The reality of living with autism in Kenya

12.10 pm.

As we drive into Donholm Estate at Cerebral Palsy Society of Kenya, Ilhan Issa (14) is doing laps round the compound as a group of adults look on. 

“This is what she does when she wants to calm down — she just walks out of class and starts running round the compound. 

“Right now she is on her menstrual periods and so she is moody and hyper-sensitive,” her mother, Istanbul Issa (40), who hails from Moyale, opens up. 

Ms Issa tells Healthy Nation that Ilhan is her first born. 

“Something really strange happened five months after giving birth— my child developed this huge appetite. She could gobble up to five bottles of milk and still cried for more because it was just never enough.”  

Ms Issa took Ilhan back to hospital and in no time, doctors would let her in on a discovery that would change her journey into motherhood forever. 

“This was my first time hearing about autism. I was not given more information though I later learnt that it is a developmental disorder of variable severity that is characterised by difficulty in social interaction and communication and by restricted or repetitive patterns of thought and behaviour. I have brought her here because we do not have good and affordable autism facilities in this country,” the mother of three discloses to Healthy Nation. 

According to Autism Speak, a global organisation for persons living with autism, there is not one autism but many subtypes, most influenced by a combination of genetic and environmental factors.  This is because autism, also known as autism spectrum disorder (ASD), is a spectrum disorder, and each person with the disorder has a distinct set of strengths and challenges. 

The experts explain that the ways in which people with autism learn, think and problem-solve can range from highly skilled to severely challenged.

Some people with ASD may require significant support in their daily lives, while others may need less support and, in some cases, live entirely independently.

“Several factors may influence the development of autism, and it is often accompanied by sensory sensitivities and medical issues such as gastrointestinal disorders, seizures or sleep disorders, as well as mental health challenges such as anxiety, depression and attention issues.

According to the National Library of Medicine (NLM) changes in over 1,000 genes have been reported to be associated with ASD, but a large number of these associations have not been confirmed.

“Many common gene variations are thought to affect the risk of developing ASD, but not all people with one or more of these gene variations will be affected. Individually, most of the gene variations have only a small effect.

Genetic factors are estimated to contribute 40 to 80 per cent of ASD risk.

The risk from gene variants combined with environmental risk factors, such as parental age, birth complications, and others that have not been identified determine an individual’s risk of developing this complex condition,” NLM says.  The term ‘environmental risk factor’ is usually understood to mean the chemicals or pollutants a person is exposed to. But scientists use a broader definition: An environmental risk factor is anything that alters the likelihood of having a condition and isn’t encoded in an individual’s DNA.

The National Institute of Environmental Health Sciences points out that progress has been made toward understanding different environmental risk factor.

“The clearest evidence involves events before and during birth, such as: Advanced parental age at time of conception, prenatal exposure to air pollution or certain pesticides, maternal obesity, diabetes, or immune system disorders,” it highlights.

Signs of autism usually appear by age two or three.

Some associated development delays such as delay in reaching language, thinking, social, or motor skills milestones can appear even earlier, and often, it can be diagnosed as early as 18 months. 

Research shows that early intervention leads to positive outcomes later in life for people with autism. 

The redflags

The Centers for Disease Control and Prevention (CDC) highlights that children or adults with ASD might: not point at objects to show interest (for example, not point at an airplane flying over), not look at objects when another person points at them, have trouble relating to others or not have an interest in other people at all, avoid eye contact and want to be alone, have trouble understanding other people’s feelings or talking about their own feelings, prefer not to be held or cuddled, or might cuddle only when they want to, appear to be unaware when people talk to them, but respond to other sounds, be very interested in people, but not know how to talk, play, or relate to them, repeat or echo words or phrases said to them, or repeat words or phrases in place of normal language, have trouble expressing their needs using typical words or motions, not play “pretend” games (for example, not pretend to “feed” a doll), repeat actions over and over again, have trouble adapting when a routine changes, have unusual reactions to the way things smell, taste, look, feel, or sound and lose skills they once had (for example, stop saying words they were using).

