In Rwanda, as elsewhere, autism remains a largely misunderstood condition. Between silence, stigma, and a lack of specialized services, affected families often face a difficult journey.
Yet, behind the numbers and diagnoses, there are lives, hopes, struggles… and voices simply asking to be heard.
“I thought my child was just slow” The shock of the diagnosis
Joyeuse, a mother of three living in the Gasabo district, fondly recalls the day she first heard the word autism.
“My son Cedric was 3 years old. He didn’t speak, avoided eye contact, and spent hours lining up objects. I thought he was just a little slow to develop… But the nurse at the health center advised me to seek more serious advice. After tests at CHUK, I was told he was autistic. ”
Initially in denial, Joyeuse then felt lost. People around her told her that the child was cursed, or that he was suffering the consequences of family mistakes.
“I cried. Not because of my son, but because of society’s rejection. He’s not sick. He’s just different. ”
What exactly is autism? A specialist’s perspective
Dr. Jean Bosco, neuro-pediatrician, specifies that autism, or more precisely autism spectrum disorders, is a neurodevelopmental disorder.
“It manifests itself through difficulties in communication, social interactions, and repetitive or restricted behaviors. Autism is neither a contagious disease nor a mental illness. It is a neurological characteristic that requires personalized support.”
According to him, warning signs can appear as early as 18 months: little or no language, lack of eye contact, hypersensitivity to noise or certain textures, isolated behaviors, etc.
” Early intervention can have a significant impact on a child’s development. Unfortunately, many families seek care late, sometimes at age 5 or 6, or even later. “
A fragile daily life, a silent force
In Huye, Joseph, a single father, is raising his 10-year-old son, Joseph Junior, who has been diagnosed with moderate autism.
” I had to give up my job to take care of him. He can’t stand loud noises, has trouble expressing what he wants, and can’t attend a regular school. I looked for a special school, but they are rare, expensive, and often overcrowded. “
Despite the difficulties, Joseph refuses to give up.
“He loves music. As soon as he hears soft sounds, he calms down. My dream is that one day he can play an instrument… or simply be happy in a place that understands him.”
According to the NGO Umuryango Wacu, which supports children with mental disabilities, autism remains little known in Rwanda. Many families face prejudice, mystical beliefs, and a dire lack of specialized infrastructure.
“The State has made some efforts to recognize mental disabilities, but autism requires specific policies: systematic screening, psychological support, adapted school integration ,” explains Justine Uwamahoro, a specialist educator.
Autistic people don’t ask for compassion or pity, but rather for understanding, respect, and inclusion. They can learn, work, love, and live… at their own pace, according to their abilities.
As Dr. Jean Bosco concludes: ” Autism is not a tragedy. The real tragedy is the refusal to understand, and the lack of support for these children and their families .”
According to the World Health Organization (WHO), the prevalence of autism worldwide is approximately one in 100 children. In Rwanda, there are no updated national statistics yet, but diagnosed cases are steadily increasing. Currently, only two specialized schools, located in Kigali and Huye, are officially recognized for serving autistic children. However, access to early detection remains very limited, particularly in rural areas.
WITH NIKUZE NKUSI Diane
