The Indefatigable Defender
“I’ve always had a compassionate trait that I believe is a gift from God. People often dream of being famous but I’ve always been passionate about helping those in need”
I was born in Jimma in 1970 and relocated to Addis Ababa where I grew up. I have one brother & three sisters. My educational journey began at Mekaneyesus for preschool. I transferred to Geja Kalehiwot and stayed until the 8th grade then switched to Bole Highschool. I completed high school in Mesrak Secondary School. I got married right after and have been blessed with 3 boys – Naod, Nathan, and Nahom.
Growing up, I was very sociable and adored by many. I was also a bit disruptive in school and would occasionally skip classes (especially math and physics). I found school a bit boring but realized my passion through the process. Helping others and giving my time to those whom I felt needed has been my calling from early on. I used my time away from school volunteering to different charity groups. I remember an encounter with a woman on the street begging. I asked her why and she told me she had been raped and needed money. I was so shocked at her situation that I gathered my friends and raised 100 Birr for her– she only asked for 64 Birr. The word got out and reached some of my teachers who had been pleased with my initiative and encouraged me to continue. I went on to organize school events, fashion shows and school magazines.
During my senior year, I was part of a club dedicated to addressing water contamination issues. We focused on raising awareness about the significant impact of clean water on people’s lives, particularly in rural areas where the same contaminated water was used for both laundry and drinking. Our primary goal was to inform and educate the community the importance of clean water especially for drinking. Additionally, our club actively participated in environmental initiatives, collecting discarded trash from school premises, planting new trees, and creating comfortable benches to provide students with a conducive space for studying and engaging in school activities, with the intention of enhancing the beauty of our school environment. Being part of this experience proved beneficial as it significantly improved my public speaking and presentation abilities. Moreover, it played a crucial role in challenging and opposing the traditional notion that women should confine themselves to the kitchen.
Coming from a supportive family allowed me the freedom to explore my passions, such as performing dramas and singing in church choirs that also helped build my confidence and assertiveness. I have always loved to help people. I used to get in trouble when I was younger because I would give away my transportation allowance to someone who had more needs and walked to home. I find it laughable now that my parents used to get so upset at what I considered good deeds. To this day, I don’t hesitate to lend a helping hand. I’ve always had this compassionate trait that I believe is a gift from God. People often dream of being famous but I’ve always been passionate about helping those in need.
My life took an unexpected turn when I found out that my 2nd child Nathan had autism. I didn’t figure this out immediately. It was a long and grueling process. Before discovering his condition, I struggled to comprehend why his behavior was different from that of my two other sons. I sought answers from doctors and medical experts but they couldn’t figure out the cause. I felt frustrated and helpless but I kept going to different doctors. Then one day while watching a TV commercial about autism awareness, I noticed the symptoms listed were similar to that of my son’s and I felt a glimmer of hope. Encouraged by this new finding, I decided to approach a different doctor and shared with him what I had learned. However, this doctor dismissed my concerns insisting that my son didn’t have autism. Realizing my persistence and that I wouldn’t let go before I got an answer, the doctor referred Nathan to a neurologist. Finally, my persistence paid off when the tests confirmed my suspicion. Nathan did indeed have autism. He was only two.
The news was overwhelming but the doctor’s lack of empathy made the situation even worse. He informed me that autism was a lifelong condition with no cure and told me to just give up. He offered no guidance or support. I’ll never forget that uncaring doctor. I felt utterly lost and resorted to extreme measures. I shaved my head and avoided eating for three days as a form of self-punishment. At my lowest point, I even prayed for death seeking an escape from the pain. But nothing happened! I realized then that if God wanted me to live, then my journey wasn’t over. So I resolved to move forward and find a way to help my son.
Nathan struggled with several issues. There were instances where I had to rush him to the hospital repeatedly to get his stomach pumped. It was then that I learned that autistic children often have gastric issues; In Nathan’s case it was triggered by milk. It was a critical piece of information I had been oblivious to. I refused to be clueless anymore so I delved deep into autism research and all its associated challenges. Alongside my efforts, I prayed for God’s guidance.
Through my research, I discovered that autism spectrum disorder is a neurological and developmental condition that profoundly affects a person’s sociability, behavior, and understanding. This was a profound realization that answered my confusion about Nathan’s behaviors. I had often found myself puzzled by Nathan’s tendency to be alone most of the time. It was enlightening to learn that the word “autism” originates from the Greek word “Autos” meaning “self”. From my observations and further reading, I learned that autistic children have unique preferences and characteristics. Unlike typical children, they often prefer the company of adults over those of their age. Their play patterns are different as well. While a typical child may engage with a toy truck by moving it with wheels, an autistic child might exhibit unusual play manners such as flipping the car upside down or focusing on different aspects of the toy. Autistic children also struggle with eye contact and response due to the impairment of their brains’ response control centers.
