Elizabeth Litali, Stephen's sister lives with him in Nairobi since their parents reside in Kakamega County.
In a modest home in Nairobi's South B, we meet Stephen Litali, a 37-year-old man who has lived with autism all his life. We find him setting up the table for breakfast. He serves himself some tea in his favourite blue cup and some bread. He tells us that he can only have his tea from that cup.
Stephen appears somewhat reserved as he observes us settling down for the interview. After exchanging pleasantries with his sister, Elizabeth, Stephen gradually warms up to us and is excited to tell us about himself.
“I was born in 1987 at Plainsview Hospital,” Stephen begins, recalling his early years with remarkable clarity. His mother, Grace Litali, proudly notes that Stephen has an exceptional memory and remembers dates quite well.
“I started my schooling at Fairmile Special School then in 1997, I moved to Augustana Academy and I attended boarding school there. In 2003, I moved to Acorn Special tutorials and I stayed there until I graduated in 2007. After graduation, I went to work at Langata Animal Orphanage cleaning their cages but it was risky. Animals can be dangerous,” Stephen explains.
His sister, Elizabeth, who occasionally steps in to help him finish his sentences, informs us that he later went to NITA, where he has been studying painting. Elizabeth has been a pillar of support for Stephen as she lives with him in Nairobi since their parents reside in Kakamega County.
Stephen is calm and composed during the interview, speaking eloquently and coherently. He maintains eye contact except for one moment when I absentmindedly shake my pen and his attention drifts to my hand. I notice this and stop and he shifts back to the conversation.
Reflecting on his childhood, Stephen shares, “I felt different. Sometimes I felt discriminated against. I was bullied, and people would use abusive language towards me. I even had to change schools because sometimes there was a lot of beating in school.”
Stephen, who is now 37, has lived with autism all his life, but leads a full life, thanks to support from his family.
Despite these challenges, he found solace in routine and the familiar comforts of home. His favourite meal is fish and ugali, while his favourite film is the TV series, Shaka Zulu.
When I ask about his experience as an adult, Stephen pauses, then says, “It hasn't been all good, but not all bad either. What I enjoy most about being an adult is that I can make decisions for myself. I can mingle with people from different places and cultures.”
His voice lifts as he talks about his friends, with whom he spends time listening to reggae, his favourite genre of music.
“My friends understand me,” he adds with a smile.
These friends are people from his neighbourhood that he grew up with. They have known him all his life.
“The biggest challenge is realising that it's not easy. People can be bad and say very mean things,” he comments.
Despite these challenges, he remains optimistic, drawing strength from his family and friends who have supported him throughout his life.
“I love my family because they overwhelm me with love,” he says.
Currently, Stephen is enrolled at the National Industrial Training Authority (NITA) undertaking a painting course. He speaks fondly about being part of the team that painted Muthurwa Market in Nairobi. When he is not attending classes, his day normally starts late.
"I wake up at 1pm, go to Shoppy (South B shopping Centre) to check up on my friends, then come back, take a warm shower, not a cold one, eat, nap a little, get some pocket money to go hang out with my friends again. I return home at night. When it’s boring, I come back early, but not all days are boring. Some days are sweet, especially when there's money,” he says with a twinkle in his eyes.
Stephen Litali and his sister Elizabeth Litali pose for a photo on August 27, 2024 at their home in Nairobi.
His routine, though simple, is a source of comfort and structure in a world that can often feel overwhelming.
Romantic pursuits
Stephen has maintained a social relationship with both women and men. He once had a girlfriend but things didn’t work out. But he has not given up on love. Stephen remains hopeful about the future and hopes to find love and companionship with someone who understands and accepts him as he is.
Elizabeth adds that her brother is good company and largely independent.
“When he’s upset, we let him calm down on his own. But mostly he is funny and very loving. He can serve himself food when hungry, bathe, go to the barbershop, and communicate his needs. Cooking is the only thing he doesn’t do because gas can be dangerous, but he helps with housework; setting the table, washing dishes and sweeping the floors. Stephen can also travel home to Kakamega alone. All we need to do is inform the driver of his condition so that he can check on him during the stop-overs.”
Stephen’s diagnosis
When Grace and her husband found out that they were expecting their first child, they were ecstatic.
“Stephen is my firstborn, and I had a normal pregnancy, though I remember I got pneumonia while I was pregnant with him. When Stephen was born, he was a healthy child and he achieved his milestones like any normal child,” says Grace, even though she noticed that he didn’t interact well with other children; he would isolate himself and stay in a corner. He would also cry a lot because he couldn’t express what he wanted.
“He would also throw tantrums, bite his fingers, hit his head and talk through the night. I would get frustrated and punish him, thinking he was being naughty. When he went to nursery school, he struggled with reading and writing,” adds Grace.
Grace Litali mother to Stephen Litali, speaks during an interview on August 27, 2024 at her home in Nairobi.
They consulted various specialists, but none gave them a clear diagnosis. Some would say that it was a psychiatric problem but his parents did not believe that it was. It wasn’t until he was 16 and attending Acorn Special Tutorials that the director recognised his condition as Asperger’s syndrome (a form of autism spectrum disorder).
“Finally, we had a name for what had been troubling him all those years. It was a relief to understand what he was dealing with. Having a medical background, I read what autism is and I realised that whatever symptoms he was exhibiting coincided with autism,” Grace says. She is a nurse.
It was not easy for her to come to terms with her son’s diagnosis.
“As a mother, you want your child to be like others. My biggest support has been his father, who insisted Stephen should have the best opportunities. We invested in his education and sought to give him the best life. We took him to special schools. He is a very loving and jovial child. He gives very warm hugs,” she says.
As Stephen grew up, Grace read books on how to care for autistic children and learned about the importance of diet. At that time, the most important information she got was that she needed to be careful with his diet.
She explains,
“There are things I was expected to eliminate from his diet, such as wheat, milk, sugar, and red meat. I will admit this was not easy especially because there were other children in the house. Isolating his diet from theirs was a constant struggle,” the mother of five says, adding, “I wish that I got a diagnosis earlier as I would have gotten him into therapy earlier.”
Facing stigma
Grace has experienced stigma from extended family and members of the community who didn’t understand autism and did not shy away from saying that Stephen was not normal.
"They would suggest taking him to people who pray for the sick or attribute his condition to ancestors, but I believed I could pray for him myself. Social functions were also difficult, forcing me to keep away from them. I would avoid them because he would attract so much attention with his behaviour."
We ask her what her fears are now.
“While I’m grateful he’s grown up, I worry about what will happen when we (his father and I) are not around. His siblings are very caring. They have always been supportive, and always tell me, ‘mom don’t worry, we will incorporate Steve into our lives even in our living arrangements’. I like having Stephen here in South B because he was raised here, people know him and they understand him. But at home in Kakamega, people would only judge him.”
Currently, Grace is working on getting Stephen’s NITA certificate and securing him a job.
Her advice to other parents raising children with autism is to always remember that it is a journey without an end.
“My advice is to start early with therapies, love your child, and let society know that this child is yours and you care for them. It’s not easy, but it’s doable if you put your heart into it."
Grace also emphasises the importance of finding vocational training opportunities for autistic adults and joining support groups. She belongs to one called Differently Talented Society of Kenya.
