Autism South Africa fights uphill battle for national awareness, support
Autism awareness campaigns, and support on a national and local level abound in the United States and many European nations. While such programs are constantly adjusted and improved, there are many parts of the world where autism is covered up, out of the public eye; where there are no television programs featuring celebrities promoting autism awareness, no radio coverage. In these places, the understanding, even the acknowledgment of the existence of autism is virtually absent. Startlingly, one of these places is South Africa.
When most in the US or UK think of South Africa, we conjure up images of the cosmopolitan capital of Johannesburg, which is also hosting the World Cup this year. Amazingly, this nation has virtually no support for those with autism, and what support there is comes thinly funded despite the massive amount of need.
While organizations such as Autism Speaks in the US have dozens of staff members, Autism South Africa has staff of four. Louise Taylor, Outreach Officer for ASA, succinctly stated, “In reality, we have no money for this project.” According to Taylor, while funds are annually solicited from the government, the amount of bureaucracy and delays involved provides paltry response to the programs the ASA is trying to develop across the country. And as so few people in South Africa are aware of what autism even is, this further complicates outreach to the private sector.
“Those with autism and other developmental issues are hidden away here,” continues Taylor, “people are simply not aware of autism.” To provide additional context beyond autism, she notes that even the stadiums for the 2010 World Cup do not have adequate facilities for those with disabilities.
Despite lack of funds, the ASA forges on with grass-roots awareness programs, conducting weekly “information sessions”– which are free, informal gatherings to teach people about autism and provide basic information and paths for support. They also have created informational brochures, translated into several African languages, and a directory of local therapists and private service providers.
ASA’s efforts, though enthusiastic, are grass-roots and reach only a few at a time. Last year the ASA organized a national conference, which several hundred people attended from around the country. They also regularly send two of their staff into the more remote areas, often places where there is limited and sometimes no electricity. In such rural communities, children with autism are often thought to be “possessed,” tied to trees, and force fed hydrochloric acid to “vomit the demon” out. When at last these various “treatments” have been exhausted, the mother is often expelled from the local area, her child, shunned. Lost and alone, she must move to another town to find hard-to-come-by work to support herself and child.
ASA’s efforts are slow going, and represent a daunting task for so few to try to reach so many. Taylor remarked, “What we really need are some traditional media awareness efforts – television and radio, particularly radio – which can reach the more rural areas of the country, so that people understand what autism is.” Her ideal scenario would be to combine these general awareness efforts with an increase in weekly information sessions and to bring a regional conference to each of the nine provinces of the country annually so that those who could not travel great distances could benefit from the information.
For further information on Autism South Africa, or to make a donation, please visit http://www.autismsouthafrica.org/