Communication is another aspect affected by autism. Most autistic children struggle with speech and they need to be taught how. Early intervention brings about significant changes and improvements in children with autism. It’s important to teach social interaction skills at ages 2 or 3. If they have reached age 9 and older, the likelihood of developing verbal communication skills decreases, that is because they first need to unlearn the habits and behaviors they’ve developed over a long period. Unlearning can be a difficult process even for people without disorders. Now imagine how much harder it’ll be for those with a developmental disorder. Therefore, it becomes crucial to provide interventions and alternative communication methods to facilitate their ability to express themselves. The medical professionals helped me understand that because of the developmental issues Nathan had, he would never be like other children; he may even not recognize me at times. Autism is an extremely difficult condition and the child needs constant care and attention.
Autism carries a significant stigma worldwide and is even worse in Ethiopia. Mental health issues are commonly perceived as a curse by many Ethiopians. For this reason, parents don’t usually disclose that they have an autistic child. These beliefs lead to the kids’ mistreatment, including abuse, confinement, and isolation from society. In some communities, the mother is blamed because it is believed that her sin has been passed down to the child. I have encountered cases of husbands divorcing their wives or even bringing home another woman and denying her the respect & worthiness she rightfully deserves.
Autism prevalence in Ethiopia has increased. I believe this is due to our improved ability to diagnose and increased awareness about the disorder. With awareness comes acceptance to readily identify and confront it. It is crucial for us to respond swiftly to this devastating disorder taking proactive measures to address the needs of individuals with autism and ensure they receive the support and resources they need.
Despite the challenges I face, I remain dedicated to my son’s well-being. When he was of age, I began exploring options for schools but none would accept him. The only option available at the time was the Joy Autism Center. When I attempted to register him, I was informed that all spots were filled and I was placed on a waiting list – I was number 465. I saw that there were other parents who were faced with the same dilemma. Many were crying and worried about the uncertain future of their children. I was alarmed by the number of cases that I witnessed at Joy Autism Center. I thought I was the only one. I encountered a man who shared a story of how his sister’s husband abandoned her after learning that their 9-year-old boy had autism. Because she was unable to support her child on her own, she relied on her brother for help. He felt lost & overwhelmed. I wanted to help my son and all of the parents in that waiting room. They left a profound impact on me. It was at that moment I realized no help was coming. I left Joy Center that day determined to make some sort of impact in our community.
Despite the on and off political difficulties for the Eritrean origins (that both my husband and I share) that prompted many to leave, I chose to stay behind. We were strongly advised to leave particularly for the better opportunities it could afford our son. While my husband was leaning to leaving, I simply couldn’t abandon the other parents I had connected with at the Joy Autism Center. They had too many problems. Who would help them? I told my family about my plans to stay and open an autism school and they were all against it, even my husband. Despite their disapproval, I remained dedicated to my goal. Everyone kept telling me I should leave Ethiopia but I held on to my belief that I could do anything with God’s help. If God says you can, then you can. I took the leap of faith and opened Nehemiah Autism Center in 2011 with six children.
Realizing that I was truly committed to the cause, my family & friends had no choice but to support. My husband offered invaluable support with writing proposals to secure funds. We started to look for experts in autism, a task that proved very difficult. We decided to look for professionals who have some knowledge of autism and trained them to become speech therapists, counselors, and other experts needed to treat the condition. As the number of students grew so did the challenges. Sadly, we lost 7 kids because of seizures, gastric issues, lack of qualified experts & medicine, improper dosages, and more. While autism has no cure, there are medications to treat the symptoms. Unfortunately, we face a massive shortage in Ethiopia preventing us from providing the best treatment and care.
To reduce medical & behavioral complications, we offer comprehensive training programs for both the children and their parents/guardians. We focus on equipping the children with skills to communicate and enhance their social development. Simultaneously, we provide counseling and guidance to parents to increase their understanding of autism and help them take care of their children. Through our experience-sharing sessions, parents interact with each other to exchange techniques. It also reminds them that they aren’t alone in this journey. These sessions have tremendous impact on parents, many of whom contemplated self-harm. They have now come to terms with the condition and recognize that it isn’t the end. They haven’t failed as parents. They can keep going.
