Illuminée Gahongayire, a mother of an autistic child, recalls the uncertainty and challenges she faced upon realising her child’s condition a decade ago.
Initially attributing her child’s quiet demeanor to potential speech delays, Gahongayire’s concerns deepened as her child continued to exhibit atypical behaviour. She sought answers through numerous hospital visits, suspecting various causes including poisoning, until finally receiving a diagnosis of autism.
This revelation propelled her into unfamiliar territory, prompting her to seek both support and education on how to best care for her child.
Gahongayire’s narrative is just one among many shared by parents worldwide on World Autism Awareness Day, marked annually on April 2.
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“I persistently sought answers through hospital consultations until the diagnosis of autism was given. Unfamiliar with the condition initially, I discovered an organisation offering specialised schooling for autistic children. Eager to enhance my understanding and caregiving skills, I also pursued training to become adept in nurturing children with autism,” she explained.
Autism, or autism spectrum disorder (ASD), is a neurodevelopmental condition characterised by challenges in social interaction, communication, and repetitive behaviors.
According to the Centers for Disease Control and Prevention (CDC), symptoms may include delayed language and movement skills, unusual behaviors, and heightened anxiety.
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Children with autism often exhibit behaviors perceived as unusual, such as avoiding eye contact or failing to respond to their name. These signs, evident from infancy, can lead to delayed social development and academic difficulties.
Gahongayire’s journey shows the critical need for specialised education and support services tailored to the unique needs of autistic children. She recounts her son’s dismissal from mainstream schooling due to inadequate support for his condition.
“My son faced rejection from conventional schools due to a lack of resources to cater to his needs. It wasn’t until enrolling him in a specialised institution that I received the necessary training to support him effectively. However, financial constraints remain a barrier for many parents seeking such specialized education,” she lamented.
Ange Akimana shares a similar plight, recounting her struggles in identifying her child’s condition and subsequent journey towards accessing appropriate care and education.
“As we grappled with our child’s delayed speech, we encountered numerous challenges in identifying the underlying cause. It was only when autism was suggested that we began to understand the nature of our child’s condition. Despite accessing specialised schooling, our child’s communication challenges persist, highlighting the ongoing need for support,” she revealed.
Dr. Darius Gishoma, Mental Health Division Manager at Rwanda Biomedical Centre (RBC), acknowledges ongoing efforts to understand the causes and preventive measures for autism. Research suggests a complex interplay of genetic and environmental factors contributing to the condition.
Rosine Duquesne Kamagaju, Founder and Executive Director of Autism Rwanda, emphasizes the need for collaborative efforts to address the multifaceted challenges faced by families affected by autism.
“Autism presents with a range of symptoms, including delayed speech and impaired social interaction. Addressing these challenges requires not only financial resources but also specialized skills and support networks,” Kamagaju emphasized.
The financial burden of educating autistic children further compounds the challenges faced by families. Kamagaju highlights the substantial costs involved in providing specialized education and care.
“Our organization strives to provide quality education and support to autistic children, but the associated costs remain a significant barrier for many families. Collaborative efforts involving public institutions, private sector, NGOs, and government are essential in alleviating this financial burden,” she urged.
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Despite the efforts of organizations like Autism Rwanda and Silver Bells Rwanda, the financial strain on families remains substantial. The National Council of Persons with Disabilities (NCPD) has called for increased government support to bridge the funding gap for disability-focused schools and centers.
In 2023, the government allocated approximately Rwf90 million to such initiatives, yet a shortfall of at least Rwf200 million persists.