Who’s Waiting for a School? a Systematic Database Search for Children with Autism Spectrum Disorder Waiting for Educational Services in the Western Cape Province of South Africa

Background:

Little is known about education for children with Autism Spectrum Disorder (ASD) in South Africa and in other low- and middle-income countries. We previously searched for all children with an ASD diagnosis in school in the Western Cape Province of South Africa. We identified only 940 children, representing a rate of less than 0.1%, significantly lower than the expected prevalence. The Western Cape Education Department (WCED) has a database for children waiting for school placement, but no previous analysis of this database has been undertaken. An understanding of this sample is important for identifying their needs in order to develop appropriate support and educational systems.

Objectives:

The objective of the study was to perform a systematic database search for children with ASD or suspected ASD waiting for educational services.

Methods:

The WCED Centralised Database for children with ASD waiting for educational services was first compiled in 2012. After appropriate ethical approvals, all relevant ASD-related data in the database and supporting referral documents were extracted on 27 June 2016. Variables of interest were demographic information, referral information, disability information and educational needs.

Results:

There were 744 children with ASD or suspected ASD waiting for educational services in the Western Cape Province. The male: female ratio was 5:1. Ninety percent were from South Africa, 6% from other countries (Angola, Burundi, Congo, Ethiopia, Libya, Malawi, Mali, Nigeria, Somalia, Zimbabwe and Bangladesh), and 4% did not specify country of origin.

A total of 17 different home languages were reported: English in the majority (52%), one of the 10 other official South African languages in 47%, and 1% non-South African languages.

The age range was between 1 and 17 years, with a median of 5 years. The majority of children waiting for services were in the 3-8 year age group. The legal school-going age for children in South Africa is 7 years. Forty five percent of children were waiting for formal school placement (aged 7 years and over) and 55% for Early Childhood Development (ECD) services (ages less than 7 years). Forty eight percent of the sample had been waiting for services for less than a year, 26% for more than a year, 19% for more than two years and 7% for more than three years.

Most referrals to the Centralised Database were made by medical practitioners from the state health sector. Ten percent of children had comorbid physical or mental health conditions, and a family history of ASD was reported in 4% of the sample. The majority of children (89%) referred were from urban areas, with only 11% from rural areas.

Interestingly, between 2012 and 2016, there was a 276% increase in the number of children waiting for educational services.

Conclusions:

The database investigation of children with ASD showed alarmingly high rates of children with ASD waiting for educational services in the Western Cape Province of South Africa. Findings support the need for urgent action to generate novel approaches for the identification, monitoring and education of all children with ASD in the country.