Autism remains a somewhat misunderstood condition amongst the majority of South Africans, however it is something that affects a staggering 1 in every 88 children worldwide – and this number is rising.
As autism impacts boys five times more than girls and this puts the odds at 1 in 54 boys being affected. Those that do live with autism – both sufferers and their families – are often misunderstood and harshly judged. Recent research has found that there are few educational and therapeutic opportunities for autistic children in South Africa, and in fact less than 11% of children with autism in the country are currently receiving any beneficial intervention strategies, explains Kerri-Lyn Kelly, Director of the Els for Autism Foundation (SA).
“In South Africa it is difficult to know exactly how many people have autism as the condition is still so widely unknown and under-diagnosed. We are afraid to know just how many kids and adults are living in lower resourced areas, and even middle class areas, who do not receive a formal diagnosis as a result of lack of awareness and doctor training," says Kelly.
“In addition, there are many cultural barriers that we at times face in South Africa, particularly amongst the traditional African communities. Families may object to Western treatment and have difficulty accepting a diagnosis of autism as the word does not exist in their language. Furthermore, they believe in traditional healing techniques over intervention treatment.”
“The current level of awareness in South Africa is therefore something that needs to be addressed as a matter of urgency," cautions Kelly. “Although there is no cure for autism, specialised treatment provided early on can make a remarkable difference in the lives of many children with the disorder.”
According to the Foundation, autism is one of a group of serious developmental problems called autism spectrum disorders (ASD) that appear in early childhood - usually before age three. While some children show signs of autism in early infancy, other children may develop normally for the first few months or years of life but then suddenly become withdrawn, become aggressive or lose language skills they've already acquired.
Autism is a complex disorder that occurs as a result of disordered brain growth, structure and development, and is believed to stem from a genetic predisposition triggered by environmental factors.
Children with autism generally have problems in three crucial areas of development - social interaction, language and behaviour. But because autism symptoms vary greatly, two children with the same diagnosis may act quite differently and have strikingly different skills.
In most cases, however, severe autism is typically marked by an inability to communicate or interact with other people normally. Most parents of autistic children suspect that something is wrong by the time the child is 18 months old and, where possible, seek help by the time the child is two.
Some of the possible signs of autism include:
- No babbling by 11 months of age
- No simple gestures by 12 months (e.g. waving bye-bye)
- No two-word phrases by 24 months (noun + verb - e.g. "baby sleeping")
- No response when name is called, causing concern about hearing
- Loss of any language or social skills at any age
- Rarely makes eye contact when interacting with people
- Prefers to play alone
- Seems to be in his/her ‘own world’
- Odd or repetitive ways of moving fingers or hands
- Oversensitive to certain textures, sounds or lights
- Compulsions or rituals (has to perform activities in a special way or certain sequence; is prone to tantrums if rituals are interrupted)
While there is no conclusive evidence as to what causes autism, says Kelly, some factors are more prevalent than others. These include genetic factors, for example autism is much more common in both identical twins than in fraternal twins or siblings; language abnormalities are more likely in families of autistic children; and chromosomal abnormalities and other neurological problems are also seen more frequently in families with autism.
Family income, education, and lifestyle do not seem to affect the risk of autism.
While much has been written about a possible link between autism and vaccinations, studies have shown that neither vaccines nor the small amount of mercury used to preserve multi-dose vaccines cause autism.
Lack of knowledge and resources are the two main factors in South Africa’s shocking limitation on school and services available for children and adults with autism, states Kelly. Schools across the country specifically catering for autism can be counted on one hand, and even these schools lack the training, professionals, or resources to provide the best education for our kids.
Most families in South Africa can barely afford food and a roof over their heads, let alone expensive school fees.
“Autism is an extremely complex challenge facing so many families in South Africa”, concludes Kelly, “however there are so many other challenges facing the country that those with autism are often left behind. It is for this reason that campaigns such as the Autism Awareness Bear run by Build-A-Bear Workshop® South Africa for the month of April are so important.
By creating a unique and special Autism Bear, not only will funds for research be raised from the sale of the bears, but South Africans will also become more aware of this disorder and how it affects so many of our children and their families.”