During these discussions, many parents voice their concerns. One issue raised was transportation. Some parents couldn’t commute to our school daily. To help them, we began a transportation service with no additional charge except for willing parents who ‘d offer to share the cost. We understood that several of the parents faced financial constraints therefore we sought to alleviate their burdens as much as we could. We ask very little of them. One request is that they use the Nehemiah communication books to inform us about their kid’s state at home. We inquire about details such as their sleeping patterns, bathroom usage, or any other issues we need to assist with. In addition, we also offer a tour of our center to show them the classes & how the kids spend their days. We do this even for the parents on the waiting list. This helps reassure them that their children are treated well.
For the mothers that are struggling, whether they’re single or in an abusive household, we take it one step further. These women are often lonely and financially incapable of taking care of their children. This leads them to depression, suicidal thoughts, and guilt brought on by society. At Nehemiah, we show them that it’s not their fault or a punishment by God. We help them understand that autism isn’t a standalone condition – it brings depression, poverty, conflict, and more to the family. By addressing the mothers’ difficulties, we support them, we empower them & we teach them to be grateful for life and their children. When we equip women, we equip society. We instill in them in spite of their overwhelming situations they are fully capable to work and becoming self-sufficient. They don’t need to be financially dependent on husbands that treat them like they are less than. Nehemiah has helped several mothers defeat poverty and make a living. It makes me so happy to see the women we helped succeed and achieve their dreams.
Nehemiah now accommodates 60 students, 600 more remotely, and has over 1400 on the waiting list. We were able to transition 27 of our students to regular schools, a tremendous accomplishment & testament to their progress and our hard work.
As a tool to spread autism awareness and the work of Nehemiah, we utilize every available media platform to spread our message, driven by our primary objective of transforming people’s perspectives and imparting education. Engaging the younger generation, TikTok and YouTube serve as powerful tools for us to inform and enlighten. Additionally, we actively participate in church programs, educating and enlightening communities that the cause of autism is not curse but simply a disorder like any other. Our mission extends beyond media channels; I carry the cause wherever I am consistently advocating and educating. Autism compels me to advocate on behalf of those seemingly powerless. Autism helped me discover the power within.
I believe in the power of collaboration to shape our society. At Nehemiah, we provide training, financial help, raising funds, and supplying essential materials for autism-related causes. I have established connections with various autism centers in Ethiopia. One was with a nurse in Hawasa who initially wanted to enroll her daughter in Nehemiah. However, I convinced her of the great need for an autism center in that area, so she went on to open Bright Autism Center in Hawassa which has expanded to another branch in Shashemene. When she faced challenges, we provided financial support to keep her school afloat. I also helped set up an autism program in an orphanage in Adama, catering to around five children in a daycare-style setup. I guided them in raising funds, writing proposals, and engaging volunteers from universities. Witnessing centers like Bethel Autism Center thrive and sustain themselves is a testament to Nehemiah’s success, as our impact expands through empowering others to make a difference.
Nehemiah has also been instrumental in the establishment of a new autism center in Dessie (Reyan Autism Center), catering to around 19 students. Our support extends to numerous centers, providing financial assistance to ensure their sustainability, and in some cases, enabling them to open second branches. Notably, we have collaborated with government schools in Debreberhan, offering essential training sessions for teachers and parents alike fostering a more inclusive and supportive environment for individuals with autism. This has been a significant accomplishment as we are actively fighting biases and discrimination.
Another accomplishment is training teachers on autism that supports regular schools be inclusive because of now the availability of resources—trained teachers. Our center’s effort has gained recognition from many schools which encourages special needs children to be accepted. This serves as a valuable gift to the community at large. As part of our awareness creation, we also visit medical schools to teach the medical students about autism, hoping that when they graduate, they’ll pursue a specialization in autism. Nehemiah has made a difference in society by creating awareness, helping with employability, bringing families’ hopes alive, and demonstrating a sense of community. We also extend our outreach beyond Ethiopia. We know that there are parents like us suffering because of a lack of information & support. We created support groups in Texas, Dallas, Phoenix, and Atlanta, USA. No one understands our pain so we have to look beyond ourselves and help each other. Our outreach includes creating awareness and promoting Nehemiah Autism Center. We offer information whenever is requested. In return, we solicit donations like toys and games. We fundraise. We emphasis the importance of firsthand information by physically visiting and volunteering at our center in Addis Ababa.
Our well-developed volunteer programs offer many benefits for the volunteers: working with autistic kids and gaining insight of their world which builds compassion, and acceptance. Volunteering for the center also gives the volunteers the opportunity for self-reflection and appreciation of life itself. It is only when we are physically & emotionally healthy that we succeed in other aspects of our lives. It teaches volunteers about being resilient and optimistic.
