Autism in Africa

A boy stands with his right hand touching a wall and his left palm splayed to the sun, obscuring his face.

A block of flats in Kenya’s coastal red-light district was home to this boy, his mother, his aunt, and his cousin. He ran in and out of the flat into a secluded courtyard, all the time looking up at the sky. I noticed only women staying in the block. With a great deal of affection, they kept an eye on the boy dressed in a French soccer kit © Karren Visser. Autism in Africa, 2013.
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Children with autism in Africa often lack appropriate care and support. This small body of work from 2012 to 2014 is representative of many situations where parents are trying to understand and come to terms with their child’s diagnosis. An invitation to photograph a little girl with Rett’s syndrome in Kenya for a University of Oxford Autism in Africa funding campaign was the first time I learnt of the challenges many parents face daily. Wishing to guard their privacy and not take photographs when it is not my place to do so frequently make me question my motives. On that day, seated with the father and mother of the little girl and hearing how life was for them, I knew that, notwithstanding my impaired vision, and perhaps even because of it, so long as there is consent, I have to photograph. This is what I have to give – a voice for the children and their parents.

My wish is to continue with this engagement, photographing children with autism in Africa. There is still a great deal of work needed to be done to raise awareness. What I noticed was how the children tried to communicate. Some could not speak. Some had visual or hearing impairment. Others could not walk or sit upright. Communication was often unexpected, a quick burst of movement, and laughter out of the blue. I saw patterns and began to anticipate moments that would come and go. Particular to each child, and only rarely verbalised, I sensed deep desires to connect with others.

Many of the portraits show the anxiety and isolation these children feel in trying to make sense of the expectations of the world they live in. There is an acknowledgment of the attempts of the parents, siblings, grandparents, and of mothers in particular to alleviate this suffering. Circumstance is such that in most families it is the mothers who are left to carry the burden of care.

Two boys sit back-to-back in a sparse classroom. A third child reclines on a bed in the corner.

The bed in the corner was intended for children recovering from epileptic fits. The teacher told me that it was also the refuge of the boy diagnosed with autism. The classroom for children with learning impairments in Kilifi, Kenya, was inadequately staffed and had few resources. © Karren Visser. Autism in Africa, 2012.
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An adolescent girl sits on a makeshift folding chair. One ankle is tied loosely to the chair with a rope. She is surrounded by lush vegetation.

Her mother said the only way to keep her adolescent daughter from wandering away from the homestead was to tether her to a chair as she knew to bring the chair back. The girl had once been found some distance away from home in the neighbouring coastal town of Kilifi, Kenya, walking around the taxi rank. She did not speak and communicated by making loud utterances. She had a set routine each morning, collecting stones and filling an old cloth or bottle. These she would pass from one container to another for hours © Karren Visser. Autism in Africa, 2013.
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A young man is seated on the red earth outside a mud and mangrove pole house. His legs are folded awkwardly to one side.

In a Kenyan coastal community where the main source of income was selling coconut wine, the adolescent boy lived with his sight-impaired elderly father, his mother, his father's younger wife, siblings, uncles, aunts and cousins. He and his twin brother were unable to stand or walk because their cerebral palsy was never managed when they were young.

A boy sits outside a damaged house surrounded by tropical vegetation.

This boy was suspected of having autism and a complicated illness that prevented him from attending school regularly. His mother, a widow, earned less than £18 a month to support her three children. Their house situated on the coast of Kenya was severely damaged in a tropical rainstorm and there was no money to repair it © Karren Visser. Autism in Africa, 2013.
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Four boys in school uniform in a classroom. One boy lies on the floor, another bounces a ball on the desk.

These boys were all diagnosed with autism in a mainstream school in Mombasa, Kenya, that had recently established a separate classroom for children on the autism spectrum. Space was limited and the classroom also acted as a store for obsolete computer equipment. The teacher indicated that it was hard to meet the specific needs of each child as the school had minimal resources © Karren Visser. Autism in Africa, 2012.
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An adolescent girl stands with her hand on her hip in front of a red mud constructed house.

This adolescent girl’s grandmother feared something would happen to her granddaughter as she behaved much younger than her age. She liked to wander away from the homestead on a rocky outcrop in Ganzi, Kenya. On one occasion she was found by employees of the forestry department inside the forest, where elephants roam. The girl’s parents had moved away to find work.

