Government has admitted to a group of parents whose children are living with autism, that except making “political speeches”, there has been no policy action to deal with the condition in Rwanda.
Health Minister Dr Diane Gashumba said she would engage the Ministry of Gender Promotion and Family Planning (MIGEPROF) and Ministry of Local Government to work on a plan to be included in the 2020 budget due in June this year.
“It is good the issue of autism has been raised early to allow us include it in the budget like other serious medical conditions,” said Gashumba last Friday on World Autism Awareness Day, which also begins the international month for Autism.
At La Colombiere school in Kigali, the Rwanda Parents Initiative on Autism had gathered to mark the day. The association comprises more than 100 families that have children with autism.
The condition leaves people with it, especially children, requiring extensive care. Available research shows that people with it experience low functionality, limited verbal skills, difficulty understanding daily instructions, and need a lot of assistance in doing their daily routine.
However, some research suggests some people with the condition exert rare intelligence. There are some known cases such Albert Einstein who experienced language delays and educational slowness. The list also includes world known physician Isaac Newton and the music historian Mozart.
Among Rwandan families, they have tales to tell.
Uwamahoro Dalda Walda is a mother of two boys – one aged seven and five, who both suffer from autism.
“It is easy that someone can suffer from Malaria, and you are sure there is a pill for malaria. Imagine dealing with a condition you have never heard of in your entire life. It is a huge challenge because you don’t know where to go and who to ask,” she told The Chronicles.
The boys are attending Green Hills Academy, where she pays up to Rwf3m ($3,400) per semester for them to attend the Special Needs Class.
In addition to the costs involved, Uwamahoro says she has endured insults of all kinds including some people saying she gave birth to “dumb children” or calling them “idiots”. Some people have even suggested she visits witch doctor to cleanse her of the demons she is carrying.
Not many families can afford the care that is needed.
Dusengimana Spesciose is a mother of five, and two of them live with autism. Her husband abandoned the family accusing her of “bringing a devil in the family”.
She is a farmer outside Kigali, and tells The Chronicles, of the tough day she has to endure looking after the two children with the condition.
“I pray to God to enable my children read and write. I believe that will help them during the time I will no longer be with them,” she said.
Campaigner Clement Kirenga, who also has an autistic child, said a family with such children needs to have both the mother and father to share the responsibility.
There are no specific numbers of people with autism in Rwanda, but the association says based on global estimates, there could be as many as 40,000 people with the condition in the country.