Through Nehemiah, we have made an impact on the lives of several individuals and communities. None of this would have been possible without the unwavering support of my team. Some of our teachers have been at Nehemiah for 12 years. They truly believe in this cause, want to help others, and impact our community. These teachers are my pride. I am very proud of Nehemiah’s work.
Several individuals have helped me in my path. One is Meseret Kinfe, the author of YeTekur Enat Negn. I have known Messi for six years now. In the US, she ran a soccer program catering to Ethiopians. During one event, I had the opportunity to set up a table to talk about autism, and with the support of Messi and other parents who saw our post on Facebook, we sold t-shirts and other items. I encouraged the author to compile her story, a process that took two years, and we eventually launched the book at the Capitol Hotel in Addis Ababa. The funds generated from the book sales were divided equally between supporting Nehemiah and assisting single moms facing unemployment and children with disabilities. Subsequently, we launched the book in Atlanta, utilizing it as a means to raise autism awareness and gather further funds for the cause.
I would also like to acknowledge Zemi Yenus who was a true front-line advocate. She has been an incredible asset to Ethiopia. Through her efforts, she has played a vital role in raising awareness about autism among Ethiopians, becoming a beacon of support when I first learned about my son’s autism diagnosis. Witnessing her school and the impact she made motivated me to establish Nehemiah, something I wouldn’t have dared without her inspiration. Though I never had the opportunity to work directly with her, she paved the way for our cause. Her passing was a deeply challenging moment for me, as her presence and dedication will always be cherished.
In addition to my work with autism, another cause that holds deep personal significance for me is HIV. Having lost my parents to HIV, I always thought I would dedicate my efforts to fighting against this disease. At Hospice Ethiopia, our focus encompasses both cancer and HIV, and I found purpose in assisting patients, helping them prepare for the end of life. During my time as a board member, we faced the danger of closing the center, but with determination and hard work, we managed to keep the organization running and it has now grown significantly. Working at Hospice Ethiopia brought immense fulfillment as I could offer support to many individuals living with HIV, a chance to make a difference where I couldn’t for my own parents. My commitment to this cause remains unwavering driven by a deep sense of purpose and empathy.
In my neighborhood, I took part in establishing a community center that serves as a vital resource for the elderly. Here, they have the opportunity to engage in regular exercises and physical activities which prove crucial in preventing or mitigating the impact of illnesses such as diabetes. The center plays a significant role in promoting the overall health and well-being of our senior community members, fostering an environment of care and support.
During my limited spare time, I find solace in listening to spiritual music often when I’m driving. I also take moments to pray through which I express gratitude. I am very happy with my life and the journey I have taken.
My views on having an autistic son are rooted in gratitude. I am thankful to God because every child is a precious gift from above. If God destined me to have an autistic child, then it means He entrusted me with the ability to care for and love them unconditionally. However, I must admit that when I first learned about my son’s condition, it was a challenging and confusing time. Like many other parents, I questioned what I might have done wrong. I’ve met many mothers with autistic kids who develop several health issues due to stress & worry. Despite the initial struggles, I have no regrets. I don’t let myself sink. I maintain a positive outlook on life and don’t dwell on my pain. Instead, I look to the solution and use my experience to help others. I am able to find joy because I focus on the present. Through my son, I have been blessed with the opportunity to make a significant impact, helping hundreds of people and serving my community. Nathan has been my guiding light, empowering me to achieve things I never thought possible. His presence in my life has been a true blessing.
When it comes to my two other sons, they found it challenging to comprehend their brother’s condition at first. My youngest son would become upset and disruptive that is rooted in the feeling of anger and sadness. However, over time, they started to grasp the situation better. I am delighted to share that my eldest son has now enrolled in Gondar University pursuing a career in medicine with the aspiration of becoming a neurologist specializing in the treatment of children with autism. This journey has made me realize that having siblings who understand and support each other, especially as they grow older, is an invaluable source of assistance and comfort.
Being with my kids brings immense joy to my life and I cherish the moments we have together, having fun and creating beautiful memories. Family holds a special place in my heart and I make every effort to spend time with them whenever possible. Gathering with my loved ones, sharing laughter, reminiscing about old times, and going out together are moments that bring immense happiness. Even my neighbors have become an extension of my family and I find joy in connecting with them, laughing, and embracing the simple pleasures of life.
I am part of an online support group on Facebook. We have a wonderful community called “Wulo Group” where we share updates about our daily lives. It’s a place of celebration for birthdays, buying and selling items, offering advice, and even donating essential supplies like soap. Additionally, I have volunteer groups in high schools, universities, and colleges that actively contribute to our cause. While autism can be challenging, one of the biggest obstacles is the stigma surrounding it. To combat this, we focus on raising awareness and education, particularly targeting the youth as we believe they hold the power to drive positive change and create a more accepting and inclusive society.
