Autistic children often function within their own reality. They might struggle to fully grasp the concept of abstract ideas, such as Covid-19. However, the virus has had an enormous impact on them and the people around them. How does a masked world affect these children and their families? Lezanne Steenkamp writes for MatieMedia.
Autism is a neurodevelopmental condition. The autism spectrum is divided into different levels and each individual that is categorised by these levels is unique, with no case being similar to the next. “If you have met one individual with autism, you have met one individual with autism,” says Ronelle Slabbert, speech therapist at Ronelle Slabbert Speech-Language Therapy in Stellenbosch.
This condition manifests in sensory processing differences and is characterised by difficulties in social interaction and communication, says Marina Retief, educational psychologist at the Neurodiversity Centre in Paarl. These individuals long for predictability, routine and are classified by contextual blindness, which Retief describes as, “the challenges of a person that doesn’t naturally grasp all the factors that make up a situation.” This concept usually results in extreme anxiety.
An autistic child is doing fine motor skills exercises to enhance his abilities; these exercises serve as an important component of children’s development. Autism affects these abilities and therefore requires constant stimulation and development. PHOTO: Supplied/Heike Brink
This does not mean Covid-19, being an abstract concept, is absent in these children’s realm of understanding. According to Retief, it simply takes on a more practical sense, given by these children to gain a better understanding of it. This in turn has led to a lot of confusion, anxiety and disruption for autistic individuals, but also for the people surrounding their world.
Context-blindness in an abstract world
Lizelle Raath, principal at Boland School of Autism, describes context-blindness with an incident that occurred in one of the classes at school. The teacher was using a tangerine to stimulate a few students’ sensory activity by peeling it and allowing them to feel the fruit’s skin. One of the children was immediately overcome by anxiety, “for being exposed to the virus”.
Only later, they came to the realisation that the child’s mother had forbidden her to touch any of the fruits in the supermarket, “as it contains and carries the virus.” This example encompasses an autistic child’s sense of understanding – they take a very abstract concept and turn it into a literal conclusion, says Raath.
Being highly sensitive to sensory stimulation, autistic children have to familiarise themselves with the concept of a mask, says Heike Brink, kinderkineticist at HN Kinderkinetics in Durbanville.
Liam is a seven-year-old autistic boy. His mother, Ruby Wagner, urged Liam to wear his mask around the house, encouraging his siblings to do the same, in order to avoid friction and resistance from Liam. She was pleasantly surprised by Liam’s take on the concept, awarding the smooth transition of accepting the mask to the dinosaurs that are printed on it – Liam loves dinosaurs. The change in his routine was, however, the hardest, she says. This is because autistic children do not perceive and understand reality as other people do, they live in their own world – with their own rules.
Liam Wagner (7) was diagnosed with autism at the age of three. He loves dinosaurs and Sonic the Hedgehog, a character in a film released in 2020. Liam had to wear his mask around the house for a few days, to allow him to become more comfortable and familiar with it – before he was allowed back at school. He enjoys choosing between his two dinosaur-masks and his Sonic-one. PHOTO: Supplied/Ruby Wagner
“Autistic children are like popcorn, the pot can be the same size, you can use the same amount of oil – however, they will pop differently and only when they are ready,” Wagner says.
Slabbert describes this concept with the following: “You cannot simply take these children out of their reality and into yours. You have to step into their reality first – this could practically mean levelling with them physically, from there you can systematically lead them to a ‘shared reality’.”
According to Slabbert, it is best to take the child’s lead in this reality, to be able to gain a better understanding of how their mind functions, and why they do what they do.
Liam plays with his dinosaurs in his ‘safe haven’ – at his home in Boschendal estate, outside of Paarl. He constantly disappears into his own reality and can play by himself for hours on end. PHOTO: Supplied/Ruby Wagner
Routine
Even though many autistic children have the ability to function within this ‘shared reality,’ they will still add their own set of rules to it. According to Brink, it allows them to understand themselves and the world around them better – it also creates a sense of security. This is called routine.