Ilhan’s mother says things took a turn for the worse after the father of the child died; leaving her to come to terms with caring for their baby alone.

“I am in my third marriage now as my two previous husbands passed on and you know in my community when your husband dies; someone else has to marry you.

“I did not know what to do and so I turned to Google to find out how to feed and take care of an autistic child.”

“You have to manage how such children eat because their appetite knows no bounds . I soon learned that sugary foods make them restless and so hyper so I had to change her diet completely. She now enjoys fruits, especially oranges and lemons, rice, white meat, vegetables among other foods but I have to monitor because she will eat until she starts vomiting if you don’t stop her,” Ms Issa points out.

Trizah Muroki, 46, a special needs education teacher at the institution, says when you stay with an autistic child there are things you learn. 
“When you spend time with children like Ilhan, there are things you learn because of day-to-day interactions. When she comes in and you notice she is moody because of her age being an adolescent, you will sense a temper - hyperactivity means they can throw tantrums because of excess energy, sometimes she is also so hungry ,basically small  things affect their moods ,” she says. 

Ilhan has a way of managing her tantrums whenever they occur.
“She walks out, takes one lap round the compound then she relaxes.
“You see, raising a child like this is team work, you have to keep them busy and be alert. Unfortunately, Kenya’s curriculum does not very much cater for their needs.
“The number of teachers trained to handle special needs children is negligible and facilities for autism are very few, which is why we have taken her in,” says the special needs trainer.

 The World Health Organization (WHO) says one out of 160 people have ASD.  In Kenya, the disorder affects approximately four per cent of the population according to a 2007 Autism Society of Kenya estimation - that is one autistic child for every 25 children, which is higher than the global level. 

Experts and authorities disclose that even though there are many cases of autism in the country, they do not know what is causing the rise as there has never been any official study into the matter.

They highlight that lack of comprehensive research and data on autism in Kenya remains a huge challenge.
Other than awareness and support groups, there has been low intervention methods on how to live with the condition or alleviate the same to improve the lives of these children locally.

However, some “treatment” methods have been introduced in the country recently.

According to Dr Pooja Panesar, a board certified behaviour analyst and the first professional to practise Applied Behavior Analysis (ABA) in East Africa at Kaizora Centre for Neurodevelopmental Therapies in Karen, Nairobi, Kenya needs to do more in regards to autism.
“We are still trying to get awareness, it has moved up over the years and soon we will get to autism acceptance. We have seen more people over the years who have heard what it means but now we must get more information to rural areas. In urban areas information is more accessible but in rural areas myths and misconceptions are still rife — people are seeking help from traditional healers as there is not as much information that is accessible ,” Dr Panesar tells Healthy Nation.

She highlights that there is a difference between awareness, acceptance and inclusion.
“In rural areas we are looking at more awareness, in urban areas it’s about acceptance, we still have to now work on inclusion.
“We have a centre in Kenya and Tanzania as well as Kaizora Foundation that supports those who cannot afford therapies. At the moment we have over 50 clients whom we serve,” the doctor says. She breaks down the types of therapies they offer.
“Kaizora is an evidence-based institution, we use interventions that have been tried and proven to work out there. They include applied behaviour analysis (ABA), occupational therapy, speech therapy, social skills training as well as education, “the University of Massachusetts, Boston masters graduate lists.

Speech therapy is a type of therapy that looks at how language is understood.
ABA is a type of therapy that can improve social, communication, and learning skills through reinforcement strategies. Many experts consider ABA to be the gold-standard treatment for children with ASD or other developmental conditions.

Whether ABA is helpful or harmful has become a highly contentious topic — such a flashpoint that few people who aren’t already advocates are willing to speak about it publicly.

Other advocates say scientists need to be open to the fact that ABA might not work for all.

