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Autism is more than just speaking late or sensory seeking and defensiveness. Breaking the myths, stigma and misconceptions around autism was the aim of an Autism Spectrum Disorder expo hosted by the Klipfontien Mitchells Plain Sub-structure of the Western Cape Department of Health and Wellness.
The event, which saw parents, guardians and experts in the field come together, also encouraged attendees to network and get to know others who may have similar experiences.
The event, hosted at Lentegeur Hospital on Wednesday 3 April, also commemorated Global Autism Awareness Day on 2 April, and Autism Awareness Month, punted in South Africa.
Dr Dave le Roux, a paediatrician at Mitchells Plain district hospital, says denial about this condition can happen to anyone. His son, Ben, had presented with some commonly associated behaviours from a young age – such as being sensitive to noise, shaking his fingers and walking on his toes.
“His preschool teacher asked us if he may be on the spectrum. My wife and I said, No! we are doctors, we would know,” he shared during the event.
Having taken a keen interest in differently abled children, he encouraged parents to continue to do what works for them. “I know a lot as a doctor. But you know your child the best. You are an expert in your child,” he said.
Dr Sahmi Moodley from Red Cross War Memorial Children’s Hospital encourages patience and understanding in figuring out who children are. Using a bouquet, Moodley demonstrated the diversity of the spectrum by saying each flower needs different conditions in which to flourish.
“Autism is different for everyone of our families. “Autism is more than just speaking late. It will be different for everyone of us and that is the spectrum,” she says. Working with Autism for many years, Dr Mark Richards, also from the Red Cross, said that while he may be considered an expert in the field, he agreed with Le Roux that parents remain the experts for their children.
“There are far more children with Autism than with any other disability, both intellectual or physical. Autism is the biggest by far,” he said.
“No one understands Autism better than you can. The problem is Autism presents to us often as a talking problem and they go to speech therapists. But it is not a mouth problem. Autism is not a sickness and you cannot cure it.”
He continued that many behavioural conditions could affect people with Autism differently. Estimating around 1% of the global population to have Autism, Richards said there was a possibility of many parents in the room being undiagnosed as on the spectrum, owing to this being a genetic condition. Parents were also encouraged to look after themselves to best look after their families.
Shabaana Osman, a registered counsellor, said: “Being a parent takes a lot out of people. Often, when we take care of others, we neglect ourselves. Then, we see parents at the day hospital being diagnosed with depression and anxiety because they are just surviving. In order to best support our families, we need to look after ourselves.
”Following a networking walk around the hospital grounds, parents could also engage with exhibitors, which included Carbonado Energy Autism Centre, Autism South Africa, Ernie Els Foundation’s Els for Autism South Africa the department’s rehab care workers, special schools and more. Eugenie Burt, whose five-year-old son Kian was diagnosed on the spectrum, joined the expo.
“We only received the diagnoses last year. He has improved a lot with his speech, but there is still a bit of a delay,” she said. “It comes with a lot of responsibility and patience. We actually adjusted very well on how to maintain and work on his level.”
Burt participates in the department-funded group sessions with rehab workers, which include Occupational Therapists, Speech Therapists and social workers.
“We do group sessions with other parents twice a month at the Town Centre library with the speech and occupational therapists where they also give us tips on how to manage.” Looking back in hindsight, Burt continues that Kian became non-verbal at one and would point at items rather than verbally communicate. This was their first sign.
“It was a huge adjustment for us as parents, thinking what is wrong with our child, but then we came to terms with it and with God’s grace and help, we had to adapt. There are some parents that are very in denial, and I don’t think there is enough information.”
Burt continues that more can be done to create awareness around the condition and the available help for struggling parents. Insaaf Mohammed, the Occupational Therapist at Heideveld CHC, said working closely with referral hospitals, there has been an influx of ASD diagnosed children referred to rehab care workers.
“There are a lot of myths about ASD. A lot of people don’t understand a diagnosis. Parents of children who are diagnosed or show symptoms of ASD don’t understand their children, let alone the families. This is the need for expos like this. To build relationships, build awareness and destigmatise the condition,” she said.
She continues that doctors are diagnosing much earlier and the health profession is improving in seeing symptoms, aiding in early intervention. Grandmother Alzita Lippert also attended the expo for the first time. She wore a T-shirt proudly boasting about being a grandmother to an autistic child. When her grandson, Zeke, was a year old, she asked his father to have him seen by a speech therapist for being non-verbal at the time. Now three, Zeke had been for speech therapy at Red Cross and YMCA Athlone.
“For me, I am walking the journey because this is my grandson and he did not ask for it. I love him to bits and we are with him on this journey. Parents must just accept it. Do not deny it. There are a lot of people who do not understand it. You must have patience,” she says.
“Sometimes you get frustrated, but you realise after you must not do that. He is very intelligent. I think this expo is beautiful.”
