Who’s waiting for a school? Rates, socio-demographics, disability and referral profile of children with autism spectrum disorder awaiting school placement in the Western Cape Province 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.