Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. According to autism speaks, these disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and non-verbal communication and repetitive behaviours. With the May 2013 publication of the DSM-5 diagnostic manual, all autism disorders were merged into one umbrella diagnosis of ASD. Previously, they were recognized as distinct subtypes, including autistic disorder, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome.
Autism appears to have its roots in very early brain development. However, the most obvious signs of autism and symptoms of autism tend to emerge between 2 and 3 years of age. ASD can be associated with intellectual disability, difficulties in motor coordination and attention and physical health issues such as sleep and gastrointestinal disturbances. Some persons with ASD excel in visual skills, music, maths and art.
Nia Foundation is an indigenous, non-profit and non-governmental humanitarian organization. It was established in 2002 with a view to alleviating the complex challenges faced by individuals with autism and other related mental development disorders.
The Foundation was established by Zemi Yenus. The story is that her son, Jojo, was diagnosed with autism spectrum disorder. She was not able to provide her son with any meaningful care though she tried everything she could. Finding the proper health care for her son was a very difficult task. Having passed through many ups and downs, she ended up opening the first day care centre for children with autism. The centre was established with donations obtained from Nia School of Beauty and Modelling and personal belongings of Billal Yousuf, Zami's first son to raise awareness about the disorder. The foundation is currently known as Joy Centre for Autism.
Zemi, as mother of a child with autism, has been discharging her responsibility in creating awareness to the general public about autism and other mental development disorders. In the past, children with autism were not given the space the disorder required them to have. They were considered as possessed. Some of them were chained in darkrooms and were not considered as members of the society.
That is why she opened Joy Centre for Children with Autism which targets to ending isolation and physical incarceration that bother children with autism. Hereunder follows the exclusive interview she held with The Ethiopian Herald.
Let us begin with introducing yourself to our esteemed readers.
My name is Zemi Yenus. I am the founder and managing director of the Nia Foundation. I was born and raised in Addis Ababa. I am the fifth child of my parents. Following the death of my mother, my father married another woman. All in all, we are twelve [including children from the second marriage]. I got three brothers. We have a happy family and have affection to each other. Some of them live in the USA, Canada, and Europe, while the rest live here in Ethiopia. I completed my primary and secondary education in Nativity Girl's School and Nifas Silk Comprehensive High School respectively.
Would you tell us a little bit about your parents?
My parents were hard working people. My mother was a house wife and a dedicated mother. My father was a designer of men's clothes. He was very good at his work. My parents never went to school; my father was a shepherd. He left the countryside and migrated to the city. Then, he began working with Italians in tailoring business. That is where he learnt tailoring and fashion designing of men's suit. Step by step, he turned out to be a very famous designer. He raised us in the best way possible. He provided us with everything he could.
How do you describe your parents' contributions for your success?
I believe they laid the foundation. They were hard working parents as I said. My father taught me to be hard worker and risk taker. He also taught me how to deal with business. My mother is also my role model. She is one of the best women I have ever met or seen. I am glad she raised me. She was very kind and humble to other people. The youth nicknamed her 'Mother India' after the character in the movie Mother India.
Why was she nicknamed Mother India?
She helped the youth in bad times. During the Derg regime, she was never scared to hide and give advice to young people. She was one of the peacemakers in our neighbourhood. When people quarrelled, she never took side. She was unbiased. I learnt from her not to take side, hate or put a blame on anybody else. She was not judgemental. I believe she was a good leader too. She knew how to lead without bias and make peace. She knew how to deal with housemaids, neighbours and daily labourers.
What was your childhood day like?
I was a happy child. I used to play with other kids. Above all, besides my studies, I used to help my parents in household activities. I was obliged to do housework as my mother wanted us to do everything despite having maids. We were supposed to perform household work. We also used to volunteer in schools particularly during school holidays.
Why did you leave for Italy?
I never wanted to leave my country because I love my country and its people more than anything else. Most often, my friends used to dream of going abroad. But me, I preferred to go abroad only for vacation. Unfortunately, the situation was not good particularly for young people during the time of the Derg. But at the end, I was forced to leave my country because I wanted to visit my sister.
How was life in Italy like?
Everything was very pleasant. During that time, I worked at an office called UCEI (Ufficio Centrale per Lemegrazione Italiana) which was working in association with the United Nations High Commissioner for Refugees. My job was processing documents for my fellow citizens who came to Italy on their way to other parts of the world. In my stay there, I studied Italian language and hotel management.
When did you come back home? Did they welcome you?
When I came back home after three and half years, I was falsely accused by the military regime of assisting wanted criminals to escape as refugees using my work. They put me in their blacklist. I was not allowed to go back. My passport was confiscated. They labelled me antagonist. I was not allowed to leave the country. By the way, I lived in Italy for five and half years.
What measures did you take to regain your freedom?
I gave a call to the Ethiopian Embassy in Italy and requested the Counsellor to give testimony that I did not do anything wrong. They gave their testimony. Finally, I found someone who could clear my passport and then I returned to Italy. As soon as I went back to Italy, I turned out to be an immigrant myself. As chance would have it, I processed my documents and left for the United States. To be quiet honest, I was not happy about my job there. My heart was continuously telling me to study art. Then, I chose beauty and went to the beauty school and accomplished my education in Cosmetology.
Having worked in Hollywood, California and other states, I established my own beauty salon in Los Angeles. I was committed to my profession. It enabled me to meet countless people from all walks of life, races and social classes.
