Nokhanyo Mdzanga: Children with autism suffer double disadvantage

Autism has become a buzzword in SA, with more and more communities becoming informed about this condition.

However, when everybody else is sending their children “back to school”, a parent like myself is wondering where that is.

Parents of children with autism, just like any other parents, have aspirations for their children.

We are concerned about their educational experiences and how their future will look.

We want our children to have a good education that will enable them to succeed in life.

In SA, where the bill of rights in the constitution (Act 108 of 1996) states that all citizens have the right to basic education regardless of barriers to learning, it is disheartening to learn that there are thousands of children who do not benefit from this bill.

The National Development Plan prioritises childhood education, yet early intervention centres for children like these are inaccessible.

What then does this mean for a parent of a child with autism?

There is only one dedicated state school for children with autism in the Eastern Cape and there are a few others with autism “classrooms”.

However, with estimates of one in 68 children on the autism spectrum, this sole autism school has a waiting list that may stretch up to three years for placement.

This leaves many hundreds, possibly thousands, of autistic children in limbo, without any immediate prospect of starting school, let alone going back to school.

Furthermore, in rural areas there are no suitable schools at all — they simply do not exist, although policy and legislation argue for the placement of these children in inclusive educational settings.

Are implementers of these policies aware that there are different levels of severity of autism which require various levels of support?

Children like my son will not thrive in an inclusive setting, for example, because they are non-verbal, still need prompting to go to the bathroom, have low muscle tone, sensory issues and do not do well in social interactions.

Imagine this: parents want to know how the school supports their children with sensory processing difficulties, gross motor limitations, reading using technology and writing or drawing.

Which school must they go to?

I often wonder if society has noticed that because of the few public schools for children with autism, there is a mushrooming of private centres.

Some of them, I admit, have managed to provide a reasonable education for these children, while others have not.

Those active in the Port Elizabeth autism community hear horror stories of one so-called special needs centre in particular, but can do nothing unless the parents themselves take appropriate action.

The desperate parents are reluctant to do so because there is such a shortage of alternatives.

The major challenge is that suitable schools are inaccessible because of exorbitant school fees.

Not all parents are middle class and live in the suburbs, hence in some areas everyone and anyone opens a centre.

This is concerning because in SA we are already experiencing a multitude of early childhood development centres with staff who are either underqualified or unqualified.

This is partly because, with a recommended teacher to autistic pupil ratio of 1:6, it is costly to run a professional facility (qualified staff are vital, and must be paid a fair wage).

My major concern is the capacity of teachers of children with autism.

Children who are going “back to school”, I assume, are taught by teachers who are qualified to teach; can read and write comprehensive reports; have content, disciplinary, pedagogical and fundamental knowledge, coupled with experience of teaching either during their own learning or years of teaching.

But who capacitates teachers in autism centres? What certification do they have?

How many years of training do they go through to acquire the knowledge to help my child — and the thousands of others alluded to earlier?

When the government talks about building schools, who does it plan to have teaching in these schools?

Are there conversations between parents, faculties of education and the department of education?

My point is this: “back to school” is a dehumanising experience and a form of social injustice for parents of children with autism.

These families struggle to get their children into a public school with affordable fees, adequate resources and qualified teachers.

Parents cannot sit back and accept the status quo.

Society has a role to play and must mobilise itself to have its voice heard by the government.

• Nokhanyo Mdzanga is a parent of a child with autism and a teacher educator at Nelson Mandela University. She has a personal blog on Facebook “Seems like it’s my destiny”. The views expressed in this article are those of the author and not Nelson Mandela University. Contact her on Nokhanyomdzanga@gmail.com