Guidance: APP Autism founder Yvette Young teaches life skills such as cooking, cleaning and working with money to adults with autism. (Delwyn Verasamy/M&G)
The education department and the private sector have provided significant support for children with autism — but this is severely lacking for older adolescents and adults.
There is not enough education about autism and those with the disability are stigmatised, marginalised by society and hidden by their families, according to Jackie Selley, the director of the Centre of Autism Research and Education, who is also an occupational therapist.
“Autism is a lifelong neurodevelopmental disorder. Children with autism will develop into adults with autism thus there is the need for support throughout the lifespan of the individual,” Selley said.
Autism spectrum disorder affects the ability to communicate and interact at various levels and each child has different skills and challenges.
“There is a lack of understanding about what is meant by ‘a spectrum’ and the public tends to interpret autism as either The Good Doctor [an American TV series], or as a child so entrenched in their own world that they can not interpret or contribute to what is going on around them,” Selley said.
She said the social development department provides little support for adults with autism and they are not accommodated in work and community spaces.
The autism “sector” requires support and development beyond the government, Selley stressed. “Companies [don’t] employ and empower adults with autism, there are very few grants, bursaries and programmes that support the development of skills for adults with autism and equity is very poorly understood and established.”
According to the South African Journal of Childhood Education, there are no reliable prevalence studies giving figures of people living with or affected by autism in South Africa because of stigma, poor access to medical interventions, under-diagnosis, over-diagnosis and cultural misperceptions.
April is World Autism Month, with World Autism Awareness Day observed annually on 2 April. At the beginning of the month, Gauteng MEC for education Matome Chiloane reiterated the importance of the government creating the best conditions for people with autism.
He said the government should improve infrastructure and resources in special needs schools so that there is a balance in all of them, noting: “My predecessor, who is now the premier of Gauteng, Panyaza Lesufi, always emphasised that learners with disabilities are not third-class citizens.”
The MEC spoke about the effect autism has on families, saying it can be stressful to meet the complicated requirements of a person with autism.
“I am sure as parents of children with autism you understand how expensive occupational therapists are. Every parent wants the best possible relationship with their kids. Children with autism experience fear and frustration in social situations, but parents may help children acquire confidence, especially those who are on the high-functioning end of the spectrum,” said Chiloane.
Thandekile Moloi, the mother of an autistic child, told the Mail & Guardian that parents of such children face many stresses and have to deal with their own grief in relation to adjusting to the diagnosis.
“I always have to deal with people questioning why my four-year-old is unable to speak and is not socialising with other children. This whole thing is really getting to us as a family,” Moloi said.
Selley confirmed that there was significant social stigma as well as pressure, often from family members, who are critical of the medical treatment and their parenting skills.
“Parents often feel cut off and isolated from society where their child doesn’t act the way that society expects them to [and] there is significant expense related to the therapies and schooling that support the development of an autistic child,” she said.
Irene Mathenjwa, the mother of 17-year-old Zekwande who was diagnosed with autism at the age of two, said she went through a lot of trauma when told that her son would never be able to speak or do anything with his life.
But Zekwande proved them wrong, and is now an advocate for others like him and changing people’s perceptions of nonspeakers.
“My journey has been a very difficult one where, as a parent, you want to do everything to the best of your ability. You want to go around to find medication, therapists and so on,” Irene Mathenjwa said.
She said Zekwande went through various treatments including hyperbaric oxygen therapy, applied behaviour analysis therapy and stem cell therapy. Then he was introduced to a methodology where he speaks using a stencil tool.
“He types out words and constructs sentences. That is the point where we got to communicate with him and understood his emotions.
“The first thing that he said to us was, ‘Why do you want to change me to become like you because I’m happy with the way I am’. So, we have to accept autism and Zekwande’s journey.”
Zekwande’s mother believes he has found his purpose in life, which is to reach out to autistic children, particularly in rural areas where most do not have the opportunities he has had.
Through his Zekwande Foundation he counsels parents and other people so that they can better understand autism and what it is like to live with the disability.
“I just want to say to all the parents of children with autism that there is nothing wrong with having a child that is autistic. As my son always says, autism is a body and mind disconnection, but the brain, mind and intellect are very much intact, just their body failing them,” his mother said.
According to Selley, receiving a diagnosis of autism for one’s child is difficult and parents need to allow themselves the space to move through the process. Starting intervention and support at the earliest possible stage and building a team of support for the child is important.
“Development of a child, any child, is a journey, and it is no different for a child with autism, although their development will be different as their brains develop differently,” she said.
“Your child with autism will develop into an adult with autism but always believe in their potential.”