Statistically 1 in 68 people are affected by Autism Spectrum Disorder (ASD) worldwide. This means that there are approximately 200,000 people in Zimbabwe living with autism. There is an urgent need to raise public awareness about the condition as many people with ASD and their families are stigmatised by their communities.
Most ASD children cannot be accommodated in schools because of their unusual behaviour. Traditionally children in Zimbabwe affected by ASD are thought to be cursed or possessed by evil spirits. Parents are also often blamed for failing to manage or control their ASD-affected child.
People with ASD often have ongoing social problems typically characterised by difficulties in communicating and interacting with others – whether through verbal or non-verbal communication. They are in effect, locked into their own world. They often display ‘stim’ (self-stimulating) behaviour: repetitive actions like rocking, pacing or flaying their arms, obsessive interest in certain activities and limited interest in other areas. A large number of people with ASD have difficulties with basic motor skills and also suffer from epilepsy and other disorders like sleep difficulties and digestive problems.
Pathways Autism Trust was founded in 2013 by Gordon and Flora Chinaire, and co-Founding Trustees Doreen Tirivanhu and Rose Sibanda to provide care and educational training for children who suffer from ASD. All of the founding trustees are parents of children on the autism spectrum. Pathways is a registered not-for-profit trust and a registered Private Voluntary Organisation. The school, which is run from a three-bedroom cottage in Marlborough, was established in September 2013 with just two children and several qualified volunteers.
Currently there are six children enrolled at the school and six members of staff, so there is a one-on- one ratio. All of the children are severely affected by ASD and are non-verbal. Members of staff include a psychologist, an occupational therapist, a rehabilitation technician, a nurse aid and an expert in Early Childhood Development (ECD).
Gordon Chinaire is the current full-time executive director of Pathways while Flora Chinaire is a non-executive trustee and Secretary of the PVO. Gordon and Flora first realised their son Tawana – now 15 – was not reaching developmental milestones like smiling, returning his parents’ gaze, cooing or babbling as early as when he was one year old. At the age of three – after extensive testing, behavioural assessments and consultations with paediatricians and psychiatrists – he was diagnosed as having ASD.
Flora accepted the diagnosis but Gordon was in denial for a few years and took time to come to terms with the diagnosis. Today Tawana is one of the six children who receive educational and therapeutic care at Pathways. He is learning a range of skills he needs to cope with his environment. Often the parents of children with ASD split up due to the pressures and demands of raising a ‘special’ child but for Gordon and Flora it seems to have strengthened their relationship as they share the responsibilities of caring for Tawana. They worry about who will take care of Tawana when they become too old or pass away. They maintain a positive outlook for their son and encourage other parents to adopt an accepting and loving attitude towards their ASD child and to never put limitations on his potential. The Chinaire’s have observed that each child is endowed with their own unique talents and capabilities. At the moment, Pathways operates like a normal school with set hours every day and school holidays. Pathways Autism Trust is still in its early stages but there are plans to develop a respite centre with full boarding facilities in the future.
To make a contribution in any way, or to volunteer your time, contact the Founding Trustees on 0776 741 024 or 077255610 or visit their Facebook page: Pathways Autism Trust.
Image: Pathways Autism Trust founders Gordon and Flora Chinaire help their son Tawana who has Autism Spectrum Disorder (ASD) at their school.