Are Autistic Children Being Treated Fairly? | ZwavelStream Clinic
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March 4, 2019
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April 9, 2019

Are Autistic Children Being Treated Fairly?

 

Children with Autism

Despite advocating for autistic children’s right to education, South Africa is failing miserably at enforcing it.

As a result, only a small percentage of children identified with autism currently attend school. Added to this, the schools in question are almost all private institutions catering exclusively to special needs, with exorbitant fees. When it comes to public schools, admission has its own challenges. This is because there’s always a back and forth – children are either too autistic for mainstream, or not autistic enough for special needs placement. But worst of all, in the midst of this broken system are children who aren’t getting the treatment they deserve.
 

A most pleasant boy

Maison is the eldest of two (nearly three) children and lives with his mother, stepfather and brother in the East of Johannesburg. Lexy speaks fondly of her little champion, describing him as a happy child who doesn’t come across as stereotypically ‘different’. In fact, Maison loves everything little boys his age do – Ben 10 and Paw Patrol, swimming and kicking ball. He absolutely adores animals, and has a quiet, gentle nature about him. This nature is unsettled around sudden, loud noises, or when he is presented with ‘icky’ food options, and big crowds. Which all sounds rather typical for a child his age, doesn’t it? However, there’s nothing typical about Maison’s story. When he was almost three years old, Lexy felt she had to look deep within her beautiful boy. Along with his father, she was concerned by his lack of speech. It occurred to Lexy then that Maison might be on the spectrum.

A Journey Begins

In 2016, with growing concerns about Maison (4) being a late speaker, Lexy took him to see an occupational therapist. The therapists visual observation of Maison was all she needed to advise Lexy that her son was indeed on the spectrum, and that he needed further assessment.

Lexy approached a remedial school in Johannesburg in 2017, asking to have Maison assessed. It was the next year when they received the report that officially diagnosed her son with high functioning autism, ADHD (attention deficit disorder with hyperactivity), and apraxia of speech. As parents, we understand the hardships, sacrifices, and challenges that come with our duty. However, there are occasions where we have to rise over and above in order to achieve what’s best for our children. Lexy’s journey with Maison is a perfect example of this. She has been battling with SA’s education system for years, and for nothing else but the most basic human rights her child deserves.


Coming to terms

Lexy was understandably heartbroken by the diagnosis. Although she always had a feeling that Maison was on the spectrum, it was particularly difficult to watch him undergo the assessment. Watching her son fail at things that other children his age could accomplish was especially hard. It came with a realization that although she understood Maison and his non-verbal ways perfectly well, her son would have to grow up in a world bigger than the one he was in. He would have to learn skills to successfully navigate that world and the people in it.

The therapist was kind and sympathetic, assuring Lexy that Maison would be just fine. He would need medication to help him focus, as well as therapy. She also advised Lexy to start looking at remedial schools. This would prove to be the beginning of an arduous process. Because of Maison’s non-verbal traits, he would have to be assessed to see whether he was eligible to attend a particular school or not.

Down The Rabbit Hole

Lexy began in earnest, researching every private school in the surrounding area. Needless to say, she was let down each time. This was mostly due to the high fees in question. She then accepted that her only option would be to find a place for Maison in a government remedial school. However, the search for placement quickly became one of the hardest things Lexy has had to do. Starting in 2017, she has fought with heads of schools, the district office, and the department of education. And even now, in 2019, the process is still ongoing.

The story so far: A psychologist at the district office supplied Lexy with a signed document to have Maison placed in a school by 2020 (hopefully). This was not a guarantee, but simply added Maison to a waiting list in the hopes that he would be enrolled in a remedial school most suited to his needs. He is also a candidate at a new school for autistic children which was opened by a mother frustrated by the fact that she couldn’t find placement for her own son. Conversations with the Gauteng department of education and therapists at remedial schools in other districts have all come to nothing.

Up to this point, Lexy has had to keep hearing over and over from several potential schools that either her son was “too disabled” or “not disabled enough”. And as much as people in high places all agree Lexy and Maison’s case should have been handled better, no strides have been taken to correct this at all. Not even social media – a platform that has brought about revolutions in some countries – could help the situation. So far, all of Lexy’s endless efforts have come to nothing.

What this means for Maison

Lexy expressed that her deepest frustration with this delay is that Maison is missing out on significant development. Naturally introverted, he’s a boy who wants to socialize. In a school setting, Maison would be exposed to learning vital social skills that will allow him to make the friends he wants. Instead of feeling isolated and learning on his own with his mother, he could be part of a group. And it is just this group environment that will do wonders for Maison’s self-confidence. How else will he grow to integrate into society as a responsible citizen? In the meantime, Maison is at an age where he should be starting to count, attending regular speech therapy, and learning to establish relationships with his peers

This major flaw in our education system is depriving so many children like Maison. And it’s not just the social aspect, but simple things like learning to colour and build sentences. So much importance is being placed on putting children “where they belong” that nobody is noticing the cracks through which far too many children are slipping. The waiting lists, the endless assessments, the countless hoops to jump through… Unfortunately, no amount of apologies and sympathy for their plight will help Lexy and Maison. A serious reworking of the system is required, and urgently.


The Way Forward

In the past, special needs schools assessed and placed children in their own capacity. However, a few years ago this authority was exclusively handed over to the government. This is when the problems started. Now so many parents are left feeling helpless, and too many children aren’t receiving the therapy and education they need. Lexy strongly believes that a move back to the old system is what will help. When the right people are meeting and dealing with the children in person – instead of making decisions based on paperwork – the process is sure to run more smoothly.

Lexy’s advice to parents going through the same battle is this: don’t give up. As exhausting and frustrating as the process and procedures can become, it’s imperative that you keep fighting. Ask questions, don’t be afraid to disagree, make the calls that need to be made. Because of course it isn’t fair that we as parents have go to these extreme lengths, but at the end of the day it’s in the best interest of the children.

And this advice is golden. It’s how we make sure the people in their district offices, hiding behind mounds of paperwork, learn to put a face to the black and white ink. It’s how we make sure they understand the urgency and fight just as hard to give our children what they deserve. Because only once we demand accountability, will this broken system begin to transform. Is it fair that children filled with potential are excluded from social groups and education? As parents, we have to be the voices of all the children who cannot speak up for themselves. We have to make sure we exhaust every avenue until they have no choice but to follow through with what the Constitution claims.

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