Ulrich Heins, an eight-year-old autistic boy from Paarl, functions optimally within a routine. “This is where the biggest challenge of lockdown rooted itself,” Toanette Heins, Ulrich’s mom, explains.
Ulrich Heins (8) was diagnosed with autism at the age of two. He loves jumping on the trampoline and he uses it as a tool to self-soothe, when he is in a bad space. A trampoline allows autistic children to work on their ability to control balance, improve their awareness of space and their bodies’ positioning in it. It also unconsciously teaches their bodies how to interpret the signals that are being sent to their brain. This is according to his mother, Toanette Heins. VIDEO: Supplied/Toanette Heins
“It is different for a normal child. I am Ulrich’s mother not his teacher; and he knows this.”
Heins says that she failed at taking an approach of, “let’s do this little bit of work, then we can play”. Ulrich does not function like that. She says that if he doesn’t want to work, he won’t work – forcing him otherwise results in stims and even in meltdowns.
Stimming is a self-stimulatory behaviour, that is caused by an overstimulation of stimuli due to a sensory processing disorder. This behaviour is characterised by the repetition of physical movements, sounds or even words, explains Retief.
An overload of multiple stimuli can result in meltdowns. “Meltdowns are out-of-body experiences. They don’t know how to gravitate themselves in this overexposure of stimuli,” Wagner says. Pressing hard on their joints, placing weight on their laps or even rolling them up in a rug, helps.
An autistic child is walking on plastic dinosaur-paws. This exercise forms part of her routine-programme that she has to follow weekly, alongside her kinderkineticist, Heike Brink. This exercise stimulates balance, motor planning and foot-and-eye coordination. PHOTO: Supplied/ Heike Brink
“Lockdown creates gaps in these children’s cognitive, emotional and physical progress,” says Brink. “Every time they are unable to receive therapy in a stimulating environment, we lose progress.” These children are extremely dependent on other children, observing them and interacting with them – however, on their own terms, she says.
Unfamiliarity, such as the change in environments from working from home, the irritation of the masks and the anxiety that is at the very root of this pandemic causes these children to regularly act-out. According to Retief children on the autistic spectrum don’t completely grasp the environment around them, therefore they do not always know how to voice their anxiety or the fear they are experiencing.
Liam loves animals, being outdoors and doing arts and crafts. However, when he is in a bad space, it is simply impossible to focus his attention to anything he doesn’t want to do. Heike Brink, his kinderkineticist, says that apart from stims and meltdowns, these children can easily lose focus. She describes it as, “literally seeing them lifting off the face of the earth and into their own realities”. Once there, it is extremely hard to attract their focus back to the exercise they were busy doing. PHOTO: Supplied/Ruby Wagner
“An uncertainty about what is expected of them, a lack of stimulation, as well as a lack of routine causes anxiety for these children,” Retief says. They also pick up on their parents’ anxiety and fears, however they do not completely understand it.
The impact on parents
The pandemic has a big impact on parents of autistic children, Retief says. They are expected to fill the role of all members of their child’s multi-disciplinary team, such as the speech therapist, teacher and occupational therapist – all whilst maintaining a day-job and ensuring a financial income.
“I work on commission and children with special needs are extremely expensive,” Wagner says. More than that, it is not a matter of accepting help when needed; seeing that Liam wouldn’t take to strangers who may offer help.
Ruby Wagner, Liam’s mother, had to take on the roles of teacher, occupational therapist, speech therapist and psychologist, whilst maintaining a full-time job during the national lockdown. Wagner is assisting Liam in his weekly kinderkinetics programme. PHOTO: Supplied/Pawel Wagner
“These parents are struggling,” Brink says. Financially, parents are forced to find alternatives for the sake of their child’s development. Lockdown has enhanced this struggle.
“You just hope that the choices you make in this reality we are forced into, is the best option for your child; one can only hope,” Wagner says.