The prevalence of autism spectrum disorder in South Africa is unknown and, to date, very little research has been performed within school systems that could inform the rates, distribution and profile of needs of children with autism spectrum disorder in education. We performed a comprehensive database search of all children with autism spectrum disorder in the formal education system in the Western Cape province of South Africa and compared the findings with population demographic expectations of the province. From a population of 1,154,353 children attending schools in the province, a total of 940 children with a diagnosis of autism spectrum disorder were identified, representing a rate of 0.08%. The male: female ratio was 5.5:1. There was a significant difference in the self-reported racial and language composition of the autism spectrum disorder sample compared with the Western Cape demographics where a higher proportion of children with autism spectrum disorder were from White racial groups and English-speaking homes. Eighty-nine percent of children with autism spectrum disorder were in Special Schools and only 10% were in Ordinary/Mainstream Schools. Most of the children (83%) attended schools in the City of Cape Town and only 17% in rural areas. Co-occurring intellectual disability was reported in 22.2% of the population, attention-deficit/hyperactivity disorder in 2.6% and epilepsy in 0.7%. Data showed a 76.03% increase in autism spectrum disorder in schools between 2012 and 2016, with an average increase of 15.18% per year. Findings suggested an under-representation of autism spectrum disorder in schools and an under-identification of co-occurring conditions. Results indicate that despite being one of the better-resourced provinces in South Africa, the Western Cape is not equipped to identify and meet the culturally and linguistically diverse needs of its communities. We propose strengthening of educational systems for children with autism spectrum disorder in the Western Cape, and similar investigations in other South African provinces. Lay abstract There is very little information about autism spectrum disorder in South Africa and not much is known about children with autism spectrum disorder and their educational needs. In this study, we searched for all children with autism spectrum disorder attending schools in the Western Cape province of South Africa and compared our findings with the profile of people living in the province. We found fewer children with autism spectrum disorder in schools than expected (0.08%) and co-occurring conditions (intellectual disability = 22.2%, attention-deficit/hyperactivity disorder = 2.6% and epilepsy = 0.7%) were reported at lower rates. More children were from White racial groups and from English-speaking homes compared with the Western Cape population demographics. Most of the children (89%) attended schools for children with Special Educational Needs and only 10% were in Ordinary/Mainstream schools. Eighty-three percent attended schools in urban areas and 17% in rural areas. There was a 76.03% increase in children with autism spectrum disorder in schools between 2012 and 2016. Our findings support the need for better identification and reporting of children with autism spectrum disorder in the education system. We propose urgent review and strengthening of education systems for children with autism spectrum disorder in the Western Cape province and in other parts of South Africa.

In this study, we examined the demographic, disability, referral and service needs profile of children with autism spectrum disorder waiting for school placement in the Western Cape Province of South Africa and combined our findings with those of a previous study on children with autism spectrum disorder attending schools in the province over the same period of time. In June 2016, there were 744 children with autism spectrum disorder or suspected autism spectrum disorder waiting for an appropriate school placement, 478 children were pre-school age and 266 children were school-going age. Fifty-three percent (53%) of pre-school age children and 38% of school-going age children were reported to be at home and receiving no educational or other intervention while they waited for a school. More than half the children on the waiting list had been waiting for services for more than a year. The combined data on children with autism spectrum disorder in school and waiting for schools showed a total of 1684 known children with autism spectrum disorder in the Western Cape in June 2016, representing less than 0.1% of the childhood population in the province. The results highlight the need for education systems strengthening to accommodate all children with autism spectrum disorder in appropriate educational settings from as early as possible. We propose multi-stakeholder engagement to develop contextually appropriate policies, best practice guidelines and actions for the education of children with autism spectrum disorder in South Africa. Lay abstract In South Africa, there are limited educational opportunities for children with autism spectrum disorder and many children with autism spectrum disorder have to wait for school placement. This study examined the education waiting list for children with autism spectrum disorder in the Western Cape Province of South Africa and reported on the demographic, disability, referral and service provision characteristics of these children. In June 2016, there were 744 children with definite autism spectrum disorder or possible autism spectrum disorder between the ages of 1 and 17 years waiting for school placement. There were children of compulsory school-going age who were reported to be at home and not receiving any intervention while they waited. More than half the children on the waiting list had been waiting for more than a year. We then combined the findings of this study with the findings of a previous study on children with autism spectrum disorder already attending schools in the province over the same period of time. We found a total of 1684 children known to have autism spectrum disorder – this was less than 0.1% of all young people in the province at the time. Between 2012 and 2016, there was a 276% increase in the number of children with autism spectrum disorder waiting for schools in the Western Cape. The results show that education systems in the Western Cape need to be strengthened to accommodate all children with autism spectrum disorder in appropriate education settings from as early as possible. We recommend engaging with different stakeholders to develop policies, best practice guidelines and actions for autism spectrum disorder education in South Africa.

BackgroundThe South African education system is increasingly unable to meet the growing needs of children with autism spectrum disorder (ASD). Recent studies in the Western Cape, one of the better resourced provinces in South Africa, showed that the pathway to care for children with ASD was an inconsistent and lengthy process, and that many children with ASD waited for extended periods to get access to an appropriate school placement. It is therefore clear that scalable and sustainable solutions are required to improve access to appropriate education for children with ASD.MethodsHere we performed a qualitative study using thematic analysis of ten multi-sectorial ASD service provider interviews in the Western Cape Province to examine provider perspectives and proposed solutions to meet the educational needs of children with ASD.ResultsProvider perspectives were grouped in three categories: “bridging the gap across the spectrum and lifespan”, “gaps to bridge”, and “building bridges”. The first category captured provider perspectives of the service-related needs inherent to a diagnosis of ASD. The second category summarized service provider views of the challenges associated with providing services to children with ASD and the third category captured provider perspectives on potential actions to improve ASD education services delivery in the province. The overarching theme that emerged was “We're doing the best we can to bridge the gap”.ConclusionParticipants provided ten key recommendations for service strengthening that may lead to contextually relevant innovations to meet the educational needs of children with ASD in the province. Findings from this study has direct relevance to other South African provinces and may have relevance to improve pathways and reduce service delivery gaps also in other low-and-middle-income countries.

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.