“ABA involves as much as 40 hours a week of one-on-one therapy, which is too much for a young child, and some parents claim it has predatory approach to parents (based on the founder’s belief of it’s their fault the child is the way they are) ,” a concerned parent who sought anonymity told Healthy Nation.

In terms of costs, Dr Panesar discloses that they have different packages.

“The beauty of our programme is that we have different packages for different needs. Anything from one session a day to the full-time, we ask a parent what their budget is and create a package that suits their needs.

For a single session, it is Sh2,000, which is the most expensive, and then it goes down from there.”
She admits that Covid-19 has not made things easy.
“When the pandemic started we closed but we wanted to make sure we were not leaving anyone hanging so we trained our staff to do all the therapy sessions online.

Felicity Nyambura (80), the founder of Autism Society of Kenya, tells Healthy Nation that many parents today still hide their children under lock and key due to the stigma around autism in the country. “I started the society in 2003 because my grandson Andrew, who is now 38 years old, was born with autism. 

“At his birth in 1993, he seemed to be okay though he did not pick up like babies usually do.  Andrew did not walk until he was about two and a half years despite the fact that we saw all the possible doctors we could have seen,” 
The young Andrew also delayed in speech. 

The primary health expert adds that they kept consulting to no avail as doctors did not know what to do. 
“We were at first told that he was mentally retarded but kept searching for answers until when he was about 14. We were then referred to Nairobi Hospital but still we could not get any answers. 

“On that day as we were walking out , there was an old nurse who signalled me to wait for her outside, where she asked me to go to Gertrude’s Hospital and meet a professor from England who then visited there every Friday ,” she says. 

It was now 2001, and the desperate family had not given up their search for answers.
“When we went in there, Andrew was agitated and hyper-active, I started crying but the professor calmed me down and after examining Andrew he said, don’t worry, this is autism.

“Despite the fact that I was very well travelled and learned, I had never seen that word.”

The founder says the professor went ahead to explain that autism is not a disease but a neurodevelopmental disorder. 
“You do not treat autism with medicine but handle it with processes, the professor insisted but I could not believe it at first, and so I went home with my Andrew,” Felicity discloses.

She rounded up parents who had children with similar conditions after which she decided to register a society for persons with autism to help other parents who were coming to terms with autistic children. 

“When we went to the NGO council to register this society at the time, we were kicked out. There was a man who kicked me out of the office and said there was no disability called autism. 

“We argued and they could not just listen, I went home and returned the next day, but I was sent away again. I cried but on the third day I decided to change strategy and so I went with Andrew in his hyper-active state.

“He got in and started working on their files, turning everything upside down.
“They got so angry calling him mad but there was a man who had come to seek their services who told them to stop because he had seen such children in his village,” she narrates.

The annoyed officials granted her wish and she went home. 

The founder of the society, which is located along Thika Road, says the government seems to have abandoned addressing the plight of persons living with autism. 

“We have no funding to do anything and are almost shutting down. I have knocked doors in almost all offices but no one is willing to listen.  
“For years we have defaulted on rent and now I attend to parents who have autistic children from my home,” the founder discloses.

“It is not easy to know how many Kenyans are dealing with this because no comprehensive study has been done at all, we largely depend on foreign material to help autistic children and we seem not to be interested as a country in even setting up facilities and policies for autism.

I have written books on raising and feeding autistic children that I hope will help but if you ask me why there are increasing cases of autism in Kenya the answer is simple, I don’t know,” says Felicity.

When Healthy Nation sought to know why there seems to be a rapid rise in the number of autism cases in the country Dr Lincoln Kamau, an autism treatment expert, researcher and behaviour analyst who is based in the US explained that the numbers have always like that and we just did not know.

“Autism has always been with us in Kenya. But many individuals were never identified or even diagnosed. Lately, there has been a lot of awareness on autism. We have to focus on awareness, identification and availability of diagnostic services so children are identified early and therefore are able to get diagnostic services,” he explained.

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