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05/13/2011

Autism in Ghana part II: Battling stigma and education youth

Seletay resized 1
Seletay Pi-Bansa, 8, learns to read at write at AACT, a special school for autistic youth in Ghana. Photo by Angela Johnston.  

By Angela Johnston 

A group of students gather in a circle around a blackboard in a small Accra classroom. Eight-year-old Seletay Pi-Bansa holds a piece of chalk. He begins to sketch letters on the board and his classmates clap in a rhythmic beat to encourage him.

 “Let’s hear for Seletay,” the teacher says at the Autism Awareness, Care and Training Centre (AACT).

Seletay’s mother, Evelyne Pi-Bansa, sits outside. She says this autism centre is helping Sel learn better than other schools he has attended in the city.

The autism centre is one of only a few places here that work with autistic children, in a country where no official statistics exist about the number of people with autism.

And that lack of resources for families with autistic children has some calling for more to be done in a country where stigma about the disorder remains high.

Seletay’s mother says many people here do not understand his behaviour, like throwing tantrums or running around—she says people often think he is spoiled. And she says it was hard for her to hear Seletay’s diagnosis.

“It just hit me like a tornado,” she says, “I was in denial, and for a long time we started going from place to place.  Somebody would say, let’s go see this pastor.  Let’s go to this church, and pray.”

Now, Pi-Bansa is emphasizing the activities that make Seletay happy—like jumping on trampolines, sight-seeing and swimming.  And she says she hopes one day, he will be able to enjoy another typical childhood experience—attending a properly resourced mainstream Ghanaian school.

“We all have rights,” she says, “If the government is providing [education] for the everyday child who goes to everyday school, I should also have, because I pay tax.”

It’s a fight Serwah Quaynor has also taken up. She runs the centre, which offers speech and language therapy, life skills training and functional academics.  About 40 students attend every day.

Though Quaynor opened the centre more than a decade ago, she says understanding about the disorder remains low.

“People are locking some of their children in because nobody wants to know,” says Quanor. “Even in families, people don’t want to be with you. Friends shun you . . . and you find yourself rather alone.”

Quaynor says the government needs to train teachers to help children with autism and also increase support in rural areas. 

Dr. Ebenezer Badoe, one of Ghana’s leading experts on autism, also says more can be done. Parents need to band together he maintains, and start demanding more from government.

 “We need to hear them time after time, putting pressure and then the resources will start to come,” he says.

The deputy director of the Ghana Education Service, Stephen Adu, told Ghana’s Citi FM that no specific programs exist in Ghana’s public schools for autistic students. Teachers refer cases to health specialists—but are often on their own in the classroom.

Back at the centre, Evelyne Pi-Bansa says she is already thinking about Seletay’s future.  She says she wants him to develop a skill—such as cooking, or IT expertise—and be independent. And she is optimistic about his future.

“We don’t have any doubts that he will be the best in his field, and we want that,” she says. 

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