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 behaviour.
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 extensive stay in 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 KNA at the National Council for Persons with Disabilities (NCPWD) office, Ndungu narrated the challenges that arise from raising an autistic child as the organisation 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 which necessitate regular doctor’s visits. Unfortunately, no employer is patient enough to allow me that much time off from work,” she said.
Society also discriminates against children with ASD (autism spectrum disorder) because of behaviours 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 afterwards 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 sensitise the 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 realised 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 sensitise 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 material to help autistic children. 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 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,” she explained.
By Hellen Lunalo