‘We are doing damage control’: Government stakeholder perspectives of educational and other services for children with autism spectrum disorder in South Africa

Abstract

Autism spectrum disorder is a growing public health concern in low-and middle-income countries that has prompted a World Health Organization resolution on ‘ comprehensive and coordinated efforts for management of autism spectrum disorder’. Despite being a signatory of the resolution, South Africa does not have any national policies to guide the management of autism spectrum disorder services. This study explored the perspectives of key government stakeholders on educational and other services for children with autism spectrum disorder in the Western Cape Province of South Africa and their proposed solutions to meet the needs of autistic children and their families. The overarching theme that emerged was ‘We are doing damage control’. Government stakeholders acknowledged that autism spectrum disorder services were falling between the ‘cracks’ caused by competing societal demands on government resources. Participants shared perspectives about autism spectrum disorder services in three categories: a cracked society, siloed service systems and gap-filling strategies. Findings from this study highlighted the need for collaborative efforts between government departments and civil society to develop a strategy for autism spectrum disorder in line with the World Health Organization resolution. Multistakeholder engagement to break down barriers, strengthen systems and develop innovative solutions to improving services for children with autism spectrum disorder and their families is recommended. Lay abstract Autism spectrum disorder is a growing public health concern in low- and middle-income countries like South Africa where there are no plans or policies in place for autism spectrum disorder management. Many children with autism spectrum disorder in South Africa are out of schools and waiting for school placement to become available. This study explored the perspectives of key government stakeholders on educational and other services for children with autism spectrum disorder in the Western Cape Province of South Africa and their suggestion for improving services for these children and their families. Semi-structured interviews were conducted with government stakeholders from the Western Cape Department of Education, Department of Health and the Department of Social development. The main theme that emerged was ‘We are doing damage control’. Government stakeholders acknowledged that autism spectrum disorder services were being overlooked because of other demands on government resources. Finding from this study highlighted the need for government departments to work together to develop a strategy for autism spectrum disorder management. Engagement between government and civil society to break down barriers, strengthen systems and develop solutions to improving access to services for children with autism spectrum disorder and their families is recommended.