A young boy crouches in front of a chair made from box crates. His head and hands rest on the seat.

The boy played with the chair by either rocking backwards and forwards or banging its slats. He lived with his grandmother and two sisters in a homestead on a rocky Kenyan coastal outcrop. Unlike my previous visit when he was tethered to a tree to keep him from running into the sea, this time there was more engagement © Karren Visser. Autism in Africa, 2013.
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An adolescent girl is seated on the ground surrounded by chickens. Her complexion is affected by burn scars.

This adolescent girl lived with her mother and brother in a rural community south of Malindi, Kenya. She suffered from frequent seizures. I witnessed four in half an hour. The mother said that she refused to take her epilepsy medication but liked to eat sand, apparently as I was advised by a clinician a response to iron deficiency. When later she was assessed at the local district hospital a clinical officer prescribed another form of medication to control her epilepsy. She did not speak so much as gesture and utter sounds. She was a vital young woman, had a sense of humour, and an ability to recognise me on second meeting.

A boy is seated with his right hand on his chest. Behind him, a bright sunlit scene of maize and tropical bushes blends with his yellow checked shirt.

According to this boy’s mother he rarely spoke. He was suspected of having autism and had additional undisclosed health problems. His mother looked after him and his two siblings. They lived near Kilifi, Kenya. Since I had seen him a year earlier in the school grounds, his health had deteriorated: he was thinner, his eyes a yellowish colour, so were his fingernails, and his stomach bulged under the diaphragm.

An adolescent girl is seated on the ground sucking her thumb and touching her foot. Behind her is a mud constructed house.

At a homestead situated on the outskirts of the large, dry, tropical coastal Arabuko Sokoke forest in Kenya, I met this girl with epilepsy and learning impairment. The field worker told me that at the beginning of an epilepsy research study, the girl did not welcome strangers and used to run away. I saw a shy, but curious side to her nature.

A boy in a dark room pulls himself up to a window ledge. A shaft of light dapples his face.

This little boy's mother said he needed constant supervision. This was evident in the way he rushed about climbing up the furniture or wanting to go near a pot of boiling beans. She expressed her wish for him to get better so that she could work. The house was built on a sand dune far from running water or basic services. Its dark interior smelled strongly of kerosene.

A young girl in a black hijab leans over a chair to look at the camera.

When her headscarf was pulled back we could see scars from the countless times this young girl has banged her head. The teacher at her school in Mombasa, Kenya told me that it was difficult to stop her when she became agitated. The girl engaged with the camera and enjoyed being photographed along with her classmates.

This little girl was thought to be on the autism spectrum. The teacher at her school in Kilifi, Kenya said that her older brother was instructed by their parents to take care of her in the class for children with learning support. This deprived him of his education in Kenya’s mainstream educational system. She was underweight for her age, and according to the teacher, often came to school hungry.

A boy crouches in a corner behind an A-3 size piece of paper with handwritten alphabet letters. Only his bent legs and hands are visible.

Absorbed by writing on the back of a teacher’s poster displaying the alphabet, this boy seemed unaware of what was going on in the small classroom. He remained utterly still for more than half an hour, while the other children participated in the lesson. The school in Mombasa, Kenya, had minimal space and doubled as a boarding facility.

A boy in a yellow T-shirt glances upwards with an anxious expression. He leans on some school desks.

Detached from his classmates at a school in Mombasa, Kenya, this boy found it difficult to communicate without the constant supervision of the teacher. He would look angry one minute, smile or seem unaware of his surroundings the next. The teacher, who had no formal training, had taught the boy to blow into a musical instrument to make a sound. She expressed pride in his achievement.

A boy sits next to an open fire with a large black cooking pot. He tries to hide the side of his face with his hands, peeking out from behind his fingers.

This boy did not like school, where he was bullied for not speaking or playing with the other children. He preferred to stay at home in Ruiru, outside Nairobi, Kenya. His grandmother had to keep constant watch over him because he stole sugar from the neighbours, as well as their flip-flop sandals, which he broke. She took care of him and his sister and could not afford to reimburse her neighbours for the damage.