SEATTLE, Washington — According to a 2018 article, 1 to 2% of the global population has been diagnosed with Autism spectrum disorder (ASD) or a “developmental disorder that affects information processing.” Usually, children are not diagnosed until 4 years old though symptoms are detectable at age 2. Research shows that minority groups struggle to get proper medical consultation when it comes to ASD. As a result, they are usually incorrectly diagnosed later in their lives or not at all. In South Africa, where treatment facilities are uncommon outside major cities, it is much harder for children to receive a diagnosis and even harder to find an effective treatment program.
Autism in South Africa
The actual number of children with autism in South Africa is unknown. There are no organizations collecting that form of population-based information. Research indicates that the number of children with ASD is growing exponentially worldwide. South Africa is no different. South Africans living in rural areas often don’t have access to high-quality treatment facilities, so they bring their children to a local clinic. A request to see another medical professional or receive further occupational treatment can mean more than an 18 month waiting period. In the past few years, however, things have changed due to a new focus on advocacy and awareness for Autism treatment in South Africa.
Professors Efforts for Autistic Children
- Petrus de Vries: De Vries is an expert in adolescent psychiatry and educator at the University of Cape Town. He has been working to bolster Autism recognition and research in Africa. Already a citizen, de Vries moved back to South Africa in 2012 to study Autism and its diagnosis within the country. After finding inconsistencies, de Vries adopted and implemented two diagnosis tools to improve upon Autism treatment in South Africa. He used an Autism Diagnostic Observation Schedule (ADOS) and an Autism Diagnostic Interview-Revised (ADI-R) to diagnose through social interaction between the specialist and patient. The examiner observes the patient’s behavior to determine whether the child has a developmental or communicative disorder. Soon after its implementation, de Vries translated the practice into Afrikaans, one of the official languages of South Africa.
- Lauren Franz: A professor at Duke University in North Carolina, Franz focuses her research on affected parents. She has adapted a therapy called the Early Start Denver Model (ESDM) to be used in South Africa. The technique is meant for children between 12 months and 48 months old. Parents and psychiatrists alike can use this form of interplay therapy to create effective social interactional skills in natural settings with positive reinforcements. The ESDM focuses on working with children to create a positive relationship and encouraging social and participatory behavior. Therapists must complete specialized training in order to obtain their certificate of expertise. This standard of training ensures that each professional is well-versed in ESDM and qualified for instruction and to provide treatment for Autism in South Africa.
- Nola Chambers: Nola Chambers is another professor at the University of Cape Town. She is a specialist in speech therapy and communication disorders. Chambers and her team created the Autism Navigator, which offers online tools to merge scientific data and interaction-based educational methods. The Autism Navigator has become a mecca of information for parents and professionals by providing statistics and educational suggestions. The site focuses on detecting ASD as early as possible in the child’s development. It achieves this goal by providing online learning courses to teach parents how to recognize behaviors that may indicate a developmental disorder. The source proved successful during its testing phase with 88-100% of users passing “learning assessments” set up to gauge their understanding of the given material.
Applied Behavioral Analysis
Ivar Lovaas and Robert Koegel developed Applied Behavioral Analysis (ABA) in the 1970s. This educational theory was originally founded on the idea that when a certain behavior received a positive reaction, the child will most likely repeat that behavior in the future. Since then, the theory has developed further and is a helpful educational strategy for children with ASD. This technique has been successful as an Autism treatment in South Africa, and all across the world.
Star Academy is a branch of the Center for Autism and Related Disorders (CARD). It has used ABA to create a huge impact. When working with Star Academy, each child receives an individualized curriculum to work on with a certified autism technician. In South Africa, when assessing a child the organization considers cognition, language, executive functioning, motor, play, adaptive, social and academic areas. The child’s needs are then met with a personalized behavioral plan to help them cope with environmental triggers as well as strengthen their communication and social skills. Star Academy currently maintains facilities in Johannesburg, Pretoria and Durban. It also has partner clinics in Ghana and Zimbabwe.
Autism South Africa (A;SA) is an advocacy group that fights for the rights and independence of people diagnosed with ASD. A;SA dedicates itself to supporting families and people with ASD. It leads educational awareness campaigns on the needs of children with Autism, amplifying the voices of those in the community. It recently announced a new early childhood development center that will allow for testing, individualized therapy programs and opportunities for social and communicative development. The organization hosts a yearly symposium, family support groups for parents and siblings and hands-on autism training with online courses coming soon.
Autism Western Cape started out as the Society for Autistic Children in 1967. It has impacted 1,592 boys and 329 girls with its autism support outreach. Autism Western Cape engages with the public to raise awareness for the needs and education of people with ASD. It offers post-diagnosis treatments, family training opportunities, counseling and workshops. Autism Western Cape works to aid people through diagnosis and provide support from that point on.
On April 2, South Africa celebrated World Autism Awareness Day. Due to the effects of COVID-19, celebrations looked a little different this year. Advocating independence for persons with Autism, Secretary-General Antonio Guterres called for accessibility within government responses to the pandemic stating, “Universal human rights, including the rights of persons with disabilities, must not be infringed upon in the time of a pandemic.” Other organizations, affected citizens and experts in the field are working to expand upon that foundational legislation to create more action and governmental support.
For South Africa, national understanding and advocacy for ASD are growing. The number of children with Autism may change, but education and treatment available in South Africa are continuing to improve.
– Alexa Tironi