Autism Spectrum Disorder, a neurodevelopmental condition affecting behavior and communication ability, is thought to affect one in 120 children worldwide. In developing countries like Ethiopia, the condition is little understood and public awareness remains exceedingly low, presenting difficulties for autistic children and their families.
Tigist Hailu is the mother of a child living with autism who has dedicated her life to raising awareness about the condition. She is the founder and director of Melu’e Foundation, which works primarily on autism and other special needs issues with the objective to integrate people with special needs and society. Its mission revolves around empowering individuals and families affected by autism spectrum disorder.
Tigist sat down with The Reporter’s Samuel Getachew, to reflect on the organization’s roles in peoples with special needs, her experience of helping her now 17-year-old child live with autism, on changing people’s attitude towards those living with the neurodevelopmental condition, on opening her own home for those affected by it, and on becoming an inspiring advocate. EXCERPTS:
The Reporter: You are a mother of a son with autism. What were the early challenges?
Tigist Hailu: The early challenges were significant. At the beginning, there was no proper diagnosis and very limited professional support for intervention. It was a time of uncertainty, and we had to search for answers on our own and that was not easy.
During that period, my work with Ethiopian Airlines gave me the opportunity to travel and take different trainings to better understand autism and support our son.
Another major challenge was finding a school. Many schools were not willing to accept a child with autism, and we faced several rejections. Eventually, one school accepted him, but required us to train their staff so they could support his needs.
Over time, we realized the support was still not sufficient. After some years, we made the difficult decision for me to resign and fully commit to homeschooling him.
That journey became the foundation of everything we do today at Melu’e Foundation.
Tell us about your journey to becoming an advocate.
My journey into autism is deeply personal. As I have mentioned previously, I am a mother of a son with autism, and my introduction to this field came through his experience.
Before this, I was working with Ethiopian Airlines as a flight attendant and later as a cabin crew instructor. That opportunity allowed me to travel to different countries and be exposed to different systems and training that I brought with me to Ethiopia in order to help my son and other young people like him who have the same experience.
I used those opportunities to learn more about autism so I could better support my son and be a better advocate for such people who are living with autism. As his needs became clearer, I made the life-changing decision to resign from my career and focus on homeschooling him.
At that time, there was very limited awareness and almost no structured support available locally. What started as a mother’s effort gradually grew into a shared mission. Together with my husband, we established Melu’e Foundation to support children with autism and other developmental delays and their families and it has been a difficult but fulfilling journey that has profoundly changed our lives for the better.
How widespread is the issue?
Autism and other developmental delays are more common than many people realize, but in our context, they are still under-identified and often misunderstood. Many children remain undiagnosed, and families may not know where to seek help.
At Melu’e Foundation, we are seeing a growing number of families coming forward. This reflects both the increasing need and the gradual rise in awareness. However, there is still a significant gap in early identification and access to intervention services but that is slowly but surely changing and we see that up close and in a very practical way.
Do you think there is adequate support locally?
While awareness is improving, the level of support is still not adequate. Services are limited, and there is a shortage of trained professionals.
Most services are concentrated in urban areas like Addis Ababa, making access difficult for many families. In addition, affordability and continuity of care remain major challenges.
This is why our work at Melu’e Foundation focuses not only on providing services but also on building capacity and promoting inclusive systems. But what is evident is that the issue is becoming more known within the community and across our country.
Tell us about the therapy center that you started.
Melu’e Foundation is a non-profit organization established by us—my husband, Kinfe Tsige, and myself—in September 2021. It is a comprehensive therapy center that provides structured and individualized support for children with autism and other developmental delays.
We describe it as comprehensive because we do not focus only on the child, we also focus on empowering parents. We provide evidence-based training, practical guidance, and continuous updates so families can actively support their children’s development.
Our vision goes beyond therapy. We are planning to establish an inclusive school that will create opportunities for children with different learning needs to access education in a supportive and inclusive environment.
This holistic approach, supporting the child, the family, and the community, is what defines our work at Melu’e Foundation.
What can you tell us about the library inside your center and how it is becoming popular among community members?
The library was started in my apartment, in my living room. While homeschooling my son, I wanted to strengthen his social interaction, so I opened my doors and invited people from the community to come and read.
It is a free library, but it has a deeper purpose. It created an opportunity for people to interact with my son, see how capable he is, and better understand autism and other developmental delays. It helped raise awareness that these children are not limited—they simply have different ways of thinking and learning.
Over time, that small living room library grew into a larger library within Melu’e Foundation, maintaining the same concept.
At our center today, we continue to bring the community closer to our children, to promote interaction, understanding, and inclusion. We believe autism is not a disease, but a different way of seeing the world.
Looking ahead, how would you want the issue to be dealt with in terms of policy and advocacy?
Looking ahead, we believe we need to move from awareness to action by building truly inclusive systems for children with autism and other developmental delays.
Inclusion should be part of everyday life, in schools, hospitals, transportation, police institutions, social gatherings, hotels, and across our city’s urban systems. We need to think and act inclusively in everything we do, because everyone is different, and accepting those differences must become our daily practice.
This requires stronger policies, investment in services, and building professional capacity. But most importantly, it requires a shift in mindset.
At Melu’e Foundation, we believe in one guiding principle: inclusive system, inclusive future.
As part of this, we host our annual Autism Awareness and Fundraising event every April 22, bringing the community together to reflect, learn, and take action toward inclusion. We invite everyone to join us in this journey.
Is there anything you’d like to add?
My wish and goal for my son and for all people with special needs is that they live independent lives, are productive through their own God-given potential, and contribute fully to society. Their differences are a beauty the world needs, and I hope my son thrives long after I am gone.