Why did you return home?
When I came back to Ethiopia for vacation a year after the collapse of the military regime, I saw many unemployed young girls engaged in commercial sex. Poverty could be witnessed in every nook and cranny of the country. I made up my mind to contribute my share for my fellow citizens. I sought after to rescue them from the trouble they were in by coming up with some kind of solution, particularly for young girls.
As a result, I reached a decision to get back home once and for all. On my return home, I opened the first Beauty and Modelling School in the country. My school was the first licensed professional beauty and modelling school. I was eager to teach many unemployed women and men how to do hair, make-up and skin care. Then my dream become a reality.
I was able to train more than six thousand young women and men in the profession including disadvantaged women and young people. In collaboration with non-governmental organizations, I have also taught many young girls free of charge. The exciting thing is that most of them have managed to own business of their own. In addition, I have also given trainings on life skills and reproductive health to young girls.
How did you discover that your child is an autistic?
My son's behaviour was deviant. The way he acted was different. He was not able to talk. All the milestones were fine but his speech was delayed. I was worried. When he moved to Ethiopia, he was four years old. I was told by doctors that he was okay. After a year my husband called me from the US and informed me about autism after watching a TV programme about the disorder. All the symptoms he told me resembled that of my son's. I did not want to accept or believe that my son had any kind of disorder. I was in denial. At some point, my husband sent me books to read. All the symptoms were there. As I knew very well that denial could not be the solution, I made up my mind to accept the reality.
It was difficult to withstand challenges witnessing my son being constantly expelled from schools on account of his autism. He was excluded from several educational facilities. I searched for schools that could meet the demands of my son but did not find any. There was even a time when I considered going back to the US to find the right school for my son.
However, I gradually discovered that many autistic children were seen as cursed or possessed and hence they were chained and locked in darkrooms. I had seen children tied in ropes. Some families did not even consider children with autism as family members. There were so many painful moments.
What was your next move?
I began to fully take part in the awareness creation programme about autism. After some time, some people started to appreciate my plans. I received so many moral support and encouragement from several people. I kept on doing the work because it is my belief that if I don't do it, nobody would. I believe that things happen for good reasons. This happened to me given because God wanted me to do something about it. I accepted the whole thing with pleasure and began doing the job with the intention of supporting children with autism and bring about some change. Then I started to take part in autism awareness creation programmes.
I began inviting senior government officials, journalists, individuals, students, celebrities and people from all walks of life in the events that I organize. I started to talk about autism from time to time and made it issue of discussion among the general public. Then I opened a centre and school for children with autism. My first student was my son, Jojo. I have eighty pleasant children enrolled in the school at the moment. Some 80 per cent of the children are showing a great improvement.
Can you describe your major achievements so far?
As we are eye-openers on the issue of autism in the county, we created awareness among the society and brought children with autism out of the closet. We also gave more than 150 autistic children with access to education and psychotherapy services. I have the courage to say, we have thrown our share in bringing the subject of autism and other mental developmental disorders to be issues for the government, policy-makers, international donors and pertinent professionals.
We have a record of over 1,000 children across the country diagnosed with autism and other developmental disorders. Furthermore, 3,500 families also received counselling service. Our foundation enabled many youths to be self-sufficient. We have also created 'ABUGIDA' [Geeze] Phonetics to enable children with autism to develop their speeches and communicate their needs. In the past, mothers of children with autism were ashamed of their children but now we changed this reality.
How is your son now?
He is doing well. He can do many things by himself now. He is happy. Of course, he still needs some support. Yet, he is even helping me. I do not help him any more. He is my big hope. By the way, it is not me who helped my son but it is the whole society. Wherever he goes, he is loved and accepted. People support him happily. If children with autism know that they are accepted, the chance to improve is very high.
As he is your first child, what did you teach him at first?
There are challenges all over the place. But what is expected of us is finding out the solution. As my son was my first student there was no stone I left unturned to make him speak and write. I developed a teaching method to help him exchange a few words with me. By the way, 'ABUGIDA' Phonetics was fully prepared in Ethiopian alphabet and sounds. It helps children learn to read, write and speak.
What type of support did you receive from the government?
Our achievements could be witnessed everywhere. We are thankful for many people, organizations and everybody who supported us. We have received land from the government and we are in the process of constructing autism centre of excellence. We are thankful for our government for giving us the land. Now, we are about to raise fund to start our activities. We are asking everyone to be part of it. We would like people to support us in various ways. It could be professionally, financially or by giving us a piece of advice. We have already started fund-raising events. The project belongs to everyone. We have to work together. Your support helps us inspire, empower and improve the holistic well-being of less privileged children, youths, and women.
What rewards of your efforts?
I have received several awards until now. My biggest award is the love and respect I get from the public. Wherever I go, people express their respect and appreciation. Besides, I was also awarded by the government of Ethiopia, various non-governmental organizations and the Empress of Bahrain. I have also been given a number of awards from my country. I will never forget the day I was awarded as 'best mother.' The United Nations have also awarded me with a certificate and five thousand dollars. I have received several awards.
Is there anything you would like to add?
We all need to work hand in glove. Children deserve better. Children with autism are worthy of what healthy children ought to have in their lives. They should be treated equally. They should be treated with love and respect. People should understand that their behaviour is different. As their situation is different, we should be able to accept them. We have to understand them; we have to give them space and provide them with continuous support to enable them participate in social life.
Thank you very much!