We chat to Dr Maggie Mojapelo about some of the biggest misconceptions about autistic children.
April 2 is World Autism Awareness Day and we are debunking myths about the condition.
We spoke to Dr Maggie Mojapelo, CEO and founder of Mediwell Digital Health, about the condition and what parents can do to help their autistic children.
Dr Mojapelo, who has a son with autism, is working on a coffee table book that looks at the real, harsh and challenging journey of autism.
She hopes to redefine autism from being a misunderstood condition to something positive.
Dr Maggie Mojapelo says children with autism interpret the world differently and are extremely intelligent.
Autism, she says, is a developmental condition that varies in severity. While no two children are the same, many often suffer from poor social interactions, some are non-verbal, while others can be are high functioning and can communicate.
Because each child is affected by the condition differently, the definition has been changed from autism to autism spectrum.
“It is not a disorder, it is autism spectrum condition. Just like diabetes is not a disorder, just like depression, they don’t say depression disorder. It’s a condition and we are bringing the positivity out of autism. Some of the autistic people in the world are the ones that make history like for instance it is said that Bill Gates is in the spectrum, Albert Einstein who discovered the light equation, he is on the autism spectrum and we can go on and on,” she says.
Dr Mojapelo says early diagnosis is important. Her son Kopano, who is now 33-years-old, was diagnosed with autism when he was around ten after changing schools 12 times.
She says one of the biggest challenges for parents is knowledge.
“If you don’t know that the child has got autism you’re heading towards a turbulent time. We didn’t know my son had autism and we had a difficult childhood because we didn’t understand some of the things that he was doing. Education is important because education is a challenge. The teachers don’t understand autism, the health professionals don’t understand autism, the specialists don’t understand autism. My son went to three psychiatrists and they said I’m reading too much into it and I knew that my son was different.”
She says sadly South Africa has poor resources to help families cope with the condition.
“We don’t have resources, especially for patients with limited resources. Most resources that are they are private and that is why we don’t find autism children living long especially in poor resource settings in Africa,” says Dr Mojapelo.
Dr Mojapelo is challenging government as well as funders to create dedicated medical centres of excellence and research for autism in South Africa.
“In South Africa where one in ten South Africans are born with autism, let us showcase the autism centres of excellence. I’d like to see them in all the provinces where there can be catchment areas for all these children during the day, and for when they grow up as adolescents and parents.”
Dr Mojapelo is also challenging life insurance and medical aid companies, as many do not cover people with autism.
“For some medical aids, autism is a condition that is not clearly understood and as it is it will not cover but it will cover us in certain conditions… My child [and I] are fortunate we’ve got resources. It’s in a private facility and he is the happiest,” she says.
Dr Mojapelo says there are also myths surrounding autism that need to be debunked.
They are bewitched
They say that the children are “bewitched because they walk alone, they wander, they are introverted, and they are not …They are just different. They do things differently.”
They cannot love
The other myth is that the autistic children “cannot express love or compassion, they are compassionless. This is not true. They express their love in a different way”
Vaccinations cause autism
“This myth has been cleared, autism is not caused by vaccination, so parents should vaccinate their children.”
Dr Mojapelo says people should love autistic children as they are.
“Love them unconditionally. My friends love Kopano unconditionally. They are different but not inefficient. They are declared imperfect, but they are perfectly ours.”