ATLANTA, Georgia — South Africa has the highest rate of Fetal Alcohol Spectrum Disorders (FASD) in the world, with some communities experiencing a prevalence of up to 28%. FASD encompasses a range of conditions that affect people who were exposed to alcohol before birth. Often those diagnosed on the spectrum struggle with mental, emotional and intellectual deficits as well as physical conditions. In developing countries like South Africa, mental healthcare inadequacies prevent people with FASD from receiving the appropriate interventions and treatments. The Borgen Project spoke with Jaco Louw of the Foundation for Alcohol Related Research (FARR), an organization focused on using education, prevention and awareness campaigns to reduce the prevalence of FASD in South Africa.
FASD in South Africa
South Africa has very limited resources for mental health. Only three of the nine South African provinces have reported their mental health spending. The highest reported was at just 8% of the province’s overall health budget. There are 0.32 psychologists per 100,000 people and even fewer psychiatrists. These are bleak figures for people requiring mental health intervention, like those who suffer from FASD.
Prevention is the most effective strategy for FASD as it is more cost-effective. Additionally, there are simply not enough resources to provide adequate intervention for those with FASD in South Africa. Most importantly, FASD is a completely preventable condition. There are an estimated seven million South Africans already living with FASD. As a result, raising awareness is a priority for organizations like FARR, as is intervention.
FASD and Stigma
There is an extensive list of support mechanisms that would benefit children and adults experiencing mental difficulties associated with prenatal alcohol exposure. Louw notes that an ideal situation for a child with FASD in South Africa would include these support mechanisms. For example, every child should have access to a school psychologist, a stable home environment and a support system or an “external brain” to help the child by providing oversight in making decisions.
Currently, South Africa cannot provide the resources needed for an ideal situation. While providing insight on prevention and intervention, Louw emphasized the significance of stigma in how South Africa, and the world, frames FASD. FARR is focusing many of its resources on educating communities within South Africa to improve the stigmatization, and as a result, improve the lives of children and adults living with FASD.
The Two Types of FASD Stigmas
Those affected by FASD in South Africa face two kinds of stigma. The first is a lack of understanding about willingness versus ability. According to Louw, children diagnosed with FASD are seen as difficult because there is a stigma that they are uncontrollable and volatile.
FARR challenges this assumption by educating community members to empathize with their peers who may be facing challenges associated with FASD. It is not an unwillingness to perform actions as they are instructed, nor is it a willful disobedience for children and adults to act in a way that is contrary to social etiquette, or even the law. It is a neurobiological inability to understand what most people learn implicitly.
The other notable stigma takes its form in attaching a “hopelessness” to people with FASD. While Louw notes that there is a cognitive inability to understand what most people learn with ease, those with FASD are not incapable of being “valuable members of society.” This stigma of FASD being a “lost cause” can be incredibly detrimental if resources are not provided for FASD awareness and interventions.
Mothers and Stigma
The basis of prevention campaigns is to make sure children are not exposed to alcohol before birth. Historically, when framing FASD prevention, the focus is on the mother. There is an emphasis on ensuring the mother does not consume alcohol during pregnancy. As a result, there is also a tendency to blame the mother when a child is diagnosed with FASD.
According to Louw, this stigmatization of the mother is detrimental in two ways. Firstly, in its ineffectiveness to prevent prenatal alcohol exposure. Louw notes that there is no scientific evidence to support fear-based campaigns directed at mothers. Therefore, FARR aims its preventative measures at the entire community so that FASD becomes a societal responsibility.
Louw explains how a mother is part of a social network and the people around her have an influence on how the pregnancy proceeds. So, FARR tries to make the people around the mother aware of the dangers as well. FARR explains to them how they play a role of support. But, FARR asserts that support is more than just telling someone to refrain from drinking. Support means creating a positive home environment where the pressures to use alcohol are less.
Secondly, placing the sole responsibility of FASD on the mother often hinders efforts to diagnose children. If a mother knows she consumed alcohol during pregnancy and sees her child experiencing developmental difficulties, she is less likely to seek help, fearing retribution. According to Louw, an issue in prevention is that associated stigma deters people from seeking help.
Stigma and Language
The language people use is a significant part of stigma. Using phrases that implicate the mother as a sole perpetrator and labeling children with FASD as irreparably damaged or deviant has no value in prevention or intervention. The U.S. organization, National Organization on Fetal Alcohol Syndrome (NOFAS), advocates for those diagnosed with FASD. NOFAS released a statement on the harm language can do and how to use it more effectively when talking about FASD. This statement guides FARR on how to use language to reframe the discourse around FASD, and in turn, how to more effectively reduce the prevalence.
People with FASD in South Africa face many challenges, stigma should not have to be one of them. Many well-known, worldwide organizations still use stigmatizing language when talking about FASD. Fortunately, organizations like FARR and NOFAS are challenging these stigmas through awareness, education and language, essentially reframing how the world interacts with FASD-affected individuals.
– Emma Maytham