Autism spectrum disorder (ASD)-a developmental disorder that impairs one's ability to communicate and interact-can be a great burden for parents of affected children, especially in parts of the world such as Kenya where information about this condition is insufficient or hard to find.
First identified 70 years ago, the name changed from simply 'autism' to ASD to include a wider range of complex deficits and difficulties with social interaction and communication.
These autistic disorders include early infantile autism, Asperger's syndrome, and pervasive developmental disorder. At one time in Kenya, autism was associated with mental illness, curses or witchcraft. Autistic children were confined to their homes and young adults taken to psychiatric institutions.
The good news is that the situation for children with autism and their parents is slowly changing, thanks to increasing awareness about the disorder, complemented by the efforts of affected families to band together to share information and experiences.
Official data on autism prevalence in Kenya are not available, but the Autism Society of Kenya (ASK), a parent-driven organisation established in 2013, believes it could be up to 4%, or one autistic child for every 25 children. That is higher than the global average, which is one in 160 children (less than 1%), according to 2018 statistics by the World Health Organisation.
Examples abound of parents seeking guidance from the mass of medical studies, research and popular press articles about autism.
Take the case of Alice Mundia, whose son was diagnosed with autism in 2004. Like many parents in similar circumstances, Ms. Mundia did not know much about the condition. 'Although I had heard a bit about autism, I never imagined I would have to deal with the condition in any of my children,' she told Africa Renewal.
'In Kenya there are no diagnostic facilities, and no guidelines exist on treatment or interventions, which leaves parents to ignorantly make decisions on the best interventions,' notes Ms. Mundia. An occupational therapist recommended sensory integration and speech therapy for the child.
To gain more knowledge about autism, Ms. Mundia volunteered for ASK. Later, in 2014, she helped set up the Differently Talented Society of Kenya, a psychosocial support group for parents of autistic children. The organization's members share experiences on social media platforms.
Esther Njeri Mungui has a 14-year-old autistic...