The World Health Organisation (WHO) defines Autism as a lifelong neuro-developmental condition characterized by difficulties in social interaction and communication and restricted or repetitive patterns of thought and behavior.
One out of 160 people in the world have the disorder and in Kenya, it affects approximately four percent of the population according to an estimate by the Autism Society of Kenya which translates to one autistic child for every 25 children.
This is the case for 13-year-old Jacinta Gathoni Nyambura, a resident of Theta ward in Juja and a Grade 7 pupil at Magomano Special School who was born normal but contracted meningitis at the age of three.
“After an extended stay in the hospital, I discovered that the convulsions she had experienced while sick had affected her hearing and speech meaning she could no longer speak or hear properly. Her limbs were also affected and walking became a problem for her. I was now forced to become her full-time caregiver when the doctors finally diagnosed her with autism,” said Gathoni’s mother Rosemary Nyambura Ndungu.
In an interview with Kenya News Agency’s Hellen Lunalo at the National Council for Persons with Disabilities (NCPWD) office, Ndungu narrated the challenges that arise from raising a child with autism as the organization celebrated World Autism Awareness Day.
“I currently run a grocery business in Ruiru because as a full-time caregiver, I cannot be employed. The child gets sick quite often which requires countless trips to and from local hospitals. The drugs she is on currently that are meant to manage her condition also have a lot of side effects that necessitate regular doctor’s visits. Unfortunately, no employer is patient enough to allow me that much time off from work,” she said.
The society also discriminates against children with ASD (Autism Spectrum Disorder) because of behaviors they exhibit like aggression, meltdowns, or hugging impulses that people find as a source of annoyance, and as such Gathoni has a hard time interacting with other children her age.
The numerous doctor’s visits and drugs that are prescribed afterward are also very costly and without medical cover, raising funds for medical care is difficult.
All these challenges inspired Ndungu to start a foundation known as Hope & Joy to sensitize society on Autism and other conditions linked with disability.
“I started going around my home area talking to people about autism, debunking myths, and encouraging other parents with autistic children because I realized a lack of education and awareness of the condition are the top reasons behind the stigma faced by autistic children. Little by little I have seen tremendous change in people’s attitude towards Jacinta and I am hopeful that with a bigger platform, I will be able to reach and sensitize more people,” she said.
She asked the government to provide more support to children with ASD in the form of medical insurance, physiotherapy, emotional and psychological support for caregivers, and life skills empowerment for the children as they transition from childhood to adulthood.
“It is difficult to know how many Kenyans are dealing with the disorder because no comprehensive study has been done. We therefore largely depend on foreign materials to help children with autism. As a country we need to set up facilities and policies for autism,” said Ndungu.
“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 of 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,” she explained.
BY HELLEN LUNALO, KENYA NEWS AGENCY