Taking care of Rahel and attending to her needs brings me joy and fulfillment. While I might not prioritize self-care as much, I am content and grateful for the life I have which naturally contributes to my overall well-being. In the past, I used to find pleasure in swimming, always having a swimsuit ready in my car. However, my responsibilities at home, especially taking care of the house without much help, have shifted my focus. Yet, I make it a point not to neglect myself; I maintain a healthy diet, dress well, and embrace a sense of gratitude. Despite the challenges, I am determined not to succumb to negativity or let myself go as I am well aware of people’s expectations but choose to defy the notion of looking miserable.
I am a generous and kind-hearted person, a testament to my upbringing by wonderful parents. I have a natural ability to make friends with everyone and never let anything drag me down. After starting the autistic school, I noticed a remarkable increase in my patience. I firmly believe in letting go of grudges and avoiding negative thoughts to maintain a clear and positive mind. Some might view my optimism as naivety but embracing positivity has been the cornerstone of my success throughout life. It has allowed me to overcome challenges and achieve fulfillment in both personal and professional aspects.
My dream for my community Initially was to establish a new branch of Nehemiah Autism Center every three years but financial struggles prevented us from realizing this vision. However, I now have a grand ambition of opening a boarding school that cares for autistic children who have lost their parents or have been abandoned. The existing options for such specialized care are scarce and often offer limited services. I understand that it is an extremely difficult task to achieve but it must be done. My team and I engage with as many people and organizations as we can for aid. Currently, our biggest hurdle is securing financial support. We previously considered the possibility of launching a revenue-generating business to support the school but the regulations of the Civil Society Organization prohibit Nehemiah, as an NGO, from engaging in such ventures. We can only open a school. Because of this constraint, we’re exploring all available options to achieve our goal.
It is crucial for individuals, corporations, and the Ethiopian government to support our cause and help these children. They are citizens too. Opening autism centers in every Kifle Ketema is a necessity as there are thousands who lack support and struggle to communicate their needs for help. Can you imagine how difficult their lives must be? Confronting this naked truth was heartbreaking so I am fully committed to doing everything in my power to make this a reality. We need help and we won’t quit until we’ve reached our goal.
To me, success is sharing. It is the ability to pass on your legacy to the next generation. True success cannot be achieved alone. You need to find someone who can carry the torch you’ve worked so hard to keep burning. None of us know what tomorrow holds. What will happen to the people who depend on you if you don’t have a succession plan in place? I urge people to think of their legacy and bring forth others who share their vision.
I firmly believe that you can’t live on your own or hide from the world. You need to go out and explore. You need to fight for what you believe in. You need to be able to share and create awareness for a cause you are passionate about.
I aspire for a better, kinder Ethiopia.
What do they say about Rahel Abayneh
Tewodros Getiye, Program Manager and Psychologist
Rahel is an extraordinary mother, not just to her own kids, but also to others around her. Her kindness and warm-hearted nature make her a remarkable leader and boss. Her genuine goodness and forgiving nature shine through. Not only does she make an effort to understand parents’ challenges but she actively helps them find solutions. In her neighborhood, Rahel is the go-to person for advice. She is known for her honesty and willingness to lend a helping hand whenever possible. Rahel actively participates in committees and programs focused not only on autism but also on other disabilities like Down syndrome, spreading awareness and knowledge. Rahel always fights for what she believes in making her an inspirational force to be reckoned with.
Tigist Bekele, Board Member
Rahel is an incredibly resilient and compassionate individual who doesn’t allow challenges to consume her. Instead, she fearlessly confronts issues head-on, seeking solutions with a strong belief in her religion as her guiding force. Her unwavering passion for making a positive impact on society drives her to selflessly give back and help autistic children, recognizing that by doing so, she uplifts entire families, offering hope and improving their lives. Rahel’s dedication serves as an inspiration to her friends and those around her, myself included. It is truly heartwarming to know she is recognized for her achievements and dedication to the cause of Autism.
Meseret Shebiru, Staff Member Rahel is a dedicated hard-working, perceptive and strong woman in pursuit of her vision. She understands the significance of having someone stand by her side as she recognizes that she cannot overcome these obstacles alone. Her kindness, open-mindedness, and ability to connect with people make her incredibly helpful and skilled at forming supportive groups. Drawing from her own experiences with her child, she simplifies complex challenges for others and empowers them to find strength within themselves.