Kenyan families and activists working to draw attention to the problems of autism are lobbying for better laws and support to try to overcome the stigma attached to the disorder.
They are not alone in facing the significant social, communication and behavioral challenges that the disability presents. While there are no statistics available on the extent of the problem in Kenya, the U.S. Centers for Disease Control and Prevention says autism spectrum disorder affects 1 in 68 children worldwide.
John Manyara, 23, is one of the few autistic youths in Kenya who engage in gainful employment. He works at Karatasi Ya Hewa Safi, or KAHESA, which translates to "eco-friendly paper."
Simia Ahmadi began KAHESA three years ago with her personal savings of $12,000. Her staff makes paper from banana bark and rice husks, which they then sell at exhibitions, schools and trade fairs. On average, KAHESA makes approximately $500 a month, which is used to pay the workers and buy materials.
Ahmadi began KAHESA with the sole aim of generating income for young adults with mental challenges. Her hope is that the workers "will be integrated into a regular professional field so that they are now included in the workforce and not isolated. Because once they have the vocational training here, they should not stop at that. They must fly with their own wings afterwards.”
Grace Manyara, John's mother, runs a cybercafe in Nairobi. For 10 years, she struggled with the lack of awareness about how to manage autism. According to her, the stigma related to the disorder is the biggest challenge that has yet to be overcome.
“It’s a hidden disability, so there’s nothing to show that he has a disability," Manyara said of her son. "So there’s a lot of stigma. There are others who think that the child is bewitched — “kurogwa,” in our language — which is not the case. It is a manageable disability if it’s handled well.”
James Karanja, founder of the Autism Support Center Kenya, notes that the government has neglected the plight of those with autism and says it should do more to reduce the stigma attached to autism.
“We really need increased funding to institutions that offer training for persons working with those on the autism spectrum," he said. "These are the teachers, specialized teachers, medical personnel. We need therapists and also much more awareness."
Although the Kenyan government cares for the disabled through the National Disability Fund, those with autism aren’t looked after as closely as others.
Parents and activists, marking World Autism Awareness Day on April 2, hope that with more pressure from lobbying, the Kenyan government will accord those with autism stronger support policies and improved intervention.