At the Kisii Teaching and Referral Hospital’s (KTRH) occupational therapy department, parents with autistic children gather and, as their children are being attended to, they share their day-to-day challenges.
It is at this facility that the idea of coming up with the ‘Dazzling Autism Centre’ was conceptualised in 2018.
James and Mary Anyona were among the parents who had taken their children to the facility for routine occupational therapy, a few days after their daughter, aged three years at the time, was diagnosed with autism.
Occupational therapy is the use of assessment and intervention to develop, recover or maintain meaningful activities, or occupations, of individuals, groups or communities. It is an allied health profession for occupational therapists and occupational therapy assistants.
Autism on the other hand is a serious developmental disorder that impairs the ability to communicate and interact. Autism spectrum disorder impacts the nervous system.
Autistic children need to undergo occupational therapy, behaviour therapy, speech-language therapy, play-based therapy, physical therapy and nutritional therapy.
Routine is important and the programme should be designed in a way that can be sustained.
“The financial and physical strain to our family quickly became unbearable – more so to a three-year-old child. This necessitated that we seek a local solution within Kisii County. At KTRH, there were no equipment to fully cater for the full spectrum of needs that our autistic child had,” said Mrs Anyona.
The Anyonas opted to team up with other parents who were facing similar challenges with a view to setting up a facility to cater for the needs of autistic children, which they named Dazzling Centre for Autism.
Their daughter, who is now seven years old, is ready to join an ordinary school after undergoing the special training needed for children with autism challenges.
Mrs Anyona says Kisii and many other counties in the country lack special schools for autistic children. The few that exist, she says, are not exclusively tailored for autistic children and hence do not offer the kind of help they need.
“The biggest hurdle we had to overcome, however, was the cultural misconception around autism. Parents hide their autistic children from the public as many perceive them as bewitched. This misconception leads men to abandon their families, leaving their wives to contend with an even tougher burden of catering for an autistic child,” said Mrs Anyona.
She explains that back in the villages, such children are called ‘Machara,’ meaning ‘not of sound mind’.
“Such demeaning names traumatise and stigmatise parents, making most to shy away from coming out to seek help for their children,” said Mrs Anyona.
This is partly why there is no data on the exact number of autistic people in the county.
Haven of hope
Dazzling Autism Centre has grown to be a haven of hope for parents with autistic children. Currently, the centre hosts seven autistic learners, all from Kisii county.
Each parent pays Sh10,000 per month in children’s fees. At times, the school receives funding from donors, so during such times, they are exempted from paying.
Ms Anyona says her daughter was rejected at all the schools she took her. They said she was bothersome.
“At one of the schools, they often gave her piriton syrup to keep her asleep. At another school, they told me outright they could not take in my daughter because she is troublesome,” she said, revealing she has not given birth to another child because she wants to give all attention to her autistic child.
Mr Theophilus Onyiego, 35, also has an eight-year-old autistic daughter.
Mr Onyiego says it took him two years to discover that his child was autistic.
“Many physicians, especially in the rural areas, are not equipped to diagnose autism at an early age and even when they do, they always find it difficult to be the bearers of the “bad news”, as any disability is equated with a death sentence in the region,” said Mr Onyiego.
Consequently, such children miss out on the benefits that are linked to early identification and early entry into appropriate treatment programmes, such as occupational therapy, speech therapy and nutritional intervention.
“This calls for improvement in diagnostic services for autism in Kenya and Africa in general as well as increase in the level of knowledge and awareness through massive education,” he said, noting that early intervention is key.
He explains that his daughter was born on the seventh month after her mother, Ms Serah Mogaka, developed complications.
Ms Ruth Kwamboka is another parent with an autistic child – an eight-year-old boy.
The boy was born with club foot and jaundice, for which he was treated. It was, however, later discovered that he had autism.
“I used to pity myself a lot at the time and kept questioning God, ‘Why me?’ But when I met other parents here, I got hope and support. Knowing that I was not the only one with such a child and that my son had many other abilities that I had not discovered motivated me a lot,” said Ms Kwamboka.
She said she has not given birth again because she wanted to give total attention to her son.
Ms Dolphine Bosibori, a teacher at the facility, says their biggest challenge now is handling the Covid-19 pandemic.
“Some get scared when they see us with face masks. Autistic children stick to routine, and the use of face masks was such a big source of trouble here. Some children are yet to adapt,” said Ms Bosibori.
It was also hectic when schools were closed last year and the children had to start all over again when schools were reopened in January this year.
“We are trying to develop their minds and cutting short their routine means we must start afresh,” said the special school teacher.