teach the children. I am very impressed at the amount of work and teaching she was able to do in such a small space of time (about 2 weeks, I think).

It is obvious that the teachers at the school care a great deal about these children and want to do everything they can to help them succeed. They have been diligently implementing the academic and life skills training programs that Lindsay helped create. Several psychology students from Addis Ababa University have been helping out at the school, as well. The psychology students are familiar with ABA and discrete trial training, and have been helping the staff with these types of interventions.

At present, there are twenty children attending the school ranging in age from 4 – 16.  With the exception of one child, they are all essentially nonverbal.  Many of the children also have very intense sensory needs.

I am afraid we made the staff rather uncomfortable as we moved from room to room observing them, snapping photos of the classrooms and getting to know the students. But all three of us agreed that we would be able to provide more specific suggestions and techniques during the training sessions if we knew the needs of the students and what was being taught at the moment.

We quickly honed in on some intervention techniques in each of our specialty areas that we wanted to teach the staff. That night, we sat down and put the information in to a power point presentation interspersed with practical videos of the techniques we wanted to teach. Rahel had mentioned that a projector would be available for our presentation, which was a nice bonus. We had been assuming that we would simply make do with our laptops and iPads for the training.

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Ethiopian Food

Based on the few Ethiopian meals I had eaten in the States I knew I was going to enjoy the food in Ethiopia. If you aren’t familiar with Ethiopian food here is a brief description of what you are missing.

Meals are eaten in communal style. The bottom of a large platter is covered with injera and then the different sauces, stews, meats, and vegetables are placed on top of the injera. Injera is a sour, crepe-like bread made from a grain called tef. Some westerners consider injera an acquired taste, but I enjoyed the flavor. It is served at every meal, and the sour flavor makes a lovely contrast to the various sauces and meats.

Prior to eating everyone washes their hands. Hand washing is a formal and ritualistic affair. Rightfully so since everyone eats from the same platter and no utensils are used. Simply tear off a piece of injera using your right hand and use it to scoop up bits of the meat, veg and sauces. Keep your left hand in your lap. The left hand is reserved for drinking and other sundry activities.

Without a doubt, the cook at the Nehemiah School made some of the best Ethiopian food we had. Ciara, Hetty and I also had the honor of being invited to a couple of family homes for some delicious meals. While homes may have an oven, stovetops seem to be a rarity so the food is often cooked over a coal fired brassiere one dish at a time.  In addition to the ubiquitous injera,  we often ate a puréed bean paste called shiro wot, spicy lentils, some sort of meat (typically called tebs), and a variety of fresh vegetables.

Food does not go to waste in Ethiopia.  The food-soaked injera that lined your dinner plate is eaten for breakfast or lunch the following day in a dish called Fir-Fir (pronounced fear-fear).  This “waste not” custom is not surprising in a country where 50% of the population is starving at some point during the year. Thankfully injera is very inexpensive and has quite a bit of iron and protein.  Adequate nutrition in Ethiopia is defined as 2 meals of injera a day.

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Addis Ababa

Prior to my visit in July I didn’t do a lot of active research about Ethiopia or Addis Ababa. I knew Amharic was the primary language spoken in Addis. I knew that the weather would be cool and rainy and I knew that it was a very poor country. According to several sources Ethiopia ranks no higher than 5th poorest country in the world. Beyond these few facts though, my knowledge was very spotty.

Honestly I am not sure doing a ton of research ahead of time would have helped all that much. As a westerner visiting a 3rd world country for the first time there is only so much one can do to prepare for the onslaught of culture shock you are about to be immersed in.

Part way through our trip Ciara asked Hetty and I to distill our impressions of Addis Ababa down to three words. The people we met were kind, thoughtful and welcoming but the city itself gave a different impression. Words we came up with to describe Addis included: extreme, loud, intense, crazy and chaotic. Addis Ababa launches a full-on assault on the senses.

The city is teeming with old cars, minivans, and buses. The air smells of diesel fumes and smoke from charcoal fires. Every night around eleven o’clock a donkey brayed outside our hotel window like clockwork. At 4:30 in the morning, we awoke to the Muslim call to prayer broadcast over loud speakers.

There are herds of goats throughout the city, donkeys are loaded down with sacks of charcoal, and people carry heavy loads on their backs or on top of their head. There are no crosswalks, so people just push their way out in to traffic and cross the street or highway where it is convenient. While walking one must constantly be on the lookout for mud puddles, piles of trash, gaping holes in the sidewalk, and cars. If you hear a car horn, you had better react quickly. Drivers honk if they have no plans of stopping or yielding to other cars or pedestrians in their path.

Tall fences and metal gates block most of the houses from view. You never know what is hiding behind the gates. It could be a beautiful home or a shack made of sheet metal. It is not uncommon to find a nice house right next door to a shack. When we looked out our hotel window, we could see a small apartment building that was clearly for middle-class families. Five steps from their doorway was a small shack made of corrugated metal. And while this shack clearly housed a very poor family, they were not the poorest of the poor in this city.

The level of poverty we saw was hard to take in at times. When we had small bills, we gave it to those in need but I think it did more to make us feel better. Giving five birr to a blind man begging on the streets may fill his stomach for a day, but it does nothing to address the larger problem.

And yet, somehow despite all the chaos and challenges the city works. It is always buzzing with activity. People get where they need to go. Goats get sold and butchered. Many people seem to be working hard and are able to earn some sort of living. Ethiopians are proud of their country, culture and heritage, and they should be. I can’t say that I ever felt ‘charmed’ by Addis Ababa, but it did gain my respect as a gritty, hard working city.

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* My husband found this little tidbit about Addis Ababa on Wikipedia: “According to Tia Goldenberg of IOL, area spa professionals said that some people have labelled the city, ‘the spa capital of Africa.’ ”  Addis Ababa brings to mind many things – both positive and negative.  Being a ‘spa town’ is a pretty big leap, though.

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