Parents, teachers, doctors, and disability inclusion advocates have identified issues that need attention to create a more supportive environment for children with autism in Rwanda. These challenges were highlighted during the National Conference on Autism, held in Kigali on April 2, in commemoration of International Autism Awareness Day. ALSO READ: Early detection of autism helps children prosper – experts The event, the first of its kind in Rwanda, brought together parents of autistic children from across the country, talented autistic children who showcased their abilities, and key stakeholders in disability inclusion. 1. Mutuelle de Sante coverage While not all autistic children require medication, those with related complications often need long-term treatment. One of the major concerns raised by parents is the high cost of autism-related treatments which are not covered under the community-based health insurance scheme, Mutuelle de Sante. Parents are advocating for the inclusion of autism therapies and medication in the insurance scheme to ease the financial burden on families. “Other disabilities have insurance coverage and support, but autism is not included. The community-based health insurance does not cover the medication, therapies, and other autism-related treatments, which we wish could change,” said Diane Umuhoza, a parent from Kimihurura sector, in Nyarugenge District. 2. Limited autism-friendly schools Parents expressed frustration over the lack of schools equipped to support children with autism. The few available institutions that cater to autistic children are often very expensive. Teaching autistic children requires specialized tools, techniques, and individualized attention—resources that are scarce in most schools. ALSO READ: Govt to build five model special schools for autistic children As a result, some parents are forced to relocate in search of appropriate schools, while others are left with no option but to keep their children at home. Even those who manage to enrol their children in school struggle to sustain the financial demands. The government announced plans to build five specialized schools in each province over the next five years to address this gap. 3. Financial burden Raising a child with autism presents significant financial challenges, from costly school fees to the need for specialized care and therapy. “When you finally secure a school for your child, the requirements keep changing, and each child needs a dedicated teacher. It takes a strong heart to navigate this life. If you cannot afford the necessary support, you feel powerless as a parent,” said Umuhoza. ALSO READ: Early signs of Autism: Stories of parents with Autistic children Evariste Karangwa, a former professor at University of Rwanda and a champion for inclusive education, emphasized the broader economic impact of failing to support autistic children. ALSO READ: Kamagaju's dedication to autism advocacy remains unwavering “When children with autism are not given the required attention and care, they remain at home without education, leading to lifelong dependency. This not only affects the family’s economy but also the country's development since human resources are key to economic growth,” Karangwa explained. He noted that autistic individuals are largely absent in universities, high schools, and vocational training centers, increasing their risk of lifelong dependency. Some parents even quit their jobs to care for their children, further exacerbating financial struggles. “In some cases, having an autistic child leads to family conflicts,” Karangwa added. 4. Lack of knowledge and awareness The World Health Organization (WHO) recognizes that autistic people often face stigma and discrimination, leading to unmet healthcare needs and barriers in accessing education and community participation. This stigma stems from societal misunderstandings and negative stereotypes about autism. Autism remains poorly understood in Rwanda as well, leading to stigma and cultural misconceptions. Many Rwandans perceive autistic children as mentally unstable, possessed by spirits, or bewitched. This misinformation results in wasted time and resources on unnecessary traditional treatments, delayed diagnosis, and psychological distress for families. A lack of awareness also leads to mistreatment of autistic children in society. Parents and disability advocates are calling on relevant authorities to launch awareness campaigns to educate communities on autism, its causes, and how to support affected individuals. 5. Lack of professional support Few teachers in Rwanda have specialized training to handle autistic learners, even in institutions designated for children with disabilities. This lack of expertise often leads to improper care and ineffective teaching strategies. ALSO READ: The journey of an autistic student who excelled in national exams Felix Safari, a teacher at Groupe Scholaire Rosa Mystica, an inclusive school in Kamonyi District, emphasized the need for continuous training for educators. “We are trained to work with autistic children, but every child presents unique challenges that require ongoing education and specialized knowledge. Additionally, the teacher-to-student ratio is too high, making it difficult to provide individualized attention,” Safari explained. He also pointed out that many teachers working with autistic children are paid by parents rather than the government. He urged authorities to recruit and compensate specialized teachers to ensure sustainable support for autistic students. 6. Limited research and data Another barrier to improving autism support in Rwanda is the lack of comprehensive data on autistic individuals. Accurate statistics are essential for developing policies, allocating resources, and creating effective intervention programmes. Stakeholders have called on institutions and the government to conduct more research on autism to better understand the needs of affected individuals and their families.
