Parents, teachers and therapists’ experiences and perceptions about early interventions for autistic children in Kampala, Uganda

Abstract

Background: Autism Spectrum Disorder (ASD) is a chronic neuro developmental disorder with core deficits in social interaction, social communication and stereotyped /repetitive behaviour and /or restricted interests. The heterogeneous symptom presentation in this population ranging from severe to minor impairments complicates the scientific and clinical pursuit of identifying predictors of early intervention outcomes. The study explored experiences of parents and perceptions of therapists and teachers towards early behavioural interventions for autistic children. The study was conducted using qualitative approaches such as in-depth interviews with parents and key informant interviews with teachers and therapists to get insights on how the interventions impact on the children’s developmental outcomes as well as parent’s well- being. Objectives: To explore parents, teachers and therapists’ experiences and perceptions towards early intervention services for autistic children. Methods: The study was conducted in six early intervention centres in Kampala city between May and June 2022. Data were collected from eight parents, six therapists and five teachers. Data was coded by highlighting text with different colours and making marginal comments that consisted of paraphrased data, codes were then linked to form categories from where themes were generated, results were reported based on themes. Results: Parents reported progress in their children’s developmental and intellectual abilities due to therapies. However, they reported that therapy was expensive and called upon the government to support them to subsidise the fees. Therapists mentioned that seeking early interventions while the child is still young (golden age) gives them higher chance to manipulate all the possibilities and eliminate symptoms although this is not a guarantee as they usually experience relapses due to administrative and other challenges. Teachers described their roles as exhausting since they take on multiple responsibilities and called upon the public to join teaching of special children to increase the teacher to child ratio. Conclusion: The experiences reveal that supporting autistic children requires everybody’s efforts such as legal frameworks, policies and pathways, availability and access to appropriate services, community awareness and acceptability, organisational and family support systems as well as individual help through seeking and adhering to intervention programs and overall consistency.