Twelve-year-old Sipho’s big dream is to be a famous TV presenter. Sipho admires the way TV presenters speak – for her it is a “really cool job to have”.
For many years, Sipho could not speak properly. She now speaks both English and Afrikaans well, says her proud foster mother. Sipho loves children and energetically volunteers as an assistant at a first aid course on Saturdays.
However, unlike many other 12-year-olds, Sipho suffers from foetal alcohol syndrome (FAS). FAS is the most severe condition under the umbrella of foetal alcohol spectrum disorders (FASD) – a range of permanent conditions that can result from alcohol exposure to the developing embryo and foetus during pregnancy.
Besides Sipho’s irreversible brain damage because of her pre-natal exposure to alcohol, her arrival into this world was harsh. At the age of one she was violently raped and left to die in the veld. At the age of two she was diagnosed with a sexually transmitted disease (STDs).
Today, her foster mother says: “I can’t believe, 10 years on, how well Sipho is doing.”
However, it has been a tough 10 years for both Sipho and her foster mother. Similar to other children with FASD, Sipho has many learning difficulties. The pre-school that she attended classified her as “unteachable”.
In June 2010, Sipho was accepted at Amathemba, a project specifically for children suffering with FASD and who are unable to cope at mainstream schools.
The project was started in 2009 by the Home of Hope, a not-for-profit organisation based in Table View. Except for a few Pebbles Project farm pre-schools for FASD children, there appears to be no other primary or high schools with specialist programmes for learners with FASD. However, about 7 percent of Grade 1 children in the Western Cape are estimated to suffer from this condition.
“The progress Sipho has made since coming to Amathemba is truly remarkable. The child that we were told was ‘unteachable’ is now reading and writing,” says Ms Aisling Foley, the Amathemba Education for Learners with Special Education Needs (Elsen) unit project manager.
Foley tells me that children with FASD tend to be hyperactive, moody, aggressive and impulsive and have learning disabilities. The FASD child’s brain is the organ most affected by the intake of alcohol and this causes permanent brain damage. Typically children with FASD drop out of school early and they often begin to abuse alcohol or drugs. The Amathemba unit has 28 learners and the Home of Hope’s pre-school has six children.
I asked about the current prevalence of FASD. Foley provides the following chilling statistics on FASD: approximately 60 000 to 72 000 children are born every year in South Africa suffering from this condition. The Western Cape has the highest rate of FASD in the world. In a 2011 study, UCT researcher Elizabeth Katwan and her colleagues showed an increased prevalence and negative effects of FASD among children in the Western Cape.
These researchers found that maternal alcohol consumption, especially binge drinking, is strongly associated with childhood behavioural and/or developmental disorders. According to the NGO, the Foundation for Alcohol Related Research (FARR), FAS is “thought to affect at least 3 million people in South Africa, with more than 6 million affected by FASD”.
A FAS(D) situational and gap analysis study, led by University of Pretoria researcher Dr Kirstie Rendall-Mkosi, indicates that there is no surveillance system to collect information on the number of FASD cases diagnosed across the country. In addition, since diagnostic and support services are very limited in South Africa, it is unknown how many children and adults utilise various services, such as mental health services, or who are found in correctional services facilities, are in fact people with FASD.
Thus far, FASD prevalence studies have been conducted only in high-risk areas in the Western and Northern Cape and Gauteng provinces (eg De Aar, Upington, Wellington and Stellenbosch). Therefore, the true prevalence of FASD is unknown and so are the personal, social, economic, institutional and other costs of the varying detrimental conditions.
The high prevalence in certain risk areas, for instance De Aar and Wellington, may relate to psychosocial and socio-economic factors. Some sources attribute these environmental factors to centuries of colonial and apartheid oppression, dehumanisation and deprivation, such as the “dop” system (ie payment in the form of alcohol to farmworkers). These high-risk communities continue to live at the margins in a democratic state with many social ills.
Compared to the prevalence and the needs of children and adults with FAS(D), very limited resources are directed at prevention and support. Most services are provided by NGOs. Government departments have recognised the problem and do work collaboratively with the NGOs, however, there are many challenges within the public sector. Rendall-Mkosi’s study concludes that it is “essential that service capacity and provision be improved, especially in the education, health and social services sectors, so that the complex needs of the many people with FASD can be addressed as a matter of urgency.”
For example, Foley calls for attention to be directed at diagnosing behavioural problems related to FASD, as “most children don’t know that they have a mental health problem”.
Western Cape public health service clinicians confirmed the need for improved diagnosis of FASD-related mental health disorders among children.
Foley regards intervention at the educational level as important through raising teachers’ awareness of FASD and providing them with techniques to manage behavioural and learning problems of children as “teachers are struggling with managing children’s outbursts with class sizes of 40-45 children”. At the request of teachers, nurses and social workers, the Home of Hope provides training to these professionals on FASD.
The Department of Education’s IQ (level of intellect) criterion for accessing special need schools (Elsen) is regarded as very narrow and rigid by NGOs and a Western Cape Health Department school doctor responsible for 200 000 learners in the Cape Flats. Children with behavioural problems with an IQ in the range of 60 to 80 must generally remain in the mainstream schools with remedial support. However, the remedial support in many schools is inadequate and the teachers do not have the necessary skills.
This rule can deprive children with serious behavioural problems (including those with FASD) access to Elsen units. Children with FASD typically function lower than their IQ compared to those without the disorder, as the disorder can lead to severe behavioural problems. The IQ criterion highlights our educational system’s bias towards developing cognitive intelligence abilities and the extremely limited or non-existent development of emotional and social intelligence competencies (such as emotional self-awareness, empathy and emotional self-control).
Another important issue raised by both Rendall-Mkosi and Aisling Foley is the lack of support to women in general and pregnant women in particular. There are very few alcohol rehabilitation programmes and centres in the country, and those that exist are inaccessible to most women.
Based on the major gap in our knowledge of the prevalence, the severity and complexity of FASD in South Africa, and in particular in the Western Cape, FASD presents a monumental problem in this country. Despite the increase in research initiatives and the noble work of mostly NGOs and community organisations, including government over the past two decades, we are only seeing the tip of the FASD iceberg. Besides the few prevalence studies, there is a huge need for further research and longitudinal studies to understand what happens to the millions of South Africans with FASD, for example in the educational, health and justice systems. Are the different government agencies joining the dots related to the plethora of psychosocial problems and FASD?
As the school doctor poignantly laments: “The rights of kids with FASD have been violated from conception, their learning and social abilities compromised even before birth, with not much sympathy in the system because they are difficult, with no empathy from many of the adults in their lives and there is hardly any light at the end of the tunnel.”
The dreams of millions of the Siphos in this country have exploded even before their entry into their harsh world. This is an outrage! Is this the legacy that Nelson Mandela would be proud of – the revelation of the inhumane state of our society’s soul?