Over the past year, Sarosha Pillay, Madeleine Duncan and Petrus de Vries from UCT’s Centre for Autism Research in Africa wrote several studies that show the lack of support for the autistic community in of our education system. Their findings must be concerning for all parents of autistic children in South Africa.
I started reading them a couple of weeks ago and wanted to write a blog post about this last week already, but to be honest, I was really troubled by their findings and wasn't in the right mindset to write about them objectively.
So, here is a breakdown:
We are doing the best we can to bridge the gap
In their research paper, We are doing the best we can to bridge the gap” Service provider perspectives of educational services for autism spectrum disorder in South Africa, they start off by saying:
“The 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.”
In a previous study in 2020, focused on the Western Cape, they found that from a population of 1,154,353 children attending schools in the province, there were only 940 children with a diagnosis of autism spectrum disorder identified, representing a rate of 0.08%.
With the accepted WHO prevalence rate for Autism at 1 in 100 children, there should be at least 10 000 children with ASD in the Western Cape based on the figures above. Where are the missing 9 060 children?
Who's waiting for school?
While researching their paper, 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, Pillay, Duncan and de Vries found that of those autistic children waiting for a school placement, 52% had been waiting for schools for more than a year. While there has been a 76% increase in children with ASD in school between 2012 and 2016 in the Western Cape, there was a 276% increase in children on the “waiting list” for the same period. In their own words:
“… even in one of the better-resourced provinces of South Africa, the educational system was not able to meet the needs of children with ASD and their families”
We are doing damage control
The article that is probable the most alarming is this one: ‘We are doing damage control’: Government stakeholder perspectives of educational and other services for children with autism spectrum disorder in South Africa.
This study explored the perspectives of key government stakeholders on educational and other services for children with autism spectrum disorder in the Western Cape and their suggestion for improving services for these children and their families through a series of interviews.
They write that the overarching theme ‘We are doing damage control’ suggested that government departments were not doing what they should be doing for children with ASD and their families. Government stakeholders felt that the challenges in service delivery for children with ASD were part of a greater ‘cracked society’ problem, in which the legacies of apartheid are being addressed through rigid bureaucratic government systems with limited budgets. Poverty, crime and the burden of other diseases outweigh the needs of children with ASD and their families.
The study concludes with:
“Despite having progressive inclusive education policies in place, many children with ASD are out of schools. The education system’s failure in policy enactment for children with ASD is concerning.”
Are we on our own?
Overall, these studies by the Centre for Autism Research in Africa conclude that ASD educational services in the Western Cape have a range of structural challenges – low identification rates of ASD, low identification of co-occurring diagnoses, complicated and inconsistent pathways to diagnoses and, concerningly, an observation that 89% of all children in school with a known diagnosis of ASD were in special school settings. In addition, the authors identified a large “waiting list” of children in need of special educational ASD placements.
Participants in the studies perceived ASD services in the Western Cape as doing “the best we can to bridge the gap” despite the complexities of ASD population needs and prevailing contextual circumstances. However, in spite of doing “the best we can”, the majority of participants expressed significant concern about limited human resources, infrastructure and training as well as the lack of priority of ASD and other disabilities and knee-jerk responses to ASD education.
We are lucky. We can afford to send our kids to Curro, we can even afford to start our own school, Malaika House. But the majority in South Africa cannot. There have been several smaller schools founded over the past few years to cater for the autistic community and they are filling this need as best they can.
But as noted by the researchers, with government being unable to provide services for children with special education needs in rural areas and informal human settlements, unregulated services by lay providers are ‘mushrooming’ in the form of day-care centres where the educational needs of children with ASD are not being optimally met.
"… but it still doesn’t mean that the school is a formal school … So I that, I think is a half-baked service … It’s a plaster that’s been put on a sore, … I think we’re really trying to heal something by quick fixes, and not thinking it through."
Even in an ideal world, the number of problems that the Department of Education has to address in our country is high and ASD is very low on that list. As the autistic community, we will have to care for our own for quite some time. I don't know what the solution is, but maybe everyone that provides private and informal education to ASD children should start working together.
The first step is to start talking so that we can learn from each other.
Note: Thank you to the entire team at UCT’s Centre for Autism Research in Africa for doing all this research and to Prof. de Vries who decided to dedicate his life to Autism research by founding CARA. The work you do is appreciated by the autistic community.