NAIROBI, Kenya, Apr 16 – April is autism month set aside to raise awareness on the condition that debilitates thousands in Kenya effectively trapping those with it from communication with the outside world.
Autism is a neurological, developmental disorder; a lifelong disability usually noticeable by the time a child is three years old.
According to the Autism Society of Kenya: “The essential features of autistic disorder are the presence of markedly abnormal or impaired development in imagination, social interaction and communication and a markedly restricted repertoire of activity and interest. Many children with autism never develop speech at all, and those who do, do not use it to communicate.”
Capital News spoke to Valerie Nyambura whose brother Andrew lives with the condition.
“It was really hard because I couldn’t understand what was wrong. He would just be curled up in a corner. He wouldn’t talk. If you approached him to play, he’d cry,” she says.
Andrew was enrolled into a special school by his parents but one day, all of a sudden, he couldn\’t learn anymore.
“At some point when he was in St Austins (school) he shut down. He couldn’t learn anymore. He couldn’t talk. He stopped everything he had learnt how to do. He was really good in school with drama. He stopped.”
Her family sought medical attention and to their dismay, despite endless trips to both public and private hospitals, no one really knew what ailed Andrew.
“They told us he is mentally ill (and that we should) take him to Mathare (mental institution). We had never heard the word ‘autism’ until he was 17 years old. My grandmother met a doctor, a professor who had come visiting, and he’s the one who told us about autism.”
Ten years after his condition was diagnosed, Nyamburua says her brother has moved to the US where he can get better care.
But left behind are many who can’t afford the help they need.
“There are people here (in Kenya) who don’t have that money (for special care). They don’t know what to do. They tie up their children. They’ve been under so many years of medication they’ve become mentally retarded.”
Nyambura now works with the Autism Society of Kenya as the Field Operations Officer and says their greatest challenge has been persuading the government that the condition is prevalent here and needs attention.
“They don’t want to tell you they don’t know what’s going on. They’ll put them (people with autism) under medication. They won’t tell you what the medicine is for. They do not want to be given the information. They won’t listen to us because they think we don’t know.”
She says the society plans to carry out sensitisation campaigns on the disorder next month.
“We want to start training all over the country to deal with health professionals, teachers, families, the care givers. Health professionals – the schools that they go to learn…they need to train people about autism.”
The Autism Society of Kenya is a parent-driven initiative started in 2003.
“It was formed out of desperation, by parents with children with autism. These parents had nowhere to take their autistic children, especially those highly hyperactive and those with pervasive Developmental disorder (PDD),” the society’s website reads.
The society helps children with the disorder through dietary intervention, sensory integration, behavioural modification and individualised educational programs.
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