We are Autism Action South Africa, a registered nonprofit organization within the Republic of South Africa. We are based in Cape Town and have a database that extends to all in South Africa who have access to the internet. For those who don’t have access to the internet, we offer outreach services at the Red Cross Children’s Hospital and the Lentegeur Psychiatric Hospital.
We have also partnered with the Red Cross Children’s Hospital in Cape Town and the Lentegeur Psychiatric Hospital in Mitchell’s Plain, both of which primarily serve underprivileged communities. The goal of our outreach is to offer support, education, counseling and access to services to the parents, teachers, and professionals in these lesser affluent areas. These are primarily the parents and professionals who cannot afford access to the internet, so we bring our services to them on a personal basis.
We have partnered with the Alpha School for Learners with Autism based in Woodstock, Cape Town. The children at this school also come from the poorer, economically-disadvantaged communities in and around Cape Town.
We also do monthly outreach sessions in Mitchell’s Plain, yet another economically-disadvantaged community in Cape Town. Financial constraints for these individuals are paramount and they have no resource center in their community for education, awareness or support regarding autism.
Autism Action South Africa was started by me and my husband, Jazel and Paul Peterzell. Our daughter was 3.5 years old when she was diagnosed while we were still living in the USA. For personal reasons we chose to move back to South Africa, where Jazel is from. Upon seeing the dire situation regarding access to information and services for autism in the lesser-affluent areas, we decided to start our organization.
We work with the many varying cultures within the South African society and also with individuals of different religious backgrounds. We work with Christians, Muslims, Jews, and anyone else in between. Our goal is to empower parents with knowledge and support, one family at a time.
Our experience is that autism in Cape Town and quite a huge portion of South Africa is still very misunderstood and mischaracterized – regardless of race or income. The level of awareness and need for early intervention is not at an acceptable level. We have come across a lot of perjorative statements made about our population such as “retard”, “dunce-head”, “uneducable”, “demon possessed” and so forth – and those have been words that have been directed at the parents of these children from teachers and professionals who work with our kids.
Autism has changed the way we (Paul and Jazel) live-for the better! We do not believe there is an “autism epidemic”. Rather, we believe that there is an “awareness” epidemic. Autism has always been here and will always be here. History proves us to be correct. We particularly love Roy Grinker’s book “Unstrange Minds” which we support.
Educational options available for our children are little to none in the communities with which we work. Early Intervention Centers are nonexistent and parents are turned away arbitrarily from all education institutions as no one has the faintest idea what to do with a child with autism. Even parents who have the financial means to provide for their children are faced with minimal options. There are very few early intervention programs or even proper diagnosis options for our children in the lesser affluent communities. One of our goals is to get funding and support to bring these services and resources to the communities we work with.
Diagnosis and referral again is another area which is at an unacceptable level in the Cape Town area where we are based. Standardized training is very scarce to nonexistent at the governmental level. People who are trained are self-funded or bring in experts from the USA, Canada, Australia, the UK or Europe to do training. There are no registered BCBA’s in South Africa. Although some claim to be, we know they are not. There are a lot of snake-oil salesmen in South Africa claiming to be able to help children with autism with all kinds of fringe therapies. It is a goal of our organization to protect our parents by always advocating for scientifically-based therapies and holding everyone who works with our kids accountable.
Treatments and interventions are good if you can afford them. The challenge is that the reputable professionals are saturated and cannot afford take on any new clients. There is a dire shortage of qualified, reputable professionals to work with our children. There is a plethora of make-believe people calling themselves therapists and charging parents lots of money who are accountable to no one and have no formal qualifications when it comes to teaching and working with our population. The first and sometimes only option for many parents is Ritalin, Risperdal and any other calming medication. Behavioural therapy is not advocated as it is still relatively unknown both inside and outside of the autism population. Again, this is an entirely unacceptable practice for our organization. Ritalin and Risperdal are prescribed at an alarming rate when doctors are not even familiar with the individual with autism’s sensory needs and reasons for stereotypic behaviour.
Treatments in South Africa are still at the pre-infancy stage when compared to the US. Again, the bad choices outnumber the good choices by a huge margin. Unfortunately, parents are so desperate for help that they latch onto these unqualified people as they are sometimes the only option. Many professionals are not adequately trained in autism – regardless of what they say. A lot of times we have found they are doing the best they can with what information and training they have – sometimes with good results, sometimes with horrible consequences for the children and families.
Regarding adults with autism, there is very little to no access to resources or information. The major irritant that our organization has is the low level of expectation that some people in our society place on adults with autism and the belief that adults with autism are only able to do menial work. They have not embraced the notion of introducing technology to this population and see them as only being fit to make muffins, arts and crafts, and kitschy trinkets for sale!
Communication alternatives for the minimally verbal in the communities we work with are little to nonexistent. These children are left to their own devices and when they try to communicate with the skills they have, they are mocked, disciplined, hit or isolated from the families and communities.
This is the reality that we face when we work in the poorer communities in South Africa and that is why we have chosen to do so. South Africans are a resilient people with good heart and a hunger for education. We prize our children and will go to the ends of the earth to make sure that they receive the best. Our monthly outreaches are attended faithfully by parents wanting to make a difference in the lives of their children with autism and we are doing our best to help them. Their level of gratitude makes it all worthwhile.
There is a huge need for certification, training, support and resources and our organzation aims to fill in the needs where we can. When you visit our website you can see our CV of what we’ve accomplished since inception and we have been very well received. The dedication of the parents that we work with and the love and support of the communities we help makes it worthwhile.
It is the goal of our organization to start an early intervention center where people can bring their children for help, and also to encourage and educate everyone who comes into contact with a person with autism.
Director, Autism Action South Africa
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.