Education struggle is real for people with autism

Autism spectrum disorder (ASD) is a group of developmental disabilities that can cause significant social, communication and behavioral challenges, in varying degrees. It is life-long and is present from early childhood. Some of the red flags for autism are language delay, lack of eye contact if you call the child’s name or try to engage him/her, lack of social interaction, sensitivity to loud sounds, repetitive behaviour, and difficulty in handling routine changes, among a host of other symptoms. Although it is not clear how many people have autism in the kingdom, the fact is that there is a substantial number, substantial enough for relevant authorities to want to avail facilities targeted at improving their quality of life. 

In Swaziland there are many severe deficiencies in the world of individuals with autism and their families. These range from non-availability of medication sometimes, lack of a solid support system for parents, the stigma associated with the condition, and of primary concern, non-availability of ideal educational structures for children with autism.

I am very thankful to have conducted some interviews with some autism moms. Many are not willing to talk about their experiences with the condition. I do hope that as we continue discussing this condition, more people will come forward to share their stories, with hopes that when the powers that be read real stories from real people, the challenges surrounding autism in the country can be addressed. The general consensus in the autism community in Swaziland is that not enough is being done to foster inclusive education, especially in government schools. When people discuss educational inclusion, what immediately springs to mind are wheelchair ramps, braille, and equipment for the deaf. Those with intellectual difficulties are usually sidelined.

While most parents would have secured schools for their children several months before the beginning of the new academic year, those with autistic children will be tearing their hair out with absolutely no clue where to send their children. The choices are very limited, and are usually not ideal. Now, that is extremely sad because every child deserves an equal shot at life regardless of how they were created. Children with autism are not write-offs. They are quite capable of learning, but do so in a different way and at a different pace than typical children. We cannot preach acceptance or equal rights for people with disabilities when there are certain groups that aren’t being sufficiently catered for

A section of Mbabane

Parents of typical children have a wide array of school choices. When your child has autism and you are in Swaziland, you mostly have to settle for any school that will accept your child, even when, with a breaking heart, you can tell that your child is not really getting the help he needs.  A parent would sleep better knowing their child is getting the best care possible at school, and is not just getting tolerated or even being discriminated against.

This happened to Sakhile* of Mbabane when she enrolled her autistic daughter, Nomsa*, at a certain school. When she met the person who would be her child’s teacher, she was very upbeat and assured her that she knew how to deal with autistic children as she had also studied Psychology. Not long afterwards, Sakhile got a distressing text from the teacher, who said she couldn’t handle Nomsa anymore. She was hyperactive, would just walk out of class at will to just look around, and could not concentrate on one thing at a time. Sakhile took her to a local pediatrician so that she could get medication to help her settle down, but the doctor declined to do so. (The issue of medicating children with autism is a thorny one, and will be tackled in upcoming instalments).   The teacher said Nomsa had to come so school with an assistant from home as she could not cope on her own.  In her own words, “It would help a great deal and release some pressure off me.” Sakhile said there is someone she has a connection with, Nomsa behaves a little better.  She then decided to send her helper with the child, but the helper quickly quit her job because she did not want to accompany the child to school. She probably felt this was not what she signed up for.

Sakhile’s sentiment is that the teacher did not create a relationship with the child and wrote her off without even trying. Consequently she had to pull her child out of school for a few days to arrange for another assistant.  “The teacher’s complaints always implied that my child is a burden. When we first met her, she allowed the child to be and when we tried to control her, she would say, “No, leave her alone. Let her be herself!”  She said she did Psychology, but if you did psychology then you should know how hard your words would hit a person and you would choose your words carefully when you complain,” she said.

There are a number of private schools that are doing their best to equip themselves to include pupils with autism by providing the right amenities such as Occupational and Speech Therapy at the schools to avoid the hassle of children missing school, and their parents missing work on a regular basis to seek the treatments at hospitals. But what happens to those that cannot afford private schools? They do not get an equal chance at education and sadly just fall through the cracks. There are also quite a few preschools taking children with autism, but when they’re old enough to go to primary school, there are just not enough schools to accommodate them.

In the next instalment, we will discuss how the Enjabulweni Learning Centre came to be, and how it happens to be the dream school for many parents with autistic children.

Published in Swazi Observer on Sunday

*